Does anyone on here have this, and does it affect your whole body? I have tingling and hypersensitivity to hot and cold sensations in my hands and feet, but my WHOLE body is experincing numbness of some sort, even the inside of my mouth. It is driving me absolutely crazy. I have read that neuropathy can be a sign of RA, but I am worried I have something else going on. Saw another doc on Friday who said, with the level of my RA factor - 23 (all other blood tests were fine, sed rate of 1) and the "mild spondylitis" from my x-rays and MRI of my neck, I should not be feeling this bad and couldn't even tell me I definitely have RA. The feelings of awful malaise just continue on - I really don't think I have the flu - this is different. I just don't know what is going on and am scared to death. I read something about rheumatoid vasculitis which can cause loss of sensation and it sounds really scary.
As always, I really appreciate your input. This is so new and I am terrified. I am still not convinced I do not have some other sort of unidentified disease.
Fade - this is just in my own humble opinion, but it seems to me that we all have alot in common, and then our own unique journey in our disease road. I get tingling and numbness and it was so bad suddenly for the first time last weekend I ended up in ER for pain medication. Came out of nowhere, so now a new addition to my journey. I also started OT this week and my first splinting. Another step on my journey.
The acceptance in the beginning that you have something in you that is changing shape, symptoms, waxing and waning second by second is a hard thing to get your head around, especially if you were a high functioning human before, very physical or hard working or very intelligient and brainy. I want you to know that all of us here were sitting in the same post #6 that you are on right now with the same general fears and conflicted thoughts as our bodies start to become under the control of "whatever you have", and we all understand and are pulling for you. I think the first year after diagnosis is the hardest, especially if you had a hard time getting diagnosed and have been ill for a long time before getting proper medical attention.
It does get better, you just have to take it one day at a time, find the best doctors you can, work within your own boundaries, and you are the best doctor you will ever have to make the final decisions. Take care ~~ Cathy
Dear fade, omg that sounds so scary. I have a stubborn left foot problem (along with hands/neck/) that continue to bug me. I've just been to a podiatrist and he gave me a cortisone shot in my fooot becasue of a 'lump-neuroma' he called it. I told him my toes are numb , as well, and he said you probably have Neuropathy. Huh?? I've never had my RA even mention it! , So, now, if he ever gets back from vacation (Thanksgiving/Christmas) he leaves for 2 weeks! So I have an appointment in January...
I guess Neuropathy is yet another symptom of this dumb disease. I hope you can get some more info and some more help. Sorry you must suffer with this. Lynda
Fade,
I can't really say I've had wide-spread neuropathy. The only time I experienced it was in my hand when I had a pinched nerve in my cervical spine between the c5 and c6 vertebrae.
Just curious. Have you ever been tested for diabetes?
Fatigue was my first symptom. It was terrible and I made several appointments with my PCP telling them something was wrong. Since the results came back normal, I was told I was fine. I knew I wasn't fine. When the joint pain started I was sure they wouldn't believe me since I didn't have any swelling. They went ahead and ran an RF and ANA. I consider myself "lucky" that the tests came out positive and I finally had some "proof" that something was wrong.
It is scary, but sometimes you have to wait for a disease to "rear it's ugly head" so to speak. Even when I finally made it to the Rheumotologist, he told me he was sure I had RA, but he couldn't officially make that diagnosis at the time. Personally, I didn't care what he called it as long as he helped take the pain and fatigue away. It probably took another year before the RA diagnosis was official.
Yes, I have neuropathy like you describe. It started in my feet and then spread. At times I have noticed it in my face. Please see a neurologist. They may not be able to determine what is causing it, but you need to find a dr (rheum or neuro) who will treat it. Mine is still spreading, but much more slowly and I have improvement in my hands. I take nortriptyline to interfere with the nerves that are misfiring. This helps with the pain and twitiching. Imuran and prednisone have helped slow the process. I have gotten used to the tingling. I have complete loss of sensation in some areas and need to be careful to notice if I have any wounds etc since I can't feel them. Good luck, you may need to work hard to find someone who can/will help you so be persistent!
Laker
Thanks, you guys are so sweet, I am seeing a rheumatologist first time on Tuesday. I had an preliminary exam by a neurologist a couple weeks ago and have a nerve test scheduled for Nov. The neuropathy is extremely uncomfortable, but I have had trouble finding cases of it where a person experiences it all over their whole body. My c5-c6 vertebrae are affected by the arthritis and the disk bulge. Nothing else showed up in my spinal x-rays. Had a brain MRI but not gotten results yet. I had my blood sugar tested, it was fine. Slightly elevated TSH, and blood pressure has been high for me.Fade, when you see the doctor, ask for an ANCA test if you think there's a possibility of RA vasculitis. I have neuropathy from the connective tissue disease which brought on the vasculitis. Of all my blood tests, one that made the RD nervous (his word) was the ANCA and the possibility of vasculitis that could get out of control. Be sure to check into this. I think it takes two weeks for that test to come back but it's an important test.
I have aches, numbness and tingling along the entire left side of my body, including my face, and it's moving to the right a bit too, but it's not the whole body like you have. I'm betting the right medication will give you a lot of relief. I've been better, with only occasional symptoms since the meds kicked in. Good luck and keep us posted.
Nortryptiline is a tricyclic antidepressant. I tried lyrica and neurontin which did not help. Pain medications also do nothing. But the nortryptiline does help a great deal. I hated to take an anti-depressant when I am not depressed. But it became clear that it was helping. As my symptoms worsened the dose was increased. I am not free of symptoms but they are at a tolerable level. ON the positive side, it makes me very sleepy so I take it before bed. Sleep was becoming a real issue. It is so hard to sleep with painful "zaps" and muscles twitching. Now I sleep great which makes me feel better overall.
Laker