Chronic Pain

[Trinlay]

I was diagnosed with sarcoidosis about 5 years ago, after experiencing shortness of breath, fatigue & weight loss.  I've got "nodes" on the lungs and lymph nodes; the WBCs are moderately low; and I'm always tired.  My other symptoms are chronic burning pain and redness, esp. in my feet, but also milder in my hands, which gets worse in the hot weather, and for which I take a low dose of nifedical each night with some relief of the redness, as well as 200 mg of lyrica per day which relieves a little of the burning pain; and pain (sharp, throbbing, aching, soreness) experienced for many years in my joints (knees, elbows, wrists, ribs shoulder, neck), exacerbated in my arm by use of the computer mouse, that isn't relieved by anti-inflammatories such as diclofenac.  Could the feet and joint pain be related to the sarcoidosis?  Any suggestions for treatment? I apologize for this long explanation.  Thanks so much for any insights!
*-) Trinlay

[Lama Chahine, MD]

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 your doctor.

Without being able to examine you or obtain a history, I can not definitively answer your question, but I can tell you that in general, sarcoidosis can affect the nervous system, in around 5-10% of patients. Sarcoidosis can affect the central nervous system (brain and spinal cord) in addition to the peripheral nervous system (the system that supplies nerves to the rest muscles, skin, etc).

Given the symptoms you have described, of burning in your hands and feet, one diagnosis that comes to mind is what is called "small fiber neuropathy", or involvement of the very small nerves that supply your skin, sweat glands, and other areas with nerve endings. Damage to these nerves leads to burning, pins and needles, numbness, a sensation of cold or heat, and other symptoms. These symptoms sometimes improve with such medications as lyrica.

It may benefit you to be evaluated by a neurologist; several tests can be done to assess the small nerves involved in small fiber neuropathy.

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

[csew]

I have the same exact symptoms as Trinlay including burning all over the body. Hands, feet, head the worst. Neuro calls it Paresthesia(?). Had EMG but no testing for small fiber neuropathy. He says he really doesn't know. Do you think it could be the same thing Trinlay has. All blood tests and MRI of brain normal.