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Avatar universal

Nerve pain?

May 2009 i had my thyroid removed, multinodular goiter. Ever since then i started experiencing tingling and pain up and down my arms and the pain is now going to my legs. It is generalized to my joints mainly, there are times where the top of my skin on my arm is tingling and numb. My Dr. ran calcuim, tsh, sed rate, ana and a lot more that i cannot think of at the moment. The pain continues and nothing has worked to keep the pain low or away. Six months after that started My joints started swelling. Mainly my bursa but my wrists swell at times too.

I have seen a neruologist, he ran a nerve conduction test and he said everything is normal. So what could itbe? I am pretty sure it's nerve related, the pain i get is like when i hit my funny-bone and it's so painful but it's in my joints. There are no obstructions in my nerves that they can tell from the conduction tests, and when the pain started going into my legs and feet the Dr turned to me and said i dont know how to hwlp you but come and see me every month. (Which i have not.) All my levels are normal, even my sed rate when my shoulder is swollen. I am at my last straw with the Dr's and i am unsure where to look.

I have found Chronic inflammatory polyneuropathy. Which seems to cover my symptoms, and a few months after my thyroid was removed i began experiencing IBS on a daily basis, now it is an every other day issue. I dont see a relation to the Chronic inflammatory polyneruopathy, but it's wirth a look i think. I had brought it up to my Dr's and they refuse to dive into the subject. I cannot find another Dr. in my area that will help or accept my insurance.
Has anyone had similar pain, sypmtoms or issues? I am looking for help in diagnosis seeing how my Dr's do not want to help but just write me prescriptions to medications that do not work.

I have tried Cymbalta, and a few other anti-depressants that had an off label use for pain, unfortunately those medications AMPLIFIED my pain and it was all bad. I am now on gabbapentin, which helps when the pain is mild but not bad. So i have nothing to help other then get through my work day without looking like i am in constant pain. Also, i seen to notice that when the barometric pressure drops suddenly i get a lot worse. But it also gets worse just out of the blue as well.SO i am not sure what to make of that. Please help!
5 Responses
1291268 tn?1274814522
I have CIDP and appreciate what you are going thru.
How much gabapentin do you take?  I take 1800mg a day but the pain and discomfort drives me up a wall.  
Guess I need the same answer you do.!! Good luck.
Avatar universal
How did they diagnose you? My doctors give up and dismiss what i try to look into. I am taking the lowest dose 100, but i am supposed to take 2 pills, i have been taking 3. It helps some, but i agree, it's horrible pain.

Do you experience pain when the barometric pressure drops, when it starts to rain? How long have you been diagnosed with CIDP? After an episode, do you experienct severe muscle weakness in the area that was affected? I went to sleep last night and when i laid down my shoulder went numb and the top of my skin on my forearm went numb/tingly. I woke up with minimal pain but exhausted!

Is there anything you have been doing that helps? I have seen a chiropractor, that helped for a little bit, but then i started getting into massage therapy. It helps me relax which helps the pain a bit. Except when it decides to rain i go through it all again.

Sorry for the lengthy respnse, i don't have anyone to talk to that understands what i am going through. What do you think of Fibromyalgia? I personally do not see that as a disease and refuse to be diagnosed as that, besides the cymbalta they use to treat that made my pain a million times worse, like my body was in shock.

Does it affect your joints? The smallest joints in my fingers are affected the most, it interferes with my job, i sift thru paper and it hurts so bad, i type, which is okay for a while but after an hour or so my fingers tinlge a lot.
1291268 tn?1274814522
My diagnosis of CIDP was a process that culmiinated in a nerve biopsy.  I had a 5 inch piece of nerve taken from my leg and sent to the mayo clinic who gave me the final diagosis.
If your nerve condution tests were normal then I don't think a biopsy would be fruitful.
I have had 'chronic' long term damage to my peripheral nerves.  It bothers me 24/7 and impairs my mobility significantly.  
Since you are young, You could very well be experiencing the 'inflamation' of the nervous system and effects of that.  Without the demylination of the nerve itself..  Just a guess on my part.
I would urge you to go to a psychiatrist.  Now be assured, I DO NOT think you are 'crazy'.
Many people think that when they hear this. A Psychiatrist is a great option for what you are experiencing.  Keep in mind, anxiety and depression are ALSO neurological problems and can be just as disabling, if not  more so. They are trained neurologists and can well guide you thru what you are going thru and help treat your symptoms as well.  A consultation can help.   I have seen them for over 30 years.  The very first one told me 'we'd be always looking for a physical reason' for the anxiety and depression I experienced.  I don't know if CIDP is the reason, but having ones nervous system attacked repeatedly over years didn't help.
I 'wondered' around in circles for years before getting help.  
Don't make that mistake ..  Find a good psychiatrist and work together to find relief from what you are going thru.  
Let me know how you make out and good luck..
911669 tn?1294102788
Hi Sarah,

Sorry to hear about all your pain.  I think you should see an endocrinologist or maybe even a rheumatologist.  Since you just had your thyroid removed, this possibly could be endocrine-related.

Best of luck to you...

terri
Avatar universal
I have seen an endo. He dismisses it. All my levels are normal/average. I have yet to see a rheumatologist. The weird thing is my little sister has had Eurythema nodosum on her legs and it affects her joints. I am not sure if that is related to what i have but it is odd. When they did i biopsy of my thyroid they did hit a nerve, that jolt went thru my entire body which leads me to belive that after the surgery something may have put pressure on my nerves.

My primary thinks that my body did not respond well to the surgery and that it caused my immuse system to act up. Which i can see is possible, she is amazed however that my smaller nerves are affected and not my larger nerves. At times my fingers, arms, toes or legs will become tingly or numb.

I had seen another neurologist who swears all my issues are because they took out my thyroid and he ranted and raved that they were stupid to do so, when i had no choice the nodules were growing, not shrinking. I was put off by his discussion when i saw him, if it is a common thing to happen after a thyroidectomy why is there not enough information or studies about the issue? Now i get me levels checked monthly and they are always normal, a good normal. What if the surgery did cause my immune system to go wacky? It is hard to believe but my symptoms are never the usual normal symtpms to anything.

I had my gallbladder removed the year before and my symptoms before they discovered it were outrageous. Come to find out i had no stones but just inflammation, one day my gallbladder decided to quit working. Then they found nodules on my thyroid.

Is it possible for RA to form after a surgery like that? I knoe RA can form because of hormonal issues. I am at my last straw with this pain as my work is too. I am useless at work because all ido is file papers and type, if the pain is bad enough i can't do either. I cannot find a doctor anywhere near me that can sit down explain it to me and find an answer. Its frusterating.
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