Thursday, November 10, 2011

Pain, Pain, go away!

I'm starting to have a rough time with my pain levels. I haven't had much by way of bone pain all summer long and here we are about to enter the long, cold months of winter and I am starting to be in pain. Again. It was just about a year ago that I had the worst pain in my leg - ever. I wanted to cut it off. Just recently I had a similar pain in my hand. I've also had small pains in my hip. I just keep fluffing it off, hoping it's just in my imagination, but it's real.

I am 36 years old. I shouldn't have all these "ailments" (as my late grandmother would say). But boy am I feeling old today!  My fingertips are starting to turn a dark purple/blue color from the Raynaud's and my hand just aches. I'm doing everything I can to just not cry. I don't want to cry because the pain is unbearable (it's not), but because of the utter despair I feel. What is going on with me?

I was virtually pain-free all summer long. I felt great. Today is a totally different story. I feel like everything is falling apart. I'm finding myself desperately searching the internet for answers. I'm even thinking about doing the gluten-free thing again for awhile to see what happens. And yet, I am also thinking that there is something about environmental changes that my body just. doesn't. like.

When I was thirteen I went swimming in my very cold pool in late May. I would beg and beg and beg my father to open the pool and he ultimately would just to keep me quiet. Well, that particular year I jumped in the pool did my swimming thing, came out and had all these bumps all over me. Didn't know what they were. Whatever. I warmed up, went back in and after awhile came back out again. I will never forget what happened next. I was standing on our back deck chatting with my mom, grandmother and my friend. I was all wrapped up in a towel, still wet from the pool. When all of a sudden my limbs got weak. I rushed to sit down. I could only think. Speaking was so difficult. There was a ringing in my head like you wouldn't believe. I was trying to say "call 911" but I couldn't muster up the energy. Then I started to lose my eyesight. I guess I did say that allowed because my mother pushed my head down between my legs so I wouldn't pass out. After warming me up a bit, I was able to get dressed and warm up in bed. I remember my grandmother coming in to check on me and she commented on how grey I was. 

It turned out that I had cold-induced urticaria (hives). The doctor told my mother how lucky I was that things didn't go worse. Basically, I was lucky to be alive. I should have gone to the hospital that day, but I luckily had an angel on my shoulder that day. 

As it turns out, I have urticaria again. This time it's heat-induced.  I thought I wrote about it over the summer but I can't find any such posting. I had a rash over the summer. I got the same rash the previous summer too. No one could tell me what it was. I had a biopsy done this summer and it turned out to be urticaria, most likely from the sun. When summer ended, so did the rash. 

So, this is what is making me think my symptoms are environmentally triggered. This pain I'm having, I've had for the last 3, maybe 4 winters. Getting worse with each passing year. So, needless to say, I am back on the warpath of finding out just what is going on with me. I've set up another appointment with the rhumetologist. That appointment is in early December. Until then, I will be here reading and reading and reading; searching for answers. 

I don't mean so sound like a Debbie Downer. I really don't. I've always said "I have MGUS, it doesn't have me" and that still holds true. When you're in pain though, the game changes a bit...I just want answers. 


  1. Wow - that sucks! Hope they figure out quick what to do to help you!

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