Numbness and tingling in hands - Interstitial Cystitis Network Support Forum

Taramc · 06-05-2008, 12:37 PM

Hey out there,

My hands have been falling asleep regularly for about 6 months, especially at night. It's such an intense feeling it wakes me up, and I really have to smack them around to get the feeling back.

In doing some quick Google searches, I'm starting to believe weird nerve stuff and IC are really good friends with each other!

My diagnosis so far is Post-Viral Neuralgia and my most hated symptoms are burning nerve pains all over my body that are worse when I put a hot pad on my bladder, or eat something it doesn't like. I also get a LOT of twitches.

But this numbness...OMG it just keeps getting worse. I'm starting to lose the feeling in my hands/fingers. So I faxed the symptom over to my neurologist and he had his staff call to schedule an EMG test on my hands.

To those of you out there who are suffering this same thing, is that EMG really necessary? In the midst of my worst nerve pains I did an EMG in January and it showed nothing. Then my co-pay was over 200 bucks!

Also, is it normal for neurologists to not see a connection between IC and neuralgia? My neuro's kinda quiet, but his staff says they don't see many IC patients.

Thanks!!!!

***ICNDonna*** · 06-05-2008, 01:50 PM

I think it's good they are ordering some testing for you. It's easy to blame all of our problems on IC, but we can also develop unrelated problems --- so it's good to have doctors who are willing to do follow up.

Donna

Taramc · 06-06-2008, 02:42 AM

K I'm getting the test. But I just wanted to say this is NOT unrelated! Every single thing that has happened to me started right after I got a first-time UTI from a hot tub.

The hot tub had given me itchy round skin sores the one other time I was in it. It gave a friend of mine what looked like "eye herpes." It plugged my husband's right ear for weeks. Ok, I know, I've told this story a million times.

The bad nerve pains started after about a month of non stop urethral spasms that were making it impossible to sleep. Then came all the twitching muscles, then came the numbness/tingling fingers... then hands... amidst a diagnosis of IC! This is nuts!

I think those of you who also have neurological problems with your IC, were probably ALSO hit by a VIRAL infection and your IC was an auto-immune response, meanwhile the virus spread into the nervous system. When I was a newbie, nobody recognized the diffuse nerve pains symptom. But since then I've met other ICers who have bad neurological stuff going on too!

ngazerro · 06-06-2008, 03:45 AM

Taramc,

I am having the same problems with numbness and tingling in hands. I also hate it at night because they fall a sleep and it hurts and wakes me up. It is so hard to get comfortable. My rhuemy has not figured out way yet. I also have raynauds bad, so that might have something to do with it. Two weeks ago it was so bad that I didn't sleep well for a week. It seems to be getting a little better since then. Let me know if you find out anything. Hope it gets better!

Nina

SandyRN · 06-06-2008, 03:52 AM

Have yourself checked for fibro. Before I was dx'd I was having numbness and tingling in all extremities and I turned out to have fibro and myofascial pain syndrome. Both can cause crazy things to happen to your body, including twitching. I would have the EMG done to rule out major nerve damage, but I bet you'll find it is some sister illness of IC.

ps. I have Raynauds and that also causes some numbness and tingling in the extremities....do your hands have a color change with the symptoms?

ngazerro · 06-06-2008, 04:25 AM

My raynauds is bad. Yes I have color change, most of the time they are dark purple. I have to wear slippers in my office. My poor feet! Have been going to a rhuemy for it. He put me on procadia , and I tried it for 3 weeks. It made my hands hurt worst, so I stopped. Yesterday he gave me a script for plendil. He also wants me to go to an Scleroderma specialist. My blood work was all negative, but he thinks I might still have it. I really hope not. I have enough things as it is!! i am sure it will take months to get appointment with the Scleroderma specialist, so that just gives me something to worry about until then. Hopefully it is all just fibro related.

LeeAnn · 06-06-2008, 11:01 AM

Tara, what you are describing sounds like it could be carpal tunnel syndrome. Are all of your fingers tingling? I'm a hand therapist so if you tell me more info I could probably tell you if it sounds like CTS. I'm not a doctor but I'm familiar w/ this Dx as I treat patients with it on a regular basis.

snowgirl · 06-06-2008, 01:21 PM

Quote:

Originally Posted by Taramc

K I'm getting the test. But I just wanted to say this is NOT unrelated! Every single thing that has happened to me started right after I got a first-time UTI from a hot tub.

The hot tub had given me itchy round skin sores the one other time I was in it. It gave a friend of mine what looked like "eye herpes." It plugged my husband's right ear for weeks. Ok, I know, I've told this story a million times.

The bad nerve pains started after about a month of non stop urethral spasms that were making it impossible to sleep. Then came all the twitching muscles, then came the numbness/tingling fingers... then hands... amidst a diagnosis of IC! This is nuts!

I think those of you who also have neurological problems with your IC, were probably ALSO hit by a VIRAL infection and your IC was an auto-immune response, meanwhile the virus spread into the nervous system. When I was a newbie, nobody recognized the diffuse nerve pains symptom. But since then I've met other ICers who have bad neurological stuff going on too!

You are doing the right thing. Probably one of the most important things is you already have a neurologist on your case- that's what kind of md I went to when I had it in my legs. For me it was a side effect of norvasc bp med. I also had low vitmain b levels done which can also cause the numbness and tingling in hands and legs. Norvac boy I knew what it was like for diabetics that have peripheral neropathy. I could empathize with them. It is very painful and drives you crazy - anxiety. Vicky

elsie3205 · 06-06-2008, 04:36 PM

I've had IC and fibro for years and was diagnosed with peripheral neropathy last fall. It's so painful, especially in my feet. I had to quit my job as a preschool teacher. I had been working there for over 12 yrs.

snowgirl · 06-07-2008, 04:53 AM

If it is carpal tunnel your emg that is ordered will reflect that diagnosis. Vicky

Sally939 · 06-07-2008, 05:10 AM

Here is an idea. My hands do the same thing from time to time. Do you take elavil, nuerontin or anything like that? Do you smoke? I have found that those alone or incombination that happens to me. I would deffinatly follow through with the tests. As far as it being related to IC who know? IC and my bladder rule my life. I did try nueontin prior to ic for anxiety and my hands would fall asleep then. As soon as I quit the med they were fine. As for my elavil it is worth my hands falling to sleep. I wonder if I should not contact a doctor to be safe?

ngazerro · 06-09-2008, 03:59 AM

Quote:

Originally Posted by elsie3205

I've had IC and fibro for years and was diagnosed with peripheral neropathy last fall. It's so painful, especially in my feet. I had to quit my job as a preschool teacher. I had been working there for over 12 yrs.

Hi Elsie3205,

How were you dxed with peripheral neropathy and what are sym.? That is what I think I have. I have lots of problems with my feet, arms and hands.

Thanks

elsie3205 · 06-09-2008, 05:34 AM

I went to several neurologists. I had extensive blood work done, an MRI ,and a nerve conduction study. The MRI came back fine but the nerve study showed I have nerve damage in both of my feet. Nerve damage is not a disease in itself but a symptom of something else going wrong in the body. Since all my blood work came back normal, I am classified as having idiopathic neuropathy or neuropathy of no known cause. I have been offered neurontin, lyrica, and cymbalta to control the pain but none have helped. The neuropathy has spread up to my knees and into my fingers and arms. It's so disheartening. This time last year I was just starting to feel the strange tingling sensations in my feet and now my feet literally feel like they are on fire 24/7. If I walk for any period of time in enclosed shoes, they heat up to the point where I think it would be possible to fry a piece of bacon on the bottom of them!. They also just plain hurt, ache and throb. On most days the neuropathy causes me more pain and discomfort than my IC does. I never dreamed I would say that about anything. I am still trying to find some pain relief but the burning pain of neuropathy is very hard to treat. I am forced to wear flips but I also have Fibro in my feet and the pain of the fibro is better when I wear enclosed, comfortable shoes so I find myself switching back and forth between the two. If I am at home, I go barefoot.
I hope and pray you do not have PN. MY recommendation to you would be to seek out a neurologist in your area.

ngazerro · 06-09-2008, 06:49 AM

Thanks so much for your response. It really sounds like that is what I have. I have been wearing flip flops the last couple months. The problem I have is I also have raynauds and my feet get really purple and cold. When they are not cold, they are hot and burning. When I wear my tennis shoes for my exercise class, having the enclosed shoe on my feet go really numb. The are numb for the first 30min of class. I can't win. I keep slippers on at work, because of the air condition. My arms are what having been driving me crazy at night. They get so numb and hurt that I don't sleep well, which in turn my my fibro worse the next day. Last night they woke me up every hour and I am at work today so tired. I also get bluster that take forever to heal on my feet. I have been like this for years but it has gotten worse. I guess it is time to go see a neurologists. I have been seeing a rhuemy, but he is stumped and sending me to a specialist, which will take forever to get in and see.

I hope you find some relief for your pain..

Thanks again,

Nina

elsie3205 · 06-09-2008, 07:50 AM

Nina, It took me 3 months to see my first neurologist and then a couple more months for the tests to be conducted. I have read that Fibro can cause nerve pain but no actual nerve damage. I was hoping my symptoms would be a result of the Fibro but, unfortunately, it was more than that. Please let me know what you find out. I am so sorry you are having these problems.