What helps FM the most for you?

Discussion in 'Fibromyalgia Main Forum' started by Marta608, Mar 9, 2007.

  1. Marta608

    Marta608 Member

    Hello all,

    I've had CFS for 13 years and been on this board quite awhile but I haven't had a lot of FM before now. I've been volunteering at the local animal shelter a few hours a week and it really knocks me out but I've been able to take a few days and feel "CFS-lite normal" again. I even thought I was doing better!

    What advice can you give me at this point? What one or two non-drug therapies have you found that help you the most with FM?

    Does massage helps you? What about chiropractic? Massage made the CFS worse for several days when I tried it. Chiropractic seemed to help until last week and then I was very sick the next day from that, I assume, too.

    What do you think would cause someone to suddenly have it after 13 years? Can an increase in activity cause it, do you think? A new cat?!?!?

    Thanks for your replies,

    Marta
    [This Message was Edited on 03/09/2007]
  2. Shalala

    Shalala New Member

    but can be very expensive. Stretching exercises help. I have always been afraid to go to a chiropractor because I have bad luck picking DRs obviously.

    You did not say where you are in pain?

    Take care :)
  3. Marta608

    Marta608 Member

    Oh, lordy, don't tell me it's not a general thing....

    I feel as if someone has stomped on my hands and wrists as well as, oddly, on the flesh of my upper arms. I've had a bit of arthritis in my knees and left hip but those areas, too, seem worse than ever. My shoulder joints are more achy too. The former pain could be managed by Tylenol or aspirin but not this. And now I hobble when I get up from a chair.

    YOW! My sincerest sympathies to all of you who live with this every day. CFS is bad but this pain with accompanying added fatigue is the pits!

    Marta



    [This Message was Edited on 03/09/2007]
  4. JLH

    JLH New Member

    NON-DRUG THERAPIES:

    * Sleeping with my CPAP machine and oxygen.

    * Warm-water aerobic exercise--like the arthritis classes offered at many places that have pools.

    * Steaming hot showers (but I have to sit on a shower stool because back problems prevent me from standing).

    * My best friend, the heating pad!

    * (Chiropractic care DID NOT help me one bit.)



    DRUG THERAPIES:

    * Cymbalta

    * Neurotin

    * Zanaflex (taken one hour prior to bedtime)
  5. PVLady

    PVLady New Member

    Not too many "non drug" therapies help me except rest.

    If I am in pain - Soma, a muscle relaxant.

    Tylenol Gel Caps - 2 day.

    Subutex - a mild opiate you dissolve under tongue. I have been on for 2 years.

    Massage is nice if I am really stiff.

    My only activity is walking. Any other movements will cause a flare - eg. carrying heavy grocery bags, twisting my body.

    To keep my mind sane, I go to the movies alot. When the academy awards came up, I had seen almost every movie.

    I don't know what would bring it on suddenly - my condition developed gradually over the years -

    It began in my early 20's and I am now 56. Some days I think I am yet to come down with Lupus or MS. I definitely have something wrong.

    I cannot handle stress at all. I have a business but work from home 99.9% of the time.

    Aspercream muscle cream - it really helps me.



  6. SusanEU

    SusanEU New Member

    Massage didn't do much for me.

    Vitamins that help me are coral calcium, Vit D, and magnesium.

    Definitely the Effexor, Lorazepam and avoiding stress as much as possible. I am soooooo much better than 1 year ago.

    I am so fortunate that I work from home and can sleep in - the morning is awful for me.

    Good Luck, Marta

    Sue in Ontario
  7. jole

    jole Member

    My pain is mostly in my upper back, neck, forearms, thighs, wrists and hands. It has started lately in my lower back also, which I don't understand. A nice long warm shower is the best for me. Would love to take a bath, but can't always get out by myself:)

    I also have some Sombra pain relieving gel that helps better than Ben Gay, Aspircream, etc. The other thing that is wonderful are the ThermaCare heat wraps that can be bought in WalMart, etc. They work great for my upper back/neck area, and are nice 'n warm. I'm always freezing cold, so feel great.

    The hobbling around when you stand up after sitting certainly sounds familiar! I looked 90 every day when I was still working, and hated it. My feet and legs would hurt so bad, and were always very weak. This seems to be better for me lately.

    As for the fatigue, I go to bed by 10, get up at 7, take my pills and return to bed 'till around 11 a.m. My mornings are wasted, but I do feel better in the evenings.

    Hope you find some relief. This pain and fatigue is horrible, and no one understands unless they've been here. I'm soooo glad summer is on its way. That's when I feel the best!!!!

    Friends - Jole
  8. FibroPainSufferer

    FibroPainSufferer New Member

    I would be lost without them! If I don’t take them every 4 hours, my body sure reminds me!!! But as for over the counter, I think Biofreeze & O24 can help some. Just a heads up though, don’t use the O24 & go out in public, it has a really strong smell. But if you're staying at home then that's the one I'd recommended.

    As for how it suddenly happened, did something really stressful recently happen in your life? I had a serious & VERY stressful thing happen with my marriage & the pain began right after that & never went away.

    I hope you feel better!!! I’ve never heard of animals being the cause, they usually help us to relax, at least my little kitty does.

    Best Wishes!!!
  9. mrdad

    mrdad New Member

    How interesting! I have a Friend Marta that stops by the

    Porch almost daily and she likewise has a sweet Kitty that

    she loves dearly.

    Anyway, I have "progressed" in a similar manner to you!

    Have gone from CFS to added pain in shoulders, wrists,

    joints etc. Don't know if I'm going into FM but believe

    it to be a possibility. I understand that Ibuprofen is

    better than Asprin for pain as it directs against inflam-

    mation.(??) What's it gonna be like when we get OLD

    Marta. Well, I have a few more mos. before I have to be

    concerned. Give Sophie a kiss for me!! (Front end, OK)?

    JOE
    [This Message was Edited on 03/09/2007]
  10. kriket

    kriket New Member


    *SLEEP
    *MASSAGE THERAPY
    *JACUZZI TUB/EPSOM SALT SOAKS
    *CHIROPRACTIC ADJUSTMENTS
    *MEDICATION



    Kriket

    [This Message was Edited on 03/09/2007]
  11. Marta608

    Marta608 Member

    It seems that most of you favor heat and rub-in creams; some like massage, some don't. Hmmmm.

    Jlh, I don't have sleep apnea so I don't need the CPAP but I have gotten very cozy with my heating pad.

    But I wonder if the heat situation is the same for FM as for regular muscle strain; that is, that we should always use moist heat, never dry. My chiro is a fanatic about the heat wraps sold in stores because they're dry heat and, he says, can make the problem worse. This is for a strain so I don't know if it applies to FM. As soon as I don't have to do anything for a few days just in case, I'll go see him and ask.

    PVlady, do you mean two Tylenol gel caps a day or twice a day? And yes, stress is The Worst.

    Susan EU, you sleep IN??? Lemme tell you about this cat that Joe was mentioning..... I don't call her Early Riser for nothing. Joe's volunteered to take her but he keeps moving and forgetting to send me his new address. Meanwhile, you take the same vitamins I take so I'm OK there.

    Jole, I made a note of Sombra gel. Can it be purchased in a drug store?

    FibroPainSufferer (we need a nickname for you. lol) As I said, I've been working at the shelter for the past three months AND have taken in this sweet cat who won't leave me alone or be quiet past 5 a.m. I've tried shutting her out of the bedroom at 5 but then I'm w i d e awake. Also, the shelter has door closers on the doors to the kitten and cat rooms that are brutally hard to open so the small children can't get in. (They now also have a sign on each door saying "No young children allowed without an adult".) We got some STRONG little children around here but the doors sure do make the volunteers hurt! Do you suppose? I didn't think I was there often enough...... maybe.

    Joe, I told Sophie that you sent her a kiss. I'm too mad at her right now to give it to her. Sorry to hear you have some fun new symptoms too.

    Kriket, interesting that massage and chiro helps you. Boy, if I could stand to see it one more time, I'd write that we sure are all different!

    jaminhealth, I know what you mean about being a former ball of energy. Maybe we used it all up?

    Froggyfog, thank you for the kind words but if this pain continues I won't be able to work at the shelter anymore. That will make me very angry - which I also know isn't good for me - because I don't want to lose yet one more thing to this **%%## illness!

    I wish you, us! all a pain-free day.

    Marta
  12. Mini4Me

    Mini4Me New Member

    nothing.
    Mini
  13. Daisys

    Daisys Member

    You and I are similar this that way--I had FM so lightly that I told a new doctor a few years ago that I didn't have it anymore. She checked the points and I do, but I could ignore the level of achiness that I had.

    This last year, that changed. Now I understand what others are talking about! I'm on a low dose of oxycodone, as needed. Well, at first I only needed it twice a week or so, and now, it's worse and I'm gutting it out until the next appt. I want to discuss what to do from now out.

    What may have caused the escallation?
    Menopause (I'm totally through it now)
    A new med that didn't suit (off it now)
    Trying AV's (I'm off, and will proceed more slowly)
    Myofascial Pain syndrome. I have this, and don't know when I got it, but it does complicate things. It isn't FM, it's knots that refer pain in certain predictable areas.

    What helps me:
    Massage by someone who understands MPS and FM, because treating one can make the other worse.

    Acupuncture. Both massage and acupuncture help noticably for a couple of days, and since I've missed both lately, I wonder if they keep the overall level down.

    Malic acid, or Magnesium malate (they may be the same thing)

    Sam-e (Helps tremendously with joint pain)

    Hot baths with epsom salt (2 cups), baking soda (1 cup), and 1/4 cup hydrogen peroxide.

    Hoping the oxycodone isn't in the mix long term, but if the pain gets too high, I lose sleep, and get stiffer, so it does good to stop the cycle.
  14. Marta608

    Marta608 Member

    Oh, Mini. And you've tried so hard, haven't you? My heart aches for you. And what a wonderful picture of your parents on your profile. They look like poster people for their generation. Hang in there.

    Daisys, ProHealth's Fibralgia with malic acid and magnesium is helpful to me for awhile, but then it seemed to keep me awake. I know, it seems impossible but I react so strangly to everything. I haven't tried Sam-E. I have a cupboard full of supplements with a few out of each bottle and I hate to think of adding one more.... But!

    I've found that when the pain is the worst, if I take a Xanax, even if I don't feel anxious, it helps some so this pain must have to do with tension in the body. Duh?

    I have an appointment with my "doctor" (she's a marvelous PA and I much prefer her to the doctor) on Tuesday. She'll probably tell me to quit opening the doors to the kitten and cat rooms.

    Thanks for all your posts. It's so helpful to have people know what you're talking about, doesn't it.

    Marta
  15. Stefanie

    Stefanie New Member

    Hi all -

    This is a neat message board and very helpful. I have used motrin for my fibromyalgia and that seemed to help alot better than other over the counter meds. Aspirin has also helped - but adding ultram has helped it too. Elavil - I take at night and I notice the next day not as much pain.
    Isn't it strange so many women are suffering with Fibromyalgia ? The same with thyroid diseases ?

    Stefanie
  16. NyroFan

    NyroFan New Member

    Marta:

    My best bet is a heating pad. Perhaps if you have one you might give it more of a chance.

    Other than that, I plan on trying a TENS machine.


    I know this is not much help, but who knows? Maybe it will help.

    You take care,

    nyrofan
  17. EllenComstock

    EllenComstock New Member

    So sorry you are feeling the effects of FMS in addition to the CFS. Who knows why we developed FMS and other health problems. If we knew the answer to that, we would certainly be close to a cure.

    I know you asked what helps us without using meds, but when my doctor put me on morphine three years ago, it really helped the sharp, shooting pains I was having. I'm not pain-free by any means and I still have the dull, achy pains, especially in my neck and shoulders.

    Here's what else I do:

    -I put ice packs on my most painful areas when I lay down for my daily nap or at bedtime. For me it helps numb the area.
    -Sometimes I use a heating pad, but for me cold works best.
    -Exercise. It's hard to do when you are hurting and worn
    out, but it has helped me. I also in a water therapy
    class two afternoons a week. They keep the water really
    warm and that feels great while I'm in the pool, but
    unfortunately doesn't last when I get out.
    -Rest and pacing myself. I feel better when I take my
    afternoon nap. It's something I must do now. Without it
    I can't get through the day.
    -Reducing stress as much as possible.
    -I make it a point to eat healthy everyday.

    Massages feel great (only the gentle ones-no deep tissue
    massages for those of us with FMS), but unfortunately, the good feeling stopped not long after the massage was over.

    That's it for me. Take care.

    Ellen

    P.S. Maybe you remember that I'm a big animal lover, too, and have three cats. I do believe that animals are great therapy. Mine take a nap with me everyday! That's great that you are volunteering at the animal shelter, but maybe those heavy doors are causing you some pain? Also, what kinds of things are you doing at the shelter? These might be causing you pain as well.
  18. Marta608

    Marta608 Member

    I'm so glad Stephanie brought this thread up again because there are some good additions and I've discovered more to share.

    I was at my wit's end with pain yesterday (not far to go) and went to see my chiro. My doc had told me the day before to "just push through".

    Sometimes, if the chiro does a lot of adjusting, I get sick the next day so I was reluctant. He adjusted my neck which he said was in bad shape and he asked me how much sugar I was eating........... Uhhhhhhhhhhhhhh. A week and a half ago I had been lured into badness at the grocery store by shopping just at lunchtime. I bought an 8" strawberry-rhubarb pie and I ate the WHOLE thing. NOT all at once; over a period of a week and a half but talk about sugar! He said that people with FM cannot eat simple sugars, period.

    The other thing he reminded me of is that dry heat makes pain worse and I've been huddled on my heating pad at night. He says that inflamation causes pain and that dry heat activates the histimines in the body. While the heat feels good at the moment, it's actually making us worse. Like Ellen says, he says to use ice. How to ice one's upper back is more than I know how to do and besides, I get chills without any ice but I'll quit using the heating pad and see how I do. Nyrofan, you might want to try it too.

    He also has begun doing muscle testing and I'm skeptical about that. But I was too miserable to argue and once we found a leg that wasn't too painful for pushing on, he tested me. It didn't take long and he said that I had a problem with aluminium in my body. I'd been told this years ago by an Amish practitioner too.

    Still, I kinda blew it off - until I remembered that the pie had been in an aluminium pie tin! Do you suppose?

    So. No sugar or simple carbs like white flour, rice, pasta and no aluminium. After hearing this years ago, I now rarely eat anything from an aluminium can but I do use an antiperspirant and they have aluminium in them. I need to weed out my pans too. Teflon can't be good for us either.

    Another things that's helping me is taking 50,000 i.u. of D a week for six weeks. This is by prescription. You must have your blood tested first and keep track of your levels, but I think those of us who live in the midwest especially can benefit from a lot of D. It helps very much with depression.

    Thank you all so much for taking the time and energy to write on this subject. Ellen, always good to hear from a fellow Michiganian. Ask your doc about D!

    Marta