"FM sufferers just need to exercise" -- I'm fuming

Discussion in 'Fibromyalgia Main Forum' started by jkd7058, Jul 10, 2003.

  1. jkd7058

    jkd7058 New Member

    I was so angry when I heard this "news" report. I had heard that a doctor was going to talk about FM and what can be done to stop it. What it ended up being was a chiropractor telling everyone that if FM sufferes would just work out more they'd feel a lot better.

    Jez, I heard this on a day that I was hurting so badly from just walking a couple of blocks. (I used to walk from 3 to 6+ miles a day before this DD) I'd give just about anything to be able to exercise like I used to -- I was even a competitive body builder not that long ago.

    I don't know if it's happening in your city, but it seems that a lot of chiropractors are "jumping on the band wagon" of the "cash cow" we call fibromyalgia. They know we will try just about anything to get our lives back and they are cashing in on it. (can you say cha-ching!!) Now - before you jump on me and tell me how great chiropractors are, let me say that MOST of them are great. I go to a great one, I used to work for one of the best and I was engaged to one. But there are some who should not be practicing.

    It was obvious to me that the doctor on this news report knew very little about what we feel. He just knew that if he "sounded like" he knew what he was talking about he'd be getting new patients looking for his majic exercise cure.

    I've gotten "junk mail" from 3 other chiropractors in my area who each have THE answer. One was trying to sell a brace that would make you stand-up straighter and that would take care of all our whoas.

  2. jkd7058

    jkd7058 New Member

    My friend called to tell me she had see this "news" report and if I would only work out I'd be fine. AHHHHHHHHHH!!!!!

    Now I'm going to have to try harder to educate my friends. This is one of those DDs that doesn't really show -- so they think if I look fine I must BE fine. And if I don't exercise, I must not WANT to get well.
  3. IntuneJune

    IntuneJune New Member

    So many of us on the board (it is the majority?) will give a history of being very active in the past, ie "I USED to walk 4-5 miles a day, I USED to run 2 miles a day, I USED to bike 40 miles a week." so for ANYONE to say, you JUST need to get out and walk some is ONE BIG slap in the face.

    Personally, right before this last set back four years ago, I was walking 3-4 miles at a clip every other day,also swam. (Diagnosed 20 years ago) Then each time I went out I could go less and less. Got to the point I could not walk down the end of my road, 700 feet. Also could not swim.

    Something had to occur BEFORE I could move. Myofascial release was the answer for me.

    If our muscles are paralyzed with pain, something has to "intervene" (can't think of an appropriate word) to allow us to move our muscles. -- This is how I felt anyway.

    Yes, I do believe in exercise. Because my muscles are toned my "activities of daily living" are much easier for me to perform therefore take less "energy" and I do not tire as much.

    Unfortunately we are more complicated than the average "Joe" and a blanket statement "FMers JUST need to exercise shows lack of understaning of our entire problem/syndrome.

    I had someone say to me when trying to convince me I could handle a very very busy social week, "Oh, if you just stay relaxed and take a nap!" I love this person, but I wanted to cry -- I will never be "understood" by family and friends and am trying to lessen my expectations of people in my life.

    So it goes....Fondly, June

  4. cindye

    cindye New Member

    My daughter got that line too and I am sure everyone with fibro has heard it at one time or another. I used to tell them, "she would love to exercise if she could find the energy to get out the door". They just do not understand! We found a chiro whose mother had fibro so he was on a mission to find something to help his Mom and read EVERYTHING he could find. He uses the guai protocol and along with massage therephy, changed my daughter's life. Now that most of the pain is gone and she has more energy, she does feel better when she works out at the gym - again you have to find a trainer who understands what you are going thru so they will not work you too hard and will understand when you have a day that you cannot do the whole routine. Good luck!
  5. JannyW

    JannyW New Member

    >>>>I don't know if it's happening in your city, but it seems that a lot of chiropractors are "jumping on the band wagon" of the "cash cow" we call fibromyalgia<<<<

    Oh yeah, there's one who runs an ad in The Charlotte Observer. He has a 24/7 free recorded message, and if memory serves he even has a book.

    Doesn't it just make you want to toilet-paper their offices??

    Jan ^v^
  6. IntuneJune

    IntuneJune New Member

    ///////EDIT: There had been a post right above this one mentioning another simple "cure" program for FMer's of eating fresh fruits and veggies which has been deleted--when I revisted this thread and saw it was gone, my post made no sense. Just trying to explain myself least you all think June is sitting here with a Vodka!/////////

    Oh!!!! Grazing "cures" fibro!!!!

    The bunnies have been keeping this one a secret!!! June
    [This Message was Edited on 07/12/2003]
  7. IntuneJune

    IntuneJune New Member

    Come to think of it, there is a small herd of cows right down the road, think I will join them for lunch. June
  8. billiegail

    billiegail New Member

    When I first found out that I might have FM, I started checking around and reading alot on the internet. I was refered to a woman's site (have no idea who she is now or the site) and so I checked it out. She is a FM sufferer and was down and out and in pain 24/7 and had gained alot of weight.
    Well, she went to some support groups and did alot of research and decided that support groups were just pity parties and that the only way to beat FM was to exercise.
    She swears that her symptoms are next to gone and she looks like a super model now!
    I thought, Oh great! I can just exercise and beat this dreaded DD!
    But... She is just fooling herself or she does not have FM because I do alot of exercises, swimming, walking, tennis, and all that and still.... I am in pain.
    Needless to say, I found this site shortly after that and have learned alot more than she ever taught me.
    She needs to come here and read some of these post and then go back to her doctor and let them know that she CAN'T possibly have FM and it be in the advanced stages as she said it was.
    Anyway, that is all the venting I shall do for one day, I think...
  9. baby-bear

    baby-bear New Member

    garden pulling weeds and johnson grass. I also vacuumed the house which is designed where the carpet is not much to vacuum. Today I'm paying for it!!!!!!!!!!!! I could not even get out of bed without major pain and fatigue. In fact, the pain woke me up. People that are uneducated or have no clue should just keep their trap shut!!!!!!!!! Your right about the "cash cow!!!" Most everybody these days are out for a fast buck.. Pamela
  10. klarry

    klarry New Member

    I would love to follow all the advice that says exercise is a fibromyalgia patient's best friend, but in truth I can do very little without causing tremendous pain. Once I did a small trimming job in the yard, and became so stiff and sore that my husband had to dress me. Since I can't take many medications, I have learned to protect myself. I do do simple floor exercises to strengthen my back, and I am working up to 30 minutes on a recumbent bike at low resistance, adding one minute a day at my doctor's recommendation. I wish people would stop advising us to exercise to raise our serotonin levels. I don't know about you, but I don't feel very happy when I ache all over.
  11. jkd7058

    jkd7058 New Member

    But since I'm new to this DD I wanted to "put it our there" and see if you all felt the same way.

    There was a great radio show a few months ago here is St. Louis. The Doctor (forget his name) and a woman who has another site on the web gave outstanding advise to both sufferes and family and friends. I was unable to listen to it because I was at work, but my wonderful parents recorded for me. I ended up listening to it while stuck in bed with a BIG flair-up. I was having a pitty-party, knowing no one understood, then here were these two saying exactly how I felt. I actually cried because it felt so good to be validated.

    The one thing they said when asked the question "Isn't this just the "disease of the hour" and aren't these people (meaning us) just lazy?" was so benificial to me. They said "NO these people are NOT lazy. They are usually a Type-A personality, they are givers, they seldom take time for themselves, before this disease hit they usually worked out harder than any of us." I just cried and cried hearing someone say that!
  12. bonwar

    bonwar New Member

    I totally agree that exercise helps. I do belly dancing which is gentle and emotionally uplifting. It has made me feel much better...BUT...it certainly isn't a CURE. It's like improving your diet or easing stress or anything like that. As a friend says you try to find "health in sickness".

  13. Patti2

    Patti2 New Member

    I have to make a chose of working and paying my bills & mortage or exercise. I do try to walk some a few times a week, but further than that. I will go to the rec center in my city and the water is wonderful, you can do so much and not get quite as sore from it. Exercising strengthens the muscles and tissue around the trigger points. I wish I could do more, I wish that they would find a cure..Sleep is my best friend after I do any exercising I nap soundly!!
    Give me 20 sit-ups
    I want 20 crunchs
    30 pull-up...
    I'm lucky to grocery shop!
    good luck!!
  14. gbean

    gbean New Member

    How can people reccommend exercise as a cure when marathon runners come down with fibro/cfs and can't get out of bed?
    I used to be a cross country runner-tennis plater-weight lifter and aerobics fiend-
    Athletes get this disease-not exercisimg is not the cause!
  15. retrop

    retrop New Member

    Hi, I'm new here, and I felt so much better just reading this thread!

    I, too, did 50 minutes of aerobics, 5 times a week until I suddenly got FM after a terrible bout with a virus. I hear the "exercise thing" all the time. I tried everything. Even a couple stretches a day would lay me up after a few days. The dread of pain following exercise is based on real experience, not lack of trying, for all of us!!!!

    As a last resort, after trying EVERYTHING else, I submitted to physical therapy, three times a week. I thought it was going to kill me, but how would I know till I tried? It would make me feel better..... for about 20 minutes, when I'd arrive home and try to get out of the car!!! Stiff as a board! After three months, they were about to cut me loose, as I was in MORE pain after all the "gentle" stretching and mild exercise of three months. Then I was told that one of the therapists did Myofascial release, and I begged them to sign me up. He had done my initial session, and it was the only time I felt good afterwards. I thought it was just a gentle thing for "first-timers"! But no! it is a real therapy. After one session I felt much of the stiffness gone, and after two it was gone completely. Unfortunately, it has not yet helped some major muscle issues, or eliminated all the generalized aching from the FM. It also has not allowed the endurance needed for, say a trip to the grocery store (the worst!) What it has done, is remove the bands of stiffness that seem to affect large spans across muscles. If you have been out of condition more than a month, it is worth a try to break up some of the tissue that doesn't allow the muscles to extend, no matter how you try.

    After three years of sleeping on a mushy couch curled up in the fetal position, I can now sleep on a proper bed. I could never stretch out before, or lie straight, my back hurt so badly! Now I sleep properly, and the couch hurts me! This sure seems like a big stride forward for me.

    I thought I'd mention it because there was a thread a few days ago about MFR, and someone up above mentioned it had helped. It remains to be seen how long lasting this is for me. All I know it gave me about 80% relief of about 50% of my pain. So far. As you all know, that is some deal of relief! I have to say, the therapist said it doesn't work for everyone. I suppose it matters how much of the fascia is hardened. I also want to say that this is especially helpful if you have had any abdominal surgery. Scar tissue can really screw up muscle movement. Sometimes a cearsarian section ends up giving you knee problems or headaches! Who knew!

    Good luck!
  16. winterqueen1

    winterqueen1 New Member

    That's all I hear about, if you exercise your going to feel better. Like you I keep thinking, my god I can hardly walk, how could I exercise. I'm just about willing to try anything and two weeks ago I started walking 1 mile a day. So far, my legs and back have hurt worse than ever and I'm totally exhausted. Where's the energy boost that's suppose to go along with this pain killing, feel better program. BS is what I say!!!!!! There may be help for some with FMS and exercise, but so far I've seen nothing that has improved my life.
  17. jadibeler

    jadibeler New Member

    I just have to excercise, I'm going to go buy a gun! I couldn't believe my husband actually said it last night! I get all the excercise I can handle just trying to keep the house.

    When I was 15 I attended a counselor-in-training program at a Girl Scout camp in the Pocono Mts. Being from the lowlands, this was my first experience with a mountain, and the unit I was assigned to was up on top of it! I was there all summer, we went up and down that mountain several times a day. I was in just as much agony on the last day as I was on the first. If excercise is going to help, it doesn't hurt as much after a while; you don't feel no benefit or feel worse! I relate that story to anyone who is persistent.

    I will say that when I painted for a woodcarver - he chainsaw carved pelicans out of fairly green pine logs about 3 feet high and some of them were a good 6 inches in diameter - I did get slowly stronger. I was even able to "make a muscle". But that took nearly a year and I was never able to do anything but paint, and fall into bed at 3:00. Periodically, I'd have to just stay in bed. But this was upper body excercise only, moving the pelicans from one table to another. Anything that involves my whole body and particulary my legs is out of the question.

    Shows like the one you mention are our worst enemy! Here we are trying to educate friends & family - begging them to believe us - and then they watch bull like this and think it vindicates them! Then we have to start all over again.

  18. retrop

    retrop New Member

    I'm really shocked that this "lie" is so huge. How did that happen? Is it just repeating some "bigwig" who said on TV that exercise helped? It is so untrue, and so many patients must be reporting that it is cruel and terrible, how can this advice not be corrected after so long? We have enough prejudice without adding this to our humiliation. Please, if you are badly affected by exercise, let your caregiver know, in no uncertain terms that it is baloney. After a while they might catch on. I am so sick of people treating me like I"M the liar.
  19. lone-wolf

    lone-wolf New Member

    to some of these people that know it all. Been working on my family for years to help them understand where I am coming from. Some woman starts spouting how she has FM and makes herself exercise even though it hurts, she just pushes past the pain and feels so much better after... dah? Then how come she has to push past the pain everytime??? There is no pushing past the pain for me.. IT JUST GETS WORSE. If I can exercise I do what I can, if I push I PAY... my muscles especially in my legs will throb like a toothache ALL NIGHT.

    My doctor went to a FM seminar, I was encouraged and looked forward to hearing what she learned... came back and said I needed to exercise and no opiods for pain, JUST GREAT, so much for the HELPFUL seminar that was given to I don't know how many doctors and nurses. Fortunately, she listened to me and my experience with exercise and I still have a 'ration' of Vicoprophen.

    Chiroprator, was good on adjustments bad on advice! Said that when I could 'laugh' about my ex husband and my divorce I would be well..... almost slugged him. Have had FM/CFS for 30 years, was married to ex for fourteen of the later end of the 30 years.... DAH!

    I think we have to listen to our bodies and do what is best for us. I am not lazy and deal with a good dose of guilt for all that I can not do. I don't need anyone adding to my battle.

  20. karne

    karne New Member

    I came here to find info about exercising. I went to my dr yesterday, because my pain is so bad. I'm already taking 50 mg Vioxx everyday, which does help some...as in I can definitely tell a difference when I don't take it. But it only helps to a certain point, and many days I'm in crying pain. So, I go to my dr who so far has been very good to work with. She tells me I'll feel much better if I just start exercising. Walk a half hour everyday, do some head to toe stretching exercises and swim at least 2 days a week. I tell her everytime I try to do that kind of exercise I'm in total pain. She says, Yes, it will be bad at first, but you'll feel better.

    Ok...so, I went and bought a lap pass for the pool. I do love to swim. And a book on stretching exercises. I did my first ones tonight. IT felt great while doing it, stretching my muscles. 20 min later I'm in tears again with the pain. How am I going to do this everyday, waiting for the 'good part' to begin? karne