I have something called Raynaud’s Phenomenon, which is something quite common in people with Lupus, and it can occur randomly in healthy people as well. Simply put, it’s a sensitivity to rapid temperature change in your fingers and toes. When you go from hot to cold or the reverse, the blood vessels spasm and cause numbness, painful tingling, and discoloration. When fingers or toes get cold they go bright white, when they get hot they usually get red. I also get a bluish/black discoloration in my feet but I’m unsure if that is caused by raynaud’s or something else. I used to only get raynaud’s attacks in my toes, but now it has progressed to affect my fingers as well, and the numbness has gotten worse.
About a year ago I had a neuropathy in my toes that was unrelated to raynaud’s. My toes became permanently discolored black and blue and they were swollen and sometimes blistered. They were extremely sensitive and painful to the touch. I actually thought I had broken toes at one point and received an xray that was inconclusive. It eventually went away after a few months, but this was what tipped off my Lupus diagnosis.
I get a lot of random tingly episodes in places all over my body. My legs and arms ‘fall asleep’ all the time, my toes and fingers are tingly or numb most of the time. It’s painful to hold a cold drink or ice cream. It’s become a real daily annoyance all around.
The other night I had something new happen. I was sleeping on my right side, and I woke up from an intense burning on the skin on my hip. It was like I fell asleep on a heating pad that was too hot times ten. I rolled over to my other side and fell back to sleep, but I didn’t get the burning on my other hip. I remember the right side hurting when I touched it. That day, my hip wasn’t burning anymore, but it was tingly, and it would get ‘warm’ as if it was about to start burning. It was still a little sensitive to touch, but no rash or anything like that.
I had rampant chicken pox when I was about 3 years old. It was so bad that I remember most of what happened. My brother had it pretty bad too. We had them everywhere, even in our mouths and under our fingernails. We even went to the doctor because my mom was afraid they were going to end up in our lungs. Luckily they didn’t
Anyway, I told you that story because I was worried all day that my hip burning could be shingles. Most people probably assume shingles is something old people get. It’s something people with suppressed immune systems get, which yes, includes old people. But in my case, since I’m on medicines that suppress my immune system because it wants to attack me, and since I’ve had the chicken pox, I could potentially end up with shingles at some point.
The Chicken pox virus never leaves your body. It simply becomes ‘dormant’ or inactive in your nervous system. When your immune system gets compromised, the virus can manifest itself again as shingles, causing burning, itching, skin rashes and blistering, and sometimes nerve damage. It can also cause flu-like symptoms.
So far there’s no rash or anything visible. Right now it doesn’t burn or tingle, but I feel a ‘phantom tingle’ which is kind of weird. I’m in to see the doctor tomorrow and I’ll bring it up. I hope it’s just some weird random nerve thing that will just go away on its own.
I can’t forget that I have a syrinx from my chiari. Even though it’s itty bitty, it must be responsible for at least a little of the numbness and tingling I get.
Lupus is such a prick.