Still dont know

I have been told I have fibro, Sjogrens, (neg blood work), ANA is normal,, but I have no idea whats going on with my body

for the past three years I have had every test known to man,, I do have small fiber neuropathy,, from what is not known, I cant tolerate any temperature difference,, my arms are getting worse by the day,, they burn constantly,, my hands are numb, my spine feels like its being ripped out, I am so tired of going to my GP only to hear him say your bloodwork is normal

I have tried to help my wife remove wallpaper from the bathroom and for the past 2 nights my arms and hands are screaming in pain, my legs will twitch and spasm, typing this is hard as my hands are numb, I dont want to eat,, food never seems to move through,, its lie the nerve endings are dead,

I have to wear pajama bottoms under my jeans,, I cant take the chill in the air when I take the dog out, same with my hands,, but its not reynauds, I was in tears last night in bed, my arms were hurting so bad,, and the odd thing is this,, if I have to get up to go to the bathroom,, when I lay back down it takes a hour for everything to settle down, my hands will be red hot,, my arms will be screaming in pain,, my legs willl be twitching,, I;ll need to take my PJ bottoms off,, socks have to come off,, anything to try and stop teh spasms that happen,, I keep telling my wife I need to be in a hospital to get this figure out,, and she says I should be too,, but truth be told,, I feel like i have waited to long and now I have permanent damage,, and it will be my own fault,, I have been shoved through teh medical maze for so long that I no longer trust any doctor,, I have be told its fibro,, and the lowest blow was being told it was a Somotoform disorder,, I dont think that would cause me to lose 30 lb,, make me scream in pain, I agree that stress that can make things worse,, but comeone,, something is going on,, I can barely walk,, my shoes feel like diving shoes,,

I cant cross my legs,, they go numb and stay numb,, from the knees down I get shock like feelings,, in 09,, I was told I had a Chiari malformation,, and they thought maybe that was causing it,, so lie a fool I got operated on,, two weeks later I had spinal fluid coming out of the incision in my neck,, ended up with bacterial menigitis,, almost died from that one,, I live in Pittsburgh,, and have lost any hope of anything ever being found,, going to a er is a waste of time,, tehy run there same bloodtest,, say your ok while you have to drag yourself out of hte ER,, with instructions to see your GP,,, I admire any of you with this horrible affliction,,

I am a male 56, married tomorrow for 38 yrs,, and two great sons who see dad just coming apart more every time they come home and see me,, if you people think this is fibro,, let me know what you think,, I have read the symptoms,, some fit,, some dont,,

If I put a shirt on or try to do anything over my head, like even put a sweater on,, my whole body will go into spasm,, and almost take me to my knees,, its bizarre,, I just dont want to end up in a hospital for xmas,, been there done that before and ended up discharged the next day without any real diagnosis,, any suggestions?

Be sure to watch the video that's linked near the bottom of this page http://www.sjogrens.org/home/about-sjogrens-syndrome

I hear your cry. One day I had a Psy. Dr. write up that I might have somoform also. I was aggravated when I read that. I just described how I felt with those symptoms. I guess they dont think nobody can have that many problems at one time. Your symptoms sounds so much like mine. Last night my thumb curled so tight under my palm of my hand and caused so much pain. I had to masssage it to release it and applied heat for comfort. I have been taking less magnesium, so I am going to go back on it daily and monitor what happens. I sometimes tell myself do I have a crazy muscle disease? As I listen to others on the forum, I think it's probably fibro symptoms. I dont take muscle relaxers, but I might need to mention them to my Dr. I just try to refocus on positive things. I try to stay busy, but not over do it. I have had numerous MRI's, Ct scans, blood work, multiply hospitilizations many years ago with coming out with diagnosis of Fibro mostly. Yes I have a clotting disoder, seizures, 3- cervical fusion, but the fibro symptoms cause me havoc at times. I hope you find some positive things out of Christmas. I might not have as much money as before, but I am very blessed.
Sit down and write down all the positive things that we have, you will feel a little lighter.

Hi there,

Welcome to the fibromyalgia forum Fibro ?.

I hope that you get a dx soon so you know exactly what you are up against. You may be going through a flare. Have your symptoms always been so severe? I hope that it subsides soon to a managable state. I know I will always have pain and I have accepted this. I know that at this time that there is no cure. I have accepted that too. Sometimes we have to stop looking at the big picture and only deal with the problems at hand. Instead of trying to figure everything out. Fibromyalgia is kind of a mysterious disorder. There are many strange symptoms. And a lot of them mock other illnesses. So it is very frustrating to try to get a dx. But in time you will. In time you will learn to accept this illness for just what it is. You never know how you are going to feel the next day. It is very hard to deal with. But it can be done.

Have patience. Learn to take each day as it comes. Try to keep a positive outlook. It really does help to do that. Try to keep moving, but PACE yourself. I have problems doing anything where I have to have my arms up in the air. Even washing my hair is difficult at times. I can say though, since I have been on meds, my pain isn't nearly as bad as it once was (knock on wood). In the beginning it was horrible. I slept for almost two years. I had never ending pain and fatigue. But with the help of medications, I can now function (not as good as many, but better than it was). I hope that you find what works for you. Keep us posted on that. Take care. Feel better soon.

Hugs, Karen

Reading your post brought tears to my eyes. I'm so sorry that you are are in such pain and feeling such frustration. I agree that you should see a neurologist. I see a handful of specialists... a rheumy and neurologist included. It helps to have differant docs with differant expertise.

I do understand the countless tests, the waiting, the wondering and praying for relief and I know how stressful it can be. Make sure you take time to do some form of relaxation therapy to do what you can to alleviate stress. Deep breathing and meditation can help with pain. Stress pumps cortisol into our bloodstream...muscles tighten up, nerves can go haywire and we hurt all the more.

We are all here for you!!! Post often, we care :)

Hugs, Robin

It is also helpful if you can see a doctor from a teaching hospital or a diagnostic clinic. My rheumy referred me to both to get confirmation of my diagnoses.

Hi, Fibro?, and welcome!  Yes, your symptoms are quite severe and you have gotten great advice to see a neurologist.  I know I would want everything checked out if that were happening to me.  Some of the things are familiar with fibromyalgia but fibro has may of the same symptoms as other illnesses and those have to be ruled out first before a diagnosis of fibromyalgia be given. 

 

Be sure to check out Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.   Good starting links to read are Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  See if this sounds like what you are going through.  Your descriptions sound extremely severe so that's why we feel seeing a neurologist would be good.

 

Please let us know what you do because we do care about you.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine 

Try not to get too worked up about it. The stress will only make you feel worse. No matter what it is. It could very well be fibro. There is such a mirad of symptoms. Keep seeing your doc. Try to relax. At least you don't have the back pain today. That is a good thing. I am sorry about the numbness. I hope you get this figured out soon.

Best wishes,

Hugs, Karen

Yes, it's extremely frustrating when you want to know what's going on with your body and medical professionals act like you're a pain in the butt, just because they don't know, and frankly, a lot of them don't care! They'd be singing a different tune if it was them going through it...

That happened with my dad. I kept expecting someone to really take an interest and take hold and get to the bottom of the problem, and no one ever did. Thankfully, he was 87 and didn't suffer long. But I still hold some grudges (bad, I know.)

I agree with Sherrine. The best help we got was from a doctor at a teaching hospital, but by then, my dad was too weak to keep going all the way to another city. They are up on all the latest research, techniques, etc.

Debbie

Thank you all,,

I do know that I have had at least EMG studys, at least 6 lumbar punctures, so many MRI;s of my spine,, and now its down to this,, hands that are numb, today its the burning in the arms,, my skin feels so itchy but I know its the mscles that are screaming in pain,

I cant hold my arms over my head and now at night both of my legs will spasm and curl inwards,, I have told the neuro that i believe its my spine doing some of this,, but she has said that she reviewed the films and said no compression,, I sometimes think theres a syrinx back there,, even little scratches feel like gashes on my skin,, and I cant imagine that fibro in any form would cause numbness in the hands and feet,, if you ever want to get well,, dont come to Pittsburgh looking for any help, there attitude here is suck it up and suffer,,

Sounds like what I learned about Sjorgens at the link I posted above. The immune system attacks the parts of the body that produce moisture. You may have 2 things going on.

Fibro- Do you have Raynauds? I have that and living in Alaska can be tough. I now wear extra layers of clothes. I lost my big to to raynauds. I sleep with my heating blanket on high and sometiems a heating pad also. lol

No, they nnever said anything about that,, today is probably one of the worst days,, just walking a little leaves me screaming in pain from head to toe,, arms burn,, fingers numb,, legs wobbly,, everything is a mess,, now my guts dont want to work,, I give up trying to find out whats wrong