View Full Version : burning
08-03-2009, 04:20 AM
hi just wanted to know does any have burning sensation in upper legs and is this related to lupus have been having this alot lately and is very uncomfortable seems to happen more at night when laying down.
08-06-2009, 08:03 AM
I get burning along my arms and legs. Since my rheumi has NO time to talk to me, I have researched this myself. I believe it is due to the neuropathy we get. Inflammation of the nerves, causing a burning sensation. Some patients take Neurontin/Gabapentin, but I do not. My daughter has MS and the Nuerontin has helped sometimes, but she is on massive doeses. She has the same burning senasations a lot.
08-06-2009, 10:46 AM
I dont get a burning sensation but I have gotten a numbness in my legs, which either way is uncomfortable, but maybe you should call your doctor. Im sorry you arent getting any rest from this. I hope this goes away soon.
08-10-2009, 03:20 PM
Funny, I posted about this recently. I get the burning sensations as well. Sometimes I feel like a heater is blasting on my feet from the inside. Or I have a patch on my inner left thigh that gets this heat sensation and then dissipates. Hmmmmm, so I am not alone?
08-10-2009, 03:32 PM
Me too..right now its my shoulder blade!! xxxxx
08-10-2009, 04:42 PM
Right there with you, kim. Sorry you are suffering. It's hips, legs and ankles for me.
08-11-2009, 03:39 AM
WOW! We all have so much in common! Mine is like Jana's. Hips, legs and ankles. It can get pretty intense at times.
Take care and best of luck,
08-16-2009, 09:09 PM
Anytime you have burning or shooting hot pain it's fibromyalgia which, incidentally, runs with Lupus. I have it everywhere from upper back to ribs, hips, lower back to buttocks to legs, ankles and feet.
Many doctors won't give you answers because they don't know what it is. A good rhuemy will know what it is and do a pressure point test. Check out Fibromyalgia for Patients and Families by Daniel J. Wallace.
Basically, Fibro sends pain signals to different parts of your body (it's rewired your body and sends the wrong (pain) signals out). Many doctors will tell patients "it's all in your head." If you hear that, run Forest run as fast as you can for another rheumy.
Everyone reacts differently to meds. Presently on Lyrica. It makes me want to puke 24/7 and feeling completely drugged out in the mornings. More tired than ever; although it has helped some members on the board. What may work for one, may not work for another.
Take care & God Bless,
08-17-2009, 01:25 PM
OMG i get this ALL the time! from my knees up into my lower back and stomach. I HATE it. Sometimes by itself, sometimes with an ache. It keeps me up at night because that is usually when it is the worst. I have to go see a neurologist and get a full muscle/nerve study done and get some neuropathic meds. Question though...aren't people with neuropathy supposed to be treated with steroids? My meds im on are listed below and aren't helping after a month and a half although I know it can take longer...Hope you guys start feeling better! *hugs* -Brittanee
08-17-2009, 01:46 PM
Yeah I get that down my spine my rheumy said it was not lupus related as lupus doesn't affect the back. He never mentioned fibromyalgia yet my personal trainer has and gave me some good gel to put on it which is kinda like Ben-gay gives a cooling sensation but not too much, the anti-inflammatory rheumy gave me has cut this back some.
08-17-2009, 11:36 PM
I went through nerve conduction studies and everything was normal. I was told it was not neuropathy; but fibromyalgia. Fibromyalgia for patients and families is in most libraries by Daniel J. Wallace. I have heard acupuncture is supposed to help; which is what I am going to try next.
Fibro is worse at night and extremely painful. I was placed on Flexerill which helped for 6 months until my body got used to it. Then I was given Soma 350generic for break away pain relief and, unfortunately, your body gets used to it as well. Vicodin only helped joint pain; nothing for fibro for me. Again, it may work for you.
I stopped the Flexeril, and I am now on generic Zanaflex 4 mg. (Tizanidine) x2 =8mg. It does help relax the muscles but again now I am having so much pain I can't get out of bed and put weight on my legs because of the intense pain. I recently slid down the side of my bed and crawled on my hands and knees to check on my 10 year old daughter watching her favorite cartoon in our living room. I have now been sent to a pain management doctor.
Cortisteroids do not help fibro are only generally help Lupus. I have heard of Arnica cream helping which is an herb and ordered it via ebay two days ago. I am also on a pain patch (Lidoderm) that numbs the area of pain (it helps my back sometimes). What may work for someone, may not for someone else. After two 1/2 years, I concluded that it's either being in pain all the time, or taking muscle relaxants, accupuncture, percoset, etc.
Take one day at a time. Enjoy all the things you can do now as sometimes life changes for a moment, day or a week.
08-28-2009, 11:15 AM
I dont get how it can be fibro when you have no tender points?? I just get the burning in my legs up into my back and sharp burning shooting pains that last seconds in random areas mostly my legs/feet. So again how can this be fibro?
09-27-2009, 11:34 PM
Hi Mommy of 1,
Some don't always test positive to the pressure point test. I know I did, as I as also told that "burning" and "shooting pains" are always associated with Fibromyalgia. I hope and pray they can find more about it as time goes by. I began having symptoms about 9 months after the dx of Lupus. Then 1.5 years, Sjogrens, and 2 3/4 years blood clotting issues all auto-immunes related to any other auto-immune. Apparently, once you have one, you have a tendency to pick up others.
Take one day at a time. One thing that helped is I asked my doctor or a rx for a "temperpedic like bed." My husband found it on Costco by Novafoam and it's the only bed I can sleep on. My hubby was upset after I slept on the coach for a month during Christmas time so he ordered the bed. If you have a RX, you can write it off as a medical expense.
I hope it gets better. Soma 350 seemsed to help for a while.
09-28-2009, 09:42 AM
thanks for the reply. i went to my rheumy and they are doing a skin biopsy to see if its my smaller nerves being affected since my emgs were normal. so it could still be neuropathy but i will ask about the fibro without tender points. thanks :) - Lupie Britt
09-29-2009, 08:29 PM
I have also had the Hot sensation in my legs, hands and feet. Mine is HOT to the touch even by someone elses hands. It last for hours or days. I have been so frustrated by this, I slept with ice packs in bed with me. I see my primary dr. next month, going to talk to him abt this. Don't see my rheumy until Dec. I am sorry you are all dealing with this, but at least I know I'm not alone now. hopefully we can all find out what is causing this...
Hang in there all!:wideeyed:
09-30-2009, 05:06 AM
i get the "hot to the touch" in my hands....they burn from the inside and also are hot to others that touch my hands. The other burning that i get is in the specific pressure points associated with fibromyalgia.
10-06-2009, 01:30 PM
my burning is also felt as hot to others and even i can feel it through my clothes. it also gives this kind of dotty light red rash appearance to my legs. walking makes it worse after it starts and i get the tingling with it almost every time if im laying down. eck! if it is peripheral neuropathy how is that treated in lupus? my dr said if i am still having the same symptoms in about 3 months i will be given pred. probably. does this help with the burning?
10-06-2009, 01:51 PM
My legs and feet feel numb, but not burning. Quite the opposite - they will feel freezing cold to the touch. My right leg gets much colder than the left. Anyone who touches me can feel the difference.
I've already had all of the nerve testing done - all normal. The weird thing was that while they were testing all of my nerves, I could really feel it in my arms and upper body and had a hard time relaxing for it. When the technician got to my legs, I didn't feel it at all, and I even took a nap. I think that this should have told them something, but the docs didn't seem too concerned.
Any thoughts or similar experiences?
10-06-2009, 03:05 PM
Here's some info on it, I hope this helps.
Systemic Lupus Erythematosus (Lupus)
The name "lupus" usually refers to the most common form, systemic lupus erythematosus. This disease is called systemic because it can affect many parts of the body. It is characterized by inflammation and damage to different tissues and organs with many symptoms including fatigue and fever, swollen or painfully inflamed joints, and skin rashes. Lupus may affect the kidneys, heart, lungs, blood and blood vessels, central nervous system and peripheral nerves. It may suddenly flare up and then retreat into remission.
SYMPTOMS AND SIGNS
(Not all symptoms and signs may be present.)
Loss of appetite, nausea, diarrhea
Rash across the face and nose
Raynaud's phenomenon (pale or purple fingers or toes from exposure to cold temperatures)
Skin ulcers inside mouth and on the tongue
Sensitivity to sun
Serositis (inflamed linings of organs such as the heart and lungs causing chest pain and difficulty breathing)
Pain, numbness and tingling in hands or feet
EVALUATION AND TESTS
(Not all evaluation and tests may be necessary.)
Nerve conduction velocity test
Antinuclear antibody (ANA) test
Blood tests (for presence of antinuclear [ANA] antibody and for sedimentation rate determination)
Biopsy of skin or kidney
TREATMENT AND THERAPY
(Not all treatments and therapies may be indicated.)
Treatment focuses on relieving pain by reducing inflammation, slowing joint and bone damage and improving the ability to function with the disease.
Rest and exercise programs
NSAIDs (aspirin, ibuprofen and Aleve®) to reduce joint inflammation and pain
COX-2 inhibitors (Celebrex®) for pain and inflammation
Antimalarial medication (hydroxychloroquine [Plaquenil®]) to suppress immune response
Corticosteroids (prednisone [Deltasone®], hydrocortisone, methlyprednisolone [Medrol®], dexamethasone [Decadron®, Hexadrol®]) to suppress inflammation
Immunosuppresive medications (azathioprine [Imuran®], cyclophosphamide [Cytoxan®, Neosar®] to slow or reduce immune response
Take safety measures to compensate for loss of sensation