I went to the Dr 2 weeks ago and he check my reflex in my knees. It hurts like Crazy when he does that. My knees and legs hurt all day which they have been for a while it just made it worse. That night my right leg gave out and I fell in the kitchen. I laid down after that and a few hours later my right leg was cold to the touch. It felt like I had ice packs all the way down my leg. So I took a hot bath to see if it would help warm the leg and when I got out it was still cooler than my other leg but not to bad. Went on to bed. 2 days later my toes on my right foot start tingling really bad like a painful tingle. I've notice I get the tingling alot more now not just the right feet but my left too. Its also up in my legs. Sometimes when I walk it starts with the painful tingling. Its hard to explain the feelings I'm getting in my arms and legs are almost like they don't belong to me. They hurt and tingling and a weird sensation..
I'm keeping not of all this to take to the Dr but was wondering if anyone has Any ideas whats going on or if they have had this happen???
It sounds like you might be experiencing Peripheral Neuropathy. There are many different diseases that can cause Peripheral Neuropathy, including Lupus. Inflammation causes the long nerves that lead into the extremities to malfunction causing the painful sensations you describe. I have this problem, and like you, one of my legs gave out in the kitchen one day, and down I went. I'm 6'1" and 200lbs so it's a long way down, and I hit hard, splitting my head open on the edge of the counter. It was like someone just flipped a switch, and my leg no longer worked. Got a few stitches out of that one.
Although I have Systemic Lupus, my CNS problems are mostly caused by de-myelination of nerves as an effect of MS, which I was diagnosed with 1.5 years ago. I get the painful tingling sensations and coldness as well. Do you have a Neurologist? If not, you may want to get a referral to one to see if neuropathy from Lupus is what's happening. There are some fairly effective drugs for treating this. I take Neurontin and it works well. If you Google Peripheral Neuopathy in Lupus, you'll find some detailed articles on the subject that could help you find an answer to the cause.
Thanks Rob... I'm going to do research on that..
I have fallen before but it has been bc of my ankles.. Sometimes they just give out and thats been off and on since like 2001 I guess. This is just so different..
I do have a Neurologist. I'm seeing one for my headaches right now and waiting to have some vascular test. Besides having that test done I don't think I go back to see the Dr for a few months. Is this something I could go ahead and call about or just wait until my appt?? sorry so many questions.
Well, if it were me, I would call and see if they can move the appointments up to get you in sooner. Explain to them how you are in pain and how these symptoms are having a negative effect on your daily life. You should not have to wait in pain for an appointment that's months away. If it turns out that this is indeed Peripheral Neuropathy, there are some fairly effective drugs that can control and sometimes eliminate the pain P.N. causes, and the sooner you can get into a course of treatment the better.
Originally Posted by MeMelissa
PS-No need to apologize for asking questions. Helping people find the answers they need is one of the reasons for this site.
I have the very same feelings in my legs and feet - mostly the right one. I've had my hubby to come touch my legs, and he can feel the difference in temperature between my legs. My legs will also just "give out" and I'll fall to the floor, too. I used to do it regularly in front of my classroom when I was teaching.
I've been through a lot of tests, and the neuro told me that it isn't PN and it can't be my muscles. I've read on the Sjogren's site that a skin biopsy to check for small nerve and fibers is the only way to show it, but he won't listen to me. Now he wants to do a lumbar punch, since he's convinced that it is a CNS problem. I'll probably go through with it, just to get more info. I'm wondering if I have both - PN and CNS involvement.
It's very frustrating to go through all of this - good luck to you.
I havent been having a problem in my legs but my right qrm is driving me nuts! I get a tingling sensation that almost feels electric and I feel like it is "drawing'. I havent noticed a temp change however. Sometimes when I am in bed I will notice an electric feeling in my leg but not often.
Add me to the list.
All of the above, and, I can't stand to have anything touching my toes when I'm trying to sleep. Just the weight of a sheet or blanket feels like it's pressing down on my toes. I also get a sudden pain in my toes like they've been hit by a hammer, and just lately the top of my foot gets that same sensation just out of nowhere.
Check out this site about SFN - Small Fiber Neuropathy.
I can really relate to what it says. The problem is that I can't get my neuro to listen when I mention it - he has his own ideas.
OK, I have a question. Does anyone else ever get the feeling in their hands/lower arms or feet/lower legs where they tingle and hurt but the pain is so intense that you can't tell if they feel really hot or really cold? You know how when it is in the dead of winter and you go to step into a really hot tub sometimes the water feels so hot it feels ice cold? That is how my arms and feet will do when they tingle like this. Externally they are not hot or cold but they have the sensation to me of being painfully hot or cold but I can't tell which.
I have so many odd things happening I know my doctors are sick of me. They basically ignored me and thought I was depressed until I had the seizure at work that sent me to the ER. Now I am on meds for that but everyones answer is that I need a sleep apnea test. *sighs* Anyway... any input on the "hot/cold pain"
Thanks for this info! I need to look more into this
Originally Posted by magistramarla