Hi everyone I have a new question for you. I have had Lupus for about a year and sometimes have a hard time articulating all my symptoms. I just realized the achy body feeling I have can best be described like having a sun burn. I just saw my Rhuemy so I won't get to talk to him again for 3 more months.
I feel it most when I lay down. My back and the backs of my legs feel like they are burning. If I get up and walk around it lessens. Is this nerve related? Could it be fibromyalgia? I don't think I have any tender points. Will plaquenil help?
I do plan to address this with my doc but would appreciate any input in the meantime. I feel this way everyday.
I have a burning feeling as well, but it doesn't feel like a sunburn, because it feels like the burn is from the tissues, under the skin. It's like a burning, ripping feeling, very painful. My rheumy thinks, it is from the Lupus,it's attacking my tissue.
I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).
Neuropathy. I have it too. It feels like the bottoms of my feet and the palms of my hands have been slapped really hard -- like a hot pain. And my skin feels sunburned at times. It also causes numbness in the two outside fingers of both hands as well as the tip of my nose. I take Neurontin for it, and it really helps. I only have to take 300 mg. once at night to keep it at bay. It stopped the burning pain, but I still have the numbness. It's not so bad I can't live with it though. When I go up on the does, I start to gain weight, so I keep it at 300. It helps me sleep too.
Is neuropathy progressive or can it calm down with Lupus medications? I also have tingling/vibrating sensations in my legs. My rheumatologist said at the last appt that he suspected it was just nerve irritation. I still have a few more months before plaquenil kicks in, maybe that will help...
It's interesting you say it feels like sunburn because thats how i describe the internal heat as well. To me it does feel like sunburn because i just radiate heat. I may not have a temperature but i feel my body is boiling. My husband can tell as soon as he gets into bed and he will say are you ok because he can feel the heat radiating off me without even touching me. This is a symptom i have had from the begining and as a classic cold person ( flanalette p'js and socks to bed kinda person ) this symptom was so unlike the old me. I don't know if it's nerve related it could very well be but i know i only started with this when i started getting sick. When i have a flare i know it's one because the heat comes back with vegence. My sister in law did ask me the other day day what it feels like and my reply was it feels like you have been sunburnt over your body and your skin is radiating heat...
Thanks for sharing this Nicole, it's so interesting to hear other people have this kind of symptom as well as i must admit i thought i was going insane. I have been on plaquenil but have since ceased that and just continue with the MTX. It does help to keep the heat at bay until i have a flare. Are you taking any medication?.
I get this burning sensation as well, but only in my feet. It's the strangest thing, but I only feel it when lying in bed. My labs are good and I don't have diabetes. In fact, I just had my glucose tested, and it's WNL, so I don't know that it's neuropathy.
I have Raynaud's in addition to SLE and SjS. Might this be related to Raynaud's?
Sam - Thanks for your reply. I also feel the heat internally. It seems like I have a fever but never do. I notice the burning on my skin or in my tissues if I put pressure on it especially. I am not sure if I have been out of a flare since this all started. I am taking plaquenil only. My doc doesn't want to do anything else since I don't have organ involvement. He is giving me a few more months and if my fatigue and nausea don't improve he wants to add quinacrine which is another anti malarial. Why did you stop taking plaquenil? Is methotrexate working? Are you feeling better now than when you were first diagnosed? This is a tough disease to figure out. Hearing stories from others helps so much
Bonus Mom - I wonder about Raynaud's. I have some early signs of it. It could be connected. I will ask my rheum at the next appt.
Jolynn- I really woder about neuropathy too. Guess I'll have to throw out all these ideas to my rheum and let him sort it out.
I did start on Plaquenil only but i didn't find it was givivng me much relief especially with the joint pain. I then started Methotrexate and while i started on a lower dose than i am currently on and it took a few weeks to help it made a big difference. I stopped taking the Plaquenil as it was giving me terrible stomach pains. I am feeling better then when i was diagnosed but some days are good and some days are bad. I still get varying symptoms and flares but i am learning to deal with it better. My joints still hurt daily but im used to it and it's not as bad as the begining. I don't have organ damage ( thank god ) and hopefully it will never get to that. I do find that when i do get sick it takes longer to get over it and i have had to stop the MTX to give my immune system a chance to try and do the right thing... I'm new to this site also and i have found that it is so good to hear how other people are coping with this illness. It is such a bizzare entity that we are dealing with. P.s i have just started to get the burning sensation in my feet also, have had tingling in the legs for quite awhile. I am seeing my Rheumy in about three weeks so will check it out. Doctors here at work say it is Neuropathy... Great !!!
Hope you get through this fatigue and nausea soon
I have the sunburn feeling quite a bit as well. Mine has a lot to do with my skin too. It gets really red and starts looking and feeling like a sunburn. I use Lidocaine spray from the drugstore on it. Aspirin helps calm the heat in my body. I have to be careful not to let it hurt my stomach though. I try to get the coated aspirin, but it does really help. Plaquenil, MTX, steroids.. nothing helps. I'm on a Fentanyl patch, Lortab, and Neurontin. Neurontin and pain medicine do help a lot. I hate having to take all of that, but I've come to terms with it. I just take the pills and forget it.
Although neuropathy is one possibility another is Fibromyalgia. Many Lupus patients have fibro as well and some days my fibro actually bothers me more than my Lupus. When my fibro is acting up it hurts to lean back in a chair, lean against anything or basically have anything touch my skin (even some clothes).
It might be something you want to ask your doctor about
Success is not final, failure is not fatal: it is the courage to continue that counts.