Questions and Answers About Fibromyalgia: Symptoms and Treatment
77A difficult diagnosis
I first heard of fibromyalgia while watching television. Another in a seemingly endless string of commercials touting the effectiveness of various prescription medications showed an attractive young lady complaining about pain. The promise of the commercial was that with this medication, the woman suffered less pain throughout the day. I thought to myself, “less” pain? That must be a particularly agonizing disease. Several months later a close friend complained of aches and pains that never subsided. She visited with several doctors and researched her symptoms extensively. It was ultimately concluded that she suffered from fibromyalgia.
Fibromyalgia is a medical disorder affecting approximately 2-4% of the population. 90% of those diagnosed are women, but recent studies indicate more men suffer from this affliction than originally believed. It is characterized by chronic widespread pain without an evident source, and a heightened and painful response to pressure. Other symptoms can include fatigue, joint stiffness and sleep disorders. Fibromyalgia is not contagious or fatal. It does not appear to damage the body’s organs, muscles or joints, but it is a chronic disease that can remain for a lifetime.
Not all symptoms are present in every case, making diagnosis tricky. According to Wikipedia, some members of the medical community do not even consider fibromyalgia a disease because of a “lack of abnormalities upon physical examination and the absence of objective diagnostic tests.” This reason is scant comfort to anyone suffering from pain on a daily basis. Regardless of current methods for diagnosis, the pain is real.
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Fibromyalgia pain and treatment
Questions and answers about Fibromyalgia
A friend of mine was diagnosed with fibromyalgia over a year ago. It took her doctors months and numerous tests to reach the conclusion that Deborah suffered from “fibro.” Since the onset of her symptoms, managing pain has been a daily concern for her. I asked if she would be willing to answer a series of questions about fibromyalgia and how it has affected her life, and she agreed to offer her insights. The format for this discussion was an impromptu email questionnaire for which she graciously supplied answers.
1. How did you get Fibromyalgia? Is Fibromyalgia hereditary?
There is still research that is being done on fibro to determine whether it is hereditary. There is a connection between arthritis and fibro. Fibromyalgia comes on slowly and is usually “brought on” by an accident, trauma or surgery. In my case it came on after I had a major surgery. It took over a year to get a diagnosis and fibromyalgia is considered only after all other tests have been declared inconclusive.
2. Are there different types of Fibromyalgia? What are your symptoms?
There is only one type that I know of. The symptoms and severity varies from individual to individual. What is consistent is the location of the pain. There are 18 points where the pain is located and to be diagnosed, the patient needs to suffer pain in at least 11 of them. These points include the outside of the knees and elbows; the shoulders and shoulder blades; and, the back and hips. My first symptom was a severe pain in my side and back that went down my leg, which is often a symptom of sciatica. An MRI and x-ray revealed that no nerves were pinched, but I did have two bulging discs and arthritis in my back. This is a separate issue from fibromyalgia but certainly added to my pain. The best way to describe having fibromyalgia is to compare it with having the flu: sore, painful joints and a feeling of aching all over. Fatigue may or may not be present, but being in constant pain can make sleeping difficult and can certainly make one feel fatigued.
3. Was it difficult for your doctor to diagnose your disease? Why or why not? What were the steps taken to diagnose Fibromyalgia?
The diagnosis took a long time and was difficult because so many other illnesses can have the exact same symptoms. That is why so many tests are given; so other serious illnesses can be ruled out. Doctors hesitate to make the diagnosis of fibromyalgia because it has become a catch-all phrase and the jury is still out as to whether fibro is indeed an illness. I had an MRI/x-ray, colonoscopy, pelvic exam, complete blood count (CBC) and physical therapy, and finally epidural shots.
4. Are you always in pain? How do you manage the pain?
I do ache every day. If I press on my joints they are very painful (which is why I don’t do that). Some days are more painful than others; those are the flair ups of fibromyalgia. There are several popular medications that can be prescribed for fibro and what works for one person may not work for another. So far I have been taking amitriptyline and it has helped somewhat. I can function normally and without a lot of pain. NSAIDS help with pain management as well.
5. How does it affect your daily activities?
It can be debilitating for some people, and I have days when the pain limits what I’m able to do. The worst thing to do is to stay in bed, so even though there is pain you have to push through it.
6. What offers you relief from the pain? Are over the counter medications helpful?
Over the counter NSAIDS do indeed help. Doctors are very reluctant to prescribe pain killers because of the potential reliance on these pills. Physical therapy also helps. I use yoga to strengthen my core muscles and water aerobics for exercise.
7. What are some factors that affect your pain, either positively or negatively?
You would think that activity would just make one hurt more but actually the opposite is true. Walking, swimming and yoga in addition to regular activities help prevent pain and spasms that make my muscles sore and tight. Not moving actually hurts worse than staying active. On days when there is a fibro flair up, rest is okay and I will treat it with pain relievers and ice/heat. I try to limit how much time is spent “lying around”.
8. How does your diet affect Fibromyalgia? Can changes in your diet affect it in either a positive or negative way?
Diet can play a huge part in how our body reacts to pain and all illnesses. You are what you eat. I don’t think there’s a particular type of food you should avoid, but you will feel better if you eat right. There are lots of books out there on what to eat for optimum performance.
9. What has been the best treatment for you so far?
Amitriptyline has been most effective for me. I was given anti-inflammatory drugs in the beginning, but this has helped the most. And as I said earlier, staying active is important.
10. What is one thing we should know about someone with Fibromyalgia?
People should be aware that the pain associated with fibro is very real and not imagined. No one can feel another’s pain or know what degree that pain is felt. Everybody is different and what may work for one person may not another.
Deborah, thanks for your time, it is greatly appreciated.
You’re welcome! Glad I could help.
Hope for the future?
As things now stand, managing fibromyalgia pain is essentially the best Deborah can do for herself. Medication and physical therapy are helpful for treating fibromyalgia symptoms, but there is no cure. Advancements have been made in the diagnosis and treatment of this disease, but no definitive answers have been found for the 3-6 million people in the United States alone suffering from this debilitating ailment. Fibromyalgia support groups exist for individuals looking to connect with others as they deal with a lifestyle limited by pain. They provide hope in combating a disease that yields little hope and few answers. These national and online groups offer information, feedback from medical experts and a place for members to share their experiences and insights. Meanwhile, the National Institute of Health has recently recognized the significance of fibromyalgia as a source of musculoskeletal pain and has allocated funding for research. Fibromyalgia is better understood than ever before, and more folks than ever are finding relief from their pain, but their battle isn’t over until there is a cure.
May 12th is Fibromyalgia Awareness Day.
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Because fibro is often difficult to diagnose and even more difficult to treat, the label has become a generic term for numerous, hard to define physical ailments. Just as the term, schizophrenia, is often a label for various difficult-to-define mental diseases.
The good news is the the N.I.H. has finally recognized that fibro is real and not imaginary and has begun to fund research.
Thanks for this well-written hub, Mike.
Hi, Mike first of all let me say what a good article, not many people know about this or the symptoms, so this was great. I had been diagnosed with thyroid problems back in 2003 and this was hyperthyroidism which is the worse one because it goes so high it can kill you if you have an accident before coming back down to normal level, but my point is that they gave me Carbimazole to bring my thyroid down, and the pain was indescribable. The doctors didn't know what was wrong with me, but to cut a long story short, I diagnosed myself and read a book about it, I told the Drs and they gave me something else. but at the time I had excrutiating pain in the top of my arms and underneath them, my back and my legs, I felt like I had been run over. when I explained this to the specialist, after not being able to get out of bed for a month, he said that the tablets had brought on fibromyalgia, and it should go when I changed my tablets. Well luckily enough it did go, but the pain was terrible so believe me when I say, yes it is real, and well done for bringing it to our attention like this, thanks nell
Kim, thanks so very much for your comments. Fibro is such a tricky disease to treat, and the results are mixed, at best. If the most successful treatments out there still leave someone suffering from pain every day, then there is clearly a long way to go. Deborah is also affected by the cold--Kansas winters aren't like the winters in Canada, of course, but she is appreciative when we get mild winters here. I know that even when Deborah attends her water aerobics classes, if the water is too cold or it's too chilly when she gets in or out of the pool, her muscles tighten and it becomes counter-productive. So, even when she's trying her best, things can affect her negatively.
Kim, I am so thankful you have added your story to hers. Your comments and insights certainly add value to this article, and hopefully more and more people will become aware of what fibromyalgia is and how so many people suffer from it. I am always appreciative when you stop by and read my work. Thanks again.
Mike
Drbj, thanks for stopping by. The difficulty in diagnosing fibromyalgia seems like it can be a double-edged sword; doctors are sometimes reluctant to diagnose fibro, and then on other occasions it becomes a catch-all diagnosis because of symptoms it has in common with other diseases. It's almost a no-win scenario. Its validation from the NIH hopefully will be a boon for those suffering from fibro--at least someday.
Thanks again, I and glad you stopped by and offered your insights.
Mike
Nell, thanks for stopping by. Causes of fibromyalgia and most extraordinary, as your own example demonstrates. I am hardly an expert, but my friend had surgery and fibro ended up a by-product of that procedure. As she indicated, it took about a year for doctors to come to this conclusion, and in fact she read a lot about her symptoms and wondered if fibro was the diagnosis. It sounds as if you came out okay if changing your medication helped the situation. But, yes, anyone who suffers from it will certainly attest to fibro's existence (and pain).
Thanks for stopping by and adding your own story and insights--it makes it even more clear what an odd and unpredictable illness fibromyalgia truly is. Take care.
Mike
Mine came on after a c-section. I take a daily nerve pain medication, and that has made all the difference. It doesn't work like a generic pain killer- there is no "high", though there are a few mild side effects. There is still some pain, but it is quite manageable now.
What made perhaps as much difference was cutting out aspartame (NutraSweet). I read on WebMD that it can aggravate the condition, so I cut all of it out of my diet for a week to see if it helped. WOW. It helped so much after just three days that I just couldn't believe it. I was in pain in bed every night and had been for years, even with my pain mediation, but I'm not anymore. I don't have the shooting pains every day and I don't have muscles that lock up for no reason very often anymore. It's been like night and day.
Mike - another stand-out article, both comprehensive and sensitive. I have personally had great pain relief by adhering to the rainbow foods anti-inflammatory diet put out by Dr. Perricone - highly colored foods like the ones in the picture above, also wild caught salmon. (books are available). Fibro is linked to the immune system that's why it is often onset after trauma or surgery. Also a great new product, but a little pricey, is Nopalea Cactus Juice. I drink 3 oz. daily. Another is Noni or Acai. Both power pack anti-oxidant and therefore anti-inflammatory. Please pass on to your friend. L
I was just diagnosed with fibromyalgia after years of pain. It took that long for someone to take me seriously! It is clearly something that needs more attention in the medical community and I am glad to hear that there is now funding for it. Great article!
It's hard for me to believe that it only effects 2-4% of the population. I believe there is a larger percentage that have just learned to live with the pain because either they don't have insurance or don't like to go to the dr. I have suffered from it for well over 5 years and my very dear friend has suffered longer than me. I am able to dull the pain by taking no more than 3 pain pills a day and I walk. Your friend is right you have to keep moving. Thanks mike for the thoughtful and well written hub.
It is an awful painful disease. One of my sisters has it. A neighbor has it. One of my nieces has it. It seems I keep running in to people who have been diagnosed with it. I know my sister struggles with it daily and nightly. She will push herself though, she says, "I hurt anyway!" But when her grandchildren spend the night she suffers so much more the next day. I know how hard it is to not play with the grand kids. I believe I would do as she does. They are so worth it. Great hub, thanks!
Beaker, thanks for stopping by. I will certainly ask my friend if she uses NutraSweet--perhaps it is something she could do to help her manage pain, as well. I appreciate the suggestion, and I'm sure others who read this will be thankful for your comments, as well. Thank you very much, and take care.
Mike
Couturepopcafe, thanks so much for your comments and insights. I will certainly tell my friend what you have suggested and see if perhaps some of these ideas can help her better manage her condition. While she is aware that improving her diet can help with managing fibro pain, I will also alert her to your suggestions.
It is also wonderful to find so many helpful ideas here that others who read might be willing to try. The suggestions you and others have made here have enriched the quality of my article immeasurably, and I am thankful. Hopefully this page can become something practical and useful to anyone who reads it that suffers from fibromyalgia.
Thanks again. I appreciate your insights a great deal.
Mike
ThreeFootHat, thanks for stopping by. It took my friend well over a year to be diagnosed, and it unfortunately sounds like this is quite common. Hopefully research will help uncover new ways to recognize fibro as a unique disease with distinct causes and symptoms. Because there is no one method for diagnosing fibro (and because the symptoms resemble other ailments so much), it is far too easy to overlook fibromyalgia when making a diagnosis. With some funding for reasearch, perhaps others won't have to go undiagnosed for months and years.
Thanks again for stopping by. I hope you are doing well.
Mike
Judicastro, I agree with you completely--I suspect there are far more people suffering from fibromyalgia than have been diagnosed. Some studies indicate there are more men that suffer from this than originally believed. If one were to assume that the ration of women to men were 2:1 instead of 9:1, that would add a few million more to the ranks, just by understanding that men suffer from this, also. I would certainly believe the numbers are skewed by inaccurate diagnosis or, as you suggest, folks who don't have health insurance and/or learn to live with their pain.
We can still hope that the situation improves, at least.
Thanks for reading. Take care.
Mike
Dardia, thanks so much for your touching response. It is a shame that fibro affects your sister so much she must struggle to play with her grandchildren. It is good that she pushes herself--exercise does help. And, you're right, it seems as if a lot of people are affected by fibro. It certainly suggests that there are more than 6 million people suffering from it. It needs to be better understood so that more people can get help. Hopefully that will happen someday soon. It is a scary thought to think that any ailment that causes pain can have no cure.
I hope better times come soon for everyone. Take care.
Mike
predisposing factors are stress, too much activities, over-weight, but not necessarily obesed (based on body Mass Index- BMI). Prophylaxis, constant exercise, W.H.O standard warrants walking or taking a stroll 10km every week. Then as for the 'busy' persons, try out massage at least once in two weeks or for those who have time and resources, at least once every week. More research is underway, but for now, you stand a great chance (about 97%) not to acquire the disease if you do these, whether you are meant to get it or now. Great hub...
Mike, Thank you for so clearly defining the condition Fibromyalgia Symptoms and Treatment. I must tell you my next door neighbor has this painful and annoying condition and I have yet to fully understand it as when she talks about it is sounds like an array of so many different things. Thanks to you I get it and now feel much better about hearing my neighbors concerns and providing more supportive feedback. Great report! Peace :)
D.Virtual.Doctor, thanks for your comments. Hopefully folks will read your comments and learn that positive actions can minimize the likelihood of getting fibro. It is certainly beneficial to live an active and healthy lifestyle, limiting the chances of getting fibromyalgia or another ailment. Thanks for stopping by and sharing your knowledge and insights with us. Take care.
Mike
Katie, thanks for reading. I will confess it confused me as well, and this was a major reason I went to my friend and asked her to explain it from her own perspective. There are so very many possible symptoms, it seems difficult to know what is fibro and what might be arthritis or another ailment. I am pleased to know that you got something out of this article. Thanks again for reading. Take care.
Mike
This is an awful sickness. Your hub is very well written and has many good advices! Thank you!
Mike, as always I am impressed with your ability to pinpoint a needful topic and cover it with excellence..I know people (yes, more than one) who suffer with fibro and it is as difficult emotionally for them as it is physically. My husband (a doc) calls it the mystery diagnosis because studies show it is a real chronic illness, but there are still so many unknowns about it, which causes some who do not understand to label it as "not real" pain. This is one of those hubs that gets bookmarked - just as a reference to those who need to know more about it and also for those who need to know folks care...thnx
CS
Thankfully I have no personal experience with this disease, but I have encountered several people who said they were diagnosed with Fibromyalgia. I never really understood what that was except that it is painful. I too had heard it said that Fibromyalgia was a catch-all for anything the doctor could not diagnose conclusively. I'm glad some progress is being made on that front. Thanks for a well written and very clear explanation of just what Fibromyalgia is!
Thank you for writing this hub. It is always so validating to know what others who live with chronic pain are going through. Your interview really helps clear up some misconceptions people may have. Well done!
What a totally comprehensive hub about fibromyalgia.
Thanks for sharing Mike.
Rated up and useful!
Irenemaria, thanks for reading. I appreciate your comments about my article. Fibromyalgia is a dreadful ailment. Thanks again.
Mike
CS, thanks for reading. You addressed one of the most significant emotional issues for people with fibro--the belief that the pain is "not real" because it is difficult to diagnose. It is certainly real and it affects every aspect of living. This is one reason why support groups for fibro are so important--the emotional support cannot be understated.
Thanks for offering your insights; and for your kind words. Take care.
Mike
Allan, thanks for reading. Fibro is obviously a complex disease and makes both accurate diagnosis and treatment a tricky situation. The one constant is that those who suffer from it are in pain. That's why additional research is important--something has to be done to help folks suffering from this.
Thanks again for stopping by, your comments are greatly appreciated. Take care.
Mike
Theresa, thanks for reading. I have never experienced the pain of fibromyalgia, but when my friend consistently told me she was hurting, I knew this disease was bad. She could describe her situation far better than I could, and I think her words are helpful and important.
Thanks again for stopping by.
Mike
Jill, thanks for reading. I am appreciative of your kind words. This is an important subject that needs attention. Thanks again, and have a great weekend.
Mike
Wow, well I have good news and bad news. I was at over a year, (my husband thinks closer to two) with this and I got on the Mango stuff, I got that lady who got cured of cancer stuff and none of it helped me, I hurt so bad I wouldn't cared to die at some points. I would get out of bed and had to take several steps before I could straighten up. I don't know what brought it on but it was after my mother had an accident and there was a lot of emotional stress. Maybe that could cause it, I don't know. I was in bed almost always, I got up to do what I had to do and hurt from head to toe. I started reading about herbs and I already was taking fish oil which took care of a knee pain years ago, but now I have every herb there is I think and glucosomine(with MSM even better)helped me a lot too I knew but I have a problem with high blood and allergic to so many of those meds I had to go off that because I found out it can elevate blood pressure but the pain has not come back. Apple cider is wonderful, I could feel it working in just a few days; get the fresh and it is not made all year round so I freeze it for winter to put in my smoothies. I put mixed herbs in salads, over foods, cereal even, try to always use them raw or I do, but I add to fish or chicken I bake. I make a kale smoothie, herbs in it too, I have the recipe here, if you are on blood pressure medicine celery seed you may not want to take because it is a diuretic, but I use it for that reason. I can't even imagine what I spent in the year or more so the cost of these herbs are nothing, last forever and I grow some of my own.I got better from the pain well before my stress went down which has just been lately. Look up herbs online and get ones that fight inflammation. Or just use almost all like me. I use a combination of teas(decaf),mostly green but I mix in white,chamomile, grey... make enough at once for a week, sweetened with honey. If anyone can pinpoint the one thing here let me know but I will go on doing this forever I guess. I am talking about herbs you use in the kitchen not like valerian etc you get at the pharmacy which can go against certain medicines you take. I also take a vitamin and calcium, magnesium is good also I have read but I am allergic to that too. Believe me it hasn't been easy but i am there and I know it will at least help you but it may take a few days little by little, I don't remember getting well overnight.
I promise you this is true and I am not running races or anything that great (but still hoping to!) it just seems to be gone. I have some normal aches now and then but I think walking helps that better than anything. At least give it a try!
I bet Mike won't write any more women related hubs!
Polly, thanks so very much for sharing your story. It seems as if different things help different people, and the beauty of an article like this one is that so many people are willing to leave comments that describe what has worked for them in the past. Fibro seems to be just as had to treat as it is to diagnose. The fact that you found something that helps is terrific, and I hope other people who suffer from fibro will read your words and try what you have suggested.
I greatly appreciate your sharing your insights, and I hope many others will benefit from them. Thanks again.
Mike
Good informative article about fibromyalgia. Rating this useful and up!
this is once again an awesome explaination of said disease, and no it is not in your head, I know of many firends with fibro and while they "lead" active lives, when the pain is there, then there is little that they can do, still this si such a good hub since it gives almost to a "t" what my firends tell me about Fibro, brvo Mike, many blessings to you.
Peggy, thanks for stopping by. I appreciate the comments and the ratings. Take care.
Mike
Rebecca, thanks for reading. One of the biggest tragedies of fibromyalgia is the idea that the pain is "in your head." Anyone that suffers from this ailment will say in no uncertain terms that it is not. It really is a painful, debilitating disease and I hope that the day will come when a cure is found. Thanks again for stopping by.
Mike
Fibromyalgia is new for me. I never know about kind of disease before. But I learn much from you. You don't just come up with the type of disease, but you also come with solution. I love it. Vote up.
Prasetio
Prasetio, thanks for stopping by. There is still much to be learned about fibromyalgia, but hopefully articles like this can increase public awareness of what it is and how it affects those who suffer from it. Other folks who left comments here have offered wonderful suggestions for relieving pain caused by fibro. Hopefully we can learn more and someday find a cure. Thanks again for reading.
Mike
I started to answer this days ago and it was so long I decided to make a hub,now I decided not to, lol and although I did not have it diagnosed by a doctor I know that is what it was and it took a lot of searching to know just what it was with help and I had it about 2 years, at times I just wanted to die, feeling like an old lady, when I got out of bed I had to walk several steps to be able to straighten up. Also I was mostly in bed those many months, I got up when I could to do what I could, I hurt from head to toe. I am now over it and not skipping rope but I got into so many things... xango(or something that sounds like that, also green stuff that other lady that was cured of cancer with all the green stuff on commercials, expensive too and did me no good. It was costing me a fortune and doing nothing. I first tried holistic stuff, had allergic reaction to most of it, expensive too. Then I got into herbs, all kinds there is (some you have to read up on like celery seed is a diuretic,(have to watch if you take fluid pills) glucosomine(with MSM even better)I was already taking fish oil which had taken knee pain away years ago, calcium, one a day vitamins, vit B liquid drops, vit D. Now it sounds like this might cost a fortune but it really doesn't, it lasts a long time and each week I got a little better and I do believe I am over it but I can't point to one certain thing. I eat either toast with natural fruit with a mixture of herbs or cereal with it in it and honey and I do use celery seed to lower my blood pressure, I don't take fluid pills. So anyway there it is and anyone with the pain knows it is worth a try and although I can't pinpoint or know a certain thing all these herbs are good for you and can be added to salad and every meal. Look online for ones for inflammation. I now grow many myself, especially rosemary is easy and is like an evergreen you can use all winter they grow into hedges and the herbs buy at the grocery store,but I am going to dry some soon and get into bottles.
Polly, the road back for you sounds like a difficult one, and I'm glad you found a way to ease your pain. It is horrible to think that it took more than two years to find what might help. It sounds like you tried many, many things. My friend has good days and bad days, but most of the time she can at least get around now. I truly feel for those who struggle to even get out of bed.
Thanks for sharing what works for you--hopefully it will help anyone else who reads this. The information you offered might have made a good hub. Hopefully it will be well read here, instead. Thanks again.
Mike
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prey 19 months ago
Hello Mike. What a great forum to validate what honestly many do not believe Fibromyalgia is real, but rather just an indication of not enough exercise or it's all in your head!!!!!!!!
I don't say this for fun. I am a Deborah too, Almost identical, and Deborah thank you for sharing this as most people do not know what Fibromyalgia is or further absolutely have never heard of it.
I will be 44 in a week, and was diagnosed at 30, after a year of 'lets try and see if it;s this', oh fun. I have 16 points and it's tough many days, this I understand so well. I was on MSContin [morphine] for quite awhile, but when I went into recovery I had to stop all mind altering chemicals completely. Nevertheless, I suddenly had enormous pain, and no means to numb it, I do not exercise ever. I hear you, that it helps, but I just can't bring myself there, which is ridiculous, but who knows, change is always possible.
Lastly my biggest trigger for a flare up is when I get cold. Up here in Toronto there is lots of cold and most winter days I stay at home.
No need to go on about myself, but Deborah I hear you, and Mike what a fantastic Hub, good for you, Your delivery is always inspiring and so creative, like everything I am so proud to read of yours.
Thank you both, about to share you everywhere!
Kimberly [oops and prey]
I love May 12 - never knew!!!!!!