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Does anyone on here suffer from Fibromyalgia?

Discussion in 'Chronic Pain & Arthritis' started by Ave Maria, Aug 6, 2011.

  1. mama2one

    mama2one Well-Known Member

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    you're right, it takes a huge toll

    I'm so tired of being in pain with little energy & not being able to function like a normal human being

    it doesn't seem fair many days, does it?
    my daffodils (avatar) this year did cheer me...somewhat
     
    Last edited: Apr 24, 2021
  2. Hvizsgyak

    Hvizsgyak Member

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    Looking at God's beautiful creations (the ocean, the flowers, the trees, the people interacting with one another in a friendly way, the stars, and others things) does take my mind off of the pain too. Observing, thank the Lord, is not painful. My hope for you are many good, less painful, days with your beautiful daffodils. Thank you for your encouragement. God bless you.
     
  3. mama2one

    mama2one Well-Known Member

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    always been a side sleeper but lately, my 2 shoulders & 2 hips have too much pain to sleep on my sides

    try to sleep on back but it's hard for this here side sleeper!

    started taking tylenol pm few times a week but don't think it's a long term solution
    discovered biofreeze which helps pain but it wears off

    any sleeping tips?
     
    Last edited: Jun 5, 2021
  4. mmksparbud

    mmksparbud Well-Known Member

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    Are you taking any magnesium-?--malate is the one you need with most of it taken before bed. I've tried all sorts of stuff. I'm on Gabapentin, 800, at night. I think I will try taking it in the mornings. I don't sleep until then no matter what I do. It worked for about 5 nights on me before it changed and went back to not sleeping until daytime. It is inconvenient. I've tried several sleep meds, I did strange things on them so they're not a good idea for me. I got a bunch of teas that are supposed to help with sleep. That what I did with my stimulus check--LOL! Bought about a pound each of several teas---Lavender, Lemon Balm, hibiscus, chamomile....about 8 of them! I make a gallon of tea using them all, then I heat up a cup whenever I want one, or drink it iced. It's good. But, even though I started out taking just small cups, and went up from there, there really was no change. Oh, well, I have enough of the stuff to last me till I go! (I'm in hospice, at home)
    I wish I could offer you some help, but sooo sorry. Besides, what works on one, may do nothing for another. Keep trying, you might find something. Mattress is very important. Get the best you can afford, adjustable if you can. I used air mattresses for a long time---went through about 3-4 of them---I had 2 cats, and a dog---they loved them also! I had to buy a bunch of cheap bedspreads to cover the mattress real well and protect it from their nails. Then I got some money (inheritance) and were able to get 2 really great beds for us. Our bedroom was almost wall to wall bed--They were heaven for about 15 years---they have gone very bad now after my husband died. I don't have the money to replace it and I've developed sciatica pain and can only sleep in a reclining chair. I'm on methadone and morphine---hospice is better able to take care of our pain meds, that's been such a blessing. If you find something, let us know, it always nice to hear when someone has found some relief!
     
  5. Hvizsgyak

    Hvizsgyak Member

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    I know this might be expensive but do you have a adjustable bed? I have sleep apnea too but don't like or use a CPAP machine so I slept on my side alot. The worse my fibromyalgia got the harder it was to sleep on my side. My shoulders ached like crazy from work and it felt like my chest was folding in and I couldn't breath well. So with the adjustable bed, I can change the settings (legs higher or head and back higher) and find a comfortable position to sleep in on my back and even on my sides still.

    The adjustable bed that I have have a setting called zero-g and it places your head and back and legs in a position where you hardly feel the bed at all. It feels pretty good. Of course, after sleeping in that position for so many hours, I still have to change positions or rigor mortis starts setting in (just kidding, but the body does stiffen up where I need a crow bar to bend my legs again (sorry, just kidding about the crow bar too, but it does cross my mind to try it somedays)).

    Also, if you take cholesterol medicine that could cause alot of your pain in your ankles and wrists and hands. Don't try to get off it but mention it to your doctor
     
  6. bbbbbbb

    bbbbbbb Well-Known Member

    +10,556
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    Tylenol pm is only a short term fix. I have been using temazepam for fifteen years and it is still working regardless of what bed I use. The primary aspect of my sleep is pain management. I take 800 (I think) mg. of gabapentin four times a day and 60 mg. of fluoxetine twice a day which is keeping my pain under control.
     
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  7. mama2one

    mama2one Well-Known Member

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    been sleeping on air mattresses for maybe 4-5 yrs?
    gentler on my body- just got two new ones so if one blows....

    yrs ago did try the magnesium/malic acid for several mos but it did nothing

    now it's summer temps & I don't do well with summer/winter; feel somewhat better in spring/fall

    not on any meds whatsoever & haven't had physical in 11 yrs so don't have a Dr now
    cholesterol ck yrs ago, nurse said "don't u eat?" lol...mine was quite low as we were "almost" vegetarians then
    we're not beef eaters, fish once/wk, chicken once/mos so maybe I need more protein?

    tried to get a Dr before covid hit & kept getting turned down- guess Drs have all the pts they need
    haven't seen rheumatologist since yr diagnosed & his suggestion was move out west to lower humidity


    thanks for replies & hope for better health for everyone!
     
    Last edited: Jun 5, 2021
  8. bbbbbbb

    bbbbbbb Well-Known Member

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    You are welcome. I pray for all of us who endure the suffering of fibromyalgia.
     
  9. GirdYourLoins

    GirdYourLoins Well-Known Member

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    Being in the UK and having to rely on the NHS we dont get medication like the posts on here seem to indicate other countries do. There is one thing though that I found very effective to the point I was able to eliminate maybe 90% of the pain I was suffering. Its quite simply that all the pain I was suffering was from parts of my body that were getting cold while I was asleep. I now have to wrap myself up in a duvet, a thick one for winter and a thin one for summer. Its improtant it covers every part of meexcept to a degree my chest. If I sleep n my side I have to pull it up around my back and neck completely covering the shoulder on the bed or that shoulder will be very painful in the morning. I also have to cover the other shoulder, make sure my back is completely covered and my legs dont stick out or have any cold air getting in. Basically a cacoon.
     
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  10. Hvizsgyak

    Hvizsgyak Member

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    If you don't mind me asking, do you ever experience periods of weakness where you just have to sit and rest for a couple of hours? Also, if you miss a dosage of your gabapentin do you have some form of reaction? The reason I'm asking is because there are times when I am just worn out and I really haven't done anything significant to wear myself out except miss taking a dose of my gabapentin. I also take lipitor for my cholesterol which I've heard possibly might add to my aches and pains but I'm not sure if it would make me feel worn out.
     
  11. bbbbbbb

    bbbbbbb Well-Known Member

    +10,556
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    Weariness seems to be part and parcel of fibromyalgia. I think it has a lot to do with chronic sleep deprivation that is a result of insomnia. Although many of us do spend significant amounts of time "asleep" the sleep usually is not very deep and refreshing and we wake up tired and as the day wears on we become increasingly weary. That is certainly true with my pain levels. They are lowest in the morning when I get up but increase during the day until I finally hit the hay, to start the cycle over again.

    My sleep is actually quite decent now. Different things work for different people. I recommend asking your sleep doctor if you can manage something different to get better sleep. It was a trial-and-error process for me.
     
  12. mama2one

    mama2one Well-Known Member

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    @Hvizsgyak

    yes, lack of energy is tough
    I've coined phrase "exhausted beyond exhaust"

    last time visited zoo, rented electric scooter as zoo has hills; it was great to keep up with husband & child
     
    Last edited: Jun 7, 2021
  13. bbbbbbb

    bbbbbbb Well-Known Member

    +10,556
    Non-Denom
    It can be challenging. I just returned from a vacation to many of the National Parks and Monuments of the Southwest. My friend, who suffers from chronic pain as a result of an automobile accident, chided me multiple times for not accompanying him on hikes into the glorious scenery. Of course, I look and act as if I am in perfect health, but the reality is that I am permanently weary.
     
  14. mmksparbud

    mmksparbud Well-Known Member

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    Periods of weakness with 'Fibro are nit unusual. The gabapentin does noth8ng, that I know o9f, to either help or worsen them. I have forgotten to take a dose, 30 u twice a day, felt no different. I understood Gaba to be for pain, I did not experience any greeter pain when I forgot one dose. Now ever, 2 does I would think is when you would start feeling it. I've never skipped 2 dosees. Fibro weakness is not your usual type of weakness. I've been so tired that I was hesitant to go to sleep---I felt I would get too tired to keep breathing! Anything experienced with Fibro is of a greasier intensity than normal. We get hypersensitive to pain, a pinprick to anyone else, feels like a much bigger needle was used plus it was driven in with a hammer to us! An itch is so intense you feel like you are going to loose your mind , feel like your going to pull out your hair and run around screaming naked in the streets. I hate an itch! I have to bare down with my nails to the [point I almost draw blood in order to minimize the pain from the itch!
     
    Last edited: Jun 9, 2021 at 4:49 AM
  15. bbbbbbb

    bbbbbbb Well-Known Member

    +10,556
    Non-Denom
    I agree with you entirely. Gaba has no real effect on my weariness. I will add to the list of hypersensitivities that of odor, especially perfumes. I can easily tell when my neighbors have put a dryer sheet in their clothes dryer. The odor is really intense to me. Perfumes in public are a real problem for me.
     
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