Please help! does anyone know what is wrong with me?

I am trying to figure out what is wrong with me since my symptoms seem to be getting worse. I have TN 2 but my concern is my other pain on my body parts. It feels like my skin is on fire or a really really bad sunburn or something. It hurts to have clothes on those areas rubbing on them. Just the other day my arm started hurting and the air conditioning in the car was blowing on it and the pain exacerbated so much that I could not stand it. It felt like my arm from my shoulder to my elbow was on fire! So those symptomatic areas are my arms(mostly right), some random areas on my legs like my quad areas, sometimes the top of my right foot, a baseball sized area on my right shin, and now my palm, and the top of my right ring finger. It can last from 1 day to 3 days. No rashes or anything else. Just pain...awful pain..

I am desperate to find an answer so I can medically manage it somehow. It started about 11 years ago just on my quad areas and seems to be slowly spreading. Does anyone know what is wrong with me???

To me this sounds like the beginning of neuopathy. Something to ask your Doc about. Before I got sick I was a caregiver for a patient that had peripheral neuropathy, There is also small tissue neuropathy as well that can effect more of the skin surfaces as well. Both would be good to look up and talk to your doc about.

The other thing is make sure you look up the meds you are on. Check all of the side effects of all of them. My neurologist never heard of getting swollen glands from tegretol or lamictal but they are both side effects of both that are listed as allergic reactions.

ORNURSE, I agree with the previous answer that it does sound like a type of chronic regional pain syndrome or peripheral pain syndrome. Definitely see your neurologist who can do specific neurological tests to try to pin down a diagnosis. My husband has just gone through this testing for pain, burning, tingling…just the water from the shower felt like glass shards on his skin. His clothes have to be loose and soft. This is mainly in his hip, quad, and leg. He was diagnosed with “Meralgia Parasthetica”, a nerve pain condition. Yours sounds like it started out confined to quads, but became more widespread, but sometimes pain conditions left untreated can turn into more widespread chronic pain syndromes. Try to get a diagnosis.

I am not a doctor so I'm not sure. I really hate that you are going through so much pain! I have a friend that had similar symptoms and was diagnosed with a nerve disorder in his neck. This affected his nerves in his spine which can affect any group of nerves throughout the body. He had so many scans that did not show anything so don't panic if this happens. Talk to your neurologist about this being a possibility. I hope this helps! Just remember you are not alone and you are not crazy or imagining it!

wow

Please contact your Doctor immediately ! It could be anything. This is very odd

~E

Guillain-Barre Syndrome (GBS) did you try looking this up? This is my first thought when I read this my good friend also has this disease. They had a hard time diagnosing him. Friend me if u have any questions I can get you in contact with him.

As GBS effects one's ability to breath, I would not first think this. My concern is a medication reaction, or the nerve disorders that have been mentioned.

jstagrl29 said:

Guillain-Barre Syndrome (GBS) did you try looking this up? This is my first thought when I read this my good friend also has this disease. They had a hard time diagnosing him. Friend me if u have any questions I can get you in contact with him.

I think you should look at chemical exposures in the OR as cause. I’m a nurse who did a lot of research into chemicals affecting nurses health. One. Nurse I spoke with had symptoms similar to what you describe from gluteraldehyde exposure. her nerves were demylenated from exposure. She was washing scopes in a tub of this chemical with gloves on . She inhaled the chemical.What kind of chemicals are you exposed to? Do you do sterilzing?

I would agree with neuropathy. It is mentioned often on the lyme group on facebook that I belong to. They also mentioned actually feeling cold and having a low body temp. along with the burning skin.

I agree with everyone about seeing your Neurologist immediately. You don't mention what medications you are on and what side your TN is on and if it is the same as the other issues. I developed non-epileptic seizures that are now part of my daily life as my body can only process so much pain. It could be that your body is telling you to listen and you should. You can get run down and suffer the same as someone with a suppressed immune system. Talk to your doctor.

Hi I have that too on my forearms I have type 2 as well! I hope we find an answer. I had an mra done on Thursday will get results Monday n I’ll ask them. I’ll let u know what they say

A neurologist should be contacted immediately, to evaluate the symptoms you report. Allergic reactions to medication can present in the way you have described. So also can neurological or auto-immune disorders other than TN, such as MS, systemic vasculitis, Shingles, or Lupus Systematosis. Fibromyalgia can overlap these symptoms. A neurologist can quickly eliminate many of these possibilities in an in-office interview. Please see your doctor ASAP.

Hi Renee. My neuro said nothing showed on my mri. Im interested in hearing what your doc has to say. I was able to get lidocaine patches for my forearms. They don't stick very well so I made sleeves to keep them in place. I wear a jacket all day long at work so no one sees it.

Thank you to everyone else who commented on my post. I appreciate everyone's input. It started about 6 years earlier than my TN, about 10 years ago. I am now on Tegretol XR 1200mg daily which worked like magic for both my TN and my nerve pain throughout my body. Then about a year later it all came back. I tried baclofen, cymbalta, and neurontin one at a time with the tegretol. None worked. I am waiting to hear back from my neurologist to see what he thinks we should try next. In the meantime I am working on less caffeine and sugar as those two are my weaknesses. I am also increasing supplemental vitamins and fruits.

My labs have all come back negative. Three times my Ana came back positive in the past but the most recent one from a few weeks ago came back negative. weird. I am aware of false positives...

I do not work with sterilization of the instruments in surgery anymore. I did when I was in the military but that was
.15 years ago. I have take in alot of plume from thousands of surgeries...that was a good thought but I don't know if anything has been proven about that yet.

Again, thank you everyone for your input. very much appreciated!!
Renee ssid:

Hi I have that too on my forearms I have type 2 as well! I hope we find an answer. I had an mra done on Thursday will get results Monday n I'll ask them. I'll let u know what they say

I am not a doctor but sounds like how I feel when my fibromyalgia is flared up . I would diffently talk to your doctor

Is it Shingles? Have you tried Acupuncture? I finally became allergic to Tegretol and Neurontin because they were giving me such high doses to try and stop the pain. I was getting pain like yours as well. Cyclobenzaprine (muscle spasm relaxer) helps too, but makes me really sleepy,so I can only take it at night, or when I can't stand it anymore. It helps with the electric shocks. Good luck

Debbie

The full body symptoms likely aren't Shingles with this much history. Fibromyalgia might be a better fit for the symptoms, but it's not the only possibility. You should also be worked up for Lupus and auto-immune disorders, as well as neuro-muscular disorders. If the ANA blood work is negative, then I would wonder whether a pituitary and thyroid series has been done or needs to be.

Regards, Red



Richard A. "Red" Lawhern said:

The full body symptoms likely aren't Shingles with this much history. Fibromyalgia might be a better fit for the symptoms, but it's not the only possibility. You should also be worked up for Lupus and auto-immune disorders, as well as neuro-muscular disorders. If the ANA blood work is negative, then I would wonder whether a pituitary and thyroid series has been done or needs to be.

Regards, Red

Weebles, did you intend to add something to the reply?

Regards, Red

Are you on gabapentin? My sister who has Huntington's Disease was in a clinical trial and she had the same problems you're describing.

Talk to your doctor ASAP . It could be a reaction to the meds or like Fibromyalgia. I had the same thing happen to me . Fibromyalgia and other illnesses can cause sensitivity to hot and cold . Even weather changes . So call your prescribing doctors office today because if it a reaction to the meds they to switch . I hope this helps . I hate that you are feeling that away . I know how painful and alarming it is . my best wish .