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 ...
Be well all,
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.