Read if you want to feel better

Discussion in 'Fibromyalgia Main Forum' started by diva42597, Sep 1, 2006.

  1. diva42597

    diva42597 New Member

    I have been on and off this board for a few months now. I have found you all to be a very supportive, inspiring bunch! I wanted to share my experience with you all because it just might help your fibro symptoms and pain. It certainly has for me.

    I have been dealing with this disease for 6 years now. I was just officially diagnosed in March of this year. When I was diagnosed I was told by my doctor that for the rest of my life exercise and eating properly were going to be as important to my general health and wellbeing as breathing. I took him serious. I had been trying to exercise a few times a week and felt the bennefit but had difficulty because it caused even more pain when I exercised!

    My doctor told me to work up to exercising every day. I did so very slowly and VERY painfully in the beginning. It was excruciating at times, but I knew from periods of my life where I was able to exercise more that the bennefits would be worth it. It took me about a month to build up to four days a week. Once I was at 40 minutes of cardiovascular activity 4 times per week I could immidiately feel the difference in my levels of pain, the frequency of my "attacks" and the severity of the attacks.

    I still got severe spasms, but they were over in a matter of hours rather than days or even weeks. I also noticed a drastic change in my mood. A few months ago I was almost suicidal...no joke. Now, I am feeling content with my life and I know how to better deal with problems. The only thing that changed was the exercise and eating habbits!!!

    I am not on anti-depressants and no longer need to be. I also am not taking ANY medication. I am even able to fall asleep many nights without my tylenol pm...I was up to 16 tablets a night. I still have difficulty with sleep, but overall my sleep quality is much better.

    Currently, I exercise 6 times a week or more! I do 60 minutes of intense cardio and 30-45 minutes of weight training (four days a week). I have found working with weights has helped out quite a bit. I do a lot of work with my back and my abs because that's where the majority of my spasms occur. I am also on the Jenny Craig program right now for my diet. I have found it is easy for my busy lifestyle.

    With eating right, exercising and getting plenty of water my quality of life has improved ten fold. I felt it was my duty to share this experience with all of you. It is not by any means a cure, but it has helped me. Please understand that it takes several weeks to build yourself up to the point where I am at. It WILL be painful and cause additional spasms in the beginning. I stuck to walking two days a week to start out. I increased intensity very slowly. The other trick is that I joined a gym. For two reasons: First...I wanted access to equipment that would give me varying levels of intensity. Second...I wanted a financial reason not to back out after a few painful weeks.

    THE PAIN IN THE BEGINNING WILL SUBSIDE. My plea is that if your fibro is affecting the quality of your life try this solution. It has helped me to manage this disease. Movement is the key...if you don't move, you will lose your ability to do so. That is the nature of fibromyalgia. Try it for two months. If you haven't felt a difference go back to what you were doing. Just make sure you give it some time and have some faith. It works...I am living proof!

    Kristen
  2. jenn5

    jenn5 New Member

    I wanted to point out that this is for fms. Do not attempt if you have cfs. Intense excercise, and especially cardio can be very damaging if you have cfs.

    I'm all for it for those with fibromyalgia. Way to go on improving your health, Kristen.

    Jenn
  3. momshoaf

    momshoaf New Member

    It is great to hear that someone found their path back to good health. But as Jenn5 said in the following post, this may not be good for those with CFS.

    As I have posted elsewhere, I just had my lactic acid level tested BECAUSE for the last 9 years I always felt that type of burning sensation whenever I used any of my muscles-a terribly sick weakening feeling that takes over my whole body. Normal levels are 4.5-19.8, mine was 40.4 and that was NOT after exercising. all the activity I did prior to the blood draw was the effort to get there!!!! I guess my 40.4 is pretty out of whack because it wasn't even flagged as "high" but rather "ALERT". Can you imagine, if one could push pass the misery and really "exercise", one might have deadly levels of Lactic acid if the liver couldn't process it out fast enough???? (I think it is the liver that does that). My guess is, the horrible symptoms prevent me from pushing myself to that toxic level, ya know, self preservation.

    It is so hard to come to terms with NOT EXERCISING esp. since my symptoms began WHILE I was working out at my health club, weight lifting (back in 97). I was always diligent to go 3x a week plus keep an active lifestyle in general. For the most part, physical activity is a postive endeavor. This type A personality, overachiever, do everything to the Nth degree doesn't sit well with sitting around doing mostly nothing. UGGGGH! It drives me crazy!!!! by the way, I have 6 children---do you know how awkward it is to try and raise your children and provide a bountiful life experience for them to cherish when I am stuck in bed most hours of every day (9 yrs now)??? They have my love, yes, are they missing out on much young ones should experience? sadly that is a big YES. I do what I can to fill the gaps but it just isn't enough. Momshoaf
  4. Noahvale

    Noahvale New Member

    Hi,

    I wanted to say that if this is working for you that is great, but I use to be the type that worked out everyday, in fact my husband said I was anal about it...My doctor now says not to over exsert myself. Infact, he suggests walking about 15 minutes a few times a week at my own pace. FM is nothing to mess around with;I was devistated when I was told not to excersize like I had been, in fact I needed to slow down and smell the roses a little.

    I am happy that this working for you, but we all have to take close advise from our physicians and beware of anything that could put us in futher jepordy of our health.

    Take care Kristen, and I do hope your health improves for you.

    God Bless!

    Noahvale-- Kathy

  5. ANNXYZ

    ANNXYZ New Member

    who feel strenuous exercise is NOT good for those with viral infections ( probably most who have cfids ) .
    They theorize that the exercise may increase viral replication, and that is why we may FEEL sick as dogs AFTER the exercise . I think that was true in my case .

    For more info search : CFIDS Dr Martin Lerner
  6. momshoaf

    momshoaf New Member

    After reading so many posts it is obvious that these conditions/diseases/syndromes/WHATEVER you call them, is highly individualized. I think because the autonomic nervous system seems to be involved, it is much like the electrical system in our home and a circuit breaker. Each of us has a weak link along the system (google search the ANS and select images, you will see how complex the ANS is and how there can be so many combinations of "short circuited" systems and any combo of fuses can blow!
    Since the likelyhood of any one of us having the same combination of weak links, we all have to search out our own specific path back to health. It is important for us to all share our findings since some will tend to overlap BUT in order to reassure all those who feel defeated by not being able to adhere to some advise given, don't dispair. It only means that is not YOUR path to healing; KEEP SEARCHING--AND MOSTLY LISTEN TO YOUR OWN BODY, IF YOU LISTEN CLOSELY-forget what the doctors na-say, your body will not betray you! AS I have stated, the fact that exercise is definitely NOT something I should be doing irks me to no end, but what can I do? My body screams with lactic acid burn SHOUTING that it will shut down NOW if I don't cut it out (along with sudden drop in BP which tends to make the body want to become horizontal IMMEDIATELY--TIIIIMMMMBBBEEERRRR!!!).

    Now my lab results PROVE TO THE DOCTORS THAT MY "COMPLAINTS' (for the past 9 years) HAVE BEEN RIGHT ALL ALONG. While what I have pasted below might sound scary, it is a reminder that we must diligently seek OUR OWN recovery and not spend too much time beating ourselves up over what doesn't work for us...AND MOSTLY TO NOT BE DISCOURAGED BY UNINFORMED/APATHETIC (head-up-their- butts, "PROFESSIONALS"; time may be of the essence if there is any creedance in these findings.

    Here is a sobering study to put things into perspective:

    "The Misery Index by Hillary Johnson ImmuneSupport.com 04-25-2006
    Despite the government's stance and the disease's name, CFS has one of the highest morbidity rates (degrees of suffering) of any illness, rivaling the physical misery of advanced cardiac disease and cancer. Dr. Phillip Peterson, head of the infectious-diseases department at Minneapolis's county medical center, opened a CFS research clinic there in 1988. The average age of the clinic's patients was then 38, and 80% were women. "Roughly half the patients could walk only three blocks or less," Peterson says. He and his collaborators explored the "functional severity," or degree of disability CFS imposes, using the Medical Outcome Study, in which a score of 100 is "best health." They compared their patients' scores with those of healthy people and people who had suffered a heart attack or who had rheumatoid arthritis. Healthy people scored an average of 75, heart attack patients in the mid-40s and victims of rheumatoid arthritis slightly higher. Clinic patients scored, on average, 16.5, a level never before measured on the Medical Outcome Scale. University of Minnesota medical professor. Dr. Nicole Lurie had to redraw the scale to accommodate the clinic patients for a formal paper Peterson used on the subject. A 1991 study, published in the Journal of Clinical Psychiatry, compared the severity of CFS with that of multiple sclerosis, lupus, and Lyme disease and found CFS to involve significantly more debilitating fatigue. By Hillary Johnson. Excerpted from her article "The Invisible Epidemic," Working Woman Magazine, Dec. 1994. http://www.immunesupport.com/library/showarticle.cfm/ID/184"


    This is not meant to frighten anyone unnecessarily, it is just a heads up. WE HAVE TO BE RESPONSIBLE FOR LEARNING WHAT IS GOING ON. So far EVERYTHING that has been discovered to be significant/relevent enough for my doctors to take serious notice came about by MY FIGURING IT OUT MYSELF THEN PRESENTING MY FINDINGS TO THEM. They just cannot deny that my standing up causing my heart rate to race to 160bpm while my BP drop drops suddenly to 70/55 AND now my lactic acid serum is a staggering 40.4 from just walking up to the lab MEANS SOMETHING IS NOT RIGHT. They never listened to me when I "complained" that my body felt like it had lactic acid burn whenever I attempted simple physical tasks (shoot one doctor recently warned me NEVER to refer to my symptoms as lactic acid burn, but rather just to describe it as a burning sensation in my muscles or the doctors would not take me seriously); they never were concerned to check my vitals WHILE SYMPTOMATIC (when standing and exerting self)--EVEN THOUGH I BEGGED THEM TO-- when they saw that vitals were normal while sitting on the exam table DOING NOTHING!!!!!! (I wound up bringing in a home BP monitor we had recently purchased with my saved recordings and just had my doctor watch them----you wouldn't believe the change in attitude after they get a look at numbers like that!)--It even got me a handicap placard-of which I am tremedously grateful!

    We need to find a way to make them SEE what is going on; apparently they are so brainwashed to only rely on "lab" results (and even then some of them, especially hormonal like thyroid cna be misleading since "normal" is so vague and far reaching), then figure out which ones will show what is going on and demand these tests be ordered. IT IS OBVIOUS OUR DESCRIBING OUR SYMPTOMS O-N-L-Y convinces them we have psychological problems, can you relate????? How many of us have been referred to get counseling over and over again??? I WOULD BET MONEY IT IS 100% of everyone who reads this!

    The internet has been a God-send. I type in any key word that seems to relate to my situation, I read articles and find more key words to move on from there. I have 10-12 notebooks crammed with downloaded and printed articles. I WILL figure something out on my behalf. I urge all of you to do the same, SEEK AND YEAH SHALL FIND--that is a promise from the Man upstairs. What better guarrante is there than from God Almighty!
    The only thing non curable are the things we haven't found the answers tot YET. The good news is, they are all there for the finding.
    Momshoaf
  7. StephieBee

    StephieBee New Member

    I used to exercise 4-5 times a week...doing 45 min of cardio and then weights during times when I wasnt in a flare.

    I have always tried to push myself, so I would always end up pulling something, or injuring something...and as we all know this DD causes us to heal much slower. This would lead to me stopping my exercise regimine too many times.

    I too used to take alot of Tylenol PM before I was dx'd along with regular Tylenol during the day for the pain. This is VERY dangerous. I ended up with a drug induced hepatitis due to this. My liver was enlarged and my counts were off the chart. I would suggest to anyone that this is not a good idea.

    Anywho...when I did exercise, I felt better after I got over the initial pain from restarting activity. I used to be depressed and on AD...and I was able to go off them because of the exercise. I was also able to go off just about all my meds including ones for anxiety, and cut down pain meds drastically.

    If you are able to exercise it can help, but dont push yourself.

    Currently, I am in the middle of a bad flare, so I am finding it near impossible to even get to work, nevermind exercise unfortunatly. I do plan on getting back to the gym. And BTW, I do have CFIDS also. I just do not over-exert myself. My only advise to anyone thinking of exercising is to pace yourself...do light exercises. Never push yourself.

    Hugs,
    Stephanie
  8. IntuneJune

    IntuneJune New Member


    Kristen wrote: "Please understand that it takes several weeks to build yourself up to the point where I am at."

    From PERSONAL experience, and also working with students who come to me with all kinds of issues (I am a aquatics fitness instructor) your several week time line is incredible!!!!

    Those who cannot move, and hurt beyond belief when they do, cannot believe or understand your recovery. Congratulations, by the way!!!!

    And so many of us here, used to exercise routinely. I was the only jogger in my neighborhood thirty years ago..... and as far as I know, the only FMSer.

    I love your post, but, don't want others to be discouraged when their results are different from yours. My time line was measured in months/year rather than weeks.

    Good for you!
    Fondly, June