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Thread: Nerve pain. Fibromyalgia too?

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    Question Nerve pain. Fibromyalgia too?

    Hi peeps!
    It's been a while since I visited.
    I'm pretty much at the end of my tether to be honest. So they diagnosed me with lupus with kidney involvement. This is all old news. I'm not a newbie, been ill 23 years now! My vasculitis is under control at last. I'm on Cellcept, Plaquenil, Amitryptaline, steroids, and calcium.
    The Cellcept I started in Dec 2013 hit me like a brick but I think I'm tolerating it now. It hasn't changed how I feel though Nothing seems to do that.
    I am in almost constant pain. I think it's nerve pain. It's like I have flu...that sensitive skin, the twang as you move, aching glands, everything is sore and achy.
    So I've been looking up stuff and I wonder if I have fibromyalgia which might explain why treatments aren't making me FEEL better? It's like little internal shooting pains everywhere intermittently.
    I know I'm depressed, but I've had a horrible year. The cellcept started just before a major infection under my tooth which had me in bed for months and I got flu this year which was another few months. I used to be able to push myself to get the things done that had to be done even when I felt rough. 'Limits' change when there are few choices (I have 5 children!) and I could always push myself when there was an immediate need, but since the Cellcept I always feel ill and I can't judge what I'm capable of anymore. I feel like I always have to do anything feeling pretty much at my limit to start with and now my energy suddenly is gone and I'm stranded in the car/cafe/friends sofa until I can physically drag myself home.
    I'm so unhappy. I have so much. My family are great, supportive, helpful, caring, understanding, but circumstances force me to let everyone down time and time again. The pain is driving me insane. It's not crippling, it just hurts all the time.
    I used to be able to just tick along doing my own little thing, but I'm just defeated by this constant struggle. When I feel better physically this distress just disappears, but that's not very often and the constancy of this is just soul destroying.
    Ok, pity party...sorry!
    So my question is Might I have fibro as well? And Would a drug like Pregabalin help?

    Sorry for the downer. I don't talk about this often...it's hard to really look at it.
    Jayniex

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    it is an unfortunate fact ...... many of us have fibro as well.

    it is my belief ... people who live with there nerves switched on all the time, sometime will have nerve overload.
    to have our skin on fire and sore all the time ... it makes sense that the nerves have problems.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    Jaynie (03-18-2015)

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    Can I ask what you take for the nerve pain Steve?

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    Hi Jaynie,
    I have had CFS, FMS for over 20 years. Unless you are in a fibro flare you rarely ache everywhere at once. Nor is it shooting pain. It is more deep or sharp (not throbbing) but always in soft tissue. I did develop nerve pain as well once sciatica 40 yrs ago while pregnant and then last yr shooting nerve pain in lower R leg. I spent 6 mons but finally have it under control (it tries to fire just a tiny bit now and then) with supplements. Have been on pain meds for abt 10 yrs. So unless I am in a flare I have pain every day but it is manageable (I have dealt with it so long I am used to constant low levels). Gently exercise helps if not in flare, then just stretching. If in any type of flare I take care of myself and ask for help if I need it - the only way to recover quickly. I meditate, lower the stress, eat sensibly, remove the trigger foods etc.
    I wish you felt better. I felt like I was going crazy when I had my lupus rash (still unsure what type I am afraid b/c of description it might have been discoid) b/c it itched so severely.
    I try to do something nice for myself everyday. I learn my limits, this is a hard one and remember when I set out to not forget to save energy for the return trip. Cancel things, I have to do this constantly. I just so no. I have learned to finally take care of me.
    Feel better soon,
    Heron

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    Jaynie (03-18-2015)

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    Thanks
    It's like a twang. Like a painful shiver in some joints, skin, like when you gave flu and your skin is sensitive, or shingles maybe?

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    Shingles yes if it is in one area, in the beginning stages can feel like that. But by 2 days you should have an outbreak on site (although if on Plaquenil and like me it seems to stop shingles)
    Maybe you should have rhuemy check out soon. People w/FM discribe their pain using different words so it may be FM. Have you tried epsom soak warm not hot? ALso for me if it is FM pain localized a cooling topical pain reliever works wonders. Although heat pad not on gel treated skin though - go figure?
    Also FM is very related to pressure systems. I am having a lot of problems since yesterday - verdict - it will rain in a day or two.
    Going to go out and not get some sun.....still unsure if have to put on sunblock after 4pm?
    Heron

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    Sorry for the brief statement! My tablet was running out of oomph!
    It's hard to describe pain isn't it! I've never had shingles but I'm guessing it's nerve pain, so similar. It's not all over at the same time. It's just not limited to one place. It's a bit like a burn type pain when it's bad in certain areas of skin. Sometimes it's deeper in the skin but still in the skin, like a bruise that hurts to touch. If it's bad it hurts to lie on it which is a drag because it tends to be on my thighs and upper arms.
    When it's internal it's like a painful tingling in my back, neck, face...not necessarily all at once. It hurts with impact. I guess that's because it jiggles the muscles and my clothes rub the skin. So it feels like flu.
    I don't know that I can describe it any better. I tend to say I feel fluey and shivery.
    Rheumy didn't seem to understand what kind of pain I meant.


    I get weather related joint pains too! So do my kids lol. We compare notes! My understanding of sun sensitivity is that if you have any sensitivity, sun cream should be a daily thing on exposed areas whether you are inside or not. I guess it depends on degrees of sensitivity, but I use a facial moisturiser with a factor 30 in it and I don't go in the sun at all if I can help it. Such a drag! And I hate sticky sun cream. I get a more expensive once a day one when the sun comes out...its Britain, so not a huge problem for me!

    In relation to your earlier post, I've limited everything. I barely do anything at all anymore and it's completely demoralising me, so I'm working on balance. Because I always feel pretty unwell I've learned to do things in that state, but because I'm at my limit so often getting home again is hit and miss. If I didnt go out unless I felt well, I wouldn't go out.
    It looks like the meds are controlling me clinically, but I still feel so very poorly. I'm hoping they cut down my Cellcept to 1500mg twice a day. I'm sure that stuff is too much for my system at that dosage.
    Thanks for the healthy wishes....
    Jayniex

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    Yes balance so important, knowing your limits.
    Could it be a reaction to something your taking? Shingles wouldn't appear in so many places like you are describing. It may be nerve pain but it doesn't sound like shingles. Just my opinion but who knows.
    I have learned to write any unusual pain etc down and when they occur for later reference.
    Okay you have nice night.
    Heron

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    Jaynie ..
    there are a few medications that are suitable.

    I take Panadol osteo, I use it as a constant daily medication.
    I have friends who found lyrica works well for them, but it did nothing for me.
    also low dose depression medication has been proven effective for many people.

    I am happy to discuss any of these further if you wish, but I recommend asking your medical practitioner if they are suitable for you before starting them.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

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    Hi!
    Heron, I don't think I have shingles, I was trying to describe my pain, sorry for any confusion.
    Steve, I take paracetamol as required. I some times take it three times a day. Is that ok? I also take a low dose of Amitryptaline (30mg), maybe that's not low...it Clearly isn't high enough to be treating any depression!

    Luckily, today I am too exhausted to leave the sofa so no difficult decisions about struggling through my day!

    #AlwaysAnUpside
    Jayniex

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