sle lupus w/severe small fiber polyneuropathy

[tinkerbell236]

Dear Dr.

I live in tremendous, constant pain living with SLE Lupus, interstitial cystitis of the bladder, pain predominate IBS syndrome, SLE lupus arthritis (non-destructive), herniated, bulging,torn disc in the L4,L5 region, daily pain in all joints of my ankles, toes,  knees, fingers, wrists, and now the elbows, and last but not least... I have a dx of small fiber polyneuropathy (dx- by skin biopsy johns hopkins.)
Two very great, world renowned rheumatologists feel that my neuropathy is form the lupus. All other causes were ruled out, other than possibly being on the antihistamine atarax, and pain medicine ultram for my interstitial cystitis for several years now could have been the root cause.??? I wonder what you think of this?
MY pain Dr. doesn't think my neuropathy is from the lupus, he said it wouldn't be so severe, but I know my body, and I feel that it is either that, or the medicines aforementioned that I no longer take.
Some docs argue that it doesn't matter what type of neuropathy I have- I beg to differ- if it is due to lupus-then maybe there is a specific lupus treatment that could help it go away. ???
I have a great life, with a great support system of family, spouse, two lovely daughters. I'm 32, we are a military family.
The last five years of my life have been so good in all ways but one- The pain I live in is unbelievable- I literally live a living hell every day.My nerve pian is like pure-bare wires touching each other, like being hooked up to hundreds of tiny wires that run currents of lightening in my hands, forearms,feet, calves, bladder,back, my kidney area.  NOTHING has worked!!! we have tried steroids, IVIG, high-dose, long-term neurontin, lyrica, cymbalta, amitript & nortrip. Pain medications barely even take the edge off most of the time, it's so awful to live in so much constant pain. Celexa (now trying) and will start Tegretol in two days. We just moved- so my pain dr is trying this, I've yet to see a new neuro and new rheum.  I do know that my ana titer is 1:1280 right now, and my lipids  have just turned to borderline (from low activity- due to pain). My BIGGEST questions for you are - are there other people out there like me with nerve pain so severe with lupus??Why is my nerve pain so resistant to everything?? Do you know of anything else I could try?    Thank you so much for your help, May God Bless You, and your caring heart!   Roberta

[ajeanne13]

I don't know if it is legal in the state in which you live, but neuropathy is a qualifying condition for the use of medical marijuana in my state. I was very skeptical when my husband suggested it to me, as I have never used any illegal substances, cigarettes, etc. But I have always had a very high tolerance to medications.  I do not smoke it. I make baked goods (edibles), which is supposed to be a more effective way to use it. I have had neuropathic pain for years and this is the only thing that seems to help. The great thing is that you can determine the potency you need and baking with bud butter is much more cost effective than smoking it. Marijuana is also supposed to REPAIR the nerve damage. I understand if you or any other readers are skeptical, as I was extremely skeptical, until I did alot of research and realized all of the benefits and various means to use it (smoke, edibles, capsules, creams, oils).  I also liked the idea of using something that is natural, not created in a lab with possible side effects which manifest years later. The FDA and it's seemingly constant recalls have made me wary of taking any medications that I don't absolutely have to. I can't be sure that medical marijuana is right for you, but it's something you may want to explore. Do your  own research decide for yourself. Good luck, I hope that this was helpful.

[Abhijeet Deshmukh, MD]

Hi.

This is a difficult situation. The pain is mostly due to the small fibre poluneuropathy, which is resistant to common treatments. And SSRI groupf of drugs are now-a-days indicated for the pain symptoms.

You may continue celexa and see any improvement.

Regards

DrAbhijeetMD

[Daveo08]

Hi

I have this small fibre neuropathy all over from the neck down with feet being the worst. The symptoms are worse at night. I developed it over 6 minths from a failed neck operation. I agree it is the worst thing ever. For the last few years I had a painful fat layer that is all lumpy and sore when squeezed. They checked me for lupus but nothing showed. I have been on lyrica and amitrypline and cbd oil with no relief.