I have a question for all of you who have neuropathy that is caused by your AI/RA and not by spine issues. Can you "bring it on" by doing something strenuous, like heavy lifting, pushing, pulling? I ask because when I was giving the RD all of my symptoms, the most troubling of which is the increasing weakness/numbness on my left side, and told him it gets worse if I do any heavy lifting, etc., he said that doesn't make any sense. I was told by doctors and therapists not to do heavy lifting because of my cervical spine problems. They said it would cause problems with my arm and neck, which it sometimes does, although it doesn't happen as much since the RA drugs. But I still have problems sometimes, along with my left leg and left side of my face. I agree with the RD it doesn't sound right, but that's what happens. So, I'm thinking it has something to do with pressure on the blood vessels or nerves or something that causes the increase of symptoms. Apparently the left sided issues are vasculitis related more than cervical spine related, so that's the only explanation I can come up with. I'd really like to know what's going on and if anyone else has this same type of thing happen from AI type issues rather than spine, I'd really like to hear your history and what your doctor has told you. Thanks everybody.
Hi, Jess! I hope you're having a superfantastic day!
I don't have neuropathy, but I do have some problems that have recently started with my back. It's towards the bottom on my right side though. Earlier today something "popped" and now it hurts worse. I took a vicodin which seems to be helping some.
I hope whatever you have going on is not serious and you're able to find some relief soon. I bet someone here has had some experience with the same issues and will be able to provide some insight.
Have a great and comfortable evening!
I have to go wed for a NCV which I am not looking forward too. I had one a few years ago along with a EMG and let me tell you I NEVER want another EMG again.
Good luck to you.
I had neuropathy in the beginning - it was mostly on my right side. The neuro I saw to rule out MS said one part of these diseases are squished nerves that still take a lot of time to heal. Oddly, my right foot never joined the party.
When I was in a car accident this summer I developed some problems that were mostly on my right side - kind of running down my leg. I couldn't sleep on that side or I'd go numb. As my back healed it mostly went away but I should have continued with the PT to fix it forever.
So...I'm agreeing with your assessment. :-) I think the neuro I saw would too.
Hey - were you the person asking about reversing neuropathy a few weeks back? I thought of something and keep meaning to go find that post.
Hugs,
Pip
Hi Jesse,
I have vasculitic neruopathy on my left side and now starting on my right. I find that certain activities seem to make it worse. I wonder if the stress of the activity is causing inflammation or pressure to the nerves? I also notice I have compression neuropathy so that if I sit or lay wrong the limb quickly goes numb. I have gotten pretty good pain relief from nortriptyline and have just adapted to avoid the activities that cause the problems.
A question for you: have you had steroids to try to control the neuropathy? I was somewhat stable on imuran, but lately had to go to 10 mg of prednisone to control the neuropathy and much as I hate it, the pred does work when nothing else will. Not that I would want you to have to go that route, just curious as to if it helped you as it has me. I have no firm dx but seem to have a mix of problems.
Laker
Thanks, Blessed, I welcome your prayers, although in all honesty I have to admit there are others here who suffer more pain than I do.
Robin, is the NCV the same thing as a nerve conduction study? I had that and it hurt, so I know why you're not looking forward to it. I hope it gives you the answers you need. Then it will be worth it. And, as I remember it, the pain, though unpleasant, was very fleeting.
Pip, I may have written the post you're referring to. When my left side started to feel a bit better I was wondering how long it would take for the numbness/weakness to go away. The RD said it could take a long time and I was wondering what others' experience was. At that time the whole business of what caused it seemed moot because I was feeling better. Unfortunately, it has come back on occasion, so it's not over and now I'm thinking back to previous convesations with the RD and trying to figure out what's going on and if I'm right to ask for a try at Lyrica. So, these diseases can cause squished nerves? Very interesting. I wish the neuro who ruled out my MS told me that. But it seems maybe I am on the right track, especially when I read Laker's post.
[QUOTE=Laker]Hi Jesse,
I have vasculitic neruopathy on my left side and now starting on my right. I find that certain activities seem to make it worse. I wonder if the stress of the activity is causing inflammation or pressure to the nerves? I also notice I have compression neuropathy so that if I sit or lay wrong the limb quickly goes numb. [/QUOTE]
Oh my gosh, Laker that is exactly what I have. I was getting increasingly worried because it was starting to move to my right as well, but I think that's been stopped. (fingers crossed) If what Pip's neuro said is true, then it's the disease causing this and I'm not crazy, the RD is.
Like you, I also don't have a firm diagnosis and that adds to the frustration of all this. Does it bug you too that there are no firm answers? Makes me crazy.
I haven't been on prednisone since a very bad arm episode a few years ago and was on it once before about eight years ago when I lost the hearing in my left ear. I was going to ask for Lyrica in place of one of the other meds to see if that would help. The pain isn't awful, it's under control, but I worry about continuing or progressing weakness. I didn't know pred. could help with that but if inflammation is the problem, I guess that makes sense.
Thank you for your post Laker. I feel like we're nearly two of a kind.
I have Vasculitis/Neuropathy. I have Nerve damage, which goes along with it. Have for the last 25 years, I have my ups and down with it but its always there. weakness, numbness, tingleing and sometimes burning pain. Hard to hold on to anything. They told me when it first started that the Blood vessels swell agaist the nerves causeing the damage. It's in my face, legs, feet, arms and hands. They treated mind after the feet droped with Predisone thru vains while in the hospital, went home on 95 every other day, they lowered it in a hurry, went down 10 at a time till got to 35. But it and a lot of hard work, got me the use of my hands and feet back to the point where I could care for myself. That was in 82. I have taken Cytoxin for it. (A drug you don't want unless you half to) have been on imuran and it seem to be working. I was a rare case, very few get it as bad as I did.
Boy I can't think tonight...I didn't answer your question.....yes anything I do strennous will bring the burning pain, when I get upset or try to do too much I get it. They told me not to sweep, vacumm or mop because of the pushing and pulling would set it off. But they also told me to do everything I could, that the more I was able to do the better.
Wow, Rusty, you've answered a question I've always had in my head and worried about, that is, will it stop at some point or will it continue to get worse? Just before I stopped the meds I was starting to have trouble holding my left foot level with the floor. I guess that's foot drop when it happens all the time. I still have to wear a shoe that ties, I feel like I can't hold a shoe on if it's a loafer type, but my foot does feel a bit stronger. I was worried about losing the function altogether and then not being able to drive when it got to my right foot. You are proof that it does get worse, but you are also proof that it can be reversed, at least to a certain extent. Rusty, is there anything you do that makes it worse, activity-wise?
This is getting me some great answers, thank you all so much. It's wonderful to be able to talk to people who actually have similar experiences. They can and do tell me so much more than any doctor does. I guess you have to live it to tell it. I thought it was different for doctors, they just have to know about it and they'll tell it, but that's not the case, at least for me. I learn so much more here than anywhere else.
That's a better translation than my 'squished'. LOL - Yes, he said the disease inflammation can cause pressure on the nerves and make them go numb and that it can take as long as 6 months or a year after the inflammion is down for the nerves to work properly again.
After that previous discussion on neuropathy I remembered a first person article I read years ago and I wanted to mention it to anybody who might be interested.
This article was written by somebody who'd been thru a lot of neuropathy. I don't know exactly what he had - half way thru the article I went back to the beginning and started reading again. I don't think he even said what he had - possibly a writer's device to make it apply to more people. I remember thinking - oh, he's diabetic - but on reread, his exact diagnosis was NOT mentioned.
Anyway, it starts with him being in a waiting room with a lot of other people with various stages of neuropathy. 50% were missing limbs (hence my thougth about diabetes). So, he gets into see the doc and he's freaked - what can I do to stop this? And apparently the doc said "I can tell you, but you aren't going to do it". He said "walk".
Now, this guy was bad off, but totally motivated by the image of all those people with missing limbs. So he starts walking. At first he can only make it down the 3 stairs of his apartment building and 1/2 a block away and he can't even turn around and come back. Over the year he works and works at it. He can go a smidge further each day. Finally he is walking miles. It ended with his training for some 5K marathon.
So, I think about this in terms of RA. I know I sure as heck couldn't make it a block when I was first diagnosed. Heck, every time I did work out I got some sort of 'attack'. So I just quit trying to work out.
But I wonder if that was the wrong decision. I know that studies for Fibro say that if people exercise thru the pain they get better and better and really reduce the symptoms of the disease.
Endorphins? Who knows. But maybe this guy is right to have not said what he exactly had (irked the heck out of me). Maybe it's the quickest way to 'undo' our damage.
Pip
Pip, I think you're on to something there. I know for a fact it helps to a certain extent, from personal experience, with the discomfort. But it hasn't stopped the progression. Of course, maybe I'm just not doing it enough. Yes, I think there's a lot of wisdom in exercise for a lot of what ails us with this disease. Thanks for the reminder. We can all benefit from it.
I just had a thought. Obviously, exercise increases the blood flow which probably helps feed the nerves and makes them feel better. But couldn't it also cause inflammation if we overdo it? I guess the key is to know when to stop.
Don't know. My form or RA (Palindromic) has these intense 'attacks'. I'd try to exercise and be down for a week. Then I'd try again and...it was a never ending circle.
I do think starting slowly and working your way up worked for a Fibro woman I know. She got up to 3 miles a day and said it was hell the first 3 months. I remember thinking she was crazy. Now I know better.
Pip
I'm glad I was able to help some...I think the most inportent is to find someone who will listen and put you on the right meds. It can be controled. When I 1st. called the doctor I was told it was just RA and not to worry about it, take Vit. E then I them it was Vit. B and D. they never did anything till after my feet drop conpletely down where I couldn't walk or move them. when it started to happen again they put me on predisome right away and I didn't get down. I still have a dead big toe and weaks ness in the feet and hands. I can't keep anything on my feet unless they tie or are tight. I have lost the grip in my hand so I can pick up stuff if I don't have to get a grip on it, sometimes I drop for no reason after holding something for a few mins. As I say very few get it this bad, I know of one other lady who I talked to while in the hospital and she lost 1 foot and part of her hand because of Neuropthy, but she was diabetic. I think its very inpotent that you do everything you can, like walking just don't overdo. When this happen to me I made up my mine that I was going to walk again so I got shoes that had a heel on them and rode a bike, We should never give up or set down it's very inportent to rest when needed, but to do all we can so our bodies don't give up on us.
I can now do about anything I want as long as I don't overdo, the trick is to know when you start to pick up something and it feels heavy put it down, If you are only half done mopping and your tired stop and set down for 10 mins. or just let it go. I love a clean house but I'm not getting back down over a dirty floor. When all this started I was working two jobs and My husband and I was redoing our house, I was knoxing down walls, so hard work will bring it on.
Jesse,
That is a good question - if you haven't seen a neurologist you should. The trouble is that often they can only rule things out and not find the cause of neuropathy. But then you will know you don't have MS, for instance, which is good. I tried Lyrica and Neurontin and they didn't work for me, but nortirptyline did.
It is important to keep looking for a dr who will treat this even if you do not have a dx. Your NCV and emg may well be in normal range but there is not a good test for small fiber (sensory nerve) neuropathy. My neuro said that my NCV was in normal range but got a different reading on right and left legs which indicated the neuropathy was from an autoimmune cause. Eventually the damage becomes permanent (at least in my experience) if it is not treated. I have had areas start up and then return to normal since treatment.
Be aware also that these tests are not always properly done and if not, will not show anything either. The technician should make sure you are warm enough first. For me they put very hot towels on the area. If they are checking to see you are warm enough that is a good indicater that they know what they are doing.
Sorry for the long post but I went around for 18 months thinking I was crazy because no one could find the problem until I found the neuro I have now. He understood the symptoms and knew how to treat it. It is really hard to have all these crazy symptoms and no firm dx. It seems like every few months I develop a new problem but never fit into any particular disease pattern. Imuran has been the best drug for me to slow things but I need to increase prednisone when things really flare up. I notice you have FM and they are thinking that is a possibility for me too, but again, not enough to dx it!
Lots of things can cause neuropathy and this is just my own case so I don't know how much applies to you. Don't give up until you find a dr who can help you. Take care and let us know how it goes.
Laker
[QUOTE=milly] Numbness with me tends to come and go. It is so hard to say when you have multiple problems. I have alot of buldged disk. I have vascular problems, I have RA and fibromyalgia. It simply hurts my brain to try to sort out if it is the chicken or the egg. And the spine specialist said he did not think the buldged disk caused all of that[/QUOTE]
Yep, me too, although there is only one herniated disc in the lumbar spine which didn't explain my problems. And the three herniated cervical spine discs have nothing to do with my face, leg and foot issues. Milly, you should try to confirm if it's the drugs or something else causing your foot problem. If the doctor, can't tell you, just ask here. Someone will be able to clue you in, I'll bet. I guess I shouldn't be angry with the RD, it's such a confusing disease, but the fact that others have almost identical problems makes me think he should have said, "It could be the vasculitis acting up from increased pressure during exertion, but I'm just not sure." Not "That doesn't make sense."
The RD is treating this only after several years of bouncing between neuros and neurosurgeons. MS was suspected time and again, but the MRIs were clear. It wasn't until a neuro at Wake Forest did blood work (no one else ever did that), that I ended up with the RD. I was thinking of going back to a neuro in conjuction with the RD but things started getting better so I skipped it. If this continues to rear it's ugly head I will either ask for different meds or get another consult with a neuro. I feel confident in pushing now that I have some confirming information from you guys. Thank you for that.
Laker, based on your post, I think the nerve conduction study I was given by a neuro wasn't very good. No warm towels or anything like that and everything came up normal. Of course, at that time my symptoms would come and go more sporadically and I was not having symptoms that day. I really think that makes a difference when there's no symptoms, but I'm no expert. I see Lyrica didn't help you. I was hoping to try that in place of one of the other meds I take. I think I'll do some research on Imuran.
These posts are amazing and so helpful. Please, nobody should apologize for long posts to me. I learn so much and am amazed at how similar some of your symptoms are to mine. I feel empowered!!! I'm not crazy!!! OK, well, maybe I am, but not about this.
Milly, My family Doctor had no idea what to do or what was causeing it, He sent me to a Neurologist, who ran a lot of nerve test and put me on predisone, then I was sent to a Ruemotologist who put me in the hospital and did all kinds of test, I was in hospital for 10 days, The Neurologist I was seeing and the RA doctor couldn't agree on meds. So I don't go to the Neurologist. Its just another problem we have when the doctors can't agree, who do you believe...LOL. Last time I was at the RA doc. He said I shouldn't be taking a new med. that the family doc. put me on because of meds I was already taking, so I came home and call drug store and was told I needed to call family doc and talk to him about it, they said you uselly don't take the two drugs together, when I call they checked and told me no not to take it. I think some times they just order new drug without going over your list. My RA doc is very good about keeping up with whats going on. He checks my meds every time I go so I trust him. Now I got off the subject, sorry...I get so mad at all we have to go thur and that we can't trust them...alway have to double check, have to fight to get them to listen to us. I know I wouldn't have all this damage if someone had listen to me when it started. gotta go got an appointment, have a good day.Hi Jesse,
I know the lyrica works for a lot of people so I wouldn't hesitate to try it. The imuran takes 3 or more months to start working for most people and your dr may be reluctant to put you on it until you have tried some faster acting, safer meds such as lyrica. Just keep pressing on to find what works for you. Take care.
Laker
Well i think i will wait and see the ruemetologist fisrt before going to my nuero also. I do not think i mentioned my foot drop to my nuero as that was before seeing him. It used to bother me alot had to drag the foot around it was a liability. It has been years scince i had that but i am sure it will happen again. Well my family doc said the specialist would test me for alot of my problems ears, liver, ect and i have to see what he puts me on. I don't know i may see my nuero first for a consult. He is very agressive and i am more concerned about the RA treatment and the meds agreeing. Like Rusty said i do not always know if they really look at what your on when they add new meds. I always double check with the pharmacist. Just one day at a time. I want a proper dx all the way around this time. Maybe wishful thinking on my part but i am sure going to say my piece this time. And do not ever feel crazy about your symtoms. AI does crazy things to your body. One has to be there to understand. We have to put it together to get a proper dx. As in i have all of the AI hepatitis symptoms, but if one doc knew i was having unexplained rashes, and one knew i quit getting periods, they all knew i had mystery raises in liver enzymes and was tested for everything else under the sun. I am just saying one thing by it's self is a mystery piecing every symptom together could be a disease or a condition. AND both the ears and liver for me could be secoundary to sjorgrens which my doc already is sure i have. So ask investigate keep a journal and tell all your docs. I have to put all my docs on the same page and this forum is helping me so much. I just hope it goes smoothly for me and the rest of you. My doc is on my side and does not think i am crazy, he knows my body is crazy. Well yes i am certifiable, LOL