Peripheral Neuropathy

[hedvik]

I have severe peripheral neuropathy (PN) in both feet as a result of cancer (Waldenstrom). The cancer has been successfully treated but the PN is steadily getting worse. I tested negative on NCV and EMG. I take Lyrica and Amitriptyline. I'm on my feet for an hour a day wearing Crocs and can't wear shoes. It helps to sit with my feet up (level with my bottom) otherwise they get more painful, swollen and purple.

Q: My PN seem different from how most descibe it. The pain in my feet never comes immediately or as I walk. Instead the onset of pain comes a day or so after I've walked. Then the intensity of pain increases for quite a few days (while I avoid walking and sit with my feet level with my bottom) before they get less painful again. Is this normal? Is this "delayed" onset of pain normal?

Q: I'm never in pain during the night. When I wake up in the morning my feet look "normal", they are a normal colour and the veins are almost invisible. However, after a little walk, or by the end of the day, the veins around my ankles/feet get more pronounced and bothered. My feet take on a red/purple colour (mostly the soles of my feet) almost as if the circulation is bad. Does this sound normal? Is it normal to have severe PN (I can't really walk and can't wear shoes) and not be in pain overnight?

Thank you all,
Grete

[hedvik]

I have worked closely with a hemathologist and a neurologist for one year  now after I got dx with Waldenstrom (WM). I believe I made it clear in my posting that the WM caused the PN (the high protein, IgM of 7,500mg/dl, in the blood destroyed the myelin). The "underlying cause" of the neuropathy (i.e. high IgM in the blood) has now been treated successfully with chemo. The neuropathy should, in theory at least, get better. It doesn't.

I understand that your reply is for educational purposes only and should not substitute a visit to a doctor. However, I can not see that you have adressed my two questions. I would appreciate a clarification.

Regards,
Grete

[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 two types of sensory neuropathies in the body – large and small fibers. 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 effected areas can change color and you may notice changes in sweating and/or loss of hair. 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. There are several causes of small fiber neuropathy, including diabetes, vitamin deficiencies, and autoimmune problems. It sounds like you have a small fiber neuropathy secondary to perhaps the Waldenstrom’s. Pain may come and go particularly if a vasculitic process is occurring.

Treatment for neuropathic pain (pain coming from nerves) includes neurontin and lyrica, and medications such as elavil (which is an antidepressant but has actually been found to be helpful with neuropathic pain as well). You should discuss with your physician if your doses are optimal.

You need to continue working with your physician. Ultimately treatment is to treat the underlying disorder.

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