I have SLE and am extremely sensitive to the sun. One of the things that happens to me when I get in the sun is that my whole body breaks out in excruciating pain from neuropathy. If I am walking, I HAVE to stop immediately, and when I stop and duck in a shady area, the pain immediately starts to alleviate until it is gone, but as soon as I start walking again, it is instantly right back. It brings me to tears sometimes as the pain is that intense. Does anyone else have this? I have diabetes also, however, this all started about 5 years before I was diagnosed with diabetes, and I had been previously checked for it but my blood sugar levels were completely normal.
Also, when this neuropathy comes over me my legs go from feeling pretty normal to feeling like they weigh a ton. I do have Fibromyalgia as well so they somehow go hand in hand when i am in the sun. It totally ruins my summers and I will never get used to it! Anyone else?
Hi Baybreeze,
I have seen a Neurologist but that was about 5 years ago so I know I am due. I need to get to the bottom of this and if there is nothing i can do about it then I have to just learn to live with it. I was hoping someone else may have the same thing that could help explain it to me. I asked my Rheumatologist about it and they just kind of blame it on the back or my diabetes. What is very strange about it though is that when I was just out of high school (about 35 years ago) I started having this very sensitive skin in my buttock and thigh area that would come and go off and on for the rest of my life, and gradually it went from very sensitive skin to tingly and then numbness and now when I get it.....it is numb before I realize that it is numb and then all of a sudden the pain is very deep and I have to sit or just get off my feet. I need to make an appointment with the Neurologist but have to find one first. Mine moved away. Has anyone ever had anything like this? I find my neuropathy or nerve pain is worse than most everything else I have experienced with the Lupus. I have frequent infections when it is active and I have had pneumonia several times and Hepatitis, asthma and Pleurosy and CNS Lupus, but I can't complain too much right now except for this nerve pain from the waist down......when I get outside in the sun...or the heat...whatever it is that causes it I wish it would just go away.
Hmmmm, it happens only when you're on your feet in the sun? Or does it also happen when your indoors & on your feet too long? I'm only asking b/c if it's only in your buttocks and legs and happens when standing too long even indoors, it could be a spinal issue, such as disc herniations or stenosis (something that could be impinging on lumbar or sacral nerves, causing those sensations).
Hi, Connie. I just saw Baybreeze's post. I have friends who fit into the categories she mentions & describe things akin to what you described.
Also---could sciatica be a possibility? I had many bouts of one-sided pain, down buttock & into back of thigh. Just horrible. I went to chiropractors, used ibuprofen OTC's & heat packs.
I hope you get relief from this soon. Best wishes, Vee
I have SLE and am extremely sensitive to the sun. One of the things that happens to me when I get in the sun is that my whole body breaks out in excruciating pain from neuropathy. If I am walking, I HAVE to stop immediately, and when I stop and duck in a shady area, the pain immediately starts to alleviate until it is gone, but as soon as I start walking again, it is instantly right back. It brings me to tears sometimes as the pain is that intense. Does anyone else have this? I have diabetes also, however, this all started about 5 years before I was diagnosed with diabetes, and I had been previously checked for it but my blood sugar levels were completely normal.
Also, when this neuropathy comes over me my legs go from feeling pretty normal to feeling like they weigh a ton. I do have Fibromyalgia as well so they somehow go hand in hand when i am in the sun. It totally ruins my summers and I will never get used to it! Anyone else?
Connie
I WAS DIAGNOSED W/ LUPUS ONE WEEK AGO AND KNOW EXACTLY WHAT YOU ARE TALKING ABOUT. FOR YRS. AFTER LAYING ON MY BACK IN A LOUNGE CHAIR SUNNING, I EVENTUALLY WOULD TURN OVER ON MY STOMACK AND THE PAIN WOULD TAKE AWAY MY BREATH AND I WOULD BALL UP IN THE FETAL POSITION LIKE MY SPINE WAS BEING RIPPED FROM MY BODY. AT OTHER TIMES JUST WALKING I FELT LIKE A HOT HUGE WEIGHT WAS ON MY LEGS RADIATING FROM MY HIPS UNABLE TO WALK .
Last edited by kinder0934; 05-26-2007 at 07:21 AM.
Reason: fORGOT MY NAME BARBIE
I can surely appreciate where you are coming from. Neuropathy is like an inflamation of the nerve. I have had them from the very beginning of my Lupus. It was the second thing to show up on my life with Lupus.
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