DailyStrength is undergoing a scheduled site upgrade, we will be launching the morning of Wednesday June 29. During this time, you will not be able to register as a new member or make any new posts.

More DailyStrength
Health Event Calendar
See what's new on the site
Step-by-step Tutorials
How to use DailyStrength
We're on Facebook
Check out our page
Follow us on Twitter
Read our tweets
Get Cool DS Stuff!!!!!
Shirts, Hats, Baby Wear
neuropathy in hands and feet
Watch this 
View More Posts Ignore
Hi there,
I am really suffering with neuropathic pain in my hands and feet. It runs from the palms of my hands will turn bright red, itch and then burn, it really hurts, and the only think that helps it is holding something cold. These flares can last up to an hour and they happen multiple times a day. I also have alot of pins and needles coming and going in my hands. Now, my feet hurts so awful I have a very hard time walking. It feels like every single little bone in both of my feet has been smashed, and crushed, and all the little tendons and stuff have also been crushed, and then I am trying to walk on them. This pain never goes away, but I also get 2 other things, 1 is my toes get so ice cold so often, and nothing can warm them up, even socks over socks and rubbing them. It can actually really hurt at times they are so cold. Then the 2nd is the burning, it feels like my feet, over my ankles too are literally burning. It comes and goes, but I have it every day. Nothing really helps, I just have to elevate my feet on a soft pile of pillows and try to relax my mind and just wait until they calm down, at times at night after a busy day they don't.
I believe this is all small nerve fiber neuropathy, which can definately be caused by Sjogrens. My doctor is insisting that because the treatments I am on have controlled my ANA, autoantibodies, and the only thing we cant seem to control is my CRP which is 68 and my sed rate which just under 100.
He is doing a skin biopsy, taking 3 small pieces from my ankle, calf and thigh. He is looking for the number of small nerve fibers, and for damage that is visible or inflammation.
My real question is, does anyone else have symptoms like mine?
Has anyone else had the same biopsy and did it reveal anything?
Do you think my Sjogrens is causing the neuropathy in my hands and feet based on the symptoms I talked about above?

I know I wrote alot, and asked alot of questions, but any input is much appreciated. Especially the feet are severely affecting my quality of life. I have active boys, 10, and 12 now and some days I can barely walk just around the house the pain is so intense. I am desperate for answers or help dealing.
thank you so much
thank god for this site!!!!!!
Many hugs,
Posted on 03/24/11, 12:15 am
10 Replies Add Your Reply
Reminder: This is a support group for Sjogren's Syndrome. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

You may also create your own Member Groups where you can moderate the discussion.
Email me when others reply to this topic help
View More Posts Ignore
Reply #1 - 03/24/11  12:51pm
" My rheumatologist gave me a prescription to treat peripheral neuropathy based on symptoms, much like other Sjogren's-related symptom management. At first it was Neurontin, then Triliptal and finally Gabitril which gave me the most relief. Now I'm allergic to all the PN and Fibro drugs, so soon will start an off-label treatment that doesn't have allergens in it.

Sometimes I wonder how important it is to have an exact name when the treatment is often the same medications.

Yes, Sjogren's can trigger neuropathy. Inflamed nerves and not happy nerves. I had the worst episode when I was taking Macrobid which can trigger hand and feet PN as a toxic side-effect. The urologist was giving it to me to prevent frequent UTI's until my interstitial cystitis was under control. Plaquenil can also cause PN, although it is much rarer. I didn't know I had that as a side-effect until I had been off Plaquenil for 5 years and then had to stop taking the Gabitril because of my severe allergy. My symptoms are only 10% as bad as they were when I first began treatment.

I call my feet cadaver feet when they get so cold. The temperature regulators are broken so some times my feet burn and other times they are so cold that it makes the rest of me feel like I got dropped off in Alaska without a jacket or boots. These symptoms were much less annoying on the PN drugs.

Another issue with foot pain can be plantar faciitis. Inadequate arch support causes stress and strain, and can make your feet like someone dropped a brick on the top of your foot, trigger horrible pain to standing or walking, incredible foot cramps, or even swelling in your ankles. Adding a better arch support orthopedic insert really helped reduce my symptoms the most. "
View More Posts Ignore
Reply #2 - 03/24/11  1:17pm
" If you don't get enough relief from your Rheum's efforts, I would go to a hand specialist, and a podiatrist. As DryRDH said a good pair of supports would help your feet. But there are other things that might help, too.I believe in specialists. They really know their areas, and that saves you time and pain. Good luck! "
View More Posts Ignore
Reply #3 - 03/24/11  2:03pm
" Yes, I have this very bad which is what caused my Rheumy appt. to be finally diagnosed with sjogrens. My entire body gets pins and needles including my face/head/thighs ugh it's so annoying and yes the hand pain can be terrible. I had been diagnosed years ago with Tarsal Tunnel syndrome in both ankles so my poor feet have always been a mess (although my rheumy don't think that's what it is after all these years). I have been taking Neurontin for almost 2yrs and it's not working at all. So, he's trying Lyrica, see if it helps at all.

And yep, my feet and hands can't make up their mind if their cold or hot. It's very annoying. I know some times my poor hands would get sooo hot my son who is almost 20 (lol) would sit and hold them cause his were cold. It would feel soooo good!!!! Not like I can stick myself in the freezer :) I actually had to stop wearing my engagement ring due to this, when they flair up my fingers start to swell.

As of right now I haven't gotten any farther with this, I just had my first rheumy appt. 2 days ago. But, it's one of my major complaints so it's not something I'll let them ignore either :) "
View More Posts Ignore
Reply #4 - 03/27/11  6:59pm
" I have found that yoga really helps with the joint and nerve pain in my feet and knees. I also noticed that wearing my Avia rocker sole shoes while I'm teaching really cut down on the pain of being on my feet all day. Staying away from shoes with no cushion like sandals or flip flops is a must. And going barefoot on hard surfaces is OUT. one thing that is out for me is running. But walking on surfaces like sand or dirt on a regular basis in good shoes with lots of support is very helpful. "
View More Posts Ignore
Reply #5 - 03/28/11  10:29am
" I am having trouble sleeping & even when I am awake my hands & legs feel cold and hurt so bad that I can't even sleep. Then other times my feet feel like they are on fire and they will be red. I don't have insurance at this time so I go to the clinic; they don't know anymore than I do about sjogren's. I take Lyrica 75 mgs & Savella 50mgs twice a day. They don't seem to help. My whole right side is really a problem for me. I have been told that I have right sided weakness, but I don't know why. Hope you find they answers your looking for. I also agree this site is the best. "
View More Posts Ignore
Reply #6 - 03/28/11  10:51am
" Hi Mary. I understand what you are saying completely. I had the pain and numbness in my feet and hands and it also went up my legs and arms. I got so scared 2 times, that I went to the hospital. That is when My DX first began, a year and a half ago. My problems have continued all this time until up until a few months ago. I think I may have found a right combination of treatments for me. I have taken Lyrica since the DX and it took a long, long time before I could actually say it was working. I was even able to cut down some on it. I would still have some problems with pain and depression, so my rheumy added Cymbalta. I still have some depression and pain, but it seems like my nerve pain is gone (crossing fingers). And that is the worst stuff, so I can deal with everything else with the nerve pain doing better.

If you are just starting Lyrica or the other medications, don't give up to soon because it really does take awhile to feel the affects.

Good luck and feel better soon. "
View More Posts Ignore
Reply #7 - 03/29/11  11:21am
" I also see a neurologist. My neuropathy pain got so bad all over he started doing EMGs and nerve test and determinded that the covering of my nerves were pealing back. He said at that time he wasn't sure if it was from the SS or not because he had never seen a cause that bad. He started me on IVIG treatments ASAP which I've been taking for about 6 months. I was falling all the time and the weakness and pain was terrible. I'm not falling as much and the pain is not nearly was bad. I started having some more pain at my last treatment and they said the nerves where starting to heal back. If it turns out you do have nerve damage ask out IVIG it has helped me. IVIGliving.com On my bad days If i push my self too hard and it's getting close to a treatment time 3days every 4 weeks, I may have to use a cane. (i'm only 27) I hope I've been of some help. "
View More Posts Ignore
Reply #8 - 03/29/11  5:44pm
" Hi Mary,
I don't know about the meds but you are hearing lots about how we all seem to have it to some degree and what treatments are/aren't working. Just want to add that since it is likely neuropathy, do watch your circulation as well. My feet are numb so I often cant feel pressure, and it sounds like you aren't feeling it normally as well. So if you are loading on socks to stay warm you may be adding to your troubles by reducing blood flow. I got a foot warmer for the floor when they are so cold I can't stand it, and I tried socks in bed but find a small lap blanket wrapped around my feet works better--I also warm up the bed ahead of time with an electric blanket. I do hope you find some relief, this sounds awful! "
View More Posts Ignore
Reply #9 - 04/01/11  12:44pm
View More Posts Ignore
Reply #10 - 04/12/12  1:06pm
" I'm so glad to have read your post, I describe my feet pain as you do!!! I have neuropathy of hands and feet, arthritis through out body and Fibromyalgia, mild scoliosis, etc.

Just good to know someone out there knows how I feel on daily basis.

Thank you! "

Add Your Reply

More From Around the Web