Aa
PAINFUL JOURNEY PART 2
PART 2
The pain becomes a little more intense every week, medicine doesn't help and I'm not even comfortable with the Fibro diagnosis.
Do doctors ever really know what they are dealing with when they diagnose people with Fibro?
Does anyone have any other suggestions or questions that could help determine a possible solution or some assistance with the pain, other than Lyme disease information?
I'm scheduled for two more final tests next week.
A Breathing test and a thyroid ultrasound.
I posted this on the undiagnosed symptoms forum already and only received responses from one person.
Please advise anyone you may know that has had similar symptoms to post their solution if any.
I'm also curious if other people are noticing the difficulty out there in getting a prompt or accurate diagnosis, medications that work and if they are also finding information in their medical records that was never disclosed to them by a doctor.
Are there new illnesses on the rise that were not being informed about?
Why isn't HSV-2 called an autoimmune disease, can it affect the immune system?
Is HSV-2 the root of all my problems, since it rests in the CNS?
Do my symptoms and test results determine Fibro without an LP done to rule out an autoimmune like MS?
Are there any other possible solutions?
Thank you for taking the time to read about my painful journey and I only hope that someone can shed some light on this and help me determine what's going on.
The pain becomes a little more intense every week, medicine doesn't help and I'm not even comfortable with the Fibro diagnosis.
Do doctors ever really know what they are dealing with when they diagnose people with Fibro?
Does anyone have any other suggestions or questions that could help determine a possible solution or some assistance with the pain, other than Lyme disease information?
I'm scheduled for two more final tests next week.
A Breathing test and a thyroid ultrasound.
I posted this on the undiagnosed symptoms forum already and only received responses from one person.
Please advise anyone you may know that has had similar symptoms to post their solution if any.
I'm also curious if other people are noticing the difficulty out there in getting a prompt or accurate diagnosis, medications that work and if they are also finding information in their medical records that was never disclosed to them by a doctor.
Are there new illnesses on the rise that were not being informed about?
Why isn't HSV-2 called an autoimmune disease, can it affect the immune system?
Is HSV-2 the root of all my problems, since it rests in the CNS?
Do my symptoms and test results determine Fibro without an LP done to rule out an autoimmune like MS?
Are there any other possible solutions?
Thank you for taking the time to read about my painful journey and I only hope that someone can shed some light on this and help me determine what's going on.
Thank you for your response. I just needed to blow off some steam and then I felt so much better after having wrote all that. I started becoming ill nearly 3 years ago now and stopped working completely nearly a year. In this day and age it does take two incomes to be able to afford a modest lifestyle with the cost of living the way it is, so I understand my husbands stress concerning our long-term financial goals and whether we will be confortable or have to struggle as most families do when operating on one income.
What's not acceptable to me is the fact that he is degrading himself, me and our family by accepting financial assistance from our retired parents who live on a fixed income and can't afford to take care of us, instead of borrowing against the money he has in his 401k, interest free as the owner of the company he works for suggested to him. This would hold us over until my benefit payments can be established. Conducting himself in this manner alone is enough to bring him into a state of worthlessness and low self-esteem, which he has been exibiting since he chose not to draw from his 401k.
I'm at the point where I'm tired of being the supportive one. We've had all the talks and discussed the issues you've noted. We've been through a great deal in our 17 year relationship and yet when I looked back, what I saw was a man who displayed a pattern of never being there for me when the times got tough and I was left struggling alone. This is a lifetime illness and supportiveness is essential.
I will continue to talk, try to ease his mind, see how this is making him feel and where his concerns dwell. If he remains silent, unsupportive and continues to resent me because he has to work after my benefits come through, then unfortunately I will no doubt talk with him about the possibility of divorce.
Hopefully he's matured and his love has grew enough over the years that he will realize how important his love and suport is toward both my physical and mental well being this time. Even though our marriage has had it's ups and downs over the years, I'm confident that we'll be able to pull through this.
Thanks again for all the wonderufl input and encouragement you've provided.
Sometimes all that's needed is a little uplifting like this, when you've been down for as long as I've been. My day is again in a renewed light now.
What's not acceptable to me is the fact that he is degrading himself, me and our family by accepting financial assistance from our retired parents who live on a fixed income and can't afford to take care of us, instead of borrowing against the money he has in his 401k, interest free as the owner of the company he works for suggested to him. This would hold us over until my benefit payments can be established. Conducting himself in this manner alone is enough to bring him into a state of worthlessness and low self-esteem, which he has been exibiting since he chose not to draw from his 401k.
I'm at the point where I'm tired of being the supportive one. We've had all the talks and discussed the issues you've noted. We've been through a great deal in our 17 year relationship and yet when I looked back, what I saw was a man who displayed a pattern of never being there for me when the times got tough and I was left struggling alone. This is a lifetime illness and supportiveness is essential.
I will continue to talk, try to ease his mind, see how this is making him feel and where his concerns dwell. If he remains silent, unsupportive and continues to resent me because he has to work after my benefits come through, then unfortunately I will no doubt talk with him about the possibility of divorce.
Hopefully he's matured and his love has grew enough over the years that he will realize how important his love and suport is toward both my physical and mental well being this time. Even though our marriage has had it's ups and downs over the years, I'm confident that we'll be able to pull through this.
Thanks again for all the wonderufl input and encouragement you've provided.
Sometimes all that's needed is a little uplifting like this, when you've been down for as long as I've been. My day is again in a renewed light now.
I have a chronic illness, but at least I know what it is. I have abdominal adhesions that block off my intestines. Result: pain, nausea, vomiting. This problem will likely never go away, and I have accepted that.
What caught my interest here is how our husbands deal with chronic illness in their spouses. In a nutshell, chronic pain and illness impacts our entire lives, and the lives of those who love us and need us. I'm speaking in gross generalities here, but men are "fixers". Show them a problem, and they try to figure out a way to fix it. We, being the sick spouses, offer a challenge to our husbands, but it's one they can't fix. They get frustrated and many times unintentionally take it out on us. Logically, they know they're being idiots, but they just want life back the way it was when we were active participants. Not only does it take we patients to accept our illnesses and life changes, our loved ones must accept the changes as well. Who ever wants to have a major life change? No one! Illness forces major changes on us, and everyone deals with it differently.
I thank God every day for my husband. Sure enough, he panics from time to time because he is now the sole bread winner. It's a whole lot of stress. For how many generations have men been trained that their wives will help out financially? How many generations of men have been raised in the idea that there is no honor in being the financial head of the family? Men once took a great deal of deserved pride in supporting their wives and families - an idea that now seems old fashioned if not downright archaic in this day and age. Sad, but all too true.
It is up to us as patients to not allow our illnesses to define who we are. We may be sick, but we are far more than our illnesses. I had to flat-out explain this to my husband and give him permission to grieve for our old life while building a new one.
I think women tend to assume that our men "should" know how we feel, and never bother to put our needs to them plainly. Tell them plainly that we don't expect them to fix us. Tell them we appreciate the job they do to keep our families going when we can't contribute what we once did. Tell them we don't expect them to work miracles. It can be surprising how such frank statements help take off the pressure. And no, men really don't get it - unless they happen to be in the same boat. Sometimes just airing the fact that your lives are changed makes a world of difference. If both spouses can try to accept those changes and make the most of life in spite of them, the relationship will remain solid. As with any relationship, honest communication is the key. Instead of focusing on what can't be done, both spouses must focus on what CAN be done in their lives. Not an easy task in the best of circumstances, but surely not impossible.
OK, I'm taking off my shrink hat. LOL! I just thought some insight from a chronic illness patient might help some who are new at it.
What caught my interest here is how our husbands deal with chronic illness in their spouses. In a nutshell, chronic pain and illness impacts our entire lives, and the lives of those who love us and need us. I'm speaking in gross generalities here, but men are "fixers". Show them a problem, and they try to figure out a way to fix it. We, being the sick spouses, offer a challenge to our husbands, but it's one they can't fix. They get frustrated and many times unintentionally take it out on us. Logically, they know they're being idiots, but they just want life back the way it was when we were active participants. Not only does it take we patients to accept our illnesses and life changes, our loved ones must accept the changes as well. Who ever wants to have a major life change? No one! Illness forces major changes on us, and everyone deals with it differently.
I thank God every day for my husband. Sure enough, he panics from time to time because he is now the sole bread winner. It's a whole lot of stress. For how many generations have men been trained that their wives will help out financially? How many generations of men have been raised in the idea that there is no honor in being the financial head of the family? Men once took a great deal of deserved pride in supporting their wives and families - an idea that now seems old fashioned if not downright archaic in this day and age. Sad, but all too true.
It is up to us as patients to not allow our illnesses to define who we are. We may be sick, but we are far more than our illnesses. I had to flat-out explain this to my husband and give him permission to grieve for our old life while building a new one.
I think women tend to assume that our men "should" know how we feel, and never bother to put our needs to them plainly. Tell them plainly that we don't expect them to fix us. Tell them we appreciate the job they do to keep our families going when we can't contribute what we once did. Tell them we don't expect them to work miracles. It can be surprising how such frank statements help take off the pressure. And no, men really don't get it - unless they happen to be in the same boat. Sometimes just airing the fact that your lives are changed makes a world of difference. If both spouses can try to accept those changes and make the most of life in spite of them, the relationship will remain solid. As with any relationship, honest communication is the key. Instead of focusing on what can't be done, both spouses must focus on what CAN be done in their lives. Not an easy task in the best of circumstances, but surely not impossible.
OK, I'm taking off my shrink hat. LOL! I just thought some insight from a chronic illness patient might help some who are new at it.
I wasn't sure if I introduced myself yet. My name is Deb. I've posted my story on a few forums and have had wonderful responses, but your story is a lot like mine. I would like to talk more with you, if that's ok? Have you set up your inbox and profile on here, so you can tell your story? I think many people can relate to what has happened to us. If you already know how to register, and are, then add me to your friends list and send me a message. If you haven't registered then please do, you will like the way they have their site set up so that you can write a journal, send messages to other users on here. Then we could talk more. I would like that. If you have any questions on how to set that up, let me know. Thanks for everything Caroline. It's been hard and it's nice to talk with someone that's been down the same road. Please keep in touch. Deb
You can vent anytime, it is important to let that BS go! I wanted to tell you I went through the same thing as you with my husband at first. MY LORD! It was bad once I was told I would not be returning to work. Not initially but as he began to realize the financial burden and me=no income was beginning to weigh on him deeply. I was so hurt by his anger torwards me for something I had no control over. I couldn't understand this man that vowed to take care of me and wanted to take care of me for the rest of life is turning his back on me when I had no one but him. I lost my job, my car, my independence, my health, my life was a complete 180, and all he could do is make me feel guilty about the bills. Ummm....I never looked at him as a meal ticket....but being the "man" of the house, this is when it really counts unforunately, its not about how many pity parties you can have about bills you are responsible for. I would not want to be in his shoes but it is what it is. He married me because "he loved me more than I would ever know."
My children are from my previous immature, got pregnant too young, mistake marriage! So when they would have overnights with there dad I would only try to talk and work it out then so the kids would not be exposed to any yelling should it occur. IT DID! The resentment he carried would just turn into mean and hurtful things. I couldn't hardly take it on top of the illness. I wanted to give up and so did he but I refused. A marriage is so much more deeper than money. Instead of arguing back I started giving it back! He would make a nasty comment, and I would say "Are you done now? Your making an *** out of yourself, man-up!" or I would say "Your boring me with this redundent topic that was established weeks ago and your the only one out of our entire family that can't seem to let it go. Let it go, you will feel better, and belittling me for a disease is very cowardly of you. Your not the man I married. You are losing more of me daily." I tried having sincere sit down talks but he was to resentful, letters kind of worked once or twice, but not to well.
One morning I had to wake him up early to take me to the hospital per doc, and he was livid. He liked to have these occassional ***** fits about what I was doing wrong and make me feel horrible and worthless. Loved to claim "its the only way to get through to me", the first couple times sitting there crying and saying how sorry I was and doing my best to fix what I had done was over. The stress just boiled over on him that morning and I was thinking this is rediculous he is lashing out on me on things that have been taken care of over a month ago. I sat and listened, apologized was cooperative to listen to him put me down. He finally said some things that I just couldn't hold back the tears, he hurt me so bad. What was worse was what he was saying made no sense to what was going on at the time, he was just thinking of things to yell at me about. I was crying but kept my cool and looked him the eye the entire time and answered his questions instead of yelling. He finished and I went into the basement and just bawled, I didn't get it! I had been doing everything right and doing everything I could to help him, he was just using me as his excuse for his anger within himself. I was such a good wife to him, I am sick and this is what I get.
Something clicked because he realized what he had just done and never felt so bad in his entire life. He had never done it that bad before. I mean everyone lashes out but Aaron just wasn't the type to be in abuser category. Thats what that was and he knew it! He tried to apologize and I couldn't even look at him, I was so hurt. Finally I hugged him back and we both broke down, and he spilled his guts. Like I said he did have resentment and tremendous stress but come to find out his biggest priblem was he felt so incredibly bad for me it just came out all wrong. He didn't know how to deal with it so he didn't for two months he shut me out and pushed me away, typical male response to anything high stress. I didn't care! I was just so glad to be sitting there listening to him break his wall down. He apologized and I had some things to apologize for too, but it was mainly him.
Thats all it took, he right back to being the best husband ever and he comes home happy to see me and I am so happy to see him. We almost didn't make it, but by the grace of god we did.
Its been three weeks and it has just been so much nicer and we love eachother so deeply.
Your husband loves you! He is not mad at you at all, he thinks he is. He is mad for you but is to much of a man to break down his feelings. Thats why man could never have periods, babies or menopause...they couldn't and wouldn't handle it. The core issue is he is scared, scared for his wife and when your scared your first reaction is to get as far away as possible. Let him know when we you guys got married it was in sickness and health. If he puts you down or pushes you away give it it to him straight up. Tell him your sickness will not be used as his excuse for his unhappiness within himself. Nothings going to change your situation by him being a beastly ogre like my husband was. Say it as calmly and with as much respect and sincerity as you can muster. Keep on doing it too. He will begin to understand you are above that behavior and you were you alone before you met him. I know it is so hard! Some men get in a short time, some like my ex still doesn't understand anything after eight years.
It may seem immature to say this but you can break him down, he is to respect and honor, and hold you up like the woman you are. I told my husband one time it takes a real man to make their wife feel like a worthless piece of **** all because of money I can no longer bring in. That shuts em' up temporarily. Use that god given strength you were blessed with to make him want to see what kind of fool he is acting like. It takes time but don't quit! Unless its getting to the point where it is consuming your ability to focus on your health and depression is progressively getting worse. You got kids who need their Momma more than dad needs a reminder of how you are not his emotional punching bag. Let him be a mopey ball of anger-BY HIMSELF! You got things to do!
Hope I am not being to direct, sorry if I am. I just know how you feel and it sucks and you feel so alone fighting a huge uphill battle. You will be blessed ten-fold in the end if you do your best to your abilities.
God bless!!!!
My children are from my previous immature, got pregnant too young, mistake marriage! So when they would have overnights with there dad I would only try to talk and work it out then so the kids would not be exposed to any yelling should it occur. IT DID! The resentment he carried would just turn into mean and hurtful things. I couldn't hardly take it on top of the illness. I wanted to give up and so did he but I refused. A marriage is so much more deeper than money. Instead of arguing back I started giving it back! He would make a nasty comment, and I would say "Are you done now? Your making an *** out of yourself, man-up!" or I would say "Your boring me with this redundent topic that was established weeks ago and your the only one out of our entire family that can't seem to let it go. Let it go, you will feel better, and belittling me for a disease is very cowardly of you. Your not the man I married. You are losing more of me daily." I tried having sincere sit down talks but he was to resentful, letters kind of worked once or twice, but not to well.
One morning I had to wake him up early to take me to the hospital per doc, and he was livid. He liked to have these occassional ***** fits about what I was doing wrong and make me feel horrible and worthless. Loved to claim "its the only way to get through to me", the first couple times sitting there crying and saying how sorry I was and doing my best to fix what I had done was over. The stress just boiled over on him that morning and I was thinking this is rediculous he is lashing out on me on things that have been taken care of over a month ago. I sat and listened, apologized was cooperative to listen to him put me down. He finally said some things that I just couldn't hold back the tears, he hurt me so bad. What was worse was what he was saying made no sense to what was going on at the time, he was just thinking of things to yell at me about. I was crying but kept my cool and looked him the eye the entire time and answered his questions instead of yelling. He finished and I went into the basement and just bawled, I didn't get it! I had been doing everything right and doing everything I could to help him, he was just using me as his excuse for his anger within himself. I was such a good wife to him, I am sick and this is what I get.
Something clicked because he realized what he had just done and never felt so bad in his entire life. He had never done it that bad before. I mean everyone lashes out but Aaron just wasn't the type to be in abuser category. Thats what that was and he knew it! He tried to apologize and I couldn't even look at him, I was so hurt. Finally I hugged him back and we both broke down, and he spilled his guts. Like I said he did have resentment and tremendous stress but come to find out his biggest priblem was he felt so incredibly bad for me it just came out all wrong. He didn't know how to deal with it so he didn't for two months he shut me out and pushed me away, typical male response to anything high stress. I didn't care! I was just so glad to be sitting there listening to him break his wall down. He apologized and I had some things to apologize for too, but it was mainly him.
Thats all it took, he right back to being the best husband ever and he comes home happy to see me and I am so happy to see him. We almost didn't make it, but by the grace of god we did.
Its been three weeks and it has just been so much nicer and we love eachother so deeply.
Your husband loves you! He is not mad at you at all, he thinks he is. He is mad for you but is to much of a man to break down his feelings. Thats why man could never have periods, babies or menopause...they couldn't and wouldn't handle it. The core issue is he is scared, scared for his wife and when your scared your first reaction is to get as far away as possible. Let him know when we you guys got married it was in sickness and health. If he puts you down or pushes you away give it it to him straight up. Tell him your sickness will not be used as his excuse for his unhappiness within himself. Nothings going to change your situation by him being a beastly ogre like my husband was. Say it as calmly and with as much respect and sincerity as you can muster. Keep on doing it too. He will begin to understand you are above that behavior and you were you alone before you met him. I know it is so hard! Some men get in a short time, some like my ex still doesn't understand anything after eight years.
It may seem immature to say this but you can break him down, he is to respect and honor, and hold you up like the woman you are. I told my husband one time it takes a real man to make their wife feel like a worthless piece of **** all because of money I can no longer bring in. That shuts em' up temporarily. Use that god given strength you were blessed with to make him want to see what kind of fool he is acting like. It takes time but don't quit! Unless its getting to the point where it is consuming your ability to focus on your health and depression is progressively getting worse. You got kids who need their Momma more than dad needs a reminder of how you are not his emotional punching bag. Let him be a mopey ball of anger-BY HIMSELF! You got things to do!
Hope I am not being to direct, sorry if I am. I just know how you feel and it sucks and you feel so alone fighting a huge uphill battle. You will be blessed ten-fold in the end if you do your best to your abilities.
God bless!!!!
Thanks for reading my post and sharing your story with me as well. Please keep me posted on any new tests you are having done and I'll let you know what I find out as well. I'm going in at 9 am eastern time today for a breathing test. I feel like it's a waste of time and money like the tilt table test I had done, but this far in all I can do is keep checking every possible area. Thanks for your support and prayers. It's nice to have someone to talk to. Unlike your situation, my husband is distant and angry with me for my illness and job loss due to it and my children are 15 & 19 and they still can't grasp the extent of my limitations, even though they drive me if I have to go anywhere because I'm to the point that I don't drive anymore. To make matters worse, the majority of my problems began from hurting my back at work, but not being able to prove it until two years later and during that time getting promoted to an extremely stressful sedementary job which worsened my back problem and created a definite environment for Fibro to develop especially due to my family history of it, which I didn't even know about until after being diagnosed and then to top everything else, my work fired me after denying me ADA accommodations that may have prevented all this. I asked for my broken desk to be fixed so that it would go up and down with ease like all the other empty desks around mine, but they refused to fix it and one day when I tried to push on it to make it go down, I began having severe pain, took three steps away from my desk and collapsed tremorring all over. My Anesthesiologist said that the disc bulged and temporarily touched the cord causing my collapse. All I know now is, I'm left filing for SS, awaiting an EEOC and BWC hearing for this and it's been since Dec. 06 when I could no longer work and my husband has taken over all the bills including my truck payment and our parents have helping us with groceries and school expenses because my husband refuses to get money out of his 401k to carry us over until this is all settled. phew.......ok I feel better now. Sorry about giving you TMI. All this stress combined with my attorneys, doctors, SS office and my x-employer's attorney's has left me in constant pain, unable to walk, think clearly or even care what happens somedays. I found myself telling the SS office rep. that it's clear by the figures that I'm worth more dead than alive (as most people are) and the rep replied yep and you have a nice day. I just thought I would share a little humor from my life after all that stress I unloaded. Anyhow, thanks again for listening. I hope I can return the favour.
Hello There!
I am not sure how much actual helpful information I can give you. I can see that you are at the point of frustration were I am right now and it really really bites a big one!
You have surpassed the amount of testing I have by a long shot. That makes me wonder if the same thing will happen with me. I cannot believe I actually came across someone that shares the same symptoms as almost to a "T". I thought for minute it was in my head and was tricking myself into thinking these things were just me being paranoid of my situation. My situation goes like this:
July 1 2007
Sudden onset on lower leg pain in both legs when going up the stairs. It was summer obviously so I was wearing flip-flops all the time. I assumed it was a combination of that and over exerting myself-thought I shin-splints or something. Blew it off for about five weeks.
August 14 2007
Leg pain still prominent and beginning to interfere with daily activities, still thought it was injury. On a sunday legs swelled real bad within about two hours to the point my feet turned blue. Freaked me out called doc, started to cry and husband rushed me to urgent care ASAP. Good doctor, very detailed in questions. Immediately suspected Autoimmiune Disorder, considering my symptoms. Was given HORRIFIC MASSIVE DOSE of Prednisone injection, and given script for prednisone taper. 80mg x 3days, 60mg x 3days, 40mg x3days....you get the idea. Worked great until I got down to 20mg and was not so effective, and the side effects of predinisone or any steroid are just damb near unbearable, but of course they have to work great don't they, what a trade off!! Taper lasted two weeks. When I was done leg pain was in full effect along with swelling, numbness, shooting pains, couldn't/can't barely walk. or drive. Pretty much everything and anything physical with my legs was and still is a huge challenge.
August 2007
Since I didn't have a PCP I had to go back to urgent care again to see same doc. He said I looked miserable. Due to constant pain, I was and am miserable. Doc got me referal to rheumitologist/AI. D. specialist, waiting list was going about two months. Gave me Vicodin, wich I have taken before for pain so no biggie. He said until I can get further testing done by specialist I can only treat the symptoms. Naprosyn and antinflammitories do not go well with my stomache. Narcotics it was.
September 2007
Got a great PCP, very understanding, compassionate, and really listened to what I said. I began experiencing all of your above symptoms at this time, minus a couple. I was so depressed, confused, sad, and bitter. He was quite certain that one of my issues was a disorder called Raynauds Phenomenom, not the main issue, but a side disorder of the major problem. He helped me understand Autoimmune disorders a little better and got me on a good start to treatment-He gave me Cymbalta, Welbutrin (was currently taking), obviously pain meds-Vicodin 750x100tabs a month, and script for physical therapy 3x a week or pain management clinic. Whatever worked out best for me.
October 2007
Finally got appointment set with rheumitologist, in November. Blood work, MRI, x-rays, dopplers, ECG, and whatever else have been done. From what PCP can see, nothing sticks out, but he said thats what rheumi is for. Just that was frustrating to hear, I was for sure he would see something.
So now I have all these new symptoms:
-burning up into the forearms when I attempt to use my fingers-LIKE NOW.
-Burning shooting pains up into thighs
-confusion when its dark when I know my way around a familiar room.
-Severe light headedness when bending head back wards.
-Neck headaches-very painful
-Breakthrough pain with meds
-Very emotional
-Insomnia getting progressively worse.
There is so many! I do understand your frustration. I just turned 27 and have two young children that need a healthy mom. I feel like such a bummer to them sometimes, but they have been great and very helpful. My husband has been great too!
There are so many A.I. Disorders that it is so difficult to diagnose it took my moms docs seven years to give her a diagnosis for Fibro, Lupus, and Rheumitoid. Its miserable playing the guessing game but with all the medical advances and new testing, you will find out and get a name for whats up with you. Just hang in there and never take the B.S. docs like to throw at people because some think were to nieve. Do lots of research, online is your best bet for being most accurately updated. Another thing, its okay to get angry with your doc and say "Why???" or "Can we try...". Get a second, third, fourth twentieth opinion until you get your answer. Don't Give up!!!
I will keep you in my prayers and I wish you the best in everything!!!!
I am not sure how much actual helpful information I can give you. I can see that you are at the point of frustration were I am right now and it really really bites a big one!
You have surpassed the amount of testing I have by a long shot. That makes me wonder if the same thing will happen with me. I cannot believe I actually came across someone that shares the same symptoms as almost to a "T". I thought for minute it was in my head and was tricking myself into thinking these things were just me being paranoid of my situation. My situation goes like this:
July 1 2007
Sudden onset on lower leg pain in both legs when going up the stairs. It was summer obviously so I was wearing flip-flops all the time. I assumed it was a combination of that and over exerting myself-thought I shin-splints or something. Blew it off for about five weeks.
August 14 2007
Leg pain still prominent and beginning to interfere with daily activities, still thought it was injury. On a sunday legs swelled real bad within about two hours to the point my feet turned blue. Freaked me out called doc, started to cry and husband rushed me to urgent care ASAP. Good doctor, very detailed in questions. Immediately suspected Autoimmiune Disorder, considering my symptoms. Was given HORRIFIC MASSIVE DOSE of Prednisone injection, and given script for prednisone taper. 80mg x 3days, 60mg x 3days, 40mg x3days....you get the idea. Worked great until I got down to 20mg and was not so effective, and the side effects of predinisone or any steroid are just damb near unbearable, but of course they have to work great don't they, what a trade off!! Taper lasted two weeks. When I was done leg pain was in full effect along with swelling, numbness, shooting pains, couldn't/can't barely walk. or drive. Pretty much everything and anything physical with my legs was and still is a huge challenge.
August 2007
Since I didn't have a PCP I had to go back to urgent care again to see same doc. He said I looked miserable. Due to constant pain, I was and am miserable. Doc got me referal to rheumitologist/AI. D. specialist, waiting list was going about two months. Gave me Vicodin, wich I have taken before for pain so no biggie. He said until I can get further testing done by specialist I can only treat the symptoms. Naprosyn and antinflammitories do not go well with my stomache. Narcotics it was.
September 2007
Got a great PCP, very understanding, compassionate, and really listened to what I said. I began experiencing all of your above symptoms at this time, minus a couple. I was so depressed, confused, sad, and bitter. He was quite certain that one of my issues was a disorder called Raynauds Phenomenom, not the main issue, but a side disorder of the major problem. He helped me understand Autoimmune disorders a little better and got me on a good start to treatment-He gave me Cymbalta, Welbutrin (was currently taking), obviously pain meds-Vicodin 750x100tabs a month, and script for physical therapy 3x a week or pain management clinic. Whatever worked out best for me.
October 2007
Finally got appointment set with rheumitologist, in November. Blood work, MRI, x-rays, dopplers, ECG, and whatever else have been done. From what PCP can see, nothing sticks out, but he said thats what rheumi is for. Just that was frustrating to hear, I was for sure he would see something.
So now I have all these new symptoms:
-burning up into the forearms when I attempt to use my fingers-LIKE NOW.
-Burning shooting pains up into thighs
-confusion when its dark when I know my way around a familiar room.
-Severe light headedness when bending head back wards.
-Neck headaches-very painful
-Breakthrough pain with meds
-Very emotional
-Insomnia getting progressively worse.
There is so many! I do understand your frustration. I just turned 27 and have two young children that need a healthy mom. I feel like such a bummer to them sometimes, but they have been great and very helpful. My husband has been great too!
There are so many A.I. Disorders that it is so difficult to diagnose it took my moms docs seven years to give her a diagnosis for Fibro, Lupus, and Rheumitoid. Its miserable playing the guessing game but with all the medical advances and new testing, you will find out and get a name for whats up with you. Just hang in there and never take the B.S. docs like to throw at people because some think were to nieve. Do lots of research, online is your best bet for being most accurately updated. Another thing, its okay to get angry with your doc and say "Why???" or "Can we try...". Get a second, third, fourth twentieth opinion until you get your answer. Don't Give up!!!
I will keep you in my prayers and I wish you the best in everything!!!!
Have an Answer?
You are reading content posted in the Autoimmune Disorders Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
