Leg Pains

[Deb]

I've had full-blown POTS now for eight months. I can honestly say that the only improvement I've had is keeping my blood volume up which has kept me from fainting/blacking out. All the other symptoms are the same or worse. Specifically, the pains I get in my legs when I stand. They used to come only occasionally, then I only had them mostly behind my right knee and my big toe and foot. Now I have them all up and down both legs, even in the groin sometimes. And they are so painful at times. I also am having numbness and tingling in my legs at least once a day for about 30 minutes at a time.

Does anyone else have this? And, if so, what do you do to relieve it? It's gotten so bad in the past week that it's now waking me up at night.

HELP!

[purplefocus]

Hey Deb,

Go back and look at some old post. I remember not too long ago alot of people posted about leg pain.

Paige

[Faith14]

Hello Deb, we'll have to go back alittle for this leg pain, not being here long and all. I just thought I'd drop a line that I suffer the same thing...when I had the tilt table test back in Feb. my doctor told me that my legs weren't get the right about nerve impulses...which could be due to blood supply. So I had to start wearing those Surgical Hose for my legs, suppose to help my B/P when it falls out. I will be honest, about the only thing to help is to rest my legs. I wish you the best I have suffered with leg pain and heaviness a lot of years. We don't know if it's the Dysautonomia or the MS. Good Luck to you Deb.

Southern Blessings, Rita

[Gwem]

hi,

I just had an EMG done, because i've been getting such sever leg pain in my legs from the knee down, it comes and goes though and particularl hits me at the same time of the month, it's werid like my symptoms come in cycles. I haven't gotten the results back yet since i just had it done wednesday.

[briarrose]

I have had leg pains, but not very severe. But I completely understand the pain in the groin and it does come in cycles. When I get that pain, I can't walk. Sorry I can't offer any advice on what to do, I just sit down.

[geneva]

I have had leg pains with POTS for 4 years. MAinly mine has been just down the BACK of my legs and particularly the back of my knees. The doctors never have figured out why and I don't understand why it comes and goes as it does. In March I had another spell of leg pain, saw my dr. and again came away with no answers. A nutritionist suggested I try magnesium in the evening since I already get some in my multi-vitamin in the a.m. I did and my leg pain has been gone since. I don't know if I have a deficiency or it was just coincidence in the timing.

I don't know if my labs check for magnesium or not but plan to ask my doctor about on my visit.

of course, we are all different and nothing works the same for everyone but I mention that it worked for me. Be sure to discuss with your dr. if you think it might help.

[Deb]

I suppose the leg pains are going to be something that I'll have to deal with. I have found that soaking in a warm bath helps. Mostly I just put them up. I'm afraid to take pain relievers because my Mom has bad arthritis and is super sensitive to pain relievers and can't take any of them. I'm afraid that will happen to me, so I'd rather not even start taking anything.

I had the autonomic tests again on Thursday - tilt table, valsalva(that's the blowing thing), and measured deep breathing. My heart rate didn't go abnormally up this time. My blood pressure was everywhere, and I had several of the shaking, jerking episodes with slurred speech and blinking eyelids, so they saw first-hand what happens to me when my blood pressure wacks out. I haven't heard anything, yet, but they sort of hinted around that it might not be POTS, but something else. Lovely. Oh well. If they can just tell me if I should get a wheelchair and handicapped license plate, fine, but I can't keep falling down all time and wondering if I'll ever get better, or always be this way.

[Patricia]

Deb,

PLEASE do not have your mind putting you in a wheelchair! You are still able to work aren't you? Did the doctors explain what else they thought might be going on and if you will have further testing? I know how frustrating it gets, but you may be just going through a bad spell if this is your first summer with POTS. If there is something else, maybe discovering it will make you feel better overall with specific treatment.

Patricia

[Deb]

Thanks Patricia. I have been pretty low lately because I just seem to be getting worse. I'll just have to be a little more patient and find out what they think is wrong, and then go from there. I have such a hard time getting anyone from the Neurology Clinic to call me back.

[calypso]

Deb,

Have you had an MRI of your brain? If you are falling down, I think you would need that. Chiari malformation comes to mind, because it can cause POTS symptoms AND ataxia.

I wish you the best and understand how difficult it can be to maintain patience when trying to find the correct diagnosis. I am going through the same thing, with my doctors "pretty sure" it's just POTS but not sounding very confident that that's all that is going on.

Amy