Hi Friends,
I have just tried 10 k lazer treatments for my neuropathy in my feet and it made zero difference.
I cant stand up longer than 10 mins at a time and adjusting to walking with a cane now.
If anyone can share something that has helped please let me know thanks***
Many Blessings,
Cheryl
Have you tried the drug Lyrica yet?
@ poobie ,
I am afraid to as ive already gained 50 pounds and ive heard it makes you gain alot of weight.I will keep it in mind if things dont get better soon.Thank you for the responce.***
But you may have gained weight because it is too painful to walk- if you can ease the pain then maybe you could work towards losing weight
I’m at the neurologist now I’m on gabapentin it’s neurontin it’s helping me but I’m having problems with my back and pinched nerves I’m getting my results from MRI today good luck
just started Neurontin myself as insurance company automatically denied Lyrica...supposedly you have to fail on Neurontin first before they approve the lyrica.... bcbs=God
My neuropathy came on rather sudden last year. After many blood tests, a sural nerve biopsy and muscle biopsy I was given iv steroids and IVIG. Neither of these helped and my mobility was awful for awhile. I was put on Cellcept which I believe stopped the progression of the neuropathy. The road back has been slow but I am seeing positive results. I sit when I have to but when I get a little energy I am up. I think slowing the Lupus was essential. My neuropathy has affected both my nerves and muscles in my lower legs and right hand. PT helped a little but quitting my job as a night nurse in a busy Boston ER and moving up to the farm in Vermont was the best move for me. I now get my sleep at night and have just enough work to keep me moving and motivated. I am also on Neurontin and it has helped greatly with the pain. I try to keep the lowest dose possible for comfort. Hang in there. Try not to let discouragement overtake you.
@ lupie sister..Thank you for your post.I hope your MRI gives you some answers.HUgs xo
Lupie sister said:
I'm at the neurologist now I'm on gabapentin it's neurontin it's helping me but I'm having problems with my back and pinched nerves I'm getting my results from MRI today good luck
@Robc...Neurontin didnt help me,I understand the insurance co run around.Its sometimes more exhausting then the illness LOL. Peace & Blessings* to you**
robc said:
just started Neurontin myself as insurance company automatically denied Lyrica...supposedly you have to fail on Neurontin first before they approve the lyrica.... bcbs=God
@muckyduck,Thank you so much for your reply.Mine was very sudden as well and my body went into confusion and shock.I was care taking for my 82 year old mom when it hit me.I understand the lifestlye changes you have gone through very well.
Im going to ask about Cellcept.
Im very greatful to everyone here,i have to remember i am not alone..
Hugs xo
muckyduck said:
My neuropathy came on rather sudden last year. After many blood tests, a sural nerve biopsy and muscle biopsy I was given iv steroids and IVIG. Neither of these helped and my mobility was awful for awhile. I was put on Cellcept which I believe stopped the progression of the neuropathy. The road back has been slow but I am seeing positive results. I sit when I have to but when I get a little energy I am up. I think slowing the Lupus was essential. My neuropathy has affected both my nerves and muscles in my lower legs and right hand. PT helped a little but quitting my job as a night nurse in a busy Boston ER and moving up to the farm in Vermont was the best move for me. I now get my sleep at night and have just enough work to keep me moving and motivated. I am also on Neurontin and it has helped greatly with the pain. I try to keep the lowest dose possible for comfort. Hang in there. Try not to let discouragement overtake you.
@poobie..im going to try to get back to the pool soon,hopefully that will help..!
poobie said:
But you may have gained weight because it is too painful to walk- if you can ease the pain then maybe you could work towards losing weight
I have neuropathy very bad in one foot, neurotin didn’t help at all but Lyric does, I take 150mg twice a day, and I still get break thru pain like someone stabbing me with knives good luck
I have neuropathy in both feet and hands and severe weekends in legs and arms. I was on neurontin but was struggling with bad headaches so my neurologist switched me to amitriptyline. It has helped. Weight gain is a concern with it as well, but it is a lower dose than if used for depression, so it has not been bad. I also have IVIG treatments, they seem to work for me. I hope you find relief soon!
Have a friend that had the same and was always falling. Here psych gave her cymbalta(sp?) along with her antidepressant. Anyway it stopped the pain and the falls. Hope this helps.
@pipatty..Thank you for sharing.The hard thing is that what helps one person dosn't always help another.Happy to hear you are getting some relief ,,!
Pipatty said:
I have neuropathy very bad in one foot, neurotin didn't help at all but Lyric does, I take 150mg twice a day, and I still get break thru pain like someone stabbing me with knives good luck
@USAGURL...I have heard this from someone eles as well at the doctors office,thank you**
USAGURL said:
Have a friend that had the same and was always falling. Here psych gave her cymbalta(sp?) along with her antidepressant. Anyway it stopped the pain and the falls. Hope this helps.
@TG...Thanks for sharing..i was on amitriptyline and it didn't help.Im going to research IVIG ,you are the second person to mention this and i never heard of it.thank you.. hugs *Healing to you~~~
TJ said:
I have neuropathy in both feet and hands and severe weekends in legs and arms. I was on neurontin but was struggling with bad headaches so my neurologist switched me to amitriptyline. It has helped. Weight gain is a concern with it as well, but it is a lower dose than if used for depression, so it has not been bad. I also have IVIG treatments, they seem to work for me. I hope you find relief soon!
I actually was helped by neurontin. but we're all different. and it wasn't generic at the time. I imagine it is by now, as that was 2002 when I took it.
I wanted to be drug-free, even though the drugs were helping. So i kept looking for solutions, and i was helped a great deal by Chinese acupuncture.
Also by chelation therapy. I was doing several things at once so I can't say which helped most, but those were the 2 things (besides doctor appointments and trips to walgreens) that I did the most.
I am now on zero lupus drugs. and have zero neuropathy. and what a relief, because my feet used to burn and keep me up all night, every night. People who haven't been there can't quite grasp how torturous it can feel. Which is why I was so grateful that the neurontin worked- I could finally SLEEP!
But i read the warnings, and I knew it wasn't a long term solution.
So- whatever pops out to you amongst the responses here as feeling like a good thing to try, give it a far shot. and when so,ething works, keep doing it! you may want to keep track in a journal so you can measure your progress, so you can tell which things help and which don't, because it sometimes takes a while for things to make a difference. Like acupuncture- it can take a few visits before you notice a shift.
WIshing you the perfect solution!
@pipatty i hope you find some relief soon i know we all react differently to different meds!
@TJ...i hope its ok to pm you to ask about your IVIG Treatments?Im having a consult at end of march***
Dear all, need your kind advices. I'm on both Plaquenil for lupus and Lyrica, for my facial nerve pain. I'm 34 years old this year and planning to try for my first baby. I'm not getting confident answers from my doctors about Lyrica side effects, which I understand. Just wondering if there are others out there who have conceived and safely delivered while on Lyrica. Thank you for your time and advices. Take care!