Reply To: Pain and weakness together

An individual’s symptoms depend upon the affected nerves: autonomic, motor, or sensory, and where they are located within the body. Symptoms of peripheral neuropathy (PN) that involve the motor nerves might include muscle weakness, loss of coordination, or loss of balance. If an individual’s neuropathy involves sensory nerve damage (as in Myelin or Axon damage) he or she might experience symptoms such as numbness, tingling, burning, sensitivity to touch, or pain.

Diabetic neuropathy symptoms might include numbness and tingling of extremities, loss of sensation, muscle weakness, burning or electric pain sensations, and a variety of other symptoms that can affect nearly every body system.

Limitations caused by PN include a lessened ability to walk or stand and control muscle movements. In addition, many individuals who suffer from severe PN injure themselves without knowing it, and this can lead to worsening conditions. Chronic pain is also an issue for many people with PN, and this can have an effect on their ability to lead a normal life or work.

If insurance is an issue for getting proper treatment: for disability applicants whose PN has affected their balance, coordination, muscle strength, muscle control, ability to walk or ability to stand effectively, Social Security will likely find them very limited in their ability to work. Whether Social Security will expect them to adjust to less demanding work depends on the skill level of their prior jobs and their age and education. For more information on how Social Security decides whether someone can return to their past work or less demanding work, see their website on how Social Security decides if you can work.

If your autoimmune system is still producing antibodies that attack “self”, you may want to ask your doctor about trying Plasma Exchange (PE) treatments. This is the primary way of removing those antibodies from your system. IVIg, and often Prednisone, will stop your autoimmune system from producing more of those antibodies, but won’t remove what’s there, that’s the job of PE.

Have you had a recent nerve conduction velocity and EMG study? How about a spinal fluid study? More about these and other tests can be found here:
http://www.gbs-cidp.org/wp-content/uploads/2012/05/CIDP-Booklet.pdf

Have you tried Gabapentin (Neurontin) or Pregabalin (Lyrica) for your pain? Others on this forum have said Lyrica worked better than Neurontin for their GBS/CIDP. Some have reported relief using Amitriptyline (Elavil). Epidural injections or peripheral nerve blocks may be needed in some cases to help relieve sever pain. If you can, choose a pain center that has experience treating pain associated with peripheral neuropathy. See this link for some pain center ideas at a “GBS-CIDP center of excellence”: http://www.cedars-sinai.edu/Patients/Programs-and-Services/Pain-Center/index.aspx

I have had little pain with my case of CIDP/MFS (onset 2008). I’m one of the more fortunate ones in this regard. I hope your pain and weakness can be reduced soon.