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Neuropathy seems to be getting a lot worse..

Jan 13, 2016 1:01 AM

Hello how is everyone? I am very new to this but I really could use some help and support. I have been diagnosed with SLE (lupus), neuropathy, seizures and chronic pain. Over the last four to six months I have noticed my neuropathy has gotten a lot worse. Before it didn't happen everyday except at bad time. But I have noticed lately it's happens all the time. Whether I am laying down or walking. I am really worried but everytime I bring it up to pain management they say it's just my lupus getting worse and vice versa with my rheumatologist. I have a big problem explaining myself to my Dr's I have noticed, I don't want to seem to pushy. But I am to the point now that I feel like I'm going to lose it. It really scares because I know somethings going on... Does anyone else have this problem with neuropathy? And how can I talk to the Dr and open up without anyone getting upset? Thank you for taking the time to read this..

Jan 13, 2016 5:48 AM

Welcome to our community Bshuler76! You'll find lots of support here. We are a close group who helps any way we can; prayers, advice, suggestions, just listening, virtual hugs, etc. We don't judge because we know what that feels like from others who don't have chronic pain issues.

I'm sorry about your lupus dx. I don't have it but I do have fibromyalgia, sjogrens, & hypothyroidism, all autoimmune (AI) diseases, which share so many common symptoms. I was dx with fibro in 2012 & the other 2 last year. And I have a huge list of other chronic pain issues, for over 25 years. I started having daily neuropathies about 2-3 years ago and was put on Cymbalta, which helped at first, but then I had a bad reaction and came off. With so much going on last year that needed investigating, my doctors wouldn't let me have any meds for the neuropathies until all the tests were over. They tested me for MS and Parkinson's, which the doc said was negative but because it sometimes takes years for the tests to be positive he wouldn't completely rule them out. Anyway I was dx with tremors, movement disorder, and they had me on tizanidine. It wasn't helping the tremors or neuropathies, so my pcp doc finally put me on gabapentin. I have noticed a big difference in the intensity of the tingling, burning, and stinging sensations. Has your doc suggested it or lyrica, or anything like this? Maybe you could write down a list of concerns & symptoms, with any questions, and then go down the list at the next visit. I do this myself, because with the fibro fog and dx memory loss I'm afraid I'll forget something important. I've also started taking my hubby with me because the doctors see me struggle and he can fill in the blanks for me and then. I hope this helps. Hugs & prayers, with love! πŸ˜·πŸ™πŸŒΌπŸ’•

Jan 13, 2016 7:29 AM

Thanks so much actually lyrics helped quite a bit but once my husband retired from the military Tricare doesn't want to cover it without going through other meds first. Which makes no sense as I was on it three years lol. But I take the gabapentin now. It helps during the day time But nothing seems to help night or when I'm laying down or sitting.... But I have tried taking my hubby but he doesn't speak up much or he's working.... But that is part of the reason I started looking at the app was so I could record qhats going on and share it.... I can't write much with my lupus do to my hands and severe joint pain. It takes a lot to type but I am hoping I am able to keep it up... Thank you for you advice and I will def try it.... Have a great day and thanks for the support.

Jan 13, 2016 8:56 AM

I have problems writing too, since my tremors started a year ago. Every time I hold anything my hands shake badly. I've had to limit my driving to 30 minutes max one way, so I'm not able to drive to my dad's nearly 2 hours away anymore. Someone else mentioned the "talk to text" on tablets & phones, but I'm doing good just knowing the basics. Lol πŸ˜·πŸ™πŸŒΌπŸ’•

Jan 15, 2016 2:19 PM

B, I have neuropathies, and they are extremely painful. Do you see a neurologist?

Jan 15, 2016 3:17 PM

I too have neuropathy, but have never been able to get it diagnosed so that it is in my records. Burning and stinging in my hands, feet, and legs, mostly. Feels like someone just stuck a hot coal on me. The area almost always turns bright red like a bee sting, but without the swelling.

Jan 15, 2016 3:34 PM

Well, neuropathy is hard to deal with and to treat. Dr.s don't like that! There aren't many conventional treatment options. With all nerve issues one can try omega-3 fatty acid (2g daily for 2 months) supplementation because they are necessary for nerve functioning and the immune system. Moste people lack them in their nutrition.
Another new treatment option is melatonin because it works on pain processing in the brain as well as its anti-inflammatory. The research isn't all done yet but its not harmful at 3mg daily.
As for your Dr: he has limited time, so ask how much he has in the beginning. Pushing leads to resistance. Better say things like 'I've heard other doctors do... in this situation', this will get his attention

Jan 15, 2016 9:32 PM

Saphire380, My PCP thinks my neuropathies are just symptoms from the sjogrens & fibromyalgia. I had an EMG recently so we know it's not from my spine. Do you have fibro or some other AI disease, or spine issues? Has your doc done an EMG? Maybe it's the symptoms from. πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 15, 2016 10:34 PM

I have fibro and two herniated disks that I know of. I have had 4 emgs two on arms and two on legs and neither has shown anything. I have been trying to get mris of my cervical and lumbar spine since this past March and my insurance keeps denying one or the other. I need both approved at the same time so I can get it done with one copay because I cannot afford both. My last MRI was in 2010 and was lumbar spine. Last cervical done was I think 06. I am chemically sensitive and have been unable to take Lyrica, cymbalta, savella, and neurontin. I am stuck with only being able to take something for the pain. Currently fentanyl patch and oxycodone for breakthrough pain which is always. My pain is not under control.

Jan 16, 2016 9:30 PM

I understand the meds sensitivities. I can't take most pain or psych meds they've tried me on. So far I'm able to use the gabapentin, but at only 200 mg/day. That wouldn't put a dent in most people's symptoms, but it's just right for me without the side effects. Lol

I'm so sorry you haven't been able to find a method to control your pain. I'll keep you in my prayers. Hopefully something will change for the better for you, and soon! HugsπŸ™‚πŸ™πŸŒΌπŸ’•

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