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A MyLupusTeam Member asked a question 💭
Niagara Falls, ON

Hello warriors! Does anyone here have/had peripheral neuropathy? If so, what did you do to relieve the pain? Is it a complication of lupus or a side effect of our medications?

October 27, 2017
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A MyLupusTeam Member

I was diagnosed with peripheral neuropathy which is, in my case, a complication of the Systemic Lupus. My immediate concern was not pain but the numbness (loss of feeling) the Neurologist showed me I had through a neurological test in parts of my extremities. (I am not diabetic.) I was shocked and also thankful at the same time to know about the numbness (indicates some nerve damage has already occurred) so I can be more careful not to accidently injure or burn those areas, AS I WOULD NOT KNOW because I have loss tactile sensation in those areas. Secondary is any pain that I actually experience which in my case could be caused from any one or several of diagnosed multiple health issues.

October 28, 2017
A MyLupusTeam Member

I just found out that I have a rare form of lupus and the neuropathy as well but I am allergic to gabapentin/lyrica and all NSAIDs so I use Arnica Montana - it’s a natural anti-inflammatory. Unfortunately because I am allergic to so much I also have to rely on pain meds to control this (and other serious issues) but I strongly recommend joining any chronic pain management program you can find - only the ones that include ways and means to manage pain (before it manages you). It’s incredibly helpful. I’ve learned how to breath differently, exercise (according to my illness), yoga, meditation, massage, acupuncture, self-hypnosis, and basically re-learned how to do everything...Hardest part for me was admitting that I was not what society views as “Normal”...had a wonderful doctor help me to face that fact...the program I went to is in Canada at the university of Alberta hospital...multi-disciplinary pain clinic. I know the “breathing” may sound odd but honestly, I often(daily) use this to breath my way through some fairly serious and debilitating pain flares...I might not be running any marathons but at least I’m not screaming in a corner....a fact that I owe entirely to my wonderful doctors and also to this program. I get horrific pain flares that will “roll” in waves through my body....it’s beyind description...and 100% debilitating...the program I’m on Saved me. I hope this info is useful to you and that you find some relief...my heart goes out to you. Best of luck

October 28, 2017
A MyLupusTeam Member

Yes I am also on Gabapentin 2400 mg a day and it works great for me.

October 28, 2017
A MyLupusTeam Member

I take gabapentin (neurontin). been on it for years. have had to have my dosage adjusted over the years, but it has been a godsend.

October 27, 2017
A MyLupusTeam Member

I was given duloxetine - it is actually an antidepressent but is also used for nerve pain. It really works but it really messes up my stomach

October 27, 2017

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