home
RSS
March 29th, 2010
07:00 PM ET

Even a little activity helps fibromyalgia pain

By Val Willingham
CNN Medical Producer

Short bursts of activity can help ease the discomfort of fibromyalgia, a condition associated with long-term pain and tender joints, according to researchers from the Johns Hopkins University School of Medicine.

Approximately 10 million Americans suffer from the condition, according to the National Fibromyalgia Association. The condition has been linked to chronic fatigue, morning stiffness, sleep problems, and constant headaches.

The study looked at 84 minimally active adults with fibromyalgia. The patients were randomly put into two groups; either the “Lifestyle Physical Activity'” (LPA) group or the Fibromyalgia Education (FME) group. LPA involves moderate-intensity physical activity based around everyday life such as taking the stairs instead of using an elevator, gardening and walking. In this study, participants were taught to perform LPA intense enough to cause heavy breathing, but not so vigorous that they could not hold a conversation. In the FME group, participants only received information and support about their fibromyalgia, but no activity plan.

Seventy-three of the 84 participants completed the 12-week trial. The LPA group increased average daily steps by 54 percent compared with the FME group. The LPA group also reported significantly less movement problems and less pain than those in the non-active group. However, when both groups were given a six-minute walk test, there were no differences between the groups when it came to decreasing fatigue, depression, body mass index, or tenderness.

Kevin Fontaine, lead author of the study and a professor with the division of Rheumatology at Johns Hopkins University School of Medicine, said even a little movement helps. "The nature of fibromyalgia's symptoms, the body pain and fatigue, make it hard for people with this malady to participate in traditional exercise," explains Fontaine. "We've shown that LPA can help them to get at least a little more physically active, and that this seems to help improve their symptoms."

The study appears in the recent open access journal of Arthritis Research and Therapy.

Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.


soundoff (100 Responses)
  1. Jannon

    I have read all these comments posted on this blog, and I am relieved. Relived to know that there are those of you who have taken the words right out of my mouth! I was "diagnosed" 8 years ago, when I was sick with "a virus" for many months. Then, in 2005, I was in a terrible car accident, crushing both my ankles and my color was broke in half. Thats when FM REALLY kicked in. I have never been able to explain exactly how I feel to anyone, not even a Dr., because it varies from day to day. My mother calls it "Travelingmyalgia"...yes, we've made it a word in my household. I have a very understanding family, but I sometimes wonder if they really "get me". I have more days than bad, my memory and concentration are shot. I have to make lists to stay on task. I agree with Donna, swimming helps me tremendously and I can do more of it at one time.

    I had a Dr., who continued to see me for over a year and a half, up and say, FM is BS. Found out all that time, my chart said I was taking Lyrica for migraines and premenopausal symptomsI I was floored! I wanted to try Lyrica (no longer take it btw) and he wrote the RX, for 6 months! Needless to say, I stopped seeing him immediately. This is real, and reading all your thoughts here, gives me a comfort to know, I ain't crazy!

    And Howie? Ya, walk in our shoes, just for a day....see what you say then. You have NO idea what this is like. Find another blog you can comment on without hurting others. Great concept. I hope nothing terrible happens to you, to where somebody doesn't believe YOU!

    March 30, 2010 at 17:32 | Report abuse | Reply
  2. Coaster

    I have yet to find a physical therapy/gym that understands that with fibro spasms, arthritis, Degenerative DIsk Disease and herniated disks – and the associated nerve damage – they absolutely CANNOT trest just the problem area. Sure, my shoulder might feel better, but I won't be able to open my jaw for a week. Treating just the one area without caring how it relates to the rest of the body will make the patient much worse.

    My PT doc told me that they weren't making me better, and I shouldn't come back because it looks back to have the same person there so long not getting better. My pain management doc says I will never know what particular problem is causing the pain, and that the best treatment for that is just meds, but in nearly the same breath, he tells me I take too many pills.

    Even the experts don't know what it is like. No one knows what it is like to have YOUR pain, all they can do is try things and hope they work. Mostly, they don't. I've had many types of injections, into my spine, into my nerves, they all work for a while. I've done exercises, I've done Lyrica – gained 60 pounds in 3 months with that, thanks but I'd rather have the pain – I'm back where I started with bad days and good days, and hard work days that take ER visits to recover from, but even the ER can only give me narcotics.

    My primary care doc gave me something called Torridal in an injection, which worked great, but he says the pill form of it is useless, and they aren't allowed to precribe the injections for home use, so you have to suffer for at least 24 hours before you get in to get taken care of.

    My pain management guy is the worse, he says to not gain weight from meds, "just don't eat so much". Thanks, jerk, you think I wasn't your size and and an athlete once?

    I've tried just exercising and trying to disregard the pain, and I got such severe nerve damage doing that, that I will not be able to walk for days after. Not from pain, but because my legs don't work. hey were nice enough to overbill my insurance for a wheelchair for me to use when that happens. Seriously, I can order the exact same chair from WalMart.com for around $250, my insurance has paid to "rent" that for so long they could have bought 5 so far. "

    Frankly, I'm at a loss. My most time consuming job has me on my feet or crawling around the floor for hours, (sort of like inventory) depending on the day, and generally I am on my feet before and after that, or driving. Even with muscle relaxers, I can only sleep 5 or 6 hours before it's just too painful to lay there, which is good because i don't really have that much time for sleep.

    Take it day to day. You know our body better than anyone, and like many experienced people will tell you, get up, shower, get dressed, and ready to face the world. Because you never know, you might be able to.

    March 30, 2010 at 21:36 | Report abuse | Reply
  3. Roger Patton

    Fibromiagia has destroyed my life. MIND PROBLEM'S, DYSFUNCTIONAL, IN LIFE, PAIN SWELLING, JOINT PAIN, MEMORY PROBLEMS, CANNOT DEAL WITH STRESS, GROAN PAIN, STOMACH PAIN, ALL MY MUSCLE'S, AND JOINTS, TRIGGER POINT PAIN, HEADACHE'S. vomiting, HIPS GIVE OUT, THOUGHT DISORDERS, Ringing IN EARS, FACIAL PAIN, SWELLING EYE'S, HAVE TOO REST AND SLEEP MOST TIME. Loaner most of time. I fined; staying active too the best of my ability's, and studying and reading, helps with mind control. And to control confusion I, suffer with from being over stressed.
    This decease is a destroyer of whom I, could have been in my life...

    March 30, 2010 at 21:42 | Report abuse | Reply
  4. Wendy

    I was diagnosed with FM about 2 1/2 years ago. I was in so much pain that I couldn't walk, prepare my own food, or even shower. I have tried more drugs than I can count. I now take a muscle relaxant, Ultram for pain (sometimes up to 8 a day), Gabapenton, and Xanax. I have not once since I've been diagnosed been pain free.

    I have the Fibro fogs, I barely sleep- it's rather difficult while you're in constant pain, and yes, I am depressed. But I think any normal person would be; imagine being in pain constantly, I have lost friends cause "I'm no fun anymore"- I no longer drink and try to eat relatively heathly, going to work became a battle as I couldn't do the thing I used to be able to do. People make comments because they don't understand and It hurts.

    I no longer know who I am. I have since been laid off because I can't do things like I used to some days. About half the year if I can walk at all it's with a limp. I am one of those people that weather greatly affects and I can't just pick up a move to a warmer climate. I have to live with my mom -which at 29 is embarrassing- because some days I can't even lift a gallon of milk.

    I have a wii fit and on the days when I can, I try and spend some time doing that and it seems to help.I really like the yoga and balance games cause they are low impact and can be pretty fun. And I actually feel like I am doing something. But there are days when I can't move the next day. I've been told that I have "Severe Fibromyalgia" and I keep trying to do what doctors suggest but with no job and now no insurance I worried that I'm going to be stuck in an endless cycle of pain and not being able to function fully.

    I wish someone would do some research and figure out how to make it bareable and that doctors would start paying attention to what is going on in Fibro research. I also Wish I could just make all those ignorant people live with it for 3 weeks, then we'll see who's whining.

    March 31, 2010 at 02:23 | Report abuse | Reply
  5. Reenie

    Agree totally with Laura's comments. After being diagnosed nearly 4 yrs ago, I began a daily walk routine in home. Along with pro-adjuster chiro. once a mos. (after initial 6 wk treatment) I've been feeling great. However, I tend to feel to great and up my activity to add in a bit of jogging and some resistance bands and that backfires terribly on me. Start into major pain from sacroilitis and bursitis. All excercise should remain moderate and sitting for long periods, especially in the car for me is a killer. Find it best to stop and while we have a meal, I eat something quick and light and then go walk the parking lot while my family finishes when traveling. The excercise returned sleep to me as well, which is a huge plus, you can't let yourself not sleep or your other symptoms will be magnified. Leslie Sansone and Teresa Tapp DVD's (walk at home) have been a lifesaver, just avoid any high impact stuff, and jogging.

    March 31, 2010 at 07:25 | Report abuse | Reply
    • jill

      same symptoms and general feeling. as far as deppression i was hoping to want to live till my 3 children were grown and out of the house.i didnt know if i could handle the constant pain any longer than that. dr recently started minocin. its an antibiotic and actually works. please look it up online it works. its been 6 weeks/. fibro fog is gone,pain is bearable enough that i can get afew things done after work or actually make it thru work. i refused to have my body feel like it was dying, but i woulnt die. minocin is an antibitic tx with a high pecentage of great results. lots of studies online about it

      May 10, 2011 at 09:55 | Report abuse |
  6. Teresa

    I was diagnosed with FM back in 2007, after a freak ankle injury that caused me to have surgery. It wasn't but a few months later that I started suffering all the symptoms. I am currently taking Lyrica (Max Dosage) and it keeps the pain to were I can work full time and still manage to function. I also have decided to not let this disease "Beat Me" so I have not missed a day of work so far, I am a functioning Fibromyalgic as my doctor calls it. I am so glad to see that there is finally some recognition to this disease. I agree I would not wish this on my worst enemy. I have totally lost the person I was before all this hit me. I continue to struggle on a daily basis with the fact that I will never get that person back into my life. I wish there was more excercise facilities that catered to people with Fibro, it certainly would help all of us .

    Howie- You need to get a life. I almost wish you would get this disease just for being so insensitive. As much as you pissed me off with your uncalled for comment.

    March 31, 2010 at 08:45 | Report abuse | Reply
  7. Amy

    I have FM, Rheumatoid Arthritis, Chronic Fatigue Syndrome, and diabetes, migraines, oh and due to the steroids & other meds I also have osteoporosis and the bones of a 75 year old. I was 45 when diagnosed. I am unable to work due to the inabilility to keep my diabetes under control with the stress/fatigue of just getting up and ready for work. I tried working from home for 3 years but was unable to continue. I am on fentanyl patches, neurotin, gabapentin, Enbrel, Methotrexate, and prednisone, to name a few. I also take thyroid medications, vit B12 injections and nutritional supplements which seem to help. The first 4-5 years I couldn't hold a glass of water, dress myself, wash my hair, or drive. The last 5 years I have gotten my Rx pretty much settled and am able to take care of my daily needs but still have the extreme fatigue and break-through pain. When I am unable to get my Rx, the extreme pain returns and the advancement of the diseases continues and is not able to be masked when I get back on my Rx.

    The memory & thought process loss has been a real concern for me. Broken bones have lessened since taking calcium & Vit D. I am unable to get up from sitting in a regular height chair, I am unable to stoop or to kneel and if I do, I have to literally crawl to a chair, coffee table or couch and pull myself up ... when I am able to use my shoulders. Having someone help me up hurts too badly. How do you think it makes me feel to have to literally crawl on my hands and knees across the floor like an infant to an object I can use to get up.

    For people who would like to know what my body feels like ... take little shards of sharp glass and stick them in each and every joint so that turning your head, grasping a bottle of water, trying to dress, or ANY movement feels like it does when you step on a piece of glass. Remember that "suck your breath in" due to the pain feel? Have that 24/7/365. There is no getting away from the pain and the fatigue. Several hours of fun leads to sleeping 24+ hours and days of not being able to get up. Sitting, standing, walking, hurt unbelieveably. I deeply regret the fatigue and pain of holding or having our infant grandchildren to spend the night. Something so wonderful and enjoyable should not cause so much distress.

    My husband built greenhouses with raised hydroponic beds so I am able to garden and that has been a great outlet. He is also a great housekeeper, cook, shopper, and advocate for me! I miss my old life so much, walking 3-4 miles a day, training horses, and always being active. I do as much as I am able and then I pay for it for days afterward.

    March 31, 2010 at 10:03 | Report abuse | Reply
  8. Howie

    All these comments serve to further convince me of the fictitious nature of this supposed illness. The experts can't tell you what is wrong, because nothing is wrong. Fibro Fog? Try getting off the drugs. The fog goes away. Unbearable pain for no reason? Also, try getting off the drugs. When you take pain killers and anti-depressants daily, you develop an unreasonable over-sensitivity to pain. Part of the whole addiction cycle. Fibro has always struck me (and has been confirmed by many Doctors I have spoken with) as a refuge for professional victims, hypochondriacs, and drug addicts. If it is anything at all, it is psychological.

    March 31, 2010 at 11:49 | Report abuse | Reply
    • Only Me

      Howie, you really need to get a life....with fibromyalgia....and you will
      Now go see your mommy.

      July 10, 2011 at 17:44 | Report abuse |
    • Hannah

      Howie, to try to prove you wrong, Fibromyalgia isn't due to drugs or addictions. I have no job and so therefore no insurance. I haven't been to the doctor for over 2 years for my fibromyalgia and have not had any medications since for the treatment of my pain. So if your such the expert on this disease then you tell me why after the simple task of cleaning my house I can't get out of bed the next day because of so much pain. You tell me why I could lift 165 pounds just five years ago and now I can hardly lift my two year old son thats only 35 pounds without crying out. Unless you have Fibromyalgia and know what it feels like to live day in and day out with the pain that we live with then you have no clue, therefore you have no credibility as to what we live with. Your not a doctor so with no credibility on this topic you should keep your mouth shut and stop bashing us because you don't know what we go through.

      September 22, 2011 at 18:11 | Report abuse |
    • Glenda55

      Howie: Your comments are not only incorrect, but downright rude. I wish you could experience the hell that Fibro patients suffer on a daily basis. In my opinion, you are an uneducated jerk, who has absolutely no right to be making such comments on a Fibro post. Perhaps there is another site that it is better suited for a cretin such as yourself.

      February 22, 2012 at 17:05 | Report abuse |
  9. Grace

    Howie-
    Your Mother called, she said she wants you to "get off her computer and
    get your homework done!! NOW!!

    March 31, 2010 at 12:05 | Report abuse | Reply
    • Only Me

      Fibro affects mostly women it's 20 to 1 to men. But men also get it. It comes from many reasons but mostly from chronic pain.
      or some sort of back injury for longer then 3 months.

      I wish all morons that think fibromyalgia is not a condition get it them selves. It is a dibilatating condition and qualies as a disability with LTD and Social Security. I guess they must be wrong....HEY! Howie!

      July 10, 2011 at 17:53 | Report abuse |
  10. abigail

    Some diet restrictions can make a big difference. 1) avoid the nightshade family – potatoes, tomatoes, sweet peppers. 2) chicken can be inflammatory – especially for painful feet. this includes chicken broth. 3) eating smaller meals more frequently helps with energy levels and IBS .

    As for chores – stop when you feel fatigue coming on and learn to recognize the symptoms of doing even a little too much.

    Pay attention to oxygen levels in your environment – recycled air in commercial environments – shops, theaters, malls, will cause muscle exhaustion and days of fatigue.

    March 31, 2010 at 12:29 | Report abuse | Reply
  11. KSM

    Fibromyalgia to me seems like one of those things that are imagined.
    Does anyone notice that the people leaving comments here have a host of "so called" other problems as well?

    March 31, 2010 at 12:52 | Report abuse | Reply
  12. MARISOL

    It is so nice , but terrible to say, that so many people know what I am going through. I am 35 years old , mother of two children , my boy is 6 and my daughter 2. It makes me so sad that I can only play with them for a few minutes before the pain gets so bad I have to stop. My sex life is not at all , I got a good husband but really , can you blame him , if he leaves. I want to leave sometimes, so they can have a better live. I am very depressed all the time, sick of all this pain and nothing relieves it. I wake up in pain and go to sleep in pain. Its not the life I wanted to live. Every month I go to my doctors and he tries a new drug, but nothing is helping. I go to the Ymca and walk around , feeling lost and stupid for even trying to do anything. I keep hoping for some type of drug to take it all away. I even had to change my job, because I could no longer do my job, now I work in a office answering the phone for minimum wage, how porthetic is that. It took me almost 1 hour to type this.

    March 31, 2010 at 13:14 | Report abuse | Reply
  13. Jannon

    KSM...you're in the same category that I think we've all put "Howie" in....YOU JUST DON'T GET IT!!! Would be great if you did though, it would definitely shut you up.

    March 31, 2010 at 13:27 | Report abuse | Reply
  14. marisol

    I keep praying and praying all this pain will go away, or atleast be mild enough , so that I can have a life. If you are taking a combination of pills that is helping you , let me know , so that I can tell my doctor and maybe he will prescribe them to me. I just want this pain gone. I am tired of being tired, sick of being sick.

    March 31, 2010 at 13:59 | Report abuse | Reply
  15. Grace

    To Howie and KSM:

    One word.... "KARMA" !

    My husband, who thought it was also "imagined", recently came down with Fibro! For years he belittled me, because of my illness. Called me all sorts of names, told me to get off the drugs, etc. We even divorced over my illness.

    As of six months ago.. He is in constant pain, with FIBRO!

    What goes around....

    P.S. Fibro is thought to be inherited from the Mother's genes. Beware, and check with your Mom, if she has it, you may someday get it as well. Good Luck!!!!!!

    March 31, 2010 at 14:07 | Report abuse | Reply
  16. Fred N.

    One last article for the losers that keep chiming in where they don't belong, nor are welcome – http://www.anapsid.org/cnd/diagnosis/brainpain.html Of course I'm assuming they can read at a 3rd grade level or higher. I've participated in these studies and I know first hand this is real.

    While I can bike and do other things some here can't, there is not one minute in a day that I am not in pain and have been like that for years. It is by shear force of will that I make it through most days. I know for many of you that is simply not possible. You all are in my thoughts and prayers – even the hateful and ignorant ones too. At least there's hope for us. They don't make a pill to fix what's wrong with them.

    March 31, 2010 at 14:33 | Report abuse | Reply
  17. janej

    I was diagnosed with fibro 15 years ago and at first I had mixed emotions. One was sheer joy at putting a name to symptoms I'd had for many years. Second was depression because it sounded so awful-no cure, etc., and I had a nice little pitty party for myself for about six months.

    I got tired of my pitty party and complaining and started moving again. I may have fibro, but fibro doesn't have me and 90% of the people I know don't know I have it because I haven't let it rule my life.

    Yes, I have extreme exhaustion, but if I don't get up and move I feel worse. I appreciate the research being done on it and this recent research just confirms what I've been doing all along... moving and moving on!

    March 31, 2010 at 15:02 | Report abuse | Reply
  18. Carol O Ackles

    Take a look at the following book, by David Brownstein, MD. There is good hope. Check out the case studies.

    Dr. Brownstein's new book "Overcoming Arthritis" is a must read for practitioners and patients alike. - Townsend Letter for Doctors and Patients
    Product Description
    This book provides the readers with a holistic treatment plan designed by Dr. Brownstein and used in his medical practice to treat arthritis, chronic fatigue syndrome, fibromyalgia, lupus and other autoimmune disorders. The treatment involves the use of natural hormones, diet recommendations, nutritional supplementation, allergy elimination and detoxification.
    Dr. Brownstein also describes how many illnesses such as arthritis, chronic fatigue, fibromyalgia and other automimmune diseases may be caused by infections. This book will show you that supporting the immune system is the key to treating these chronic conditions. By developing a comprehensive treatment program that includes using natural therapies, "Overcoming Arthritis" gives hope to those suffering from many chronic conditions. Dr. Brownstein includes over 30 case studies from his medical practice to illustrate the success he has had in treating these difficult chronic conditions. This book will show you how you can learn to use safe and effective therapies to regain your health.

    March 31, 2010 at 15:03 | Report abuse | Reply
  19. Antonia

    It took me two days to find this again... And although, it is a little on the lengthy side, it is well worth the read... I have actually printed out a few copies of this and given it to those I think that have no clue what I go through, each moment of each day. It has helped A LOT, and has changed minds on the subject. Maybe it will for you as well?!

    My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is VERY real.

    My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

    My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age (Young people can get fibro) but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

    My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
    My sensitivities – I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.
    My intolerance – I can't stand heat, either. Or humidity. If I am a man, I may sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

    My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression, but it is a result of the Fibro.. not a cause of it.. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

    My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

    My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it. Often the medication I must take causes weight gain, but many of us with fibro suffer from severe IBS and lose weight.

    My need for therapy – If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that Charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain, regular massage can help, at least temporarily.

    My good days – If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

    My uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

    Being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours
    too.

    The difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not better, I am sounding happy. If you want to comment on that, you're welcome.
    Being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

    Repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what FMS/MPS does to you. – Please understand that FMS/MPS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

    "Getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

    If I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can't be put off or forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive. – If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would KNOW.

    If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you – people who are not sick – I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the the doctor, or to the physical therapist. I need you on a different level too . you're my link to the outside world... if you don't come to visit me then I might not get to see you. ... and, as much as it's possible, I need you to understand me.

    (I found the above writing here... http://oldghostshome.com/fibro.html)

    *Additionally, If you are member of Facebook, there is a great page about Fibro there. Many people suffering with this syndrome, exchanging information, ideas, feelings, etc. Just type in the word "Fibromyalgia" and it should come up!

    My heart goes out to all of you, who are in the same boat with me, and to your families, who suffer daily as well, watching the person they love so much, in so much pain!

    March 31, 2010 at 16:20 | Report abuse | Reply
  20. abigail

    thank you, Antonia, both for your comment and for the article you found and posted for us. It is so hard to know what and how much to communicate about what we experience with fibromyalgia.

    I do not tell my sons all that i am experiencing. i do not want them to carry an image of me in poor shape. I do not want them to add me to their Problems list. I do not pretend. I just don't tell all of it. If it is confusing to me, how can i expect others to understand?

    Living with fibromyalgia is isolating. thank you for sharing.

    March 31, 2010 at 18:19 | Report abuse | Reply
  21. Sherrie

    Antonia:
    Thank you for your last post (March 31st, 2010 16:20 ET). I intend to print it out to give to those close to me so they can get an understanding of fibromyagia. I am happy to say that the person that wrote it suffers a bit more than me, but I'm not that far off. It really hit home with me. Again, thank you!

    March 31, 2010 at 18:50 | Report abuse | Reply
  22. Dr Kildare

    Sounds like a big old pity party here.
    Fibromyalgia is a meaningless diagnosis that describes nothing more than generalized pain. The majority of patients I see with this diagnosis don't move their bodies enough, have poor diets, don't get enough sleep and are generally depressed. Anyone living in gravity with the stresses of our hectic society has some form of chronic pain usually beginning in their 30's.
    So stop whining, join a gym, have more sex and try complaining less.
    Aerobic/anaerobic exercise done on a regular basis will improve your life 95%. Deal with the other 5%.

    March 31, 2010 at 19:04 | Report abuse | Reply
  23. Antonia

    P.S. The link that I posted in my previous comment here, apparently doesn't take you directly to the page I was referring to. (My apologies, it worked for me before I posted it!). When you click that link now, it will tell you page not found, from there you click on the link there that says take me to the "home page", and from there, go 3/4 way down the page and click on the box under the heading "where to next", a drop down menu will appear, click on "women in chronic pain" and it will take you to the page that I originally posted in the link. Again, my apologies!! (There are some really great links on that page about Fibro, etc.).

    March 31, 2010 at 19:46 | Report abuse | Reply
  24. Alice Faye Willis

    I am diagnosed as diabetic (mild), arthritis, DDD, fibromylgia, scolosis, so I don't know how much of my pain is from which ailment, but it is certainly there. Something that I want to add to the comments is about depression. After being told by 2 different doctors that saw xrays of my arthritis, they commented that it would never be any better. That is a very depressing thing for a doctor to tell a patient. I had given up working in my yard, gardening, singing in the choir, all of which I loved doing. What helped me more with the depression than anything else was reading Christopher Reeves book, "Still Me" about his life after his paralysis. Immediately, I began to feel so grateful that I could get out of bed in the mornings, fix my breakfast, get my bath, without help, breathe on miy own, I can usually cook one meal a day for my husband and I. We are both 77 years old and both have common health problems so we are very considerate of each other. He is still able to drive, shop for groceries, we have help with moping, bathroom cleaning, etc. I use a motorized chair when we go out. We feel that we are so blessed to be able to be at home with each other. So now, instead of focusing on pain and doctor's saying, "It will never be any better." We try to focus on the good in each day. I pray that this will help in some small way, each one of you. God bless you all.

    March 31, 2010 at 21:58 | Report abuse | Reply
  25. Delores

    Symptoms started when I was 12-years-old (I'm now 59!) and generations of doctors comments have run the gamut from "all-in-your-head, allergic to self, Epstein- Barre, developing lupus, depression without feelings of sadness (???) to finally fibro." Meds that help me are Lyrica (PM only), Mobic, Aleve, Extra strenght Tylenol and 250mg Lortab 5 (for really bad days only). I rotate the meds. Wrist splints are a god-send, swimming laps in a warm pool is very soothing and I can swim for 45 minutes, but can only walk for 5. Go figure. My favorite posession is my handicap licensse plate which allows me to go the the corner grocery store and feel a little bit normal. My wonderful husband washes the floors (tear out the carpets), does the laundry and cooks. I had to retire early from a job I loved, but am back to working 2 days a week for 6 hours. I try to keep a sense of adventure about "My fibro"- it is a part of my life, sometimes it controls my life, I need a lot of support from God and my family to manage, but I try to stay happy because there are so many things I still have to accomplish in this life!!! My heart really goes out to all of you, and especially the younger women who have little kids at home. Pace yourself, and schedule in 1/2 days for R&R when you need it. And find a doc who is knowledgeable and kind!!! God bless!

    April 2, 2010 at 13:18 | Report abuse | Reply
  26. KnDB

    I was diagnosed with Fibromyalgia in 1990. I was 38 years old. I had not been well since my last child was born in 1981.

    For those less than sympathetic posters – including Dr. Kildare: Why bother to post at all? You obviously have idea of that which you speak. And don't think that I – or anyone else suffering from this syndrome – are impressed with an MD behind anyone's name. Almost all of us have been misdiagnosed, ill-treated and prescribed medications that often did more harm than good by more than one "Dr.". The title means you went to school. It doesn't mean you aren't still ignorant.

    I still work full time and have ever since my diagnosis. I move as much as I can, when I can. My diet is as close to "real food" as possible (not raw – just close to nature – purchased from produce markets, butcher shops and the outer aisles of the supermarket). I do the best I can to get at least 8 hours of sleep each night, although even with medications, I often get less than 5. I take medications for pain and sleep and take nutritional supplements as well.

    I don't feel as bad as I did when I was first diagnosed, although I often still have very bad days. Even on good days, I have moderate to severe pain in most of my body and am often exhausted by the time I leave my job. When I am extremely stressed, I don't remember things, and the almost photographic memory of my younger years has been replaced by – at best – difficulty remembering things. I have most of the other "symptoms" that are often found in FM sufferers, as well.

    My physical quality of life is not so great, but over the years, I've learned to reduce my expectations. I am happy even though I hurt.

    It helps a lot to stay in touch with family and friends and to find some kind of spiritual support system. I try to go to church weekly, but I know that not everyone goes to church. It's just really nice to have a "higher power" to turn to when things are really bad and to be thankful to when things are good.

    I really appreciate the article Antonia posted. I have a couple of friends who have been asking me about FM that I plan to share it with.

    April 2, 2010 at 16:46 | Report abuse | Reply
  27. J. Bushey

    For Fred N. Previous statement on March 10-2010:
    Your comment brought tears to my eyes as I was haivng a horrible day! ( Dont be discourraged! Even though what might work for one person might not work for you, DONT GIVE UP! Keep fighting. I have a very physically demanding job. (post construction worker)
    I diagnosed myself with FMS. In 2000, but, I remember as a child having such severe leg cramping that I would cry myself to sleep...Then sleep for hours 12-22 hours at a time. My mother thought that I had mono...and the drs could not figure out what was wrong with me. Test after test all I ever found out is that I was low on Iron???
    All your comments have turned a light for me. I wont be discourraged! and I will keep fighting! Thank you. xoxo

    April 3, 2010 at 11:26 | Report abuse | Reply
  28. Carolyn Stirling

    Fibromyalgia has ruined my life too. I have done all I can to help myself. Lost weight, exercised, cooked from scratch with raw ingredients, live gluten free etc.

    My companion dogs passed away last year and I got a new little friend. This wee thing is hypo so I have to walk her for an hour a day. I am worse with this regime.

    I feel heat and cold intensely. My core body temperature is abnormal too.

    At the moment I can walk the dog and when I get home I am done in. I don't take heavy pain killers and use heat and a natural rub to help cope. At the moment I am having to take pain relief much to my disgust as I have constant neck and head pain.

    I have one sister also with fibromyalgia and two with severe autoimmune diseases. We all have arthritis and one had thryroid cancer.

    Nobody would want this syndrome and I would not wish it on my worst enemy. I hope those who say it does not exist do not live to regret their words. What goes around comes around.

    April 4, 2010 at 16:19 | Report abuse | Reply
  29. mystic

    I've had fibro for 11 years. It has made my life hell. I've been on hydrocodone and tramadol, also muscle relaxers. Staying active does help, but it is hard not to overdo it. Also, depending on the weather, there are still really bad days. The pain pills don't work very well and they bother my stomach. However, marijuana makes me feel almost normal again. I can ignore the pain and do a lot more. I've been able to cut back on the narcotics. It also helps with anxiety caused by frustration and pain. I miss being pain free. I actually find myself feeling jealous of people who are pain free.

    April 5, 2010 at 02:25 | Report abuse | Reply
  30. Feeling Better Today

    I was diagnosed with fibromyalgia in 1983. I take a mild antidepressant to help me sleep at night. But I suffered as most of you have for all these years, having good days and bad days, even having good weeks. Every time I felt good I would walk a little or do some strength training and it seemed to help. I even walked a little on days I felt awful.

    I don't know if this will work for anyone else, but it did for at least one other person I know who has tried it. I have changed my diet dramatically and have been mostly pain free for the past year. I eat mostly fresh fruits and vegetables. Some cooked vegetables like beans and sweet potatoes, and some fish. I no longer eat red meat, pork, and rarely eat a piece of chicken. I do not eat/drink dairy products (take calcium and vitamin D supplements), caffein, sugar or processed foods. I do drink carrot juice (between 16 and 32 ounces a day and lots of filtered water. You can buy organic carrot juice at the grocery or juice your own. Either way is very tasty. My pain began to subside within days of beginning the diet changes and was completely gone within three weeks. I feel better. My fibro fog appears to be gone. I can work in my yard and not suffer the next three days for it. Even my post polio syndrone (I had polio as a baby in 1951 – before the vaccine) pain is gone. Post polio syndrone is not related to fibro.

    Although my husband was supportive, really understanding what I was going through took a long time. He is so amazed at the difference in me since my diet changes, that he doesn't complain that it costs more to eat this way.

    I'm 60 so I do have other normal "aging" issues and I have a bad back (2 surgeries, 4-5 bulging disks), but even that pain has lessened. My arthritis pain greatly diminished as well.

    My doctor doesn't totally agree with being vegen, but he is helping me make sure I eat the right things to get all the nutrients I should have. Of course, eating fish and cooked vegetables is not vegan, so I've modified the diet to fit my needs. Still, the closer you can get to the natural plant, the better.

    So all in all, I've reduced the pain and fatigue with diet change. I also reduced my antidepressant from 450 mg to 150 mg. I don't take muscle relaxers and rarely take anything for pain. I go to the gym or walk at least three times a week. I still work full time and like many of you, never took off for fibro pain even when I desperately wanted to.

    As for the schmucks (not a nice name) who chimed in to let us know it is all in our heads and we are just lazy, I'm just grateful I don't know them personally. And if "Dr Kildare" is really a medical doctor (doubt it), I truly feel sorry for his patients because he isn't a very deep thinker and has no charity. Neither of you has hurt so bad you have to talk yourself into getting out of bed because the very act of that movement is excruciating. Neither of you has silently endured the pain all day at work and gone home to prepare a meal for your family all the while wanting to just lie down for a while due to crushing fatigue. Neither of you has cried and cried because you want to take care of your family and your home, but you can't even take the lid off of a jar that has already been opened due to the weakness in your hands. So back off. We are not lazy and it is not in our heads. We are struggling to find ways to cope and ways to feel normal. We don't need your sarcasm and thoughtless comments. As one commentor said, you are truly ignorant.

    My thoughts and prayers are with each of you who suffer with FMS. You are brave and strong people. Wimps and lazy people couldn't handle it.

    God Bless,

    April 5, 2010 at 14:37 | Report abuse | Reply
  31. Carol

    I can barely force movement while screaming in pain. I wish I was a horse and could be shot to put me out of my misery.

    April 5, 2010 at 23:57 | Report abuse | Reply
  32. M.Thompson

    I am 56 yrs old and have suffered with FMS for the last 30 yrs. I have learned to live with the pain, on a daily basis, and am taking Cymbalta and a muscle relaxant, plus amitriptilyne to help me sleep. I went to a pain clinic for 6 yrs and watched as my pain became worse and worse. I stopped going to the pain clinic, and after horrible withdrawals, altered my diet to exclude sugar and processed foods. I use cannabis on a daily basis and have found that this is the best medicine for me. It helps me relax,and gives me the energy to desire gentle exercise, such as hatha yoga. I also use pet therapy for myself, with my dogs and my miniature horses. I do what I can and some days that is not really a lot. I have a very understanding husband and really good support from my best friend, my sister. Most people don't understand the extent of the pain that I experience but I keep striving to go forward. After trying the complete gamut of rx's and withdrawals that they cause, I have found that cannabis is really the best medicine of all.

    April 6, 2010 at 22:54 | Report abuse | Reply
  33. Stephanie

    i feel everyone's pain. this is a real medical problem. it affects every part of your life. i would not wish it on anyone, except for those who think it's "all in our heads". then they can finally feel the pain. dr. kilder, how in the world do you have a medical license? you need some more schooling, "dr.".

    i'm 18 years old. i've only had it for one year.
    i can't live like a normal 18 year old. i work all day, saving up money for school, and come home limping, not even wanting to stand up to take a shower. it hurts a lot to see co-workers my age go home with plans of partying and going out, when mine are sitting, sitting, sleeping, and sleeping.
    i can't always do things with my friends because i'm just plainly exhausted.
    i don't work like i used to.

    if i'm only 18 and have a long life ahead of me, how am i going to live the way i'm living now? living in pain every waking day.

    and not to mention, i'm dependent on painkillers. that doesn't even fully take away the pain.

    the best medicine for me is sleep.
    but how can you sleep with a body of bruises?

    April 21, 2010 at 23:44 | Report abuse | Reply
  34. Fred

    Stephanie – though most of us are a bit older than you, we've all wondered the same thing – If I feel this bad now, God – what will I be like at 65 and beyond. Hopefully though, since you are so young, you'll live to see a cure or at least significant relief. It took me years to find the right med to help me sleep. I'm still in constant pain, but my outlook is better. Hang in there and don't let the idiots get you down. At least science is working on our problem, but you can't fix stupid.

    April 22, 2010 at 22:03 | Report abuse | Reply
  35. Scott Tirrell

    Many people are not aware of a treatment for fibromyalgia, involving an antibotic called Minocin. Information regarding this treatment can be found at: http://www.roadback.org. This treatment is also used for rheumatoid arthritis, scleroderma, and lupus. Obviously, one should consult his or her doctor concerning any treatment, but this website is a good place to start in looking for information regarding this treatment.

    April 23, 2010 at 11:16 | Report abuse | Reply
  36. Barb Kramer

    Fred is right on. Someone gave me advice early on, she said it takes awhile to get the combination of meds and activity right. It took me two years but I rarely have to cancel out of something now. I've learned to pace myself. I am in some degree of pain every day. You just have to have the mindset that you will overcome this and live the best life you can. I am over 65 and have other issues but I think I'm basically healthier than I would have been if I didn't get fibro 2 years ago. I'm eating right now and am more active than I used to be. So keep trying to get your right combination Stephanie and Good Luck.

    April 23, 2010 at 11:44 | Report abuse | Reply
  37. Jannon

    I haven't been on this blog in a while, but get updates via email when a new one comes along. Stephanie, I'm sorry this has happened to you at such a young age girl! I'm 45, diagnosed 8 years ago and I have similiar problems as you do. My daughter, 22, and I are the best of friends and most of her friends call me Momma and want me to come hang out every now and then, just so they can give me updates on their lives, etc. I HATE not being able to go, to turn those kids down, hurts more than the FM itself. They all understand, but say" it's ok, we'll take care of you" if I go. They have all agreed that seeing me like this hurts them. My friends my own age are planning things in advance, get togethers, etc. but I can't RSVP because I don't know how I'm gonna feel that day, a week from now. You have to know that your life will be played by ear, when you feel good, plan something, even if its the spur of the moment. People have to understand spontaneity where you're concerned, I know everyone around me does. My Mom would never do anything spontaneous in her life, but she does now, for me, and so does my daughter, who was my care giver when I was in a car accident, making our relationship so strong, people think its sick, we're so close!!!
    Being dependent on pain killers isn't a bad thing, as long as you don't get addicted to them. I use to tell people I'm addicted to not feeling pain, but in actuality, they don't really help for FM. I've started taking Neurontin (Gabapentin is the generic form). I took my chances on Lyrica and Cymbalta for a period last year, they didn't work for me. Talk to your Dr. about Neurontin, I love mine for talking to me about it. It makes the hard days not so hard, and it does have its side effects. My concentration was already out the window and this makes me more scattered, but I keep note pads everywhere and write things down to keep it together. I don't work, haven't been able to for 2 years now, the accident left me with two crushed ankles and disc problems in my back, but I do clean two houses a month for money and the homeowners know that if I can't finish my tasks in a day, they understand it might take me two days to do it. I hope you find friends, or have friends, that understand that a movie night is great for you, instead of going out partying or whatnot. They aren't your true friends if they don't understand that.
    I think about getting older a lot, wondering how on earth I'm gonna feel at 65, my Mom is 65 and runs circles around me. Just take it one day at a time, walk more, swim if you can, those two exercises are about the only things I can do but they help so much. I always feel better doing it, even if it does leave me feeling like a lump of mashed potatoes after I do it, I still do it. You said that you work and thats awesome! I hope you have understanding co-workers, most importantly an understanding boss. Everyone around you is affected by your disease in some shape or form. I hope you have a great support team too! That means the world. Hang in there hon, its not a death sentence even though there are days you think differently. I try to do the mind over matter thing each and every day and thank God for every day I can get up and walk! I'm confident a new kind of medicine will come around to help us all living with FM, and it won't be a narcotic! God bless you Stephanie!

    April 23, 2010 at 11:52 | Report abuse | Reply
  38. abigail

    RE posting by Scott Tirrell: check Wikipedia or another site for the side effects of Minocin.. Although Minocin is prescribed for rheumatoid arthritis, some of the possible side effects of Minocin may aggravate the conditions we already suffer from with fibromyalgia.

    April 23, 2010 at 23:19 | Report abuse | Reply
  39. Fred N.

    J. Bushey – thanks for the kind words and glad to know that even if one person is helped, it's been worthwhile to participate in this forum. God bless and keep fighting, keep researching, and keep the faith.

    April 24, 2010 at 09:26 | Report abuse | Reply
  40. Scott Tirrell

    Abigail, it is certainly true that side effects are an important consideration for any medication. The proper protocols for using minocin (it is not taken daily for these conditions, for example) to treat these conditions must be followed – again, information concerning doctors that prescribe minocin with success, and who can be contacted by your treating physician, is available through the http://www.roadback.org website. I'm not aware of minocin being found to aggravate the underlying conditions of fibromyalgia, lupus, rheumatoid arthritis, or scleroderma. To the contrary, the theory is that minocin actually treats the underlying condition, as opposed to Lyrica, prednisone, etc., which only deal with impacting symptoms. I can only relate that I know people personally who have had great success with this treatment.

    April 26, 2010 at 12:59 | Report abuse | Reply
  41. Dee

    My daughter passed this study to me. Which that in itself is a good thing. I remember when I first told her that I had Fibro and she said that was the "new" thing that everybody had. Like Chronic Fatigue Syndrome.

    Anyway you know that saying "We've come a long way Baby". Well we have, the fibro community, the doctors and others that are starting to understand that this is not "All In Our Heads". We still have a very long way to go, but at least for "MOST" Drs. it is not all in our heads, (in a psychiatric sense).

    This entire thread has been very informative. Most I did know, however there are somethings that I did not know.

    Now, some of the things I did not know came from Howie and Dr. Kildare (I remember watching that TV show, along with Ben Casey).

    I did not know that there were people out there that have nothing better to do, than to demean and hurt others. Well actually I did, however I do not get it. I spend my days just trying to keep up with everything that has to be done, because it personally takes me triple the time to do everything that I used to do. I certainly do not have time to get on blogs and pay attention to something that has no meaning to me. So what, you have nothing else to do?? That's sad. Do you go onto feminine hygiene sites and tell the women there is no such thing as cramps, that it's all in there heads? Don't laugh there was a time, although years ago, that women got shock treatments and went into institutions for the criminally insane. And all because Eve ate that apple. God told her not to do it.... LOL!!

    And Howie, how cute are you. Get off the drugs and then the fog will go away. I take Tramadol, Zoloft and a thyroid medication.

    The thyroid medication was perscribed because a blood test came back and said that I was hypothyroid. Now is that okay, because a "blood test" told the Dr that? Now, I really do know this is true without a blood test,because somewhere in my house is a perscription that I haven't taken for over ten days and I have gained five pounds. Must be all those bon bons I am eating while sitting on my rear end. Or maybe it's that phantom fog that I cannot remember where I put the perscription. Or perhaps it is the mess that is in the house right now, (not dirty) because I had a rotten week. Oh no, I am feeling pity for myself. Anyway moving on.

    The zoloft was perscribed because of the serotonin levels. Spend some of your time researching elsewhere, how serotonin levels help many people with many different conditions.

    Now Ultram or the generic tramadol. What a kick I get from watching idiots on U tube saying they get high and what a buzz they get. Well, I get nothing like that. It has helped me get through these past eight years and live somewhat of a normal life. Now, there maybe a possibility that I will have a problem with withdrawals sometime in my life. But I may also get run over by a bus. I will have to deal with that when and if the time comes.

    But according to you Howie, the drugs is why I have this fog in my head, better known as Fibro Fog. Here is my question to you. Why did I have all of this fog before anything was perscribed? Unless popping twelve advils a day gives you fog. Check that out and get back to me when you have a chance.

    Basically the two of you need to get a LIFE and go blog somewhere else, on a subject that you might have some knowledge of.

    To all of you that are not Dr. Kildare or Howie. Keep chatting it will help. But do it with those that know what you are feeling. You will just get depressed with those that do not really know what you are feeling. You cannot really blame those people because they really cannot be in your body and understand. We are just starting to understand ourselves.

    Keep doing the research, from all natural remedies, the latest findings, etc. Join the NFA ( National Fibromyalgia Association), it is wonderful. Get the magazine AWARE, if you pay $35.00 to join you can automatically get the magazine to come to your house. Or you can read it online. You can also purchase it at one or two of the major booksellers It is a wonderful organization that empowers you and teaches you all kinds of approaches.

    My perscription for myself is of course what I have already said in my medication log for Howie and the Dr. But I do my stretches, my walks and have a general feeling of this is not going to get me. Become empowered. As many have said here, you will have the pain no matter what you do. But you can help have less pain by doing what you always did do in moderation. And pacing yourself, scheduling yourself. And for your own sake, if you see a Dr. and he/she gives you the "LOOK", run or walk swiftly out of his or her office. My suggestion is you definately see a rheumatologist.

    After months of research on my part and pretty much diagnosing myself, because everything fit. Then I knew what kind of doctor to go see to let me know if I had what I thought I had. I got very lucky, the particular Doctor that I went to, was on the Medical Board for Fibromyalgia in both London and Canada. If he did not get cancer, he would probably be on the US Medical board also, if and when they ever have one. What a phenomenal program they had. They had a diagnostics team, rehabilitation team, psychiatric team and then of course the actual patients. In my particular class there were 15 of us. What a great thing to see fifteen people that all joined at the same time and watch their progress. It was an actual program of six weeks, for five days a week.

    Now, I probably sound like I have money, right, not true. I actually completed my class in twelve weeks, because I had to step down from my retail management job to assistant manager in order to attend these classes. I was obviously lucky enough to have health insurance. Which now because my company went bankrupt a year and a half ago, I have none, nor do I have a job. However, I am so thankful and count my blessings that I attended that class, when I was able to. If you are able to please check into some kind of program of this nature. If not go to the NFA like I said before and you will find tremendous resources.

    I will be going on a trip, very shortly to the mountains. I have always wanted to do White Water Rafting. I know what you are saying to yourself. I could never do that because of the pain or what is she crazy. Perhaps I am. Will I pay for it, you bet I will. But I just do not know exactly how much. And none of us really do.

    I have done such a simple thing as vacuuming my 1400 square foot house and not been able to walk the next day. Or I recently put mulch down in the yard, maybe it took a half hour, max. And for two days I was in incredible pain. The one thing I absolutely do know is that it is not going to kill me, the Fibro I mean, not the white water rafting (who knows on that one, only God). But what memories I will have from doing that. Those memories will make me laugh on the really bad days and the good ones.

    So to all of those that have and will continue to post here, thank you for your insights and your knowledge. Keep thinking positively and keep doing what needs to be done to make your world a better place. Don't let the bad guys get you down. Whomever they may be.

    May 30, 2010 at 14:00 | Report abuse | Reply
  42. Leslie

    To all of those suffering with fibromyalgia, I applaud your strength!!! Despite living with constant seemingly unrelenting pain, each and every one of you is determined to face another day come, come what may!!!!

    I too have fibromyalgia which was diagnosed last year, and live a life of constant pain. It's severity varies from individual to individual, and therefore each case is unique and should be treated as such. Work with your physician to tailor a treatment regimen that is specific to YOU based on your presenting symptoms, and listen to your body when pushing exertional boundaries, to prevent injury.

    I work in HIGHLY STRESSFUL field, and at time of diagnosis, was told that I would "probably" not be able to continue to work in my profession for much longer. I told my doctor in no uncertain terms, that "I" was not going to be the one living with this disorder, IT was going to live "WITH ME!!!!" I am fortunate that though I experience some of the same symptoms as many of you and MORE, it has not impaired me to the point that I feel helpless. Activity as tolerated (start slowly and work up from there) and vitamin D supplementation are a must, as well as adequate sleep.....whether medication induced or natural.....remember...... sleep is RESTORATIVE!!!! Also if possible, join the National Fibromyalgia Association....they are excellent resources to specialists in the disorder (rheumatologists), support groups in your area, and latest research trends and treatment modalities.

    To Howie and KSM.....it really is a wonderful thing to be blissfully ignorant. But it is even better to be well educated!!!! So when contributing to a forum such as this, say something intelligent rather than sheer unadulterated stupidity. And to those who might be tempted to respond to them, don't even dignify their ignorance with a response!!!!!

    To Dr Kildare....sounds like you need to return to medical school and do an extra year of INTERNSHIP.....NOT EVEN RESIDENCY!!! (to move on to residency says that you have a certain level of understanding, and a solid knowledge base!!!) Empathy is a must in the medical profession, and quite frankly a quality that seems to be lacking on your part. Whether YOU personally believe in the existence of the syndrome or not is NOT the issue....the issue is whether or not based on the presenting symptoms, is there an existing medical diagnosis that explains those symptoms, and then once identified, prescribe the appropriate therapies/medication(s). Your attitude is repulsive and a disappointment to those who work directly in the medical profession.......PEOPLE LIKE ME!!!!!!

    Best wishes and good luck to all!!!!.......

    June 22, 2010 at 17:24 | Report abuse | Reply
  43. nina786

    ohh...is it genetic disease? i still don't understand bout this....

    http://www.seemeagain.com

    May 10, 2011 at 10:26 | Report abuse | Reply
  44. jual besi beton

    Oslo itself was a failure Arafat was ambushed by Clinton and Barak, when both presented him a deal that was much more favorable to Israel than to Palestine. In a nutshell, Arafat was presented with “a take it or leave it deal” either Palestinians had to give up their claims to most of East Jerusalem and forfeit their Right of Return, and in return Palestinians would “gain” a non-contiguous state on parts of the West Bank and the Gaza Strip, or the whole Clinton-Barak offer had to be rejected outright; which he did.According to Barak’s offer, the proposed Palestinian areas would have been cut from East to West and from North to South, so that the Palestinian state would have consisted of a group of islands, each surrounded by Israeli settlers and soldiers. No sovereign nation would accept such an arrangement-that could hinder its strategic national security and interests, The occupied West Bank and Gaza strip have more Israeli Jewish colonies and bypass roads than ever, The Oslo Agreement’s fundamental flaw was that it had attempted to scratch the surface of the core issues of the Palestinian-Israeli conflict, and not to necessarily solve them. Any agreement, similar to the Oslo Agreement, is destined for failure if it won’t address the core issues of the conflict, such as the Palestinian Right of Return, the status of Jerusalem, water allocations, and the borders of the emerging states.link to palestineremembered.com

    http://www.pusatbesibajamurah.com

    March 26, 2016 at 06:00 | Report abuse | Reply
  45. Cheryl

    I have had FM for about 6 years. The last two years have been Hell. My husband died in march of 2015 and the FM has gotten so much worse. When I get an attack,(I call it an attack because that is what it feels like). I am literally incapacitated. I can do basic things, but the pain is horrible to deal with. I do believe stress causes these attacks and to not have any stress you would have to knock me out. I feel for everyone here...even the ignorant and rude people that have made comments. It must suck to be so stupid. I am 59 years old and feel like my life is over having this disease. Hopefully there will be a cure of at least a way of dealing with this FM and not be dependent on narcotics one day soon.

    June 11, 2016 at 07:53 | Report abuse | Reply
1 2

Post a comment


 

CNN welcomes a lively and courteous discussion as long as you follow the Rules of Conduct set forth in our Terms of Service. Comments are not pre-screened before they post. You agree that anything you post may be used, along with your name and profile picture, in accordance with our Privacy Policy and the license you have granted pursuant to our Terms of Service.

Advertisement
About this blog

Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.