Does this sound familiar?

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MrsMacD
Regular Member


Date Joined Jan 2005
Total Posts : 117
   Posted 8/22/2015 9:19 AM (GMT -6)   
Hello all,

I have this thing happen regularly that I call "burning" for lack of a better word to describe it. It can occur from the lower part of my knee up the top of my thigh or all around my shoulder down the top of my arm or my hips. It can happen on either side of my body, meaning it's not just the left or right leg or arm and it can happen on either body part at any given time. Anyway, it feels as if this extreme heat is radiating from the inside out. As if I have a severe sun burn on the inside of my body that I can feel on my skin. It burns so hot that I can feel the heat radiating if I hold my hand an inch to two inches above the sight. It is quite painful but mostly confusing as to what and why. There are also times when I feel as if my entire body is inflamed on the inside and my whole body burns up like this instead of just a particular limb. Of course when that happens I just lay around like a lump and don't want to move. The heat (burning) is so intense that others can feel it when I ask them to touch my skin or even hold there hands right above that area. I have done that just to make sure I'm not crazy and they can feel it too LOL. Anyone know what I'm talking about? It's so hard to explain to my Dr. I've tried but he usually looks at me with a confused look.

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 8/22/2015 9:26 AM (GMT -6)   
Have you taken your temperature when this is happening? Maybe you are spiking fevers?

I hate it when doctors look at me like I have two heads. Happens a lot! :/
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

MrsMacD
Regular Member


Date Joined Jan 2005
Total Posts : 117
   Posted 8/22/2015 9:34 AM (GMT -6)   
Fevers are a common thing for me at night or when I'm not feeling well. Right now for instance, my right shoulder hurts and the skin is burning hot all around the shoulder, down the outside of my arm to about 4-5" above the elbow area.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/22/2015 10:04 AM (GMT -6)   
Definitely sounds like typical Lupus inflammation -- it can be random and unpredictable. Generally my rheumy gives me a short course of prednisone to help keep it under control.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

MrsMacD
Regular Member


Date Joined Jan 2005
Total Posts : 117
   Posted 8/23/2015 11:00 AM (GMT -6)   
Thanks so much for the replies!

I'm now in a horrible stress induced flare. I feel as though I am lugging cinder blocks around that are attached to both arms and legs. I'm exhausted all the time. Have 0 energy. Throbbing pain everywhere. My hands hurt something awful (especially the right one. Swelling is refusing to go completely away no matter how much I yell at them and will it to) lol, my feet are so incredibly stiff, but the "burning" skin on my arms, legs and knees are the worst if it. It's as though I peeled my skin back to lay in the sun and ended up with a bad sunburn on the inside that radiates to the outside. It's nice to be understood by someone when I try to explain it the best I can. That in itself is difficult since my articulation skills vanished some years ago. Uggggg!!!! I'm so frustrated!!

MrsMacD
Regular Member


Date Joined Jan 2005
Total Posts : 117
   Posted 8/23/2015 11:14 AM (GMT -6)   
Oh yah.....on top of all that right now, I've lost a lot of hair along the hairline that is very noticeable when I wear it down. ( I've had very long thick hair with bangs my entire life cause I don't have the best forehead.) it's always been my best asset and now I have to figure out a new hair style that'll cover that up. Until then, up in a bun it goes! I know others have had it worse. Just feeling blue about everything lately and I feel bad complaining to my husband too much, so im here instead. Thanks for letting me complain!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 8/23/2015 11:57 AM (GMT -6)   
No problems, complain away. (We tend to call it venting, a way to blow off steam at people who understand instead of exploding at our poor family members all the time!)
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 8/24/2015 8:41 AM (GMT -6)   
mrsnank,

I am losing hair as well. I have been trying to put it up in ways that hide it. Ugh! I have always had long hair as well. I found a head band that is pretty large, so it covers almost the entire top of my head. I just brush my hair back, and put it over it. It's also great for those days I don't have the energy to wash my hair.

There are days we have to chose which tasks are more important, and if I can just cover up the dirty hair, I can accomplish something else.
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 8/24/2015 7:25 PM (GMT -6)   
I've lost about 40% of my hair and it has becomed wiry and very curly. My hair was very thick and straight. I wear a hat outside anyway, so it's okay.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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