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  1. #1
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    Fibromyalgia and cycling:

    I was diagnosed with Fibro. I was prescribed all kinds of meds... which I don't take. All of my joints hurt and my muscles feel like they're on fire. I was sent to physical therapy and found that the only thing that worked was the stationary bike. So I went on a strick diet (holistic) and started riding again and I am starting to defeat this. I hope this may be of value to someone.......plus it's way more fun PT.

  2. #2
    Light-Weight by Design Pi}{ie's Avatar
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    I have a type of arthritis that is very similair to RA. I find though I at times struggle more than other riders my excercise routines have really helped slow the progression of my joint disease down. I do have to medicate now before exercise but I enjoy it and the freedoms it brings. I truly believe most things can be drastically helped with propper diet and exercise. Get a road bike join us for a century . You'll have a blast.

    Basically you are the only one slowing yourself down is what I want you to know. I did m first century last fall, I've done 5ks, and this year I'll do my first 10k, my first triathlon, more 5ks, and 1-2 centuries . I'm stubborn and I love life, live it to the fullest you only get 1.
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  3. #3
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    I plan on working on my endurance, so I can ride the rails to trails from Pgh, Pa. to Washington D.C..I can feel the difference since I started riding again. I get a little stronger every day. I still have the burning sensation and the pain, but I can feel myself getting stronger. It's good to hear that you're doing the same. It seems we're on the same page. HAPPY TRAILS TO YOU

    Congrats on your achievments.

  4. #4
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    Quote Originally Posted by aural exciter View Post
    I was diagnosed with Fibro. I was prescribed all kinds of meds... which I don't take.
    Your joints and muscles hurt and you don't take the meds you were prescribed? Why?

  5. #5
    Bicycle Repair Man !!! Sixty Fiver's Avatar
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    mehhem - Because sometimes the drugs the doctor gives you doesn't do anything at all ?

    Fibromyalgia is very difficult to treat.

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    Quote Originally Posted by Sixty Fiver View Post
    mehhem - Because sometimes the drugs the doctor gives you doesn't do anything at all ?

    Fibromyalgia is very difficult to treat.
    Then I'd see a new doctor til you find drugs that do work.

  7. #7
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    All the drugs with the exception of aleve or ibuprophen are psych drugs. I've been a musician all of my life and I can't perform on them. They take away your emotion. I know people who took them and quit for the same reasons and I know people who don't mind them. I've heard every theory to what causes this, from it's a mental thing, a stressful event or lack of sleep, etc. I've had this for over 20 yrs. and just got diagnosed in sept.. I choose to fight this with positive power from the universe and a never say die attitude. I had a long ride today, didn't measure the miles but did a lot of hills here in Pgh. and I got the most beautiful high from within. I hated to put the bike away. I had a jones to ride even more.

  8. #8
    Senior Member rodrigaj's Avatar
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    Quote Originally Posted by aural exciter View Post
    All the drugs with the exception of aleve or ibuprophen are psych drugs. I've been a musician all of my life and I can't perform on them. They take away your emotion. I know people who took them and quit for the same reasons and I know people who don't mind them. I've heard every theory to what causes this, from it's a mental thing, a stressful event or lack of sleep, etc. I've had this for over 20 yrs. and just got diagnosed in sept.. I choose to fight this with positive power from the universe and a never say die attitude. I had a long ride today, didn't measure the miles but did a lot of hills here in Pgh. and I got the most beautiful high from within. I hated to put the bike away. I had a jones to ride even more.
    Positive power from the universe???

  9. #9
    Senior Member AnthonyG's Avatar
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    Have you heard of Dr Mercola? See his website, http://www.mercola.com/ and subscribe to his free newsletter. Its very useful and then you can also search his site for articles on Fibromyalgia. As a disclosure he does sell products on his website but I don't buy anything from him.

    You could also check out what the Weston A Price Foundation has to say on Fibromyalgia. http://www.westonaprice.org/

    Anthony

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    Yes I've heard of DR. Mercola. I get an Informative email from him a couple of times a week. I save
    a lot of his stuff. His products are very expensive. His take on Vit D is very good. I haven't had a cold or the flu since I increased my Vit D intake. He'll get political too. He was endorsing Ron Paul.

  11. #11
    Bicycle Repair Man !!! Sixty Fiver's Avatar
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    Quote Originally Posted by mehhem View Post
    Then I'd see a new doctor til you find drugs that do work.
    Do you work for Pfizer ?

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    Senior Member AnthonyG's Avatar
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    Quote Originally Posted by aural exciter View Post
    Yes I've heard of DR. Mercola. I get an Informative email from him a couple of times a week. I save
    a lot of his stuff. His products are very expensive. His take on Vit D is very good. I haven't had a cold or the flu since I increased my Vit D intake. He'll get political too. He was endorsing Ron Paul.
    Yes Dr Mercola is a great resource. Its good that he will admit that he's wrong from time to time and he will change his recommendations when better evidence comes along. This is the promise of science. That it WILL change its views/recommendations in the face of better evidence but unfortunately some people in high places in the world of science actively prohibit this from taking place fearing that if science keeps changing its recommendations we won't have faith in it anymore.

    Anthony

  13. #13
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    I'm waiting for the FDA to try and take over the vitamins and minerals and make you have a prescription to get them. You'll have to go to the doctor to get the script. I don't think they can they can do that with herbs.

  14. #14
    Its Freakin HammerTime!!! C_Heath's Avatar
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    Fibro (imo) is the hypocondriacts deasease. I hurt, my wife hurts, its called getting older. This society thinks there is a pill for everything. Good job on not taking the drugs. Fibro is in your head and on your docs wallet I mean mind.

    Flame away.
    Quote Originally Posted by rousseau View Post
    I don't like any other exercise or sports, really.
    ....

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    Quote Originally Posted by C_Heath View Post
    Good job on not taking the drugs. Fibro is in your head and on your docs wallet I mean mind.

    Flame away.
    So what is your explanation for the chronic pain? I don't have any so I can't imagine what it would be like. I know I get cranky when I injure something but I've always managed to recover to a state of no pain.

    Saying the pain is in someone's head is a bit of a useless statement. Of course it's in their head, that's where all the pain sensations go. It doesn't really help someone deal with their pain though.

  16. #16
    Senior Member AnthonyG's Avatar
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    Quote Originally Posted by C_Heath View Post
    Fibro (imo) is the hypocondriacts deasease. I hurt, my wife hurts, its called getting older. This society thinks there is a pill for everything. Good job on not taking the drugs. Fibro is in your head and on your docs wallet I mean mind.

    Flame away.
    There is no such thing as hypochondria. I assume that's what you mean because your spellings USCWAP.

    To call someone a hypochondriac is that act of a true believer insulting a non-believer. See when a doctor says there is nothing wrong with you, you are supposed to go "There is nothing wrong with me. I'm cured. Thanks Doc".

    There is a dominant faith in the western world that our allopathic medical model is the best the world has ever seen and will ever see. If it says that nothing is wrong with you then nothing is wrong with you and no debate will be entered into. To challenge this belief is only inviting yourself to be derided as a hypochondriac.

    If someone truly believes that they are sick then they are sick. Now this may not mean that a doctor should give them a script for the latest wonder drug that they think they need I will agree there but if you honestly think your sick then your sick.

    Anthony

  17. #17
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    I have a whole tupperware (whatever it's called) filled with wonder drugs and I won't take them. They block the nerves so you don't have pain, but they also block the nerves in your brain, so that you are like a zombie. I have gotten far greater relief from riding. When I'm done riding I have this great mental and physical sensation or euphoria. I don't want to quit riding. To me this is great medicine. I'm not a hypochondriac. I have swollen glands in my armpits and pain that keeps me up all night. Stinging and burning muscles and joint pain where I can't even comb my hair. I had this for almost 20 yrs before they figured out what it was. I believe that I am already cured just waiting to defeat this. All I can say is returning to riding is a godsend for me and all you guys and gals on this forum. Being on this forum and interacting with all of you is good medicine.
    Last edited by aural exciter; 03-12-09 at 02:35 AM.

  18. #18
    Light-Weight by Design Pi}{ie's Avatar
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    Quote Originally Posted by C_Heath View Post
    Fibro (imo) is the hypocondriacts deasease. I hurt, my wife hurts, its called getting older. This society thinks there is a pill for everything. Good job on not taking the drugs. Fibro is in your head and on your docs wallet I mean mind.

    Flame away.
    As someone who knows 2 people closely with fibro: one old and one young. I find this to be a really sad comment. Do you know there are now standard tests for fibro? I've been tested myself(I didnt have fibro my pain is truly centered in the joints), there are 22 pressure points and you have to have more than half to have to be considered a fibromalgia patient. Plus you have to have chronic fatigue, and sleep problems. The 22 points do not corrolate with joints, or places where ligaments/tendons meet. They are also not locations where nerve endings are met. They are in multiple places as fibro patients have wide spread pain of the muscular system. That pain causes joint stiffness etc. A patient with fibro also has to have been ruled out from a number of conditions. There is also a drug protocol on the market for fibro patients, the most responsive drug is Lyrica. I reccomend she try that if nothing else works for her.

    Of course according to you my arthritis is probably in my head too right? That only took 3 years for a top rheumatologist to figure out why my joints were consistantly pissed. I have negative antigens, I have 1 mri and 1 xray showing the slow moving ******* in my back/pelvis only slightly. However my hands, feet, and knees currently scan clean yet they currently cause me the most issues. My bowel disorder has never been doccumented to have this type of arthritis go chronic like it has in my case, and it rarely is associated with this type. I also have the rarer type of IBD arthritis that is caused by RA genes, and typically goes to full blown RA eventually without antigens but only in chronic IBD patients mine is undercontrol by diet. 2 months ago my dr after 3+ months of me battling chronic exhuastion and pain that did not respond to steroids decided that my arthritis had moved to the full blown stage. They put me on a full protocol to not just reduce pain but to at this point stop my body from snacking on my joints. This is something I avoided for the last 2 years since full diagnosis knowing I eventually would have no choice on.

    So the pain is not in her head its real, and that pain causes depression etc. I know because the pain I had put me in the **** hole for several weeks. I can sympathize with her, and I hope that through exercise she finds some relief. Bottom line chronic pain is debilitating no matter the form, and its people who want to say thats in your head that slow down finding the cause and fixing it. No one should be told they dont feel what they feel. Their bodies are telling them something is wrong. Its not always a pill that fixes it either, sometimes its a combo of things. Being active helps reduce inflamation, and muscle fatigue over time. It also teaches the body how to use oxygen more effectively, and releases endorphins. Plus she'll be leaner and less weight means less pressure on whats hurting not matter the cause.
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  19. #19
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    Hi Pixie, I don't let anything people say get to me. Just because I don't complain and go about life like a normal person, many think I'm just looking for pity or an easy way to get out of doing things. I've been dealing with this for 20 yrs. I just got used to the symptoms being around. I have CFS, IBS, brain fog, memory loss on top off all the pain, burning muscles, numb fingers and toes and bad themostat to regulate my body temp. I am a guitarist by trade and the AC in the summer freezes me to the point where I can't feel my strings. It is frustrating, but I think the cycling is a Godsend.

  20. #20
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    c_heath,
    you missed your calling in life! There are some sayings I would like to share with you. WAG- wild a@@ guess, SWAG- sophisticated wild a@@ guess and then there is yours, DAG-DUMB A@@ GUESS!
    Until you endure the pain of fibro, you should keep your dumb opinions to yourself.

  21. #21
    just another gosling Carbonfiberboy's Avatar
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    Quote Originally Posted by Pi**{ie View Post
    As someone who knows 2 people closely with fibro: one old and one young. I find this to be a really sad comment. Do you know there are now standard tests for fibro? I've been tested myself(I didnt have fibro my pain is truly centered in the joints), there are 22 pressure points and you have to have more than half to have to be considered a fibromalgia patient. Plus you have to have chronic fatigue, and sleep problems. The 22 points do not corrolate with joints, or places where ligaments/tendons meet. They are also not locations where nerve endings are met. They are in multiple places as fibro patients have wide spread pain of the muscular system. That pain causes joint stiffness etc. A patient with fibro also has to have been ruled out from a number of conditions. There is also a drug protocol on the market for fibro patients, the most responsive drug is Lyrica. I reccomend she try that if nothing else works for her.

    Of course according to you my arthritis is probably in my head too right? That only took 3 years for a top rheumatologist to figure out why my joints were consistantly pissed. I have negative antigens, I have 1 mri and 1 xray showing the slow moving ******* in my back/pelvis only slightly. However my hands, feet, and knees currently scan clean yet they currently cause me the most issues. My bowel disorder has never been doccumented to have this type of arthritis go chronic like it has in my case, and it rarely is associated with this type. I also have the rarer type of IBD arthritis that is caused by RA genes, and typically goes to full blown RA eventually without antigens but only in chronic IBD patients mine is undercontrol by diet. 2 months ago my dr after 3+ months of me battling chronic exhuastion and pain that did not respond to steroids decided that my arthritis had moved to the full blown stage. They put me on a full protocol to not just reduce pain but to at this point stop my body from snacking on my joints. This is something I avoided for the last 2 years since full diagnosis knowing I eventually would have no choice on.

    So the pain is not in her head its real, and that pain causes depression etc. I know because the pain I had put me in the **** hole for several weeks. I can sympathize with her, and I hope that through exercise she finds some relief. Bottom line chronic pain is debilitating no matter the form, and its people who want to say thats in your head that slow down finding the cause and fixing it. No one should be told they dont feel what they feel. Their bodies are telling them something is wrong. Its not always a pill that fixes it either, sometimes its a combo of things. Being active helps reduce inflamation, and muscle fatigue over time. It also teaches the body how to use oxygen more effectively, and releases endorphins. Plus she'll be leaner and less weight means less pressure on whats hurting not matter the cause.
    I have a close cycling friend with advanced RA. She has completely cut out gluten (wheat) and dairy. I'm not a fan of that - most folks do that because it's a fad - but it has really helped her. She also does the full advanced medical thing and that's the only reason she can ride. Actually, she's out right now, getting her ankles replaced. One can ride with two fused ankles, but not walk.

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