Each one of us reacts to our fibro in diffferent ways what is yours?

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Dec 3, 2010.

  1. rosemarie

    rosemarie Member

    My flares some times sneak up on me, some times it hits just as I haev gotten out of the pool at the gym, or I have played with my grandbabies, some times it is as simple as assisting my Mom with her needs , I feel that my fibro flares change from flare to flare, as no two are the same. I have had the worst stabbing, electrical shocking shooting pain in my butt cheek it lasts for just a few seconds but darn it burns badly.

    I had a rotten night last night my pain was much worse then usual, I hurt so badly I could not sleep so this am instead of going to bed like I sould have I kept dozing on my relciner , head bend over, headache, achey all over. Now I can't sleep and the muscle pain is back with a vengance, we have had a small storm system come thru so I ache more than usual..
    Are your flares the same? do you hurt in the same places all the times? What to you do when you can't sleep for nights, weeks months? I should be happy this year, as i have three new grandbabies ages 6 months , 8 weeks, and finally 6 weeks, 2 boy and one girl. I would love to sit and hold them and play with the oldest ones too. But I can't stand it when one starts screaching in a HIGH pitched scream, it sends me to the roof and I want to smack them but the crime is screaming mommy can deal with it. I Notice that I have days where I ache and ache all over, I don't sleep for weeks on end. I ache deep in my muscles , even deep inside my bones to the point that nothing helps not even a hot bath. It is really bad when your pain is so intense and no matter how HOT the water it , it does not get in to the deep achely bones and muscles. My wrist is hurting terriabley, it should as It was shattered over 6 yrs ago and one of the titaumim screws in loose adn moves causeing me pain. I am so tired of pain. I jsut want it to go awy, I want to fall alseep in my own bed , and sleep there all night. I hate my fibro, but it does me no good to hate it. I would like to know how you ddeal with your flares and what cause's them
  2. 3gs

    3gs New Member

    Hi Rosemarie
    Iam so sorry you are having a rough time. I stopped trying to figure out what causes a flare. Weather is huge,even a minor change and my body goes off the charts.

    Food,stress heck any more blinking can cause one!!!! I have 3 grandchildren and its getting less and less the amount of time with them. Like you am very noise,light etc sensitive. It really sucks.

    Understand the pain you are describing. one thing that does help is a rub for pain. wish I could bathe in it! Sleep its all over the place,mostly poor.

    One thing that really helped me is vit d3. Dealing with my flares veries-live with it,cry,scream,cuss,push thru it.

    Dont know if this helped but wanted to respond.
  3. ellikers

    ellikers New Member

    I'm so sorry you are dealing with all this right now.

    I think there are lots of reasons that we get flares, like was already mentioned ... many of them are basically some sort of stress on our bodies and it overloads us for some reason.

    I sometimes get them "randomly" (something happened I'm sure, but I don't necessarily know what) but most I can trace back to getting too little sleep, being stressed out or busy and not keeping up with my self-care/health routine.

    What I generally do is go to a list that I call my "pain plan". It's a list of all the things that can help me feel better and I do as many of them as I can ... it includes things like sore-no-more rub on trigger points (like the shooting pain you are mentioning near your butt), using essential oils (peppermint is supposed to interfere with out pain process), drinking lots of water and eating good, healthy foods, stretching (our bodies NEED to move, the less we move, the more locked up we'll get!), hot bathes, etc.

    From what I know about pain (and I'm learning a lot about it right now) our bodies need a multiple technique approach like that to get them rebalanced. And the more we avoid using parts of our bodies because of chronic pain, the more locked up and painful those areas will get .... it's like cementing that way of being into our bodies and they'll "forget" how to move and overcome pain signals.

    Books that helped me develop a pain plan:

    Managing Pain Before It Manages You
    Fibromyalgia and Chronic Myofascial Pain: A Survival Manual
    The Brain that Changes Itself (about changing our brains to heal)

    Informative newsletter about pain & the brain: http://neuroplastictransformation.com/node/216
  4. rosemarie

    rosemarie Member

    I take Vit D3 2000 mg daily, along with Vit B12 it is sublingual {it disolves under your tounge does't taste bad .} I also take magnesum daily too, I try to take tums 1000 mg as they have calseium {SP} in them. Then I take my scripts from my rehumy, there are 5 of them every thing from Soma, to Mscontin, MSIR, xanax,visteril. I find htat my pain gets eased some day but not others, Some days when I take a Soma I am out for the count and yet other times I am wide awake and stay that way.

    The Vit D3 helps but I can't explain how, I just know that when I misplaced my Vit.D3 2000 units. I kept getting a headache and my muscles ached more. I am trying to take my meds at a regular time so that I can go to sleep, Not working still can't sleep in my bed. I will doze off in the recliner but if I wake up to go to bed the walking in to the cooler room wakes me up and I can't just lay down and sleep. I will toss and turn till I wake up my hubby. So I get up and go back to the recliner. to sleep.

    I have done every thing from taking HOT baths, I have nights where teh pain is so deep in my bones and muscles that I try to get teh water as hot as possable but there is no way that the water temp at the highest I can stand does not reach in to the area's that have this deep pain.

    I wish that my meds would work the same way all the time , I just want to be able to sleep all night in my bed. I wanted to get a new bed called Intelligel but can't afford it. Even a mattress pad is over $500.00 so you can guess what a king sized bed would cost. MOre money than I have or will have in years. I have laid on these mattress's and almost fell alseep right there in the store It felt so great and I wanted to just close my eye's and sleep for hours but it does not look good for me to sleep at the store and the store is not ready for people doing that, Sleeping in the store. I have a mattress pad on the bed, that is a tempredic type and it does help but not enough.
    Well that 's my story adn I am sticking to it. Thanks for your thoughts.
  5. 3gs

    3gs New Member

    the toppers are less expensive ck costco. I bought a bed you can adjust like a hospital bed. have you considered that since you can sleep in recliner that maybe you need to try to elevate when in bed?
  6. eljulia

    eljulia New Member

    Hi Rosemarie! Dang, i feel your pain on this whole struggle!

    i went through the whole deal of having a pain doctor try me on a number of the biggy opiates, but they mostly caused me stomach trouble and changed my personality (and not for the better.) So i have opted for Vicodin for the bad days, and a low dose of Cymbalta that helps dampen the nervous system from overreacting. i've pretty much weaned myself off anything else, and have found that i'm no worse off than i was.

    My triggers seem to be weather changes and any sort of emotional upset, and the more i am upset the worse and longer the flare is. So i've had to learn a lot of better self-talk, which a great therapist has helped me with. If i can find a better way to look at things i do so much better physically with the pain.

    Also, stretches are very important--they don't have to be difficult to do, and you only need to start out with maybe 3 of them, but just be sure to stretch out the different parts of your body and move the joints. i also take the D3 and the Magnesium.

    As far as sleeping, i've purchased FibroSleep from Prohealth and it helps--i also take Trazadone for sleep, as it helps me get to sleep and stay asleep, and i can adjust the dose for times i'm having a harder time sleeping. i also use pillows to put my body in a more relaxed position for sleep, and have taught myself to sleep on my back, which is the most relaxed position with the least amount of pressure on any one part of me. i put a pillow behind my thighs just above the knees, and sometimes use pillows to rest my arms on more comfortably. My pain class taught me how to do some relaxation techniques, and i try to use those when going to sleep, and often at least once during the day. Getting my brain relaxed from the sensory overload i get from this fibro thing really helps me cope through the day.

    i'm with you on the "want it to all go away" thought--but if we're going to have the pain, we might as well make friends with it as much as we can and learn to honor it and take care of ourselves rather than fight it. i find for me the fighting it causes more stress and pain than recognizing it and trying to work with it. If i can tell myself, okay, i just need some quiet time right now, and then lay down, close my eyes, and do one of the relaxation exercises, it can really perk me back up. Just 20 or 30 minutes can make a huge difference.

    If you ask me, does all this work all the time? i'd have to say no, but honestly, it's all helped me manage better. Our brain is a powerful thing, and if we can get it in on the "let go of pain" idea it's amazing how the pain can be affected!

    Do you know some relaxation techniques? Some of my favorites are: laying with my pillows on my back i start at my toes and tighten my toes by pointing them up and holding then releasing, then down and holding and releasing, then stretching them out and holding and releasing. Then my whole foot, then my ankle-calf, then my knee, and so on, clear up to the head, tightening and releasing. when that's done i imagine myself laying with the sun coming up the bottom of my feet and over, and sweeping slowly up my body. there's a lovely warmth from the tightening, and you can carry it through your whole body by picturing the sunshine on you. A yoga instructor taught that in a class i took, and it's very effective. Another one is to again starting at the toes, i breathe slowly in telling myself "in with the cleansing, healing air" and slowly exhaling saying "and out with the pain." i imagine the breath pulling in from my toes into my feet, inhaling and exhaling a few times repeating the phrases in my head. Then i move up my body same as before, inhaling and exhaling into each part of my body, clear up to my head. The goal of these techniques is to completely engage your mind in this process of visualizing your pain leaving your body, so much so that every other troubling thought goes away and you are soley involved in this positive experience with letting all stress leave your body by your control. It takes practice to be able to let go of the rest of life and just be in that moment with your mind and body engaged, but it's so worth it.

    Thanks for letting me babble, (like you had a choice!haha!) but i've spent a lot of time working with this whole fibro thing and your question lets me talk about it. :)

    Hope there's something helpful in all of this.

  7. rosemarie

    rosemarie Member

    I wish that I still had my pain doctor, at least I got to see him once a month, my I see only 1 my rehmy once a year. I am nervvous as I think that my SSDI review is comming in the next year or so. Since I only see the rehumy once a year he is not really much help in letting them know that I still live in pain, that I am working out but this weather is getting to me. I have done some relaxation techniques and they do help. I just have to be calm enough to do them.
    My rehumy reduced teh dosages of my narcoitic pain meds with in a year of seeing him. Where when I applied for SSDI I was taking 5 100 mgs of Mscointin and now I take 2 100 mgs daily. I take up to four of the 30 mg MSIR daily, soma, xanax and visteral. That is it besides my vit D b12, calisum, mag, I try to get out of the house as often as I can , but lately we have had nasty weather foggy , bad air and i can't breathe when the air quaoity is bad. Thanks for all your suggestions and your concern. I wil write later when I am more awake and feel better
  8. eljulia

    eljulia New Member

    Do you have a primary care physician who knows how to do the point check on you, for the 18 pressure points? If you can get that documentation for your SSDI review it would be great. i found that those guys only cared about numbers they could measure!

    So did your pain reduce that the doc reduced your narcotic pain meds, or did he just decide to do that? For me the opiates just had too many side affects, but i can handle the occasional dose of Vicodin. i was just reading another discussion about meds or supplements for pain, and someone there talked about white willow bark and a number of other things i hadn't heard of. i may try it at least.

    hope you get feeling a bit better soon!

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