Hi all! I have experienced numbness/tingling in my hands and feet for about a year (one of the first symptoms that lead me to rheumy). It is not constant but is there a lot of the time. I went to a neuro doc for an EMG test last week and he told me neuropathy is not showing yet but that it is not uncommon for it not to show early in the process and to come back in a year for another EMG. And that neuropathy is often seen in people with RA. Today and yesterday I noticed that upon soaking in a hot bath my feet and about halfway to my knees go tingly almost immediately. I went to bed directly after my bath last night so I don't know how long it lasts (still there right now as I had bath about an hour ago). Anybody else with neuropathy experience this? Any comments would be greatly appreciated.
Hi Cathy,
I have neuropathy, too. The front half of both my feet, including toes, are numb almost all the time. Sometimes completely, and sometimes pins & needles. Also, the weight of the sheet/blanket on the bed, at times, is very painful. I also have RA, OA and severe back problems. So that doesn't help matters.
There are times when it feels like I have socks on. In fact, I've even looked to see if I had socks on a few times! (My memory is not so good either
My husband got me a small sheepskin to put on the foot of the bed, to rest my feet on while I sleep. That helps the severe burning on my heels.
I also fall from time to time, for no apparent reason. I just lose my balance. Not dizzy or anything like that. My feet/legs just don't seem to keep up with my mind. My neurologist said that is most likely an effect of the neuropathy.
Another very bizzare effect of it for me is that, at times, it feels like I have cold water on my leg. Just a definite "wet" feeling. And there is nothing there. No water anywhere around. That one is quite strange.
Neuropathy can cause all kinds of strange feelings. My hands also are numb a lot of the time, but the pain from OA in my thumbs kind of overpowers the numbness.
Try not to worry. Just make sure you keep all you doc appts. There are meds they can give you if you experience nerve pain. Most of them don't really work well for me, but that's just me. But it is not unusual to get unusual feelings in hands and feet.
Try to keep a journal, if you can, describing what you are feeling on certain days, etc. What makes it worse or better. You can refer to it when you see the doc. It may help him/her treat you.
Good Luck
Hi Cathy...I've had numbness/tingly feelings in my hand for over two months non stop now... It won't go away no matter what I do. I go for an EMG on the 23rd of this month.
What I have found is when I wash dishes, or having a bath, the numbness and tingly feeling increases tremendously.
So how was the emg? I've heard it's not pleasant.
I have the neuropathy too. Evidently, I must have had it for some time but it has increased expotentially over the last few months. Your doctor's position of waiting for a year is really bad advice. If you read up on it, and this is the position of the about 5 different specialist that I'm seeing right now, that waiting is a bad idea because neuropathy typically starts with the numbness and tingling which although weird is not that uncomfortable. However, it starts turning into intractable pain quickly and if that's not brought under control early it can become nearly impossible to manage.
I would definitely seek out a second opinion from another neurologist. And get yourself to a good pain specialist. Be very careful in selecting your pain specialist though. You want to find someone that doesn't just want to dope you up on morphine and other opiates. They should be trying PT and other things.
Some of the things that my pain specialist is currently investigating or giving treatment for are:
MRIs of my spine and back
Nerve conduction tests
Diabetes screening
Having me go on a diabetic diet just to be careful. If diabetes plays into this or prediabetes, getting it under control can reduce your neuropathy. Also, we are anxious to get back with a new Rheumy because the same thing applies with RA contributing/causing neuropathy. Sjogren's and Vasculitis both cause it as well and I have all three. I am hoping that I don't have diabetes too but the stupid primary doesn't want to do the blood test for it.
She has tried Lyrica and the neurologist tried Neurontin. I'm allergic to both. We are currently trying Gabitril (sp?) which affects the GABA chemicals in your brain. My problems with these is that they increase the tremors that I have. She said it is typical for people to have entirely different reactions to the medications and it is just a matter of trying each one until you hit on one that helps. Since I get violent tremors from the first two, it makes this experimental stage very disconcerting.
They tried me on morphine but I can't tolerate it. In higher doses, it wipes me out. So now, they are trying Methadone which I tolerate much better and which gives me a more constant relief. But I'm still hurting badly about 80% of the day and night. There are several different meds that work so if something doesn't work initially keep trying.
The neurologist has me on Bacoflen to help with the tremors.
She added Licodaine creme (5%). I've gotten no relief from it. But my daughter tried it on her bulging disc and her endometriosis and the relief was so immediate that she got tears in her eyes.
I am regularly going to PT which helps better than anything.
She is possibly going to add Cymbalta but wants the results of the other tests first which my primary hasn't ordered YET!
Then, she is also talking about trigger point injections for the pain in my spine. But we again have to await test results and until I am completely done with my surgeries because of adding more cortisone into my body.
She also wants me on MetaNX, a prescription strength B12/B6 vitamin which helps heal the nerves. You have to get a prescription for that. I haven't been able to afford that yet. She also wants me to add Fish Oil and Gucomine-Chondriatin. Again, I need cash for those and so haven't got them yet.
Obviously there are a lot of options out there so do keep trying to find some relief. But the one thing you shouldn't do is wait a year and see how you are doing. In just the last 6 months, mine has gone to the affect of a small hum to uncontrollable pain.
Hope this helps.
Thanks for the advice ladies. I am starting PT with the Arthritis Society next week. She came to my house last week for our first visit and she did mention that a vitamin B12 deficiency can also cause the tingling in hands/feet. I'll be checking into that with my family doc next week. I will also be asking about the year wait recommended by the neuro doc.
Again, thank you.
Well, I had finally got my regular doc to approve me getting the nerve conduction tests and EMG done. They came back as no neuropathy whatsoever. I was estactic about this news but since I have all these doctors insisting that I have it, I am thus confused. Also, I still have the pain and tremors.
Hopefully, I do not neuropathy but I know that sometimes it does not show up in the early stages. If I don't have it, I'm working on going out dancing or bike riding or a hundred other things.
But something has to be causing this pain and the tremors which seem to be an entirely different issue than the neuropathy. My suspicion regarding the doctors is that the first neurologist just didn't want to deal with my problem for whatever reason. The second one seemed only trained for doing the tests. That seems strange but when I asked for more explanation it became more and more clear that the tests was all he was going to be able to talk about. It was weird.
Pincushion, from what I've read, you can eventually have that kind of feeling in your face as well but as a later development. FM can cause that kind of feeling as well as other autoimmune problems. I definitely would mention it is happening the next time you see the doctor. It would be interesting to see what your doctor think is going on.
Deanna, do you have diabetes? Diabetics can have neuropathy and tremors.Deanna- I have had pins and needles in my feet and legs for years especially down the righthand side of my body ( numbness too) i just put it down to the RA I have never told my doctor of this as i didnt think it was relevant
I hope you get that bike ride , you could even try skateboarding
Cathy, Please have your doctor check your vitamin b-12 levels. I stopped absorbing this vitamin, and my symptoms were exactly the same as yours. To the extent that I would awake with my hands to numb to turn off the alarm clock. This is something that is not usually checked for. It took me over a year to get diagnosed. Now I take b-12 shots. Please have this checked. If you go too long without this vitamin you can have permanent damage, as I do.
I advocate anyone having tingling, numbness or cognitive difficulties to have this simple blood test that many doctors often overlook.
ginni
Yes, my rheumy mentioned that being low on B and actually calcium can cause neoropathy like symptoms!!! Have you been checked Deanna?? My b is actually high because I was on mega doses when I was going through the fertility treatments but I did just start extra calcium and vit D a few weeks ago, can't say I have improved any but I think you should be checked if you haven't!! pin cushion, after all I've learned recently, I would say that it can be very relevant. There's a high percentage of people with RA that do develop neuropathy. So, please bring it up to your doctor.