Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
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,
Mary
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,
Mary
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.
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 :)
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.
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!
Just good to know someone out there knows how I feel on daily basis.
Thank you!