widespread burning pain and skin changes

[mixedblessings]

I am a 51 year old femaleI"ve had widespread chronic burning pain (feels like burning acid through my veins). In the last year my skin has loosened - top layer can be pinched and stays - dry and wrinkled.,alot of muscle loss.Hhistory of balance issues muscle weakness and pain for 15 yrs. EVPs originally showed delays in legs and eyes but mri was clear.Demyllenating disorder was tentative diagnosis.In time infections became common with hypersensativity to antibiotics(serious reactions ie hepatatic,Pain in muscles became severe about 3 yrs ago. In early spring of last year I had two seperate "flares" of severe burning pain in my back from waist to neck and completely lost my voice.(not laryngitis whisper both times.) About May the pain was widepspread and unbareable..pain improved last summer with prednisone but drs stopped because it can cause other comps and i have no dx.I now take 150 mg fentanyl patch /2days, 8 mg dilaudid /4hrs. pain is worsening again - same time as last year. EVP last June showed increase delay in legs (rt one worse than ltt) but no delays in eyes. MRI again normal. My skin is variable temp top of arm is cold and bottom is hot= physical touch. These skin temp changes also happen on my face and other parts of my body. Profuse sweating even when cold.( last 5 yrs).
Tops of my arms appear "bloated".
Last year at worst blood pressure was unattainable in arms and legs - severe pain and when cuff removed arm was mottled red and white.same would happen with drawing blood.
End of september 2010 pulmonary embolism
Pain in legs sometimes improves when laying out flat for an hour.
I have seen Vasculitis specialist - paternal grandmother had PAN dx in 1950. symptoms seemed like bloodvessels were inflamed.
Can compromised nerves change skin to loosen? become dry and wrinkled. especially inside of arms.
Is there any test or specialist you would recomend I see? ANY ideas or suggestions would be appreciated!!

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

There are conditions that affect nerves which may also affect the ability to control sweating. These conditions are grouped into small fiber neuropathy. Causes of small fiber neuropathy include diabetes, vitamin deficiencies, autoimmune problems. Typically with small fiber neuropathies, symptoms include burning or buzzing or other vague symptoms starting in the feet and hands then in some cases spreading to other parts of the body. The EMG/nerve conduction studies (NCS) (tests done to check for neuropathy) will not show an abnormality, and a definitive diagnosis can only be made with a skin biopsy so that the number of nerve endings can literally be counted. There are other tests of the function of small nerves that can be ordered, such as QSART testing which looks at how much sweat the skin makes, since sweating is in a sense of function of these small nerves.

Given your history (personal and family), it may be worthwhile seeing a rheumatologist and/or dermatologist. If these specialists believe you have a neurological disorder, a neuromuscular neurologist would be recommended.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[mixedblessings]

Thank you so much for your reply. I will ask about having someone request this After researching Small Fiber Neuropathy the symptoms I have definitely fit. In your reply you make mention of family history. My brother has Occipital Neuralgia and Fibromyalgia, my sister has restless leg syndrome.
Another question though. Can SFN cause decreased blood circulation that may cause blood clots? Aside from the small clot in my lung in Sept 2010, I had DVTs followed by a PE six months later about 20 years ago. Lately when I raise my right arm it actually feels like blood is pooling at my shoulder.
As well in the past few months my urination has slowed to sometimes only 2 time a day. First one being at 3:00 pm. I am up at 6l00 am. I have been previously dxd with irritable bowel syndrome and now wonder if that too could be caused by sfn.
Also can small fiber neuropathy cause evoked  potentials in legs?
As it could take a year for me to see a specialist here in Canada does Cleveland Clinic accept out of country patients for this type of testing and if yes how long would it take? I have gotten so much worse this last year I do not want to waster another year.
Your reply is very much appreciated!!
Thank you!!