This topic of anxiety symptoms versus real ones has come up a couple times recently and I decided to do a blurb on "Somatization" or the appearance of symptoms that represent anxiety or psychiatric difficulty expressed as physical symptoms.
For the last week I have been doing reading and I will tell you that I come away both suspicious of the medical profession's take on this topic and confused about what I really know and what I want to believe.
I have always believed that people can express their fears, anxiety, and psychological pain with physical maladies. Afterall we all know by now that there is no real separation of the mind and body. As a pediatrician I saw babies children with vomiting and abdominal pain in response to parental fighting, or problems at home. Children with a parent with a back injury would begin to include back pain in their common complaints. My mother was a caretaker for my grandparents. My grandma was rather immature and always had vague complaints - as well as serious real ones. She would invariably end up in the ER within a day of any vacation my mother had planned.
We all know that some of this exists all around us. We all know people who truly live in great fear that every symptom they have is something dread and fatal. Or people that magically develop every symptoms they hear about. Okay. Those people do exist. But, I have also noticed that these people "know" they are anxious, but can't fight it.
I have to say, though, that after 30 years in medicine and another two on this forum, I am beginning to feel that there is a HUGE group of people out there with real disease that the medical profession is completely dismissing - all with good intentions. On one hand there is the recommendation to make sure people do not have something serious, but it is countered by equally strong recommendations to NOT "feed into people's neuroses" by doing a large workup.
When I look at the articles and psychiatric journals that describe this I tried to discern the characteristics of somatic complaints, the type of symptoms that they are calling somatic and how they presume to tell the difference.
First I looked at the lists of symptoms that are given as typical of somatic complaints:
Abdominal pain *
Back pain *
Chest pain *
Difficulty swallowing *
Excessive menstrual bleeding
Frequent urination *
Joint pain *
Pain during intercourse
Pain during urination *
Pain in the legs or arms *
Paralysis or muscle weakness *
Poor Memory *
Tingling in places*
Shortness of breath *
Vision changes *
* = things seen commonly in diseases like MS, Lyme Disease and Autoimmune disorders
I found the lists of symptoms completely unhelpful. Some lists led me immediately to a mental diagnosis of MS!
Then I tried to see what characteristics these symptoms seemed to have. This was "a little" more helpful. These are the things that frustrate the doctors caring for such people.
1) Symptoms are vague, yet described with very expressive and unusual language
2) Symptoms move around from place to place often, or they are fleeting. (I kind of agree with this one)
3) Sensations are felt "all over" with no ability to describe differences from one location to another. Examples, "I hurt all over." Or weak all over. Numb all over.
4) Symptoms that do not correspond with things found on exam. Example, the complaint that the legs are weak, but on exam the strength is completely normal or complaint of blurred vision, but acuity is normal.
5) Symptoms do not change, nothing improves them and no cause is found.
6) A history of many different symptoms for which a cause is never found and that eventually go away.
7) A recurring history of symptoms that occur when stressed, only to resolve.
I tried really hard to think through all of these characteristics and I was still not impressed that they were clues to somatic complaints.
The ones that I found most persuasive are 1) the complaints that are "global" and vague and constantly changing - hurting or numb all over without being able to pinpoint any differences (but, this can happen with people who are not very self-aware or who have poor skill in expressing themselves) 2) a patient's history that over years many complaints would come up and never be shown to have a cause, then would resolve only to be replaced by another, 3) the history that the symptoms dance around rapidly. Another big point here is that these people must never have suffered any kind of deterioration or disability related to their symptoms (but, of course this can be determined only in hindsight. This is not useful if you are looking at a disease which has a disappearing window for effective treatment.
But, when I thought about these points, they still didn't convince me that somatic disorders are widespread. Not all chronic diseases lead to disability. A person with Celiac Disease may just live their entire life with terrible abdominal symptoms (pain, diarrhea, bloating) but otherwise be pretty "healthy."
Another tip-off cited is when a person comes in with complaints in many different systems in the body. Uhhhh, does MS ring a bell? The hallmark of many autoimmune deseases and many infections, like Lyme Disease, is the vast nature of their possible symptoms. So, that criterion didn't impress me either.
Another tip off was "doctor-shopping." The history that the patient sought help from numerous doctors for their problems. This will be a whole discussion soon.
Finally, there was this "tip-off" that was frequently mentioned: The doctor finds himself frustrated and/or angry at the patient that seems to be wasting his time. If he's frustrated maybe it's because the patient doesn't have anything wrong.
So, what did I end up deciding? I still believe that many people have vague discomforts from internal stress. These come and go. But, I am more and more convinced that the medical profession is losing our confidence because of the diagnosis of "It's due to anxiety" is thrown out too fast and too early and is substituting for real thinking. And, too often real abnormal findings (on exam and tests) are ignored in the rush to blame it on the patient.
Finally most of the articles point out that all of the things that are mentioned above can also be seen in people with "real" disease. There are criteria for diagnosing people with somatic complaints. I have read them and need to find them again. And studies have been done to assure practitioners that the diagnostic criteria are quite accurate by following up with people and showing that they didn't actually have some real disease. The articles also comment on how hard it is to treat this "condition." Could this be because talk therapy doesn't undo real disease?
But, I still don't find that reassuring. In my mind our limbolanders might fit that "follow up", but does a lack of diagnosis "really" mean there isn't disease? For two years I was without a diagnosis after having been judged to be one of the Walking Worried. If you checked on me before I saw the right neuro you might have assumed that the diagnosis of "Somatic" was correct.
I am throwing these thoughts out for discussion. How do we know when we are having a "psychic groan" symptom? How does a doctor really know? How many of you have ever had a symptom that you were told was due to anxiety and you could see that it was likely true? When there are real abnormalities on exam, can the diagnosis of anxiety still be true?
Quix, we all appreciate the time you spent putting out your thought on this subject. It is a subject that each of us have thought about at least once or more.
One thing that I think doctors as well as patients need to understand about stress or anxiety induced symptoms is that although there may be a psychological or psychiatric component to explain our symptoms, that does not negate the fact that there could also be a concurrent and real medical problem that has just not reared its head high enough to show up on medical tests. When a patient is told that their symptoms are stress related, they may walk away feeling frustrated and angry or walk away in agreement with what they were told. I would rather walk away frustrated and angry because I am not one to give up if I know there is a problem. Quix, you are correct that you have to look for the right doctor. Doctor's hate seeing patients who appear to be "doctor shopping", but what about doctor's who "doctor shop" as my old neuro was doing by sending me for a 2nd opinion to one doctor and was suggesting that I go to a 3rd opinion with another neuro. He was looking for other doctors to agree with his suggested diagnosis of conversion disorder and when a neurosurgeon and an MS neurologist did not agree, well, that was when he started treating me differently by suggesting more follow-up. I think I have found my right doctor.
On another side, we all know ourselves better than any one will ever know us. If we know there is a possibility that stress is playing a key role in our symptoms, then we know it inside. If we don't or are not sure, then that would be a good time to seek counseling to see what is really at the root of the symptoms.
This will be an interesting discussion. I look forward to hearing what others have to say. Thanks again Quix for bringing this subject back to our forum family.
So you think this would explain why my cardio asked how I felt and I told him I felt like c rap, he didn't ask me specifically why I felt that way? Fortunately he knows I have real illnesses and accompaning symptoms and doesn't dismiss it as being in my head.
But that brings up a point I have discussed before - the patient's responsibility to be prepared when they go to the doctor to talk about specifics and not generalities (like I did!). Doctors need something concrete to work with - just giving a response that covers a lot of possibilities, such as "I'm tired" instead of something like "I tire when I walk more than xx distance" gives them too much opportunity to dismiss our complaints as less than real. The other reality is doctors don't have the time to play 20 questions with every patient they see and if you can give them specific symptoms they are more like to investigate those complaints.
I think all of us at some time or another doubt our own symptoms as being real when dealing with an unknown disease. I certainly have wondered if my chest pain was in my head, but then realize that waking up from a dead sleep in bed is a pretty clear sign it is physical and not mental. When we doubt ourselves, is it possible we somehow convey that hesitation to our doctors as well?
Great job as usual Q in articulating the topic. I hope others will jump in and give you their feedback.
Thank you for your post. I know that I am not the only one who appreciates the time that you put into compiling the above information.
I have a friend who was told by a doctor that if she did not see a therapist, he would drop her as a patient. She begged him to do one more set of tests because she KNEW that it was not all in her head. He agreed with the understanding that if they were negative, she would submit to therapy. The tests showed that she had lupus. She is now on oxygen and undergoing a chemo- like treatment.
As you stated, I think psychic groaners know deep down that they are groaners. I think that people with true symptoms 'just know' when something is not right. My whole life, nothing has stopped me from living and enjoying my life. What ever is going on now will not either. It may slow me down, but it will not stop me from living my life. I do, however, have a sense of urgency to find out what is causing my wacky symptoms in hopes of treating 'it' to prevent further progression- if that is part of 'it's' course of treatment. I am sure that this sense of urgency may look like I am one of the Walking Worried, but until someone has walked in worried shoes, it is hard to judge the reason for the urgency.
I feel like a number in many doc's offices. If they took the time to know the patient, maybe they could better discern if they are dealing with a worrier or a true limbolander.
thank you for adding this post and putting so much information into it. I am yet not DX..it's been over three years of Vertigo and then all sorts of other symptoms. But the first part started 10 years ago with Vertigo, then it stopped.
I went to Neuro, Rheumo, ENT, Lung specialist, etc etc... I was in a hospital for two weeks to have students check me over to find out why I had vertigo and off balance, headaches, joint pains, etc....
I had LP, full body xrays, Bone Marrow biopsy, Lung function tests, blood test galore, brain MRI an C spine MRI...another brain MRI showed changed.
well, the first year after I was in the hospital I was told by numerous Neuro that all my symptoms most likey are from stress and thought I should see a therapist as my parent weren't the best...
so I went to see a psyciatrist... we talked for quite a few hours... she said the test resutls came back showing things wrong...like Granulomas in your Bone Marrow, Ilg bands in your blood... lesions in your brain, and all the symptoms that come and go...and seem to get worse then better....
she said it's not in my head and to get to another Neuro for more testing.. I have done that and now seeing MS specialist..who I feel will help me find a Dx either with MS or not MS...
I really don't think that people with symptoms from stress, anxiety do know that it's from stress or anxiety... Having these types of symptoms effects your life...from an illness like Lupus, MS...or ANXIETY...Mental Health is a big issue and alot of people will write it off like take a pill and you will be all better.
Mental Health should be just as important as any other disease... people have taken their own lives over this type of disease... because you don't have a cast on or a Dx...that people accept... it still is a issue that should be taken care of and any respectable DR should help a patient when they feel it might be from aniexty...and not just tell them to go and see a therapist...they should refer and follow up etc...
now, that's my opinion...my hubby and I have discuss this alot as I really would love our lives back to how they were a few years ago. I can't even go to Safeway with my hubby and shop without having to sit down...and that's it for going out for awhile...it tires me out? I sometimes wish it would help to see someone again...but my GP says No...there is something wrong and we just have to find it..
well, enough from me.. hope all is well
Okay, I think that's valid. Some people might not know what could be from stress and what might not. I can see that some people might be convinced by doctors that they are actually mentally ill and are manufacturing symptoms.
Do any of you think that most/some people know deep down that they are deeply depressed or anxious beyond that that is caused by being so ill? What I am getting at is whether we have an inkling of whether there might be some validity to seeking help. If we believe that there is some validity, should we cooperate and accept medication/therapy to help depression and/or anxiety?
I agree whole-heartedly with Wobbly that the doctor who thinks that treatment for depression or anxiety should refer and follow up. I think they don't because the articles that I read all say that severe "somatic" symptoms are very hard to treat. So it seems everyone gives up.
I'm looking for the right things to say to someone who has been dismissed with: "Everything looks normal so it must be that you are anxious." My stance has always been, "if you agree there is some underlying depression or anxiety, then treat it and see what is left. Exercise or meditate, clean the sugar out of your diet, do whatever may be adding to the problem. If, on the other hand, you KNOW you are not anxious and you know that any depression came on after and because of the undiagnosed symptoms, then what?
Do you seek the advice of a psychiatrist like Momzilla and others did? And then have that validation to take back to your doctors? How do you convince a doctor that a person can have both a mental illness AND physical disease?
Perhaps the assessment that a patient's problems are driven by mental illness really should be confirmed by an expert, but I believe it should not be of the neuro's choosing. They would tend to chose psychiatrists that they think would agree with them.
Or do you look for doctors who will take you seriously?
Every doctor that you add to your list can also add to this assessment that you do not have an underlying neurological problem.
I don't think there is a right answer, but it's an important discussion.
I went to sleep last night thinking about this discussion. And Quix is right that there is no right answer that would apply to all patients all the time.
I posted a question a few months ago to you all about the suggestion my neuro gave that I had conversion disorder because I didn't get back to "normal" fast enough after I got sick in May. He thought that was a sure sign that the stressors in my life, hubbiie going to a war zone, was the cause of what happened to me. He suggested going to a psychiatrist to work through it. I listened to the comments you all sent my way and read with interest how others handled this same scenario. I feel I know my body better than anyone my doctor included, and knew that I had to push forward with the medial issue and later deal with whatever psychological issue might be going on. My PCP suggested I do both concurrently, but that was a scary proposition. First, we don't have any control how a psych eval is going to come out and what impact good or bad it will have until all is over and done with. Doing the psych eval could be the best thing if the eval states that the symptoms are not psychosomatic but likely due to a real medical cause. But on the other hand, what if it comes back saying, even in vague terms, that there could be an underlying psych problem. Well, if my old neuro got a hold of that type of report it would have validated his assumptions and I would have been dismissed in a minute because that is his way out. Where would that leave me? Back in limbo big time. So, I decided to stay on the path for finding a medical cause for what is happening and when the time comes I'm sure it will be appropriate to get some counseling. I think we should trust our instincts, listen to doctors, but still to trust that inner voice that lets us know when things we are being told or even reading doesn't set well with us. I call it the "set well principle" IF it doesn't set well, then move on and keep looking for answers.
There is the very real desire in all of us when we recognize depression and anxiety in ourselves to believe we can handle it on our own, for fear of being labeled something that is not the correct physical diagnosis. I think few of us willingly admit the need for anti-depressants or guidance through therapy.
In my own experiences with multiple doctors this year, the question of depression has only come up one time in umpteen doctor appts. That was my neuro on the very first appt. and he asked my husband and not me - "do you think she is depressed?" and they talked about it in front of me and decided my personality had changed and with all that had happened this year I would be normal if I were deprressed. END OF DISCUSSION.
I always write notes before I go to the doctors about my symptoms and lately find that I list depression as a possibility - not one doctor is even going there in our discussions. I have an outgoing personality and that perhaps masks what I am feeling internally.
I would venture the unsubstantiated guess that few of us here, diagnosed or in limbo, aren't suffering from some form of anxiety or depression. Isn't that a normal response to the betrayal of our bodies or the dramatic shift in our lifestyles , financially and socially brought on by a lifelong disease such as MS?
I believe mental health treatment should be routinely used along with the medicines for diseases such as MS or heart ..... isn't the role of medicine to treat the whole person and not just the pieces and parts?
I hope this all came out right - this is awfully early for me to already try to construct thoughts ...
This is what I have worried about. In my younger years I had a severe problem with panic attacks and OCD. I went to several doctors but not one of them offered to put me on an anti depressant to help me. They wanted to drug me but with valium. I desperatly needed someone to listen to me. I lived in fear and felt like I was crazy, possessed, for years. I finally feel released from all of that due to the antidepressant. I can be alone now and not feel like I am going to have a heart attack and die by myself.
That history kept me from getting the help I needed for a long time. Now that I am on Prozac my mind feels so much better. I am not struggling mentally any more. The snow is not making me depressed. But I do have to say this 20 degree weather is making me very cold!!
I have been on antidepressants for 6 months now but I still have optic neuritis, double vision, foot drop, muscle weakness in my legs, balance problems severe enough to need a walker and cane, trigeminal neuralgia. The anti depressant did not take care of any of these issues.
At my last MS appointment I left confused. The doctor noted a significant decline during the 3 months since my last appointment. He said sometimes people with MS can have new symptoms appear because of the stress associated with the MS diagnosis. He checked me for fibromyalgia. When he asked me to walk heel to toe I couldn't. He said well it looks like you are afraid you are going to fall. Well yes I was going to fall. I got the feeling that he was not sure what was going on. That really bothered me.
So he changed my Lexapro to Prozac and sent me to PT. He said if the combination of PT and Prozac did not improve me situation that he was going to add another MS medication but for the time being he wanted me to stay on the Avonex.
Nothing has changed in my legs. I had 4 sessions of PT and did at home therapy. When I do too many exercises I start to get tremors in my foot especially. The PT even questions whether or not I should be driving. I can not get my right foot up onto a step without catching my toe. I can stand for about 43 seconds without holding onto something. Around home it is not a big problem because I can hold onto the wall, a kid, the counter, washer, dryer.....anything within my reach.
I hope the PT sessions with give my MS doctor a clearer picture of what is going on. When I first started having problems several years ago I knew my past history of panic attacks would come back to haunt me. It has not been as bad as I had feared but it is still in the back of my mind.
I left my last appointment worried and confused because of this exact issue. I felt like he was questioning my MS dx, although HE is the one that gave it to me, but I don't know. It is my fault for not asking me questions.
The bottom line is the PT and medication has not improved anything. My PT sessions were a mixed bag. Somet things improved one week while other things got worse. Then it would reverse the next session. My overall score actually went down by one point.
I go to the doctor again this Wednesday. I feel so bad for you all in limbo. It is a very difficult place to be. Having ON twice and an abnormal MRI got me out of the limbo mess after 10 months. My first bout of ON was in May of 2007. My second was in January of 2008. I was dx'd in Feb 2008. The one thing I had in my corner was my PCP has felt I had MS for several years.
AMEN to what you stated, and so eloquently in the early morn. It is interesting that the issue of depression never came up until the neuro exam. But then again, neuros probably have a lot better training than most other specialties in recognizing depression. Also you mentioned that you have an outgoing personality and that that probably throws a doctor off with whether depression is an issue.
My old neuro wrote that he thought I had depression in the progress notes to my PCP. When I went to see the PCP's physician assistant who I love, I was told about this remark in the letter. After talking to me and knowing me as well as she does, she said "well, you don't seem depressed to me and she asked me if I was depressed". I was surprised at how I answered her. I told her that I thought I had a little depression especially with all I have been through over that last 6 months. We talked about chronic illness and she said that it is normal to have depression when you are going through this. That would depress even the heartiest person. And like you Lu, I was very outgoing to. My friends and family will attest to the fact that I'm not quite the same person I was. That is the consequence of a chronic illness, but not the cause of it don't you think?
And I absolutely agree with you that mental health should be a part of a health care regime and I think it is in situations where you are diagnosed with a disease at a specialty clinic like a cancer center, heart center, diabetes clinic, and the MS center that I am now going to. But do you know who falls through the cracks in this type of focused treatment? People who are getting medical care from their PCP or a specialist doctor who may decide their patient needs to be on anti-anxiety drugs or anti-depressants and never follows up on how they are doing. I know because my son is in training to become a pharmacist and he sees it all the time. Patients come in with a handful of scrips for mood modifying drugs and when he asks if they are in follow-up, he hears that most are not. He told me that patients didn't even know they needed to be followed by anyone when taking these drugs. The doctor just writes the script and sends patients out the door to figure things out for themselves.
Suggested Solution - Based on what Quix already stated and others I feel that If a doctor thinks a patient has depression and that the depression is the underlying cause of the symptoms based on good medical testing prior, then by all means explain the need for a trial use of anxiety or depression drugs for a fixed period of time and then FOLLOW+UP with the patient. It is amazing how that f/u can help the patient feel that the doctor really cared about helping them. Some doctors already do this and good for them. But the rest of their profession, no matter their specialty, should be doing this as well. This should be a Standard of Care in all specialties - Period!
Thank you Quix, this is a great topic and it comes up on the forum frequently. I don't think we could ever discuss it enough.
I've been a limbolander for over 15 years. I haven't been told by a dr that anxiety or depression is the cause, once when I was in my late 40's I was told that my problems we're due to getting old, though. This was told to me without any testing being done, my complaint was extreme fatigue and not being able to do the things I needed to do. I was totally dismissed.
I do suffer from stress and depression. Are my symptoms caused by this, I strongly disagree. I'm stress and depressed because I can't do the things I long to do, my mental acuity is so impaired that I have days I feel like I'm living in a fog.
In days before symptoms took over my life, when stressed I would either ride horses or run. Now I can't do that, but I have found a way to deal with the stress and depression.
This forum..................there are always others that need to be comforted and supported, who are having a harder time than me. Giving support to others has been a great stress reliever and something I can still control, even with the symptoms, I can be a friend and show support for those who need it so badly at times.
I guess it is all in your perspective and how to deal with issues on any given day. I don't understand how any physician can sieze on this anxiety/depression dx when most times they have no idea who their patient really is. They don't know who this person was before the symptoms and health problems took over their lives. How can anyone, even a physician, after tests, put a label on a person that they DO NOT KNOW?
As Quix's post read, so many of these symptoms are symptoms suffered by patients with Lyme, MS, and other autoimmune diseases. Not having a dx, I can't say that I have MS, but there is something wrong, and I know it is not from anxiety or depression.
We all know ourselves and our bodies better than anyone. To be labeled, somatic, is not appropriate, but I don't know how any of us can fight a physician who has made up his mind to label us as such.
Would I seek the advice of a therapist if the dr asked me to? Yes, as Chris did, to cover that avenue of excuse the dr wants to use. If this is done, then you would hope that a real dr would persue all the options to really find what is wrong with their patient and not use the anxiety/depression ruse that makes things easier for them.
I do hope that I have made a little sense in this post. I get to have one of my cog fog days today, but this is a extremely important subject and I wanted to post my muddled thoughts, anyway. I guess I'm just depressed, huh? heeheehee
Oh, I couldn't stay away. What a wonderful thread. The last thing someone with troubling symptoms needs is to feel like their sanity is being questioned, but it is astounding how many people have had to go through that. I think doctors need to be better trained to handle this issue. I am very thankful for the wonderful, caring doctors I have ended up with. I've seen many that have told me, in nearly these same words, that I was wasting their precious time.
I have at this time accepted the anxiety thing, because I know anxiety can make symptoms worse. I felt great about my decision a couple days ago to accept this, but I am not giving up. None of my family or friends think I'm depressed, even my husband! But, I know I'm anxious from all the testing, so I am going to take a break from things, I can live with what's going on, and I figure if I have ms or something it will one day reveal itself to the doctors. Having a diagnosis of somatoform or whatever does not mean I'm crazy. I actually am happier than I've ever been in my life, have my dream job, have been promoted to do something that I've dreamed of doing my whole life, and don't have big financial woes.
The only thing that has made me unhappy is my pursuance of a diagnosis, so, I've decided I'd rather be happy than submitted to test after test. For awhile, I was so desperate for a diagnosis that I couldn't enjoy what I'd been enjoying.
I'd consider myself a happy medium on the subject right now, I think anxiety can cause some of my symptoms, and I think something else could possibly be going on. But if I focus on what could possibly be going on it will get me nowhere because all the tests say I'm fine. Yes, tests can be wrong, but if I dwell on that I'll be miserable.
What has helped me through this is the kindness of my doctors, and their willingness to explain. The neuro said that he knew that we can get mad at doctors in this type of situation and frustrated. He seemed to know and care how I was feeling, and almost acted like it was hard to walk out of the exam room because at that point I was in shock I think. But, if I could give him a big hug I would.
My symptoms are still here, but heck, they're kind of exciting! This morning my left hand was shaking so bad I couldn't hold my strawberry mini wheat! It's never shook before so it's always fun to have something new, right? And the shock sensations are exhilarating! Those are also new in the last few days. But I'm going to just live and be thankful for the good things, and I'm even going to clean my house. That might be the answer to all my problems (at least my mother would say so). And you know what, there's an element of truth in that. It doesn't mean my symptoms aren't real. And now that I have Provigil I can think and have energy to clean my house!
One theory I have, and it's just a theory from someone doped up on Provigil and Effexor, is that some people are more sensitive to changes in their body and may feel the symptoms of ms sooner than the average Joe, and therefore nothing shows up on tests because it's too early. I'm not saying that's me, I'm just saying I don't see why this couldn't be possible. Some people are more apt to trudge through until they drop, while others know something's a little off and it might be a good idea to check it out. That's probably where most of us began. Before weird things happened to me, like my body jerked and I'd fall down, I never went to the doctor for anything because I was too cheap and could put up with a lot. But when I was constantly jerking and taken to the emergency room and ms was mentioned and fancy tests were done I was frightened and wondered what the heck was going on. If that had never happened, I doubt I'd have been worried about a tingle here and there, but my experience and other symptoms made me pay attention to the tingling. Now that I'm being electrocuted on a daily basis I'd have to say that's another attention-getter.
I could just go on and on, but this is so important. People in limbo need help, and thankfully this forum offers that. It can be the loneliest place, but here we have friends!
Excellent post! I was in a very stressful job for several years. While there I developed asthma. I found I was having palpitations and feeling faint when I saw the big boss coming so I knew that was anxiety induced. One day I really had trouble breathing, and was sent to my asthma doc. She very sweetly asked, after checking me out, if I had ever talked to my pcp about anxiety. My lungs were fine. Hmmm. Well, I told her I had an appointment in a few days and would bring it up. I knew something was wrong. I wasn't sleeping well, I obviously was reacting physically when stressed and I also knew I was withdrawing from everyone. My husband and I talked and I remember telling him I thought I only needed something for sleep - it was only sleep deprivation, I was sure! Well, my very wise and dear nurse practitioner asked the right questions, and stated that I had about 7 out of 10 symptoms of depression and anxiety disorder. She immediately put me on Paxil and asked if I would be willing to talk to someone. I knew of a good therapist and after awhile I began to deal with "stuff" that I had locked away. I saw him for a long time and was amazed at how much better I felt about myself. I quit looking in the mirror and saying horrid things to myself! While I knew something was wrong with me, the whole depression/anxiety thing was also very insidious. I could rationalize it all away quite easily. I am SO glad I got help. I learned coping techniques and lightened up on myself. This was all before an official dx of MS. The neuro was pleased that I was already on an antidepressant. As Lulu stated so well, mental and physical health are intertwined and help for both is sometimes needed. I am on a different antidepressant now and doing well. It is easier to seek help for those things that are obvious and physical and not so much for the unseen and nebulous.
I've mentioned it before, but I'll mention it again on this thread. I KNOW anxiety because 20 years ago, I had a horrible experience with it that lasted about a year as my entire nuclear family fell apart because of my parents' divorce, my father's suicide attempts, and my own divorce, along with a major career change, money difficulties, and a host of other things. I mean...it would have been pretty hard to find another stressor to add onto all of it. And...I developed anxiety. I knew exactly what it was, and I sought help for it in the form of Xanax, which I took for about two months. The whole thing took about a year to finally resolve so that I could eat again (when I'm stressed, I don't want to eat and eating is tiring to me). And I have not had an experience like that since then. In fact, I'm having less anxiety now than I've probably had in my entire life because everything is very stable and going well.
And strangely enough, coincident with that stability (well, really about a year into it), these symptoms started up. A year before they started, I had a raging case of mono that lasted for over two months and coincided (or caused? Don't know) a miscarriage that dragged out for weeks because it was (a) missed, (b) incomplete when it finally happened, and (c) required surgery to finalize. The mono flattened me out like I've never been flattened before. Everyone who saw me was horrified by my appearance--I guess I looked pretty bad.
I had the mono, then became pregnant again and had our third (and last) child a year later. In the interim, my thyroid suddenly went insane--had no TSH and high TPOs, with huge nodules--and the whole thing was removed. Then had a large adenoma removed from my colon. Then three uterine polyps removed. Then the baby turned one. Three months later, these symptoms I have now--focused on my right foot, where they still reside--began. That was one year after the mono, six months after the thyroid came out. I had not had a medical issue in the six months before the foot fired up and was feelin' pretty sassy, really.
And now...over a year after it fired up, my foot is still a problem, my reflexes are abnormal (some of 'em), I have +rombergs, my left pinkie and ring finger go numb--solid numb--at night frequently, I get dizzy if I look upward and then look down again, I slur words that have a letter s at the beginning, and I have Lhermittes. I wake up in the morning with both feet feeling like cinderblocks, buzzing and burning and stiff, and one numb left pinkie finger.
Anxiety? Nope. I sleep like a stone and just like to hang out, enjoying my work, my family, my friends, my neighborhood, my house, my books, my writing...I love it all. I've dropped doctors for a few months and just let all of this go, essentially. I'm not anxious, but I have occasionally been pretty ticked off at neuros and neurosurgeons and neuroradiologists.
I've had a neuro suggest that some of my symptoms are "real" and some are "conversion disorder." Strangely enough, he was so unconcerned about his perception of my mental state that he failed to refer me for a psychiatric evaluation. I was pissed, to say the least, that he suggested CD, but I have to say that he doesn't know me from Adam, and if I want someone to take me seriously, I have to show them--as much as they have to pay attention to me--what I'm really made of. I've now convinced this man that I do not have CD, and he takes me seriously. But he's certainly a member of the Knee-Jerk Anxiety Dx club, as so many neuros seem to be. It's too bad that for them, that's the first place to start, instead of being just one of many places to look.
To show that anxiety and stress is not a death knell for your health, I must share some things.
This is not whining, this is fact and God's truth. I have learned to deal with adversity.
When I was a preteen, our house burned down and we lost everything material, I lost my dad in an accident when he was 51 (iwas 17). My husband and I lost an infant to a heart defect. In 1985 my mother in law was kidnapped and murdered. In the '90's we lost our home to forclosure after a business closed. I lost my Father in law (who was like a father to me) and my step brother in an 12 month period of time. During that 12 month period of time, we cared for my mother who had Lewy Body Dementia 24/7, and she died 11 months after Dad. I have a daughter with Bi Polar disorder and she has a child who is Austic.
My point- you can have terrible things happen in life, but you press on, one foot in front of the other. If I were emotionally liable, my life coud have been as miserable as I choose to make it. You must have faith, perseverance and appreciate the good things. Was I ever depressed? H ell yes, but for all the bad things that happen, there are hundreds and thousands of moments in my life that have been wonderful.
A Doc could try to say my symptoms are anxiety or depression, but I know better. I am a strong person and I have proven it,. I may get discouraged, but I suck it up and move on. Health wise, I know myself, and I know something is wrong with my body.
It takes a thread like this to remind me that I should not give up, I never have, and a indifferent Neuro will not get the best of me...... Thanks Quix.
Exactly, Sally. I have not lived through what you have, just some run-of-the-mill bad stuff for me, but my philosophy has always been, "Just keep movin' forward." Like Dory in Finding Nemo: Just keep swimming. It's not denial, it's just reality. I deal with things as they happen, I let them happen and work through them as necessary, knowing that doing that is necessary. And while I'm doing that, I just keep movin' on.
I'm sorry for your losses. They are terrible indeed.
I have a son who is autistic and another who is ADHD and a third who is "quirky." They are the lights of my life, and I don't stress about them because...it is what it is. They are blessings to me.
Having dealt with depression in the past, I'm very familiar with it. I found that Prozac helped me out years ago, then stopped working as I was in a very stressful work situation, and kept having health issues; work related injuries, vertigo, cancerous cells on my cervix, a knee injury, insomnia, and fatigue.
The company I worked for didn't like sick people, though I was still their most productive employee (when I was able to work, they pointed out). They put my on night crew throwing freight, allowed some anonymous harrassment to go on (just gave the kid a talking to when they caught him), transfered to another location, etc. Finally, after going home sick one night (after throwing up in my trash from vertigo), I was fired.
I went through a nightmare of stress, anxiety, depression, weight gain, etc. after all of that. I sought therapy, was put on many different anti-depressants that didn't work or had awful side effects.
Finally I found a class that taught skills to deal with issues in life; from interpersonal effectiveness, radical acceptance, meditation, and more I've forgotten but have a notebook full of to remind me when I need to dig up those skills if they don't come up automatically.
Last year, with pain and fatigue overwhelming me, my PCP said "you look depressed". I agreed to see a therapist at the pain clinic, who after two visits told me that I really did not seem depressed, just frustrated and in pain. I took some pain management classes and some Mindfulness stress reduction classes, and was doing quite a bit better.
Until February when I woke up with tremors, which led to loss of balance, and fatigue like I had never experienced before. After my brain MRI with lots of little lesions and my first bad neuro, I thought of seeing a therapist again, but I was so ticked off at his lack of care that I had the energy to find another neurologist and move forward again.
When I found this forum, you all helped me deal with all the cr ap that limboland contains, and made me laugh, and feel more able to deal with everything.
I wouldn't hesitate to go back to a therapist if needed; it actually saved my life at one point.
Reading Quix's list of typical somatic complaints, I thought, "no wonder neuro #1 dismissed me and #2 actually wrote in her chart notes that she suspects somatization!"
No wonder we have a hard time in Limboland!
I really appreciate Quix's thoughtful examination of the subject, and the input of everyone else.
Great thoughts on your part. I do agree whole hardily that doctor do tend to jump on Psychological reasons too darn quickly. As an example when I first developed symptoms my PCP at the time sent me to a specialist. This so called doctor reported back to my PCP that I suffered from depression and should under go shock therapy. When my PCP told me this I told him "OK then send me to a shrink to determine if I am really depressed or not". Well he did just this and after he got the report back from the shrink my PCP finally took my complaints seriously and ordered about 3 dozen tests to try and figure out what was wrong with me. The shrink told both me and my PCP that I had the healthiest mind he had ever seen.
Over the years since then I have have run up against many doctors that have tried to say this is all in my head. But one doctor in particular gave me a clue into why they are saying this. I was switching to a new doctor because I was moving and had gotten copies of my records from this doctor. As I was reading his notes there was the biggest clue in the world. He had stated that "because I never smile when seeing him that I must be depressed". Well of course I never smile when at the doctors. I'm in constant pain, feeling like death warmed over, etc. Plus since I have trouble understanding things and remembering things that is what I concentrate on. Naturally I do not smile! If I had ever gone to see one of these doctors when I felt good then I probably would smile.
What an awesome discussion! I can't thank you all enough.
In terms of my own experience, I have had chronic depression for about 20 years and finally just resigned myself that I will likely need anti-depressants for life. I have chosen to be the one who brings this up with new doctors or with new symptoms (especially those that might fit with depression). I try to say something like, "I know depression. It is something I have batted for the last 20 years. "This" (meaning whatever I was coming to the doctor about) is not from depression. This feels completely different."
This way I try to pre-empt the thought that might be forming in their head. I tell them I know the difference and this isn't "it." I find they generally accept this.
Thank you Quix for the research and time and heart that went into this. I have yet to read all the responses, but am looking forward to it.
My condition is not diagnosed and I've had several doctors (including neuros) suggest that stress/anxiety is the underlying problem. I want to be well and am not fixated on a romantic diagnosis. I did my best to fairly address the possible role of stress in my health. I saw psychologists and made lifestyle changes including diet, exercise, and quit smoking and drinking, all in hopes of regaining my health AND to address stress in my life. While these efforts have no doubt strengthened me and helped me cope with my situation, they did not stop, cure or reverse my condition, nor have they protected me from having my symptoms dismissed as originating from stress.
I would certainly count myself as one who has lost confidence in the medical community. I would describe the doctors who have failed me as lazy and biased.
I began my difficult path to get a diagnosis/treatment when my odd symptoms began to present at 28. The world was my oyster. I had just gotten out of grad school, I'd won a prestigious and competitive national fellowship, my relationship of over 6 years was going strong, and I was full of self confidence. Now, I am facing the possible need to take a leave from my work and struggle daily to remain positive. I know at this point that I have become depressed, and feel as though the label placed on me by my doctors was a self-fulfilling prophesy.
There is no way that I will stop trying to regain my health. However, now I need to haul around the baggage of my own mistrust and fear of being labeled and dismissed. I don't know how to avoid or break the horrible cycle that my acquired obvious discomfort around doctors only supports the branding of me as difficult.
I do still have a gut feeling that I will find my answers, and I still see my old self in the mirror once in awhile and know that I'm not lost. The past year has given me a new sense of compassion and interest in taking care of myself. So while this certainly was not "the plan," I've certainly still got some aces up my sleeve.
So in summary, what has for me been the most difficult aspect of the stress diagnosis is that if one is truly chronically ill, it is just a matter of time before one does suffer emotionally. This may even be sped up by the self doubt and confusion that come with being in limbo. I can see how for a lazy and disinterested doctor, it is an easy cop out: Even when the label doesn't fit, they know you'll grow into it over time.
Thanks again Quix, and now I need to read all of the other member comments!
I must say I am very grateful that I have a brain that produces serotonin in adequate amounts.
I worked for an OB-GYN who was treating someone for depression and asked him about her (way before HIPPA). I said she seemed to have everying, great husband, good kids, no financial issues, beautiful home,(everything I could think of). I couldn't understand what she had to be depressed about. He is the one to told me, "this is more than being sad, this is an illness, an imbalance of hormones in the brain, it's not something she can control". I had a better understanding after that and had alot more compassion for people who deal with this on a daily basis.
I will say thank you to Quix too - you are such a great wealth of information! We are so fortunate that you take the time to research and then share these topics with us. You also do a fantastic job of breaking it down so that those of us who are still learning the terminology can understand it. Thank you.
I am undiagnosed at this time also. I have had my PCP tell me that she thought my numbness/tingling was caused by anxiety. She wouldn't to give me a referral to a neurologist because of that. I am not an anxious person by nature and when I told family & friends that that was what my doctor thought was wrong - they were all stunned. I am one of the people mentioned "that knows something else is wrong" and will continue to fight for a diagnosis. With the way that my symptoms have progressed over the last year, I find it very hard to believe that anxiety is what is causing my health issues.
Do I think that being chronically ill and seeing how my symptoms are gradually worsening with each "episode", is effecting my mental health....without question. Do I think that being dismissed by doctors who are too busy, too lazy or whatever to do a proper work up or follow up, make me anxious, frustrated, angry....you bet. Chronic pain or illness has been proven to effect the mental health of the patient.
My personal opinion is that if a patient's symptoms don't fit into some tidy little box, doctors don't know what to do, so they take the easy way out & say it's anxiety. Or just write a prescription for valium or xanax...
re: Somatization - I am so anxious to see how you are going to summarize the responses given here. There is a concensus among the responders that anxiety and depression go in tandem with MS but are not the cause of our symptoms. This forum provides some of the best therapy available for all of us in dealing with our individual progression with this process. My best to all, Lulu
My problem, no, one of my problems with the mental health angle for explaining away symptoms, which seem MS-like, is that it is not logical that these symptoms would exhibit themselves in an episodic fashion.
I could see if the depression/anxiety was episodic and the symptoms appeared correspondingly, that it would make sense to consider depression/anxiety as the possible cause. However, when the depression is constant, and symptoms relapse and remit with no correlation to any extant event, then I consider this particular rhetoric to be a leaky vessel at best.
Not to mention that this depression/anxiety would cause symptoms that tend 70% of the time to be unilateral (left side in my case).....
On the bright side, neither of my middle fingers has been rendered inoperable by my depression!
Excellent points. I really think the depression diagnosis, though often correct, is a cop out for physicians. A quick answer to a problem they won't take the time to deal with. As if a person couldn't possibly be dealing with another health issue in addition to the depression.
I forgot to mention: I actually HAD depression last spring for several weeks and again at the end of the summer into the early part of the fall. It's a VERY different feeling, something that is unmistakable (to me). It's not just the blahs or a temporary downiness or blues. It's daily, from the moment the eyes open until you drag into bed at night. It took sheer force of will for me to put one foot in front of the other or to lift my fingers to the keyboard to work. And then...it went away. I "manage" depression in ways that are designed to counter the neurotransmitter deficits, including exercise, laughing, relaxing. So I came through both of those periods--periods the likes of which I don't ever remember experiencing--and haven't had one now since early September. And I KNEW what was happening...it wasn't like I somaticized it. I consciously knew I was depressed and talked a lot with my husband about it (another one of my "management" approaches). Wasn't seeing a doctor at either point, and I didn't mention it to the only one I have seen since April (that'd be Neuro 3, a.k.a., RLS man).
Here is a good one. I looked in my medical chart and found that my doc wrote that I had anxiety and depression and that I displayed multiple somatic symptoms. He gave me lexapro and sent me on my merry way.
Here's the kicker: six days before- before he saw that all of the test results were negative- he wrote that I displayed NO signs of depression or anxiety and was in strong mental health and that my symptoms (the very same ones taht I described 6 days later) we consistent with possible MS.
Isn't this proof that the somatic lable is a way for docs to pass the buck when their first impressions are not supported by test results?
crswin - That is amazing!! I assume that you are NOT going to keep seeing this jerk. Yes, it means that his "assessment" that you are somaticizing means nothing. I would write a letter of complaint and send it to him with photocopies of these two visits, commenting that when he found himself at a loss for a diagnosis, he ignored his earlier opinion, treated you with Lexapro, and dismisssed you (I'll bet without follow up).
This letter should also be sent to the state board of Medical Examiners.
Thanks for the post. I have read most of the responses and the timing is perfect since I am currently suffering severe anxiety. It started with a panic attack that woke me out of a sound sleep on Thurs and has been at my heals ever since.
Here's my question/thought - I never suffered anxiety before I got sick (ms,r.a, sjogren's and endometriosos). I know that anxiety and depression often worsen symptoms but don't they also come as a result of the daily pain and the diseases themselves?
I am currently on cymbalta and tried another because it seemed more fitting with the anxiety. I even asked to see the psychologist and took some good things away from it. I don't suffer often but when the anxiety comes it is overwhelming and can last for days.
Does anyone else have a history without depression or anxiety until after the "real" illness or illnesses came? If so, then maybe the disease messed up some balance in the brain and the anxiety is a result. Also has anyone found any meds to recommend?
I am double posting this because I want to be sure you see it. For others who read this it comes from my post in response to this post. Wrap your head around that...it made me confused. LOL Quix very kindly was worried she had offended me...and she DID NOT!
In no way did I take your posting as such. I agreed with what you said,i.e. it is an overused excuse, there are people who are anxious and exhibit it through somatic symptoms, etc. My concern was simply that the way the doctors use it, it becomes a catch all phrase, an excuse for them not to look any farther. If they would educate themselves they would better understand what they are looking for. You did, why can't they? No time...BS
I was impressed with your reasoning on how to separate the anxious from those who have symptoms, are anxious because of them, but are truly suffering. I have copied and pasted the part from your post I am speaking of:
The ones that I found most persuasive are 1) the complaints that are "global" and vague and constantly changing - hurting or numb all over without being able to pinpoint any differences (but, this can happen with people who are not very self-aware or who have poor skill in expressing themselves) 2) a patient's history that over years many complaints would come up and never be shown to have a cause, then would resolve only to be replaced by another, 3) the history that the symptoms dance around rapidly. Another big point here is that these people must never have suffered any kind of deterioration or disability related to their symptoms (but, of course this can be determined only in hindsight. This is not useful if you are looking at a disease which has a disappearing window for effective treatment.
My point in writing my post was to maybe? help someone determine if they are experiencing anxiety in the sense of an anxiety disorder, thereby, hopefully giving them the strength to get treatment and/or continue to fight for answers. there is no reason that the anxiety/depression or any other mental/physical disorder cannot co-exist with MS. Although listening to what doctors tell our forum family would lead you to believe otherwise.
One more thing I addressed the anxiety from the point of being a mental/ chemical imbalance disorder. I was pleased to find that sailorsong discussed it from the point of situational anxiety. For all tho I have a chemical imbalance, situational anxiety is as real as that caused by a chemical imbalance. The difference is usually as the situation resolves itself so does the anxiety. Mine walks with me 24/7...365 days a year. Also it is very true anxiety and depression are opposites sides of the same coin. We me the anxiety is more prevalent, I have had only had two episodes of what I would call clinical depression, lasting for more than two weeks.
So I want you to know I in know way think you were making light of the issue. My main point was that people like me who know they have anxiety tend to blame everything on the anxiety and that is as dangerous as letting a doctor send you away with a dx of it is all in your head.
Wishing well, terry
PS, I really worried about you when you fell. (Did I spell that right?)
> How many of you have ever had a symptom that you were told was due to anxiety and you could see that it was likely true? When there are real abnormalities on exam, can the diagnosis of anxiety still be true?
I've wondered about this particular problem, because as you may remember, I have frequent shortness of breath. Sometimes my heart rate is elevated. It feels similar to an anxiety attack. However, I do not have the 'vomiting butterflies' in my stomach that tell me I'm experiencing anxiety. What I've decided is that this is a weakness in my abdominal muscles, perhaps my diaphragm, and it's preventing the bottom part of my lungs from completely inflating.
Now, on to the real stuff:
Specifically, cognitive problems. When I first mentioned them to the neurologist, he told me I was 'confused' because of the diagnosis. I immediately knew that this was flat-out wrong. We all know the cognitive problems that come with MS, and this wasn't just being confused. So I immediately had a red flag on this neuro, after the 2nd visit. (And yes, I'm still with him, but not for much longer.) I pushed for the neuro-psych exam, and he dragged his heels. I had to bring in the results of the exam myself, because his office lost them. Then he dragged his heels again when I asked for Aricept! Sheesh.
It makes me wonder how many people out there have MS, have cognitive problems, and have to hold down a full-time job. They don't have the luxury of being a little slower than everybody else. Cognitive problems can cause money problems - from incurring late fees because you forgot to pay the bills, to making poor financial decisions, to losing your employment because you can't keep up!
The neurologist is on the front line when it comes to making sure MS patients can still live quasi-normal lives. It doesn't help when you have to fight your neuro every step of the way to improve your quality of life.
One thing that I wanted to be careful of was not only the anxiety but the need for drama. Growing up in a chaotic household, the one with the most drama won the attention/affection which was usually our mother, then, later, my brother. I had to do a careful analysis of my own behavior keeping in mind, "is this real?" or "is this my drama?"
Personally, I dislike drama. There's too much of it in my job. The other thing is that even if the physical symptoms were somatization, the cognitive "furball," as you put it, was the real attention getter for me and for the people around me. When other people note that you're stumbling on words, it's time to pay attention. I take pride in my memory of obscure facts, of paying attention to the smallest details. The very nature of my job necessitates it. However, when I am getting lost, forgetting if milk is added to eggs for French toast, and my ability for more executive planning functions such as reports, notes, and assessments is impaired...I knew something was wrong and it wasn't just anxiety or in my head.
As for managing the post-symptom anxiety and diagnosis...my motto for life is, "it is as it is" and I will deal with whatever "IT" is accordingly, being mindful and being in the moment. It would just be nice to have a few answers.
I will start by saying that i think that this is a great topic and would like to share with you all a little about me. and the misdiagnosis i have endured
almost 10 years ago i went to my then family doctor compaining of severe back pain and belly pain so bad it was almost difficult to function. The doctor put me on anti-inflamatories + Tylenol 1's as i refused anything stronger (i hate pills) and sent me on my way one or two times a month i would return with the same complaints this went on for a year ( he also tried to put me on anti depressants which i refused) when finally the doctor attempted to do a PAP, he stabs me with it says he can;'t cause im bleeding (well of course i am after being stabbed with a spec.) and tells me i should be thankful i am a healthy girl when i asked him why i was in so much pain and why my belly was swollen he told me i wasnt and to stop complaining. i immediately went to a walk in clinic where the doc performed another pap and the results came back pos for chlamydia (I was married) angry you bet!
misdiagnosis #2 9 years ago
compaints of severe right sided headache nothing took pain away went to doctor after 1 week doc put me on percocets and sent me home. perc's made me feel sick, pain continued almost for one more week when one day i was sitting at the table trying to eat soup when i felt a bubble go up the back of my neck into my head ( kind of the way a water bubble looks) i noticed spots on my calves that looked like bruises that night i was woken from my sleep vomitting violently and immediately taken to ER were a lumbar puncture was performed twice (due to the first being a bloody tap) anyway turned out i had meningitis and was hooked up to iv antibiotics. nice i could have died and am lucky i came away with no brain damage.
complained to my doctor for a year (yes another year of complaints) of nausea and stomach upset constantly was given antiacids. after a year of getting no where went to ER a ultrasound was done and i had an ulcer and was treated for Helicobacter Pylori.
I know what stress is i went through 2 bouts over the last 6 years 1st time was after having my second child i was apart of a large family (something i have never had or experienced) where everyone had an opinion this was hard for me as i had already raised a child on my own. anyway i ended up with post partum and began thinking too much and talking out loud to myself as a result. I knew something was not right I took myself to my doctor and asked for something as i was experiencing mental stress.
The next time was when my hubby and i were having a rough patch. we were having difficulties understanding what eachother needed to grow as human beings separate from our relationship anyway i went to the doctor and got us councelling and we grew together and things are great
so as you can see from my situations for me being told now that my symptoms are stress related is very frustruating because i know when i am stressed out and i am well aware of my body and when something is not right.
Thank you ambro, for telling us what you've been through. I'm also undx and been having symptoms for close to 20 yrs.
I haven't been told, YET, that my symptoms are from anxiety. I have been told I'm just getting old, that's when I was 46.
It helps everyone here to know that we are not alone and that by being here sharing our stories we are helping others to cope with the unbelieveable things that are said and done to us by the medical community.
Hi to all.
Quix, this is a very good thread, and everyone who has posted- it is wonderful to read.
I have been down the whole "your just depressed" road with my very first neurologst- after he told me "you have possible MS". That was honestly very difficult.... and if anyone remembers, the AD's he put me on made me awfully throwing up sick for several days. When I returned his only solution was to return in 6 months and try another AntiD. I did go very low after that- I couldn't walk and here that was all that was being offered?
And the whole doctor shopping is a very touchy subject... I left Neuro1 becuse of the above, and N2-4 just said, you have us stumped. They were all very kind doctors, but I had thoroughly confused them in their fields of medicine. So, that left me feeling like they had gave up on me so I am now going on to N4.
And as far as knowing if you are a psychic groaner, I think you would know. Deep inside somewhere. But how? Becuase don't their pains feel as real as ours? That's a tough question. I know I was on the brink of giving up when I went to NY becuase of my neurologist telling just offering my Antidepressants and brushing off my symptoms (when he saw I couldn't walk he suggested I just walk barefoot more), and to be honest I was thankful that a few tests came back high just to at least let me know I wasn't crazy and that something was wrong with me. I was beginning to wonder and questioning my sanity, and I truly was going to refuse anything more further in the medical field of testing and just say "ok, that's enough".
But, now, I have a track, a history of repeated symptoms that are same and they are not vague, and they do occur over and over and are backed up by test results. And for example, with my seizures, and I can tell you that they occur only in the evenings around the time I take my daily meds and they only occurr when I am very tired and have a lack of sleep.
This is a hard question, and answers are hard to find. That is probably why people unfairly get this lable.
It's a real problem. Many people these days are still diagnosed with conversion disorder or belle la indifference, when the problem is really organic brain damage. The cart before the horse, or the chicken and egg question - does the conversion disorder cause the problems, or does the brain damage cause the appearance of conversion disorder? I'm beginning to believe that conversion disorder is actually very rare, and almost all the people who complain of symptoms, yet remain undiagnosed, actually are sick.
Fibromyalgia is now recognized as an actual disease, but as lately as ten years ago, people were still calling it a 'fake' disease. Something the hypochondriacs would make up so that they could pin a name on their symptoms. Ridiculous, isn't it?
I like what you said about believing conversion disorder is very rare. I think you are right. Any normal person would get concerned with some of the symptoms we experience. This is the first time I've looked at this forum for a couple weeks or so, and I am totally involved in something else that is fun and exciting in my life. But yesterday out of the blue I started feeling some strong vibrating at my waist which I'd never had before and I started getting electric shocks in my hands, and mid-day while typing some things for work my fingers couldn't hit the right letters.
Now, I can understand if I was going around worrying about that happening and looking for it that maybe it could just possibly happen (not sure how, but I guess anything is possible), but if I'm doing other things, having a good time and not even consciously thinking about what my body's doing, wouldn't it be reasonable to think that it's possibly not from anxiety?
But I'm ok with where I'm at right now. I've had the testing and everything they've done has come back normal. I've decided to not be hard on myself for all the money that was spent for the testing, it needed to be done, and I'm not going to feel foolish anymore. Whatever it is, it's real, and if no one else knows or thinks that, that's ok for now. I'm following doctors orders, and out of this whole deal I got some medicine that has helped tremendously with my fatigue.
Just today, I was thinking of the first time a doctor blew me off. I was 19. I entered college when I was 17, and to that point had only ever seen our family practice doc and a couple of specialists in my hometown for real, bona fide things. I'd never had a doctor just dismiss me as crazy. At college, in my first three semesters, I had a severe UTI, I fell and cut the **** out of my arm, and I had another "real" problem that was completely documented at the school health center. Well...at the end of my sophomore year--my fourth semester there--I went in with stomach pain. The doctor came in, said, "You're barely 19. You've only been in college for a few months and you already have this thick file?!?!? You're obviously just crazy." I mean, he really practically said that. I was stunned and tried to explain that I'd actually been at the school now for almost 20 months, that I wasn't a freshman but about to be a junior, that I'd been there far longer than he was assuming, that everything in that file was "real" if he'd just look---but he completely ignored me and sent me away. Well...ultimately, it was determine that I had a real stomach problem that required medical intervention.
And from then on...I've felt very wary of doctors and their attitudes about mental health.
This is a really interesting topic and for me very relevant. I have posted elsewhere about waiting the results of an mri and have had an appointment with a neurologist having been in hospital after having paralysis down one side, blurred vision and .not being able to speak. they told me i had a stroke. the neurologist said not a stroke and that i either have inflammation of the brain which could lead to ms or i have functional/dissociative symptoms. I had collapsed in the supermarket one day and had further episodes of paralysis and then numbness, shakiness, tremors and fatigue. Having looked up about functional symptoms i've found various labels meaning the same thing, conversion/somatization/hysteria/functional weakness/ and closely associated with dissociation/depersonalization. Most info seems to point to stress and anxiety being the root cause. having been in hospital and having a load of tests being told i had a series of strokes (at 47) and having now been given 2 very different ideas of what i might have wrong, i am certainly anxious now. I feel I know a lot about anxiety depression, my husband has had ME for years and depression, I try to live a day at a time and meet my troubles head on, i dont think i fit any of the labels of functional weakness or dissociation. I dont neccessarily think i fit ms either. I agree with opera about the episode thing,how does your body convert anxiety into episodes of strange symptoms over 3 months? I also agree with doni about how can the docs make an instant diagnosis of depression anxiety when they have only met the person that day.and spoken to them for 20 mins.thing is i do get panic attacks and told a&e docs that but said this wasnt like anything i've ever had before. maybe they latched onto that though. i would like to know what is wrong with me though as my life has changed totally in the last 3 months.
Part of what clouds a diagnosis, I think, is that neurological problems can cause symptoms similar to panic attacks. Shortness of breath, pounding heart rate... I've had all of those, but without feeling 'panicked.' I know what feeling panicked feels like!
The past week to ten days we have heard this dx a bunch of times around here, including my GI doctor telling me my throat and chest pains are a byproduct of anxiety. Thanks for digging this one out for all of us to reread.
Wow , thank you for posting this again! It has been very helpful! I am still wondering what or where I should go with this. I know my body, I know that, it would not be caused by this disorder. I thought, that if you had tests and they come back inconsistant, then isnt that a red flag that there is a problem??? I dont know. I am still fuming.. But you know what? I am going to take their stupid meds, for the month they told me, and see if it works... I am desperate, willing to try anything.
I saw one of the nuerologists in the hall last night, and I asked him what I should do about the physio therapist. She saw me yesterday, had great concern over my numbness, and weakness on my left side, and wanted me to stay another night, just to retest it in the morning.
Well, when I told the nuero that in the hall last night, he flipped, and said "well, I don't know how your gonna fake your way outta that one, but, do it and get out, so you can go home"
I am shocked.
I also asked him why they didnt come to see me yesterday, ( he was supposed to discharge me yesterday) was because "we didnt have time"
I just dont know where to go from here. It has knocked me to my knees.
But, this is a great post. Thank you for bringing it back, so I could read it. I know I am not alone, it helps to know there are people out there, that are and have felt the same way.
I am dumbfounded that these threads are coming up after I just experienced this yesterday. I am going to read all the replies tomorrow written here. I feel in my heart that my lower extremity symptoms are coming from my cervical injuries and I want the surgeon to admit that just becuase I dont fit into the 90% percentile of degree of cord compression in my neck or thoracic region that it is still possible to have muscle weakness in your legs. And by the way does anyone know CAN YOU FAKE HYPERREFLEXIA IN THE KNEE??? Thats what i'd like to ask the surgeon and neuro and also I am going to ask "Please show me the medical text book or journal that quantifies cord compression" "How much cord compression does it take 2%, 5%, 10%, 20%,30%, what does it take to cause lower extremity weakness, cause I sure as hell want to know". Are we all the same, do we all have to have the exact same amount to experience myelopathy or are we individuals with individual spinal cords and varying degrees of tolerance to comression!!! God im pissed.
It's been awhile since I've posted. I mostly read and find comfort in the comments of others. But Quix's points really hit home for me. My first neuro seemed to be more interested in dismissing my symptoms as "all in my head" than he was in trying to figure out what's really wrong.
I know my body, and I know how it reacts to stress - and I know that anxiety is NOT what's causing all my problems. Sure, especially the first couple of times I had a flare, I was definitely scared, but I think neuro #1 got it all backwards and said that stress was causing the sympto
Sorry - hit a wrong key and posted before I was finished.
Anyway, if I suffered from anxiety as bad as he said I did, I'd need to be committed, and I certainly wouldn't be able to function well in society.
I'm finally going to get to see an MS specialist Tuesday. She has a very good reputation and is on MS Society board. I've heard that she really listens and wants to help people. I sure hope so because neuro #1 certainly left me with doubts and a lot of dissapointment in the medical profession. He made numerous mistakes in his notes - including sending them to a doctor I don't even see and saying he was waiting on reports from other doctors that he never sent me to. The entire experience was a nightmare, and meanwhile, I continued to have flares, and now I have to use a cane or walker most of the time.
Limboland is a terrible place to be! I've seen were a few on here have finally gotten a dx after many years of living without answers - so there is hope.
Thanks to everyone who posts here - it's certainly comforting to know I'm not alone.
Just want to say that I've been active in this forum since October '07, and in that time there have been far more than a few members who have graduated from limboland. Several dozen at the very least, most of whom have gotten an MS diagnosis. We've had a fair share of others who have learned they have MS mimics, from Lyme disease to B12 deficiencies, and even cancer. We've also had a small number whose problems were indeed psychiatric and they agreed with that assessment.
Unfortunately there's no way to do an accurate count without going through every post, and that would mean thousands of hours of reading. Quite a lot of members no longer post, or post seldom, but that's the nature of the beast, I guess.
Still, I think my diagnosis estimate is very conservative. Don't give up trying.
Wow, what a thread! I'm surprised I messed this one...
I was blessed by having a cool Neuro, who, in front of my hubby and all, said "this is all very real. You don't see me handing you a referral to a psychiatrist" Of course, if he did, I would go to the shrink, anyway, to prove I'm OK. This was all at the beginning of my path to diagnosis.
I've been in and out of depression since I was 10 years old, and my best way out was talk therapy. I've never taken an antidepressant, and when things get a little dicey upstairs, I have only to phone my therapist, and just a few sessions get me straightened out and coping. I'm actually amazed I haven't had any major depressive episodes since my diagnosis, or with the addition of Rebif. Hmmmm...Knock wood!
I have been in the medical field for about 28 years also as a medical transcriptionist.
In 2003 when something reared its ugly head for me I was truly totally healthy except for occasional migraines.
After my initial episode of right-sided body tingling and severe numbness leading to TN when I first saw my neuro it was "stress/anxiety/worry." Also he said I needed to change professions as being a medical transcriptionist could be my problem as well.
I went back a couple days ago because I had not seen this neurologist in about 2 1/2 years it was "I told you it is not MS, its stress/anxiety/worry." He basically told me to stop shopping around for doctors and that the wrong doctor could "hurt me." I told him that everyone has stress.
Only we know our bodies and when something is terribly wrong. I absolutely dreaded going back to this neuro but all the doctors in my area are in this one particular practice.
(They do not know us) and could not possibly differentiate if we are hypochondriacs or not.
I have always been an extremely positive person and still am. I've tried the whole get over it scenario but it just does not work.
What it is that the doctors are afraid of by not openly talking about this with us? If they would just "talk to us" instead of making us feel like we are crazy, depressed, and stressed out.
Neuro suggested physical therapy, Effexor, and he increased my Neurontin this office visit but if I have no neurological issues, why doesn't he just dismiss me as a patient and send me on my way to a psychiatrist?
Thanks Quix. It is nice to hear your professional/personal take on this post.
WOW!!! WOW!!! WOWWWWWWWWWWWWW!!
THANKS FOR THE AWESOME ENTERTAINMENT!!! I SUCKED UP EVERY WORD, NOT A DROP LEFT!! lol
I BELIEVE EACH ONE OF US HAS A NATURAL INNER VOICE THAT MAKES US AWARE THAT SOMETHING ISN'T RIGHT.
TOO OFTEN WE KNOW SOMEONE WHO "IS" A WHINER /DRAMA QUEEN,
THEY TURNED US OR OTHERS OFF AND WE DON'T WANT TO BE THEM SO WE STAY QUIET OR IGNORE OURSELVES.
WE NEED TO LISTEN TO OURSELVES MORE AND QUIT PUTTING OFF MAKING THAT APPOINTMENT, BECAUSE "IT'S PROBABLY NOTHING" ,OR FEAR OF BEING TOLD SO. (ME)
I HAVE KNOWN SOMETHING WASN'T RIGHT FOR THE PAST 2 YEARS OFF AND ON. I WENT THROUGH 2 YEARS OF PURE HELL DURING THAT 2 YEARS W MY HUSBAND. I WAS QUITE SURE MY NURVES WERE SHOT .
I WENT TO MY FAMILY DOC AND TOLD HER HOW I WAS FEELING AND ASKED
FOR AN ANTI- DEPRESSANT AND A REFURAL TO A THERAPIST.
I'VE ALWAYS BEEN VERY HEALTHY AND STRONG, BUT I KNEW I WAS AT A PLACE WHERE I NEEDED HELP TO COPE.
I SAW THE THERAPIST A YEAR AND WAS OK, SO WENT OFF THE PILLS.
ALL ALONG THE WEIRD PAIN ON MY LEFT SIDE THAT CAME AND WENT, I CHAULKED UP TO WORKING TOO HARD.
UNTIL LAST MONTH THAT IS, THE BOTTOM FELL OUT OF MY BUCKET AND I HAVE TO ADMIT "I AM VERY SICK" I GUESS GOD HAS A REAL GOOD WAY OF GETTING OUR ATTENTION SOMETIMES WHEN WE WON'T SLOW DOWN LONG ENOUGH TO LISTEN!! LOL
I HAVE LEARNED SOMETHING GOOD ALREADY... IT'S OK TO REST AND LET THE RESPONSIBILITY REST ON OTHERS IN MY LIFE FOR ONCE. I'VE BEEN THE ONE TO "MAKE THINGS HAPPEN, OR THE FIXER UPPER..." NOW I CAN'T SO I DON'T HAVE TO. I'M SICK ENOUGH I DON'T MIND HOLDING STILL.
I'M READY TO MOVE ON BUT IN THE MEAN TIME I HAVE DECIDED TO ACCEPT
ALL THIS AND ENJOY THE VACATION FOR NOW
IT WOULD BE NICER W/OUT ALL THESE SYMPS, BUT THEN I WOULDN'T BE SITTING HERE WOULD I.... LOL NiCee
I have to apologize that I didn't read through every post on this thread, but not only do I want to thank Quix for researching this topic, but what really stuck out in my head was:
"if you agree there is some underlying depression or anxiety, then treat it and see what is left."
I'm sure that many of us have gone through this. Are we crazy, are we not??? It's very hard to be in limbo and not know if we are really suffering from anxiety/depression or not?
Recently, after a year in limbo which was preceded by a very long streach of chronic daily headaches, the only advise I can really give is do not give up. And really, really listen to what the people who know you best observe. If it weren't for my hubby, I would have never gone for a sleep study that discovered three separate sleep disorders, which was an obvious cause of my horrifying fatigue.
And, I think "doctor shopping" is a good thing. Find someone that will listen. We all deserve that, despite the dx.
I've been doing a lot of research, following any and every lead i can find and i started to think about my mother who is dx with bipolar and prior to that it was called manic depression, dx back in the early 60's. For years and years every medical issues she has had is ignored or left untreated due to the assumption that its anxiety and depression related, that is until she's in a medical crisis. EG
1) Hypoglycemia - untreated, cause not investigated
2) Pancreatitis - untreated, she doesn't drink so why, cause not investigated
3) Kidney issues - UTI - self treated unless she goes into renal failure then medical intervention other wise medically untreated, cause not investigated
4) Emergency gall bladder removed, prior years of sx went untreated, cause not investigated
5) Anxiety - untreated, on antidepressant but still a major sx, cause not investigated (pattern of feeling anxious if skips meals), unresolved leads to feeling weepy & apathetic.
6) Depression, treated with Zoloft, feeling sad etc very rare sx, anxiety chronic see above
7) Chronic reflux - self treated, dx sx of anxiety/depression
8) Plurisy - dx common cold, caught late by ER,
9) Trouble breething - dx smoker cough & anxiety, she's never ever smoked, ER shadow on right lung early pneumonia
Absolutely everything has been dismissed as being anxiety and depression related, until she is at the ER and in crisis, only then has the medical reason been discovered and thats after years and years of having sx that have been passed off because she has a long standing dx of depression. Now i believe she has had enough 'real' medical issues to think her depression/ anxiety could be secondary, caused by something like an undx adrenal/thyroid issue, possibly auto immune, even lupus. She's not a worrier but sometimes its obvious that her fight or flight is on over drive, even menapause sx was not addressed because she couldn't tell the difference. It makes so much sense to me that there is more going on than depression/ anxiety that isn't being resolved by the taking of antidepresants.
Ok, genetic link maybe, my little boy was dx with anxiety, specifically panic attacks at the tender age of 4 and has been on Tofranil ever since so thats 8 years now. To be clear here, when we removed the foods he reacts to, the sx of panic attacks disapeared, it took years before any dr took the causation seriously, he's even still on the same dose he started with. After about 6 years of being panic free he ate his birthday cake which had more than a few ingredients he hasn't eaten for years. Within hours he's again describing those old feelings, and was drenched in cold sweat, sweat running down his back, chest and his hair dripping wet, clammy, heart visibly pounding, disorientated, needing to be close to mum, huge pupil's, excessive urination and feeling shaky and strange.
Long story sorry but i find it rather interesting that from oldest to youngest there is a common recurring theme, anxiety and depression is quickly dx even when there is a heck of a lot of 'real' evidence that points towards anxiety and depression being secondary to the medical issue that isn't being addressed or treated. I have no issue at all with anxiety or depression, they should be treated medically pronto! What i do have issues with is treating anxiety and depression and the medical complaint is still unresolved, shouldn't that be a red flag. If the primary cause IS anxiety or depression wouldn't the presumed phantom sx disapear or am i barking up the wrong tree with my way of thinking?
I have never had a doctor say outright, or even write in my chart (that I'm aware of, and I've seen most of my records), that I was ill because of stress or depression. However, I have OFTEN felt they weren't taking me seriously.
The first (and so far only) neuro I saw spent more time telling me I COULDN'T have MS because my brain MRI showed no lesions (not true, I know) than he did examining me.
When my new PCP checked my arm reflexes, I had no response. Seriously. My right fingers flicked a tiny, tiny bit, and from my left side, nothing at all.
Had the jerk of a neurologist I saw taken me seriously, I may not have damage in my arms that I do today. Maybe he would have looked for something, found something, treated for something that would have slowed things down.
Maybe I'd be able to do my job better and spend longer hours at it because my cognitive issues wouldn't be as advanced.
Maybe not (things have gone downhill rapidly), but maybe. He certainly shouldn't have taken it upon himself to decide nothing neurological was going on. It was clear to me then that it was, and now it's obvious to all.
I don't think a truly somatic person will give an honest answer - but that just reinforces the believe that doctors should err on the side of caution. It isn't right to throw my life, and the lives of thousands of others, away just because some people who come in with the same complaints are seeking attention.
For gosh sakes, give them the attention - just make it a policy to give the attention! Sooner or later someone will catch on to them before any harm is done - but if the patients with real physical problems wait have to wait until later, we face real damage to our bodies and minds.
On a side note, the most dramatic friend I have (if she has a tic, she calls it Tourette's; if she's exceptionally tired, she says her CFS is acting up) is also the most likely to treat me like an attention seeker. Sometimes she's a great friend, though - so I just have to take her in small doses and gauge her attitude for the day.
I'll be back later to finish reading all the responses to Quix's original question. This is clearly a topic that produces rapid and heart felt responses. I'm hearing the protest of deeply wounded people.
I will share my initial reactions.
I know when anxiety causes my body to react. I can tell because my blood pressure shoots up to levels seldom seen outside the medical environment. The stressors in my life (environmental, situational, or physiological) have in the past been followed by migraines, hypoglycemic episodes, and brief bouts of depression.
When the stressor went away, so did the physical and emotional symptoms. I'm pretty clear in my own mind that when physical symptoms force me to give up activities and hobbies that once brought me pleasure and relaxation --- that's just not me making me sick.
I have very little confidence that anyone in the medical community can determine that a patient's bodily symptoms have no physiologic cause. This same group is constantly changing it's recommendations about what we should eat, what screening tests we need, what normal test results are, standards for diagnosis, etc. etc. etc.
There are entire series of programs these days that chronicle the cases of patients that went undiagnosed or misdiagnosed for years and years (after seeing a succession of doctors) before a detective minded physician finally pinpointed a correct diagnosis. Most all these people were dismissed with anxiety or depression along the line.
Did you ever hear the story of the woman (always a woman) who penned the epitaph for her own grave marker? It read, "I told you I was sick."
My last two visits to the ER for breathing problems would be enough for anyone to think it was stress related and I was a nut case. Trying to explain what was happening to me was like talking a foreign language. I tried to explain it was not shortness of breath but the muscles were not working. I couldn't make myself cough. I couldn't clear my throat. I couldn't blow my nose. The muscles were not working....I was aware of breathing shallow.
Right away they wanted to give me something for stress...Which even my neuro gave me the following day. Has it worked? No. If I take double (her orders) it is enough to put me to sleep so...yeah...now I am breathing.
I have an appointment with a pneumologist tomorrow. Wish me luck. I sure hope it isn't blamed on stress and someone helps me.
I think doctors are too quick when they don't have answers to dump medicines on us....As a young mother I used to call it "Mommy Medicine". Medicine given to make Mommy think the child was getting good medical care.
I'm new to this forum. I have some undiagnosed neurological symptoms, mainly in my feet and legs.
To be fair to my GP and Neurologist, neither of them said they thought my symptoms were caused by stress or anxiety. I was actually disappointed to hear that. I would take anxiety over MS any day. I do, however, feel that my symptoms are worsened during times or stress. I'm convinced I have real Neurological issues, but that they are also worsened through stress. I'm also convinced that these days when I'm stressed and anxious it is 'always' due to my symptoms.
My wife still thinks my symptoms may all be down to stress, but she is supportive and understanding. I suppose she is just hoping it's stress herself rather than MS or something serious.
I wonder how many of us give in to the diagnosis of stress as it's prognosis is far better than MS. But then, deep down we all know our bodies, and the stress card doesn't fool us for long.
Fortunately, it has never been suggested to me that any of my symptoms could be due to anxiety, stress or depression.
I have had times in my life when I have experienced all of the above and was able to recognize it for what it was. And yes, I did experience some of the symptoms on the list, but nothing like what I am going through now.
If a doctor were to ask me if I felt anxious, under stress or depressed, I would be able to draw on those experiences and outline the few symptoms I had and their duration and why this is different, as well as bringing up test results which support some degenerative process.
I just started seeing a therapist recently (tons of fun at home with a 20 year old Peter Pan as well as other issues including balancing work with health). He commented about how much I am juggling right now and I told him that I did not think I was depressed. He agreed and thought that I am approaching things in a very pragmatic manner. With the neuro sx, he has MS patients and a lot of insight into the varying personalities within the profession and the difficulties patients face in terms of diagnosis.
This is probably yet another reason to make sure that you obtain transcripts of your doctor visits. While the doctor may not say it directly to you, it might be in the transcript that "patient appears to be anxious". Then it puts one in the position to decide whether to discuss this with the doctor or move on. If a doctor does suggest this to you, hopefully you can gather yourself together and explain in a rational, not emotional way why you do not believe this to be the case.
And no, I don't want to go on any SSRIs. I went on them when this journey first started. My PCP said they had ruled out the obvious possibilities and that the process could include finding something much more serious. He asked if I would be able to handle the diagnosis of a serious medical problem; at the time I felt I could not. Paxil was prescribed. I wanted off after 18 months, but was not weaned off it. I found my emotions going dead and went off cold turkey; the 1st two weeks were a nightmare, the next few months I was a drama queen (which I explained to all that I was coming off medication and might be a DQ, so please just tell me if I'm off) and within 6 months, my brain chemistry had been able to get back to being able to function normally.
Can I handle the possibility of a serious medical diagnosis now? Certainly. I'm that much older, wiser and more mature! Every day is a gift.
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