9 months of burning pain and still no diagnosis. Brief history: I'm 41,thin, exercise (it helps)... have had Hashimotos' hypothyroid for 15 yrs, on med for that. In January, I changed birth control from one I'd been on 12 yrs to one with lower estrogen (in case that's relevant--it was my only change--no accidents, injuries, etc)
So in January--the pain started as carpal tunnel, but got severe and progressed to my arm and shoulder.
Normal sed rate, neg ANA, neg RH factor, normal glucose (fasting), norm A1c, normal CBC... neg for lyme and a ton of other things like that.
B12 was "high (>1000)", folate high at 17. Only abnormal was my TSH had gotten way high (9.75), we increased meds, it began to fall--normal limits now.

EMG done on carp tun area only--showed CT. I started PT in March and after 7 weeks, no improvement in shoulder pain. P/T did a "rib mobilization"-that night pain had spread all over chest area. The pain is a burning--lit on fire, not tightness. It feels superficial, skin-not deep. The area is usually (not always) warm to my touch while burning.

Neurologist--said a type of paresthesia--a "sensory neuropathy".
He said all that is left is an MRI of my thoracic area. The pain does NOT wrap around--it is primarily most intense across my upper chest down to breast area.

It does stay constant nearly all day--mornings are usually most tolerable.

I really do eat very healthy (though if anything too low fat, but take fish oil). I have tried the various supplements rec here (currently just taking a multi, fish oil, extra B1--the beno...that Mrs D talks about). Was taking a ton of dif things and nothing was helping so I simplified.

Also take metformin, birth control and thyroid meds.

Have been presc. neurontin by Internist and Cymbalta by neurol.--have not tried either yet.

Sorry this is so long-thanks for any advice and for reading

wanted to add this--I have learned, from reading here, that "finding an answer"/ diagnosis, is not (supposed to be) the most important thing. And for the last several months, I've gradually gotten more OK with that idea. But then there are moments when I just want an answer.
I asked my neuro last week if stress could cause this. I have been under chronic emotional stress--though I have survived MUCH more in the past (death of parent, marriage stress...), the current stress (child related) feels unending.
He said usually his patients are not the one to think stress is behind their pain, but I don't care-I just want some explanation at this point--a direction to go.
Sorry, guess this is mostly a vent. But if anyone has thoughts, widom, ideas--thanks

I have had a fair amount of child related stress. My eldest son, who also has inherited my neuropathy is an alcoholic with Asperger's syndrome, an autism spectrum disorder. He is ill, accident prone, depressed, and lives and works overseas in an unpredictable environment. We have five children, the two youngest have learning disabilities, the youngest has physical disabilities as well. Our other adult children have had more than their share of disappointment and less than their share of success, despite academic brilliance. I am definitely in more physical pain when under a lot of emotional stress. I am sorry if this makes it sound like child related stress is, indeed unending. In my experience, it is.

That doesn't mean it is in your head, or that the stress causes the pain. I think it just creates a tension in the body which makes the nerves even more sensitive than usual. If the carpal tunnel is bilateral there is more to it. Did they check for pinched nerves at the elbow?

I went though a period of burning much as you describe. It faded away slowly over a period of weeks, leaving me only slightly more sensitive than I had been. It may clear up on its own.

I do not think anyone would say that pursuing a diagnosis is not important. It is, because many neuropathies are treatable. What is important is to come to terms with it if yours turns out not to be one of those. Generally speaking only hereditary neuropathies are completely untreatable, and yours does not sound like one of those since symptoms started in your hands.

Personally,I think a low fat diet is unwise, especially with nerve issues, and a few fish oil capsules are not going to make up the difference, but I am not an expert.

I do not know if neurontin will help with the pain you describe, it does help me with the burning and buzzing in my feet. It did not appear to affect the sunburned feeling. Nothing did.
I have no experience with Cymbalta.

If you have reason to believe stress is a contributing factor, would you be wiling to try meditation targeted to chronic pain, such as Jon Kabat-Zinn's Full Catastrophe Living? It is a little complex, but even simple meditation techniques can help you deal with stress better. Radical Acceptance is another good title. Good luck. What you are going through sounds very scary, but it cannot hurt to learn how to handle stress better while you look for a physical cause.

My hypothyroidism caused severe PN for years.
When I was pregnant it was the worst is ever had been.

Don't underestimate what hypo can do. When it is going on the body gets deposits of mucin around ligaments and edema results as well. The mucin doesn't go away, at least it didn't for me.

I'd consider your birth control pills, as a potential problem too.
Do you absolutely have to take them? Hormones (like during my pregnancy) also cause edema in the tissues.
This varies from person to person.

My carpal tunnel ran up my arm too when it was at its worst.
I'd wake up during the night feeling like my whole arm was on fire. 3 days after delivery, most of it resolved, as the physiatrist predicted.

It is difficult to find anything about mucin that is "useful" on the net. I just tried again, and found next to nothing. I don't think it has been researched much. One article said it "may" resolve YEARS after treatment to normalize thyroid function.
Therefore I don't expect doctors to know much about it either.
You can try searching as well. If you find anything useful, please link it here.

I know it took a full year for my feet to improve after I started levothyroxine. I did not get 100% back but a good 85-90% which is liveable. I did not use ANY HORMONES for menopause as a result. My hands still flare up enough to require my wrist splint braces now and then, usually when I overdo gardening/digging or carrying very heavy things like boulders etc. Hand sewing is also off the table. I can do needlwork for about 15minutes, tops!

thank you susanne and mrs d--wish i could type more, but can't now--just had to tell you how much it helped me to read your words--i had been mostly better (not phys., but emotionally)--then today was a terrible wave on all accounts and it took me to that pit--thank you for offering hope

I am not sure what my PN is from either, I have an idea. It's either my hypothyroid or pre-diabetes, which I have diagnosed MYSELF because the doctor only checked fasting and it was a 90 which is not considered high until it reaches 100. However, I bought a meter and found that my numbers spike up to 189-245 when high carb meal consumed. My research has shown a person has usually had diabetes for several years BEFORE a fasting number reaches 100.

Anyway, all that to say, I have theories but the cause is still unknown for sure, but treating symptoms is a priority. I got on thyroid meds, and am keeping my glucose readings below 140 at all times.

My biggest relief? Finding out about Benfentiamine! Within 2 days of starting it the burning in my feet improved 90% and after a month or so still gone, occasionally I have flare ups but still, this supplement has been a God send, and no doctor helped me find this.

Also, I would NOT say you had high B12 levels at 1,000. My number is 4,000 and I supplement every single day because it helps. Throw out "normal" for B12 and listen to your body.

Good luck, it's all trial and error

Thank you Mrs. D--this gave me some hope "Don't underestimate what hypo can do."
My latest labs showed TSH at 1.1, FT4 at .99 and Ft3 at 2

"I'd consider your birth control pills, as a potential problem too.
Do you absolutely have to take them?"

Although I am thin (5'3, 102 lbs)and exercise daily, I have PCOS. I take the birth control to regulate testosterone, and the metformin because my fasting glucose was 109 back in 2002. I have a family history of diabetes and heart disease.

The carpal tunnel has definitely improved, as has my circulation (never been great, but at least the blue hands are gone!--not raynauds)

I had previously read some about mucin I think--or at least some people finding relief with mucinex-? related theory?

"I know it took a full year for my feet to improve after I started levothyroxine."
I will keep pressing on. So far, I have not take the neurontin or cymbalta prescribed...I hate taking more meds when I already take a lot. But for a night of sleep, for patience...maybe I need to give it a try.

I know you do not take any meds for your pain (right?).I have held off as long as I can I think. If you or anyone has advice--I'm leaning towards the neurontin only because I don't plan to take either "long term" and I assume with even a low 30mg dose of cymbalta, I might have withdrawal effects?

Thanks again

I take oxycodone along with the neurontin. 7.5 mg, twice a day. It allows me to move, walk, do some housework, and engage in relatively normal activities which I cannot do without additional pain relief. I do not know if something like this would work for you, but if pain is keeping you from doing things that you like or need to be able to do, insist on pain relief. It can make a huge difference. I would have a very poor quality of life without pain management. With it I can cope with progressive sensory motor neuropathy and arthritis.
Many people are afraid of pain medication, but when you move into the area of chronic pain conditions, it is important to come to the subject with an informed but open mind. There are many commonly prescribed drugs with far more side effects and psychoactive properties than opiates.

Mucinex (guaifenesin) is a product OTC that helps move mucus out of the respiratory tract. It is named after "mucus". At one time it was suggested for fibromyalgia patients, but I don't think that proved to be effective.
http://enc.tfode.com/Mucinex

Mucin is a polysaccharide tissue that gets deposited in the deeper layers of the skin, sometimes along ligaments, and is connected sometimes to myxedema (hypothyroidism). It may cause carpal and tarsal tunnel in patients with hypothyroidism.
I used to have large "ganglion type fluid filled cysts" on the tops of my wrists. But with treatment those shrank away. I am not sure if that was mucinosis, but it did seem connected to my problem.

There is a condition called mucinosis, which is independent of the thyroid, that may occur rarely...mostly in older people. I have not found a cause for this type.

There is also a condition called reticular erythematous mucinosis, which is red and inflamed and causes patterns on the skin. Sometimes in response to UV radiation.