I am coming up on my second year with fibro and am still getting used to the constant symptoms and changes.
Lately though I have noticed that at random and often times while I am active and moving my limbs go numb and cold. Sometimes while I am driving my hands go numb and cold. The other day I went to a baseball game and while walking a while to our seats, my leg got a strong tingling feeling and went cold and weak.
Does anyone else have these symptoms? I am afraid it still may be MS that I have instead, but my doctor is out until the first week of August.
Hi Feel Weak and welcome. Wow, I'm sorry that you're experiencing this as it must be disturbing to you. I do know that people experience bouts of numbness with fibro. I'm not sure if what they suffer is quite the same though.
Has your doctor run any tests to rule out autoimmune illnesses such as MS? If not, you'll want to have that done, so you'll know if you're dealing with something beyond just fibro. I have no idea if you do or not. I'm thinking that you won't get an answer until those tests are run.
You know, if you're experiencing leg weakness, you can get a cane to help support you. I use one and it comes in so handy. As I mentioned in another thread, I have several and they have very pretty patterns on them. It's just a thought.
Thanks Petunia!
My doctor has run AI tests but the first time it said I didn’t have one, then the second one said I did, and the third said no again! My body really thinks this is a funny game apparently! I will have him run the tests again to be sure this time. Thanks for your answer.
As for a cane, while I am sure it will probably help, I don’t know if my pride can do it. I am a busy 26 year old and a cane right now may make me more upset. I know it would help but having my body attacking itself makes me sad enough. But thank you for the advice. I will keep it in mind.
Ah yes, 26 is young for a cane! I can understand your distaste at the very thought of using one! (But if you ever need to find a really pretty one, let me know, as I know where to go.)
I know that some people do have back and forth test results. Which tests came up positive once? Have you read any MS message support sites or symptoms of MS to see if it fits? One or two similar symptoms might not mean much, but if many match, then you might want to go to the support sites and ask them a few questions.
My foot does go cold for a while if the fan blows on it for a second. There's a spot right in the middle of the foot that seems to be super receptive to cold and pain. In fact, when I feel that weird sense of cold, it kind of also feels like pain. I don't think this is what you're talking about though but I wanted to throw it out there, just in case it's what you're also having. In my case, I think it's fibro...unless something says otherwise.
I'm sorry for you that you have to deal with awful fibro at such a young age and i will send up a prayer that you don't have MS.
I tested positive for ANA. As far as the cold feeling it is more like when you are outdoors in winter and you want back inside and that cold skin feeling that lasts for a little while, but out of random. In fact, the other day I had a heat pad on my knees for swollen joints and my leg went cold then which was concerning.
I will try the MS boards too though. I just want to know what I am dealing with.
ANA. So lupus?? Here's a hint for you. The day before your next ANA test, go outside for 15-30 minutes. Don't overdo it and make yourself ill. Just enough to get some sun, even if it's a stinky day. It seems that if lupus is in you, that it shows on the ANA test after some time spent outside the day before the test. (I know this because before I knew I had fibro, I was checking autoimmune sites to see if that's what was wrong with me.)
Do you get sick from going outside in the sun on hot days? Do you get a rash or redness across your cheeks? Do you run constant low grade fevers? I know these are some basic signs of lupus.
Heck yes, you do! I always get compliments on mine. They're like accessories. But I surely do understand why any young person would be hesitant about even thinking of using one!
That's what they were thinking it could be too was Lupus. I do get sick outdoors. That's the problem is all my symptoms line up with lupus, fibro and MS. It's like my body is just broken and no one has been able to fix it.
I don't get rashes on my cheeks like lupus patients usually do but I do get sick on hot days, including headaches and nausea.
Thanks for the feedback! I am glad there are people who are willing to help!
No problem, kiddo. You deserve to have support through this.
I do know that some people sit right on the edge of having MS and lupus...but the tests don't definitively show either. So I think it's possible that you're like them, just on the brink...or else the tests aren't accurate enough and you might have one or the other. Of course, it is possible that it's just fibro, but I'm not exactly sure about that, given your symptoms.
I get the headaches and nausea on hot days too. Partially for me it's from dehydration. since I hate drinking water. I kind of wonder if it's normal to feel that way on hot days or if it is fibro/lupus/whatnot.
I know, not a lot of answers here. I'm hoping that it's not lupus or MS. I guess that time will tell if it's just fibro or not. Sorry to not have a better answer for you.
Sorry to hear that you are experiencing these symptoms. I too would have my feet get extremely cold randomly and always go numb as well. My diagnoses…Neuropathy.