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Thread: burning

  1. #11
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    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.

    God Bless,

    Faith

  2. #12
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    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?
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  3. #13
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    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.

    Take care,

    Faith

  4. #14
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    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
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  5. #15
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    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!

  6. #16
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    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.
    Phyllis

    share a smile today

  7. #17
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    Default same here

    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?
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  8. #18
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    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?
    Marla

  9. #19
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    Here's some info on it, I hope this helps.
    Faith

    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.)

    Anemia
    Fatigue
    Fever
    Hair loss
    Headaches, seizures
    Kidney problems
    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)
    Swollen joints
    Swollen glands
    Pain, numbness and tingling in hands or feet
    EVALUATION AND TESTS
    (Not all evaluation and tests may be necessary.)

    Neurological exam
    Electromyography
    Nerve conduction velocity test
    Antinuclear antibody (ANA) test
    Blood tests (for presence of antinuclear [ANA] antibody and for sedimentation rate determination)
    Urine test
    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
    http://millercenter.uchicago.edu/lea...is/lupus.shtml

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