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February 15th, 2011
07:08 PM ET
Get Some Sleep: Fibromyalgia raises restless leg riskLisa Shives, M.D., is the founder of Northshore Sleep Medicine in Evanston, Illinois. She blogs on Tuesdays on The Chart. Read more from her at Dr. Lisa Shives’ Sleep Better Blog.
I wasn’t surprised because a recent study published in the Journal of Clinical Sleep Medicine shows that adults with fibromyalgia have a much higher prevalence and risk of RLS than adults without the condition. The study analyzed 172 people with a diagnosis of fibromyalgia. The mean age of participants was 50 years; 93 percent of the population was female. These patients were compared with 63 healthy subjects with a mean age of 41 years. Fibromyalgia, a disorder that causes significant pain and fatigue, was identified by self-report or review of medical records and was confirmed by authors of the study. RLS, a sleep-related movement disorder, was diagnosed using a self-administered, validated questionnaire, which is the only way to diagnose this disorder. RLS is what we call a “clinical diagnosis,” meaning that there is no test that confirms or excludes the diagnosis. Results show that the prevalence of RLS was approximately 10 times higher in participants with fibromyalgia than in the group of control subjects. Participants suffering from both fibromyalgia and RLS reported an increased amount of sleep disruption, compared with their peers who suffered only from fibromyalgia. The outcomes of the study indicate that a great deal of the sleep disruption that occurs in patients with fibromyalgia could be caused by RLS, but doctors have to think to evaluate this or patients have to explain very explicitly what they are feeling when they toss and turn and can’t go to sleep. Although the cause of fibromyalgia is unknown, we know a little more about RLS (see my previous blog on RLS). We know that the antidepressants used to treat fibromyalgia may cause or exacerbate the RLS symptoms. Many times though as we help the patients weigh the good and bad sides to this medication, they decide that the Cymbalta has such clear benefits that they elect to stay on it and add a medication for the RLS. That is what Kim and decided to try for her after we did a sleep study that showed that she had significant periodic limb movement disorder, one that is often seen in association with RLS but can be occur without RLS. The RLS was preventing her from falling asleep; she typically tossed and turned and rubbed her legs for one to two hours. Then when she was asleep, the leg movements continually disturbed her sleep by causing arousals on average 30 times per hour. Now that her RLS is well treated with a low -dose dopamine agonist (that is a synthetic analog of a naturally occurring neurotransmitter), she is a new woman. Improvement in her sleep seemed to help lessen her FM pain even further so now she is able to exercise more which in turn seems to help her sleep better. |
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Kim is a 44-year old woman who came to sleep clinic to investigate her fitful and unrefreshing sleep. She has also suffered from fibromyalgia, or FM, for many years and has always assumed that her poor sleep was due to the fibromyalgia and that the best thing was to try to treat the FM. She has been on the antidepressant Cymbalta for about one year and felt remarkable improvement in her FM symptoms. However, she feels that her sleep is even worse. Upon further questioning, she did meet the clinical criteria for restless legs syndrome; she 
I have suffered from RLS for years. I have read many articles on how to treat it without medications. Two months ago I began a calcium/iron regimen that has changed my sleep drastically. I take one Slow Fe iron tablet at night with 600mg of calcium (with added Vitamin D) and another calcium mid morning. I also take 4,000 IU of Vitamin D daily. I can't even express the difference this has made. I have been RLS free for these entire two months. Absolutely amazing!
Thank you for mentioning this; the relationship between low iron levels and restless leg should have been brought up in the article. Low iron levels are not unusual in the fibromyalgia population because many of them are young women (who regularly lose blood via their menstrual periods). Patients with restless leg (men as well as women) should have a blood protein called ferritin checked. Ferritin levels reflect overall body iron stores. If the ferrtin level is low, they should be placed on an iron supplement. which in turn can improve restless leg. However, because iron stores are slowly built up, it may take several months of treatment before the restless leg improves.
I'm one of the minority of men who has both FM and RLS. Iron may have helped to many, but it would be harmful to me. I see a rheumatologist regularly for FM and other autoimmune disorders. RLS and sleep apnea have been confirmed by multiple sleep studies. But I also have high ferritin levels. Ferritin level is one of several tests used to determine iron stores in the body. High ferritin in my case has been linked solely to inflammation, all other possibilities having been ruled out by a battery of hematology tests. So taking an iron supplement for me is clearly contraindicated.
Consult your doctor(s) before taking dietary supplements, especially with an already complex set of symptoms. They are medicine too, and carry risk just as prescription drugs do. For me, increasing my iron would actually exacerbate my condition.
Here's a great tip to help you fall asleep fast and deep: play sounds of nature in the background and listen actively and attentively to every nuance and subtlety of such sounds. Natural sounds are fluid, yet very random and so when you listen carefully you tune in without being able to anticipate any patterns. This increases your concentration capacity, and thus your ability to let go of other thoughts that might be keeping you from relaxing and thus falling asleep. You can get such mp3s for download at a site called Transcendental Tones. This technique also works wonders with little kids, who are somehow instinctively drawn to relax to the sounds of nature.
Potions, pills, superfoods, superremedies, therapies are all short term fixes but not long term healthful solutions
Look at this video and this mans work for more information on practical tips to live healthfully and make a science of it
True. Vigorous exercise, plenty of good food and rest, sunshine and love and purposeful life should get you great sleep every day. Look at this mans work and you will learn the practical ways of making those traits work every time.
[youtube=https://www.youtube.com/watch?v=q8V3R4RLKQ8&w=640&h=360]
http://www.foodnsport.com
Cymbalta is a funny drug, for some it's a blessing, for me, it slowed my metabolism to the point where my body nearly stopped processing things and shut down. But that's the great thing about medicine – if you go into a new drug knowing what can happen, you know when to stop it if you get side effects you don't want. (I wouldn't have minded getting say, an energy boost or a weight loss side effect!) So I knew to stop taking it. 4 days later, my metabolism was back up to it's usual crawl. They marked it as an allergy in my chart so that I can't accidentally be given anything like it, a warning will come up and we have to talk about it.
I am taking Requip for RLS, and it does help. Again, I've heard it's the same sort of thing, for some people it's great, for others it's awful. I'm lucky with this one. I could probably go up a dose, I do notice the RLS wakes me up sometimes...My doc wasn't at all surprised when I came in complaining of this a few years ago, he actually said he was surprised I hadn't come in for it sooner.
My S.O.'s PLMs and snoring are so much worse than my RLS by comparison, if I only had my own things to deal with I think I could sleep just fine! I really don't see how people can sleep through their own snoring when it shakes the bed and makes the pets stare at them with that "WTH noise is that coming out of you?" look on their faces. A real Kodak moment when he woke up to the pets on the bed staring intently at him. "what...?"
Cymbalta reduces the transport of carnitine into cells by 85% (through the octn2 transporter) By the time carnitine gets into tissues it has gone through that transporter a couple of times, and has also been lost through the kidneys. Have you checked if patients with RLS have a higher percentage of cymbalta use? In some patients, cymbalta could make muscle pain worse through this reduction in carnitine. Carnitine is critical for fat metabolism in muscle, and acetyl-l-carnitine helps brain and neuron energy generation. Carnitine or acetyl-l-carnitine can be supplemented if it is problematic.
Sharon, sounds like you need a sleep study for obstructive sleep apnea OSA, I am a retired medical professional and also an OSA patient as well as FM and RLS, get checked out, you may find that treatment for OSA makes your FM much better. Good luck!
My wife had fibromyalgia and RLS. Check to see if you are Celiac. She went on a Gluten free diet and everything went away. Its been 5 years and no recurrance. Just a thought.
Same story. FMS turned out to be a bad diagnosis, it was celiac. She is less than 6 months since diagnosis, but a wide array of health problems are improving, including RLS and PLMD. It only took 12 years for dozens of doctors to figure it out, so we aren't expecting an instant turn-around. The one who did diagnose it, figured it out within ten minutes of actually reading her medical history and asking questions. the others were either poorly educated about celiac, looking for their favorite diagnosis, or both. The doctor who diagnosed it was referred to us as a Lyme specialist, so this was not her finding her favorite diagnosis.
I agree. I was first diagnosed with fibro. Placed on a bunch of drugs that didn't help. About 5 years after that, I insisted on being checked for issues with gluten. Celiacs have damaged intestines and do not absorb nutrients properly. Poor nutrient absorbtion can cause all sorts of issues with pain – just look at rickets and scurvy. I can't help but think fibro is really nutritional deficiencies.
Some 5 years ago I began to feel quite ill and could hardly work or go out. For a period of 2 years I was prescribed all sort of drugs for all sorts of things. I couldnt be touched by anyone I was so much in pain and I was always tired, and exhaused. I also suffred from what I often hear people refer to as 'fibro fog'. I missed my old self – I wanted ME back. Then three years ago I was so ill I spent a year in and out of hospital without anyone being able to identify what was wrong. It was so hard on my family as they used to see me in pain and knew something was wrong but no one knew what. I had so many x-rays and MRI's and so many tests, than after they couldnt find anything wrong with me a doctor stated that most likely I had FM. This was after I spent 2 months in bed with sever muscle spasms (this was the 5th time I was admitted to hospital – i just couldnt walk). Each time I was in hospital I was put on a drip and I felt great – and even joked that would love to take it home with me...and this got my husband thinking that maybe all my ills were related to my stomach, that I had some sort of virus / fungus that was triggered by what I ate – he would say 'when you feed the fungus you get sick'. I decided to take control, realising that all that medication that I took was pointless. I took 3 months off work and spent the time doing research. I decided to focus on the food I ate after having taken so much medication without any sucess. I started off with a full detox having only chicken broth, salmon and water for 6 weeks and scrambled eggs for breakfast. I then started to introduce food items one by one. I usually feel the affect of FM within 30 min of eating an item so it was easy to elimitate food from my diet which doesnt agree with me. The major food item which I have cut out is Gluten, as well as aspertaine. I completedly elimited soft drinks, bread, pasta, ice-cream, energy drinks, juices and food which are highly processed and which contain gluten. Now and then I have the desire to eat a nice plate of pasta........the results are immediate. I usually end up with sever pains (mostly in my hands and thighs – my fingers have a habit of becoming contourted and I am unable to grab or hold anything in them) and am unable to sleep for at least 2 days at a stretch. Now after having changed my diet I am no longer on any medication and have returned to work on a full time basis as well as working a part time job AND a freelance job in my spare time. I feel I am getting my old self back and dont feel like I am in a daze (....that someone has put a screen over my brain) anymore. Three years ago I couldnt dream of working again and being ME again.....but with the change in diet it has all changed. I could continue to write so much more but I know that anyone with FM knows how I feel.
Here is my $.02 cents worth based upon observation (anecdotal) of my patients over a 10 year period:RLS seems to worsen as intake of artificial sweeteners increases especially aspartame and saccharine. When they discontinued or decreased their intake, symptoms were reduced. Worth a try? I think so!
Curious. Do you have any indication whether that applies to sucralose (Splenda) too ? I wish I'd been paying attention when I switched. Now I can't be sure when my RLS improved, as it relates to going from aspartame to sucralose.
I heard it acts like a poisen in your body. Gluten too. Just about everything manmade! Go Figure! Glad to see all of this posted!
Hard to know what to believe about FM and/or RLS. I don't want anyone to suffer, so whatever the underlying cause ... i hope people who suffer with these conditions find relief. That said, lets look at the first 5 comments here. Already we have people ascribing it to calcium deficiency, vitamin D deficiency, gluten intolerance and aspertame. In just 5 comments it's a survey of the top "alternative" / conspiracy boogie-men. How long until we get people chiming in with power lines, cell-phones/wifi, flourinated water, BPA and HFCS ?
I didn't say it was a deficiency....I said this is what helped me. Perhaps it was a deficiency for me specifically. (Had my Vit D tested and it was 22, recommended to be above 40 and since taking the supplements it's now 41). In any case, it's a natural treatment. Moreover, ingredients in Tylenol PM or Benedryl make my RLS 300% worse...almost unbearable for hours. So there is a definite brain or chemical receptor connection to RLS as well.
I was diagnosed with FM in 1997 and did not believe that such an illness was real. was told that it wasnt caused from depression, but through not enough sleep or not 'good' sleep. the antidepression tablets helped me to sleep, got rid of the pain for a while, but also turned me into a zombie.. restless legs followed , so I stopped all meds and try to carry on as 'normal'. no one believes that there is something wrong. I went through test after test to find a solution, but still nothing. Detox diets help for a while, a day or two, antinflams, no good.. if someone can come up with a solution that would be great. by the way I was treated by the top FM specialist in the world. ten years later I went back to him out of sure desperation and was told, just by talking to him that I still had FM.
maybe its the house I live in..old, could be full of mould and fungus that cant be seen,, maybe ists the underground river that runs under the house.. been here for 16 years.. my dog even limps and has no energy.. think I have to move..
I have fibromyalgia and while there are no lab tests there are other things used to diagnose it including 11 pressure points. here are places on my body that even the slightest pressure feels like I'm being touched with a hot knife. Sometimes just taking a shower feels like I'm standing in a shower of hot needles. And wearing clothes is impossible. It's not like that all the time but there are days...
I have suffered with it for over 20 years. Wasn't diagnosed until about 10 years ago. I first began to notice it when I would come in from work and immediately go to sleep. I was exhausted all the time. I used to be a runner and a swimmer but nothing I did helped. It got so bad I would just cry I hurt so much. Irregardless I went to work every day – sometimes I was so tired I don't know how I got out of bed.
Luckily I qualified to retire so rather than go on disability (which my doctor recommended) I just retired. I feel like I have a bad case of the flu – every day – all the time. Try getting on with your life feeling like that.
I would never wish this on anyone but at times I do wish people like you could live in my shoes for just one week. See what it feels like. See just how well YOU cope with it.
e-mail me..and I will help...Drcub1908@live...
fibro is not real
he will help you all right... he will help you empty out all the money out of your bank account.
Let me guess...you don't believe in Autism either?
Jim, do the world a favor and go play in traffic.
Jim : I am 27 years old, and was a paramedic for the passed 9 years until my body began to hurt so bad I wanted to put a gun to my head and pull the trigger. Fibro and Ms are very real and very painful. This illness has effected me in the most neg. ways. I lost my cars and my house because I would become so weak that I would fall down unexpectedly. At night, both my legs feel as if their on fire and will not stop hurting. Mri and Blood work are the only two tests that I know that can physically detect these two illnesses. I have so many legions on my brain I doubt I be able to make it another year. It is people like yourself who backup the statement : If you don't have it, you will never know what it is or understand it.
I've discovered a great secondary treatment for RLS, FM and depression. It's called EXERCISE IN THE OPEN AIR. I've had these and other ailments creeping up on me since I moved here from the tropics, so much so that I concluded that "cabin fever" is a very real medical syndrome. I have resolved to go out on long evening walks around the neighborhood at least 5 times a week (even if it entails bundling up for an Arctic expedition), and I have felt MUCH better about my health, my physical condition and my general mood. You don't need to knock yourself out, just do what you are comfortable with. Humans were never intended to hibernate like rodents or to live in shells like mollusks. I am now convinced that ANY lifestyle that is so repressive that it keeps you indoors and to yourself is fundamentally against the laws of nature, patently unhealthy and not worth pursuing, no matter the money involved. If your neighborhood is so bad that you can't walk about, you need to consider some SERIOUS life changes.
Jorge, interesting that you got sick after you moved from the tropics. There's a doctor doing research in AZ, who believes that diseases such as fibro, chronic fatigue syndrome, lyme disease, and lupus are all related. One of the things he noted is that people who have lived in tropical climates all of their lives typically don't get these diseases (or maybe that the incidence of them is markedly lower). He believes that this is because those living in tropical climates are exposed to a lot more sun, and very high amounts of Vitamin D, which really help to bolster the immune system and has other beneficial preventative effects–and a lot of people living in other climates, given our modern lifestyle, are actually walking around with very low levels of vitamin D in their bodies (people don't realize that their vitamin supplements provide a tiny amount of the vitamin D, even compared to what you get from 10-15 minutes of exposure to the sun).
I'm 24 years old. My mother has it, my grandmother had it, my aunt has it. I am neither fat nor nuts; I'm trying to get my Master's degree and work at the same time as being completely exhausted. I try to eat healthy and sleep at decent hours and exercise when my body allows it. Don't you dare treat this as a nonexistent disease. I deal with it every day and I tire of trying to explain it to ignorant people like you who refuse to see the truth.
again...e-mail me...drcub1908@live.com...
it is not real, it is symptoms not a disease...you have never corrected the problem...you are just chasing symptoms
Why bother? You are just trying to sell something. That much is obvious.
If you're a doctor, then tell us where you got your medical doctorate, where you practice, and where we can verify your credentials.
Fibromyalgia I.B.S. Migrains and a host of other anxiety depression related illnesses have really lined the pockets of Doctors and pharmaceutical companies. Once you get to the botton of your depression and suppressed feelings ...Trust me all these horrible false symptoms will subside....
False? How can you possibly know that? Just because you don't believe, or can't discern from the facts being presented, doesn't mean it's not real.
Again, blaming the patient isn't the answer here. I know, having been through all the shot-in-the-dark therapies, including the ones you are suggesting. For me it was a waste of my time.
Then explain to me, TP, why I get migraines despite my low-stress, depression-free life? No debt, a happy marriage, a good job, no kids (by choice), and a lot of vacation time. My life is pretty awesome, and most people figure I'm the happiest person they know. And yet, migraines, like a hot iron rod through my skull, strike me out of nowhere. In fact, some of the worst ones I've gotten have hit me when I'm having the most fun.
Don't talk about things you don't understand.
As a former migraine sufferer, I truly empathize. The times I've spent in the fetal position in total darkness, absolute quiet, medication, and yet there is extreme searing pain (even the tears become painful).
I've learned that your body is telling you something IS wrong, and it is up to you to pursue the issue (medical doctor, psychologist, chiropractor, neurologist, and even a nutritionist). I too was considered by all to be extremely happy – but the truth I was even hiding from myself is that I creatively buried some problems instead of facing them head on. Also consider your environment – I moved away from the city, took at 80% oaycut and now work in the country.
I no longer think those six-inch curbs are three-feet high. Gone are the days when taking even three-inch steps were excrutiating.
I did note that your post doesn't mention diet and exercise. Consider looking into a colon cleanse for worms. I know it sounds fantastical, but worms are throughout your body eating up all the good nutrition you put in your body and all you get is worm sh_t. Also, if your using any soy products get off all of them except the soy bean (edamame). Soy coats the intestinal tract and won't allow the nutrition through the intestinal walls – some even become animic (sorry about the spelling).
u must be doing something wrong in following healthy life style, especially something related to food, may be u r taking food with lots of preservatives, alcohol, diet deficit of fibre......... iam an ayurvedic doc from India...... i dont know who u r and u dont know me..... but out of humanitarian concern......if u wish .to follow......i can give u some tips of ayurveda free of cost.....without expecting any returns to cure u of your migrane.....please let me know....nimishakshna@gmail.com
Since there is no such thing as Fibromyalgia, there's really nowhere to go from here. You're doing yourself a disservice by allowing yourself to be held hostage by this "syndrome." There isn't a single medical diagnostic that can recognize it. Diagnosing it amounts to holding a divining rod over a patient and saying "I don't know what's wrong with you and my resistance has been beaten down to the point where I don't have the energy to say what I really think. So you have Fibromyalgia. Please pay your copay on the way out."
You are clearly uninformed and ignorant and should consider not commenting on things you obviously know nothing about. One wonders what kind of sadism you suffer from gives you pleasure from demeaning the suffering of others with your pathetically ignorant commentary.
Because of significant Dopamine depletion and rise in Substance P in the spinal fluid of those suffering from Fibromyalgia, science is on the verge of developing definitive testing for this syndrome. i won't explain more, as you probably wouldn't understand anyway.
When I read such profoundly ignorant and intentionally demeaning statements, it makes me wish that you would be blessed with the kind of pain I deal with everyday (like being dipped in a vat of acid) and then have your pain enhanced by pathetic ignorant statements from people who obviously have absolutely no idea what they are taking about.
Please do the world a favor and don't have children. We don't need you spreading your ignorance.
meant to specify my comment was directed to Aztrazolo.
Actually, they can test for it, genius.
First, MRI tests and other brain scans distinctly show altered brain activity in fibromyalgia patients. The tests show markedly increased brain activity in the areas of the brain related to pain in response to stimuli that did NOT cause the same brain activity in people without fibromyalgia. Another study showed different patterns of blood flow to key areas of the brain. One research study even showed differences in brain activity between fibro patients and "normal" controls without applying ANY stimulus.
These test results are not things that can be faked by the patient. They're not things that can be changed by the patient "imagining" that they're pain-free. You're not going to tell epilepsy patients that they're "imagining" their symptoms, are you? It's yet another electro-chemical imbalance in the brain... just a different one. What about people suffering from migraines, cluster headaches, paroxymal hemicrania, or other headache disorders? It's all "in their heads," right? So I guess it's not real, according to you.
Do your dang homework and look up some of the research. There's a recent study out of Mass General Hospital that shows direct evidence of linkage between elevated intrinsic (resting-state) brain connectivity and spontaneous pain intensity in patients with fibromyalgia (FM). A study out of France in 2008 showed the abnormalities in blood flow in the brains of these patients. A study in Louisiana showed actual structural differences in the brain. And yet another study showed shocking differences in the amount of brain activity in response to physical stimuli in fibro patients compared to control "normal" patients.
Again, these aren't things that can be faked. I can't "decide" to change my brain activity in non-cognitive areas of my brain. In the meantime, before you embarrass yourself again by proving your ignorance, I suggest you increase some of your cognitive brain activity and do some research on the subject.
Aztrazolo
I hope you never have a problem with pain that no one can diagnose. I have been in pain every day for the last 11 years. I finally got diagnosed 4 years ago. I am hoping it is my thyroid as pain can be attributed to thyroid not working or the parathyroid not working right.
Leo: that test sounds interesting. It may be relevant for some FMS patients, but in practice, FMS is the diagnosis given when all else fails. It is not diagnosed with an MRI, or any chemical testing, the test that doctors use for FMS is to poke the patient in 12 places, and if 4 of them are sore or tender, the patient has FMS. I know several people, including my wife, who were diagnosed with FMS, who later were diagnosed with something else that explained their symptoms better, and in some cases allowed for effective treatment. They all had to fight their doctors to continue looking for the cause of their misery once that FMS diagnosis was made. The answer to all their questions was "you have FMS, lose weight, get some sleep, take painkillers, and that's all there is". I don't doubt that some people have actual FMS with interesting MRI activity and so on, but there are a lot more people who have hard to diagnose symptoms that doctors are just trying to give a diagnosis so they will go away.
Rbnlegend101, there is definitely some truth in what you say. And I'm also NOT SAYING at all that fibro doesn't exist–just that there are an awful lot of rheumatologists who are both narrowinded and sloppy in their approach to diagnosis–to the point of what I'd consider criminal negligence. I say this because a rheumatologist is often the person to make the diagnosis, and the type I've talked about is a dime-a-dozen, whereas the ones who really take time, LISTEN to their patients, and consider possibilities beyond their own narrow little world (i.e., actually going beyond "if it's not lupus or any of the 3 other conditions I've tested for, it must be fibro") are unfortunately few and far between.
I sympathize with you, because my wife and I went through a similar situation. We already knew she had fibro–she'd had it for years, but she was experiencing a type of pain with a type of severity that was entirely different from what she'd experienced for years with fibro. I remember the rheumatologist we saw in Arizona–his name was Dr. Nardella. Lupus test came out negative, and when he touched one of the 'pain points' in the back of my wife's neck, she literally screamed. His reaction "that's a fibro pain point, it's just your fibro". He arrogantly dismissed her assertion that the pain was entirely different and much more severe: "you just think it's different." Long and short of it: that night we took my wife to the ER and she was admitted to the hospital because of the severity of her symptoms, and the next day an MRI revealed that multiple cervical vertebrae were compressing her spinal point to the point where she'd be qudraplegic for life without immediate surgery. If we'd listened to Dr. Nardella, my wife would have become a quadraplegic (and we would have filed a major malpractice suite). This is what I mean by 'criminal negligence'. Look beyond your own particular medical discipline and consider there may be something else going on...
I'm in agreement with Rbnlegend101; FM is a lack of a diagnosis, not a diagnosis itself. The last time I studied it was in 2006, and medical science is always advancing – so perhaps there are some tests that can now narrow down the diagnosis more acutely.
FM is awful, always tired from the pain coursing through your body; in some instances adreniline running through your body to try and compensate for the pain thereby creating other problems.
Go easy on those that don't understand FM, it doesn't make sense to many, but the pain and exhaustion is real. I would also concur that even if you are 'diagnosed' with FM, routinely check with doctors to see if the 'diagnosis' is still correct in your case or if another test might reveal it as a different diagnosis. One doctor cannot keep the medical knowledge of the world in their head.
Don't give up, never surrender.
Nice to see you don't have it. Comment on a something when you wake up and your body hurts just to try to sit up, or when you can't move your shoulder because of the pain. You know that you still have to get up and work, to push through another day because your loved ones need you, but knowing that there is going to be little or no relief from any pain medication. I am sure that if you did feel the pain those of us that have fm feel daily you wouldn't be so quick to dismiss the idea that it exists.
I feel sorry for you. Hopefully you will never suffer a chronic disease. I do fall into the female and 50 category, but I am a contributing member of society. I work a 40 hour a week job, take care of a husband and a house. Don't lay in my bed and say poor me. There are days that I get up in the morning, have my cry and get ready and go to work. It is a choice. I choose to be productive. You on the other hand have a choice too and you chose to be a jerk.
Cymbalta and vitamin D have been a God-send to me. Before that I was having such pain and cramps in my legs I could hardly get up. My husband has been understanding and helpful and I am managing the best that I can. Exercise is important and warm water exercise even better. The best advice I got from my pain specialist is - keep moving.
Hey Jim and Aztrazolo - instead of displaying your ignorance in a public forum, how about educating yourself? Fibromyalgia is not a diagnosis of exclusion, ie, you don't have this, this or that, so you must have fibro...There are medically accepted criteria that must be met, including specific trigger points on both sides of the body. A few other fun aspects of fibro include periodic bouts with IBS, headaches, sleep disruption, widespread pain, brain fog, and lack of energy. While I fit a part of your definition: female and fifty, I am hardly nuts or lazy (Mensa membership and work full time in higher education in an administrative capacity). I have owned my own business, raised a family, cook, clean and do laundry. I wish I had time to lay around, and watch the soaps, eating bon bons. Most days, I wake up (assuming I've slept) stiff and achy, and pretty much go thru my day in pain but I power thru. I've tried and cannot take Lyrica, Cymbalta or Savella due to bad reactions. My vitamin D level when checked was 13 and after 8 weeks of 50,000 mg of supplement, the dr can't get my levels above a 25. I hurt, and frankly, I just don't have the time or energy to put up with people like you who, thank God, have been spared from this condition. Please troll elsewhere..
DIane,
your comments" I have owned my own business, raised a family, cook, clean and do laundry" what does that have to do with knowledge of biochemistry or physiology? I promise you that fibro is 90% nutritional and it is SO EASY TO FIX...but you e-mail me drcub1908@live.com and tell me your height , weight and give me a food diary – one week of EVERYTHING that is in your body...food, drinks, meds, etc..and I will promise I will find the problem....this is not trolling this is facts..
and I promise there is 1 thing you NEED to do, but you are not doing it
Dr Rich –
I've had so many encounters and spent so much money on scammers who claim to have the cure for Fibro. If you did have the "cure" why aren't you publish in valid medical publications? I know you're not because I read all abstracts on Fibromyalgia every two weeks. When you have valid data and not just anecdotal evidence, I'd be the first to try what you're selling. Until then, you're just like all the other scammers trying to make money off of suffering people.
Hey Dr. Rich...
Let's see... I'm a 30 year old athlete. 5'4" and 145 pounds. I eat a pretty consistent diet of fresh fruits and vegetables, lean meats, low-gluten or no-gluten whole grains (mmm... quinoa), and foods high in omega-3's. I've been a distance runner since I was 13. I was in the Army for 7 years, and have competed in literally a dozen different sports including contact sports like Tae Kwon Do. I weight lift when my joints allow me to. I do cardio (swimming, running, elliptical) four to five times per week, if not more. I walk to work instead of driving. I was the picture of perfect health until just over a year ago when I started running fevers and suffering horrible abdominal and joint pain for no apparent reason.
I was diagnosed with Undifferentiated Connective Tissue Disease, and at my last rheumatologist's appointment, he told me that I tested positive on the pressure points for fibromyalgia, too. At my request, he left it off my records (because I KNOW the obnoxious stigma attached to the disorder because of "doctors" like you), and I'm being treated for my UCTD at the moment. However, after years of being IMPERVIOUS to pain (broken bones, burns, lacerations, infantry training with the Army, and intercollegiate sports), I can tell you that SOMETHING crazy has changed. There are days when the slightest TOUCH hurts like someone punched me. Just pressing against my arm or leg can feel like a bone-deep bruise.
I've added fish oil, vitamin D3, vitamin B, glucosamine chondroitin, and a heavy-duty multivitamin to my regimen of plaquenil.
Oh, and before you get snotty about professional expertise, after I got out of the military, I used my civilian-side education as a biologist and I work in a medical research facility. I've got a strong background in biochemistry, my wife is a medical technologist, and my sister is a biochemist.
Your move, brain.
Anyone who says "this is your answer" or "you only have to do one thing" is either both a scam artist and bs artist or is woefully ignorant of the research and complexity of fibro and related illnesses. I love it when people say "this is the solution" without any real facts or research to back up their assertions.
That being said, I often wonder how often fibro is occurring in tandem with, or as a secondary result of, other hard-to-diagnose illnesses. I know that there's a wide variety in it, and that it's often associated with chronic fatigue syndrome. I've observed 2 general types of people with fibro:
1) those who developed it after some kind of accident, etc (like a car accident). For the people I know with this version of it, it seems to cause pain but be manageable (i.e., these people seem to be relatively functional, working, etc.)
2) no specific accident/trauma that can be pinpointed, and a lot of pain accompanied by crippling fatigue. People I know who are in this situation are often very functionally impaired, often to the point of not being able to work a job.
I'm wondering whether these are actually two separate syndromes currently being labeled as the same thing. My wife suffered for a long time with version #2, and was later diagnosed with lyme disease (which the 'conventional' tests had not diagnosed for a long time–there are lots of false negatives with conventional lyme testing). We still believe that my wife has fibromyalgia and chronic fatigue syndrome, but that these are secondary outcomes of lyme disease. I'm wondering how often something like this is true (where there's an as-of-yet undiagnosed disease associated with the fibro), particularly for the second version...
I was diagnosed several years ago with FM by a rheumatologist. He always prescribed excercise. Well it hurt too much to do traditional excercise; I would be sore for days. When facing total knee replacement my surgeon had me take 4-6 weeks of physical therapy before surgery to build strength. Wow.....never sore once and it was the kind of excercise I remember from 8th grade....simple stretching and toning, range of motion and strengthing. I never felt better. If only my rheumatologist would have told me what kind of excercise to do early on. The syndrome is REAL and I never intend to sit around and feel sorry for myself. See, I'm from the "pull yourself up by your bootstraps" kind of girl. I take amytriptyline to help with sleep, Vitamin D and tylenol PM at night. I have had trouble with RLS but not to the point of getting a diagnosis. HOpe this helps someone.
Sometimes I think physical therapists are better doctors than doctors. They pay more attention, they are more hands on, and they can take the time to understand an individuals problems. And like you said, spending time learning how to properly do specific, simple exercises is incredibly valuable.
Jim, You are as ignorant as they come....
You guys are soo nice. Jim I hope you get it! 🙂
Fibro is not a disease in is a collection of symptoms..It means painful muscle fibers..Most people that claim to have it, do so because their diet is not clean..Look at the country as a whole..we are so unhealthy..and this article, typical med-heads..
give an antidepressant...Restless legs, did you look at the 4 questions..wow 4 questions..RLS is also a made up condition to sell drugs...if you truly want to be healthy...stop all medications, avoid all sodas, sports drinks, energy drinks, caffeine and milk..
Drink nothing but water, increase vegetables, and decrease and eliminate all processed foods...
then you may want to cleanse...colon, liver and gall bladder.....I would get monthly massages and regular chiropractic care.
increase cardio and remember it is called a workout...SWEAT!...
then in 2 weeks e-mail me...drcub1908@live.com and tell me how great you feel..
check out: naturalnews.com , mercola.com and Robertscottbell.com....
Big Pharma....sucks
Been there & tried that route. All I did was waste a bunch of money of health supplements and "alternative" health care. After 6 months, I didn't feel any better – I actually felt worse. All those supplements – they upset my stomach.
also chiropractic care is the biggest waste of time & money I've ever tried. All they want is to have you go 3x a week and charge you like crazy. Who can afford that?
Been there, done that – diet change, vitamins, massage, chiropractic all that alternative stuff didn't do any good.
While I agree that eating clean, exercise, and detox are all helpful (and are good in any case–if you can afford all of the detox, supplements, organic food, etc. You have to remember that not everyone is as well off as you are, Dr. Rich (although in an ideal society not controlled by allopathic pharmaceutical companies, some of this would be paid for by medical insurance companies–who would probably save themselves a lot of money through the preventative care before someone actually gets very sick).
But my point is that these are not always enough for someone already sick. I also believe that in some cases the fibro–especially if it's at a horrible, crippling level and associated with a lot of fatigue–might actually be a secondary outcome of something else. In my wife's case it was–lyme disease that had been undiagnosed for many years (due to the wonderful conventional tests that provide so many false negatives). In her case, the nutrition and detoxification aren't enough. There are other alternative therapies that seem to be a lot more effective than any conventional "just treat the symptoms" allopathic medicine, but are not typically covered by insurance (at least in the US as opposed to Europe–many of whose countries are now light years ahead of us in their treatment of chronic illnesses, and where such therapies are now considered conventional and actually used in hospitals).
I agree about the pharmaceutical companies though–the US medical system is now in decay (you can see how far ahead of us other countries are in terms of treatment of chronic illness), because it is ruled by the pharmas and an allopathic approach almost entirely based on treating symptoms rather than underlying causes for them. It's a great model for the pharmas as it ensures that people in the US spend their whole lives dependent on the palliative care of pills that only manage symptoms as the underlying illness itself worsens, but it's not so great for patients.
I'm in agreement with you when it comes to healthy living. But no one was raised that way or educated to understand it completely. We all have bits of information and don't understand the whole when it comes to healthy eating.
I was 'diagnosed' FM (FM is actually a lack of a tested diagnosis); I saw a nutritionist (that turned the FDA Pyramid upside down), and found out that I had to eliminate nightshade vegetables (tomatoe, potato, eggplant, etc) from my diet for a minimum of six months. We found out that nightshade vegetables leached the calcium from my bones and deposited it into the soft tissue of my joints creating the searing pain. After six months I could eat these items sparingly, and I was mostly pain free.
There are other nutritional things that can also be done that can help too. But this doesn't mean this is a cure for FM. Like diabetes, I don't think you can cure it, but I think you can put it into remission and control it. Some will use diet, some will use medication, some both, and yet there will be others where this may not help at all.
I also acknowledge that stress can also be a big factor with FM. It's up to each of us to look at our environment and figure out how to be healthly.
Generally speaking, I personally believe that medication is pushed to easily. I think pharmaceuticals keep us sick and dependent on more, more, more – never a cure, just an aspirin to keep you going for another minute..
Yeah sure stop all meds because my body doesn't absorb folic acid, which without my body won't absorb b12. Yup you seem like you know alot.
Angel, you need to find out why your body won't absorb folic acid. Each part of your body can go through a cleansing (kidney, liver, colon, etc) to improve efficiency. Don't accept the answer that your body 'can't' find out why. If doctors won't help then find a nutritionist.
Jim – I am about to say something I rarely do. Whenever I hear something like what you just said that I hope YOU get some chronic health problem and no one believes you for years. I want YOU to suffer and have no one believe you. I hope that you are told you are crazy and people make fun of you. You'd better hope you never get sick because I hope the doctor's completely dismiss your symptoms and you suffer for years because of it.
check this out
Good Morning all ! ... Am 36 and have had Fibro for about 10 years now. I have just been diagnosed with Sjogren´s Syndrome and am wondering if anybody who has been diagnosed with Fibro also suffers Sjogren´s Syndrome and what recommendations you could all kindly give me ? Anybody has had a hormonal lab profile donee, hirsutism (excess hair due to hormonal imbalance) or thyroid problems?
I too have Fibromyalgia and Sjorgren's Syndrome.
The first line treatment for Sjogren's is Plaquenil which is an antimalaria drug. If this doesn't work, Enbrel is another alternative. It's also important to use moisturizing ear drops and be diligent in your oral hygiene. See your dentist regularly.
A Rheumatologist is the doctor that treats both Fibro and Sjorgren's, so I would hook up with one of them.
Sjogren's can cause systemic problems beyond the dry mouth, eyes and arthritis, so it's important to stay on top of it with a good Rheumatologist.
One of my underlying conditions is is fairly advanced Hashimoto's Thyroiditis, i.e., six-nodule goiter as of 3 years ago. My internist says she missed it for at least 6 years. My opinion is that she and previous primary care docs missed the underlying autoimmune disease for as many as 20, maybe more, years.
All you people harping on the exercise, essentially blaming the patient: I used to be able to run 10 to 12 kilometers per day. I understand feeling good through regular exercise and being "in shape." Even missing one day of running at least 5k or so would leave me feeling not as well. For at least some of us, the underlying problem has nothing to due with health habits.
This "thing" seems to run on my dad's side of our family, with several of us having complex autoimmune problems. But there's also thyroid problems, Grave's Disease in particular, on my mom's side. Some of us have been diagnosed with rheumatoid arthritis, lupus and even multiple sclerosis. (There's dozens of doctors involved, sometimes the same doctor having examined more than one of us.) But after a period of time, those defining symptoms subside, with FM and inflammation being the only persistent condition, and the doctor admitting, "well, i guess you went into remission" or some such remark.
I was once ignorant of Fibro and IBS and depression etc if they couldn't test it with something that showed a positive yes then you were using it to get out of work or be lazy whatever.
My mom always said don't poke fun as God doesn't punish with a stick. Well she was right my punishment came in the form of Fibro which when I was diagnosed thought lazy dr. just doesn't want to do anymore tests so gave me the generic diagnosis. But the more I looked into it I had all the symptoms and now I too have RLS and just hope the ignorant one is given the pleasure of feeling this feeling. Mine comes like it feels when you are going to have a major cramp only the cramp never comes just the tightness and aching. My fibro causes my shoulders and collar bones to feel like they are coming apart.
Then just to finish my punishment for being so ignorant I was diagnosed with Bipolar Disorder another health issue that most say..yeah right that is another imaginary diagnosis, everybody feels down sometimes. LOL they have no idea.
So between all of these things there are some days I have to force myself to get out of bed, to take a shower and leaving the house sometimes is just not an option.
Now I never say to anyone with any disease that I don't believe in it as nobody knows until they have something just how bad it is.
I have no credential am not a brilliant dr. just a housewife who gets by the best she can and is so glad that her man believes her pain is real and is there for her in every way. Thank God he is not a Rich!
What helped my RLS was adding magnesium supplements to my diet. I take one every night 30-60 minutes before bed and it makes such a huge difference!
Dr. Rich,
I smell a quack. Anyone who says they can cure fibro by doing one thing is full of it. And I'm sure, it involves sending you money. Put up or shut up, buddy. Don't keep us in suspense. What's your miracle?
I've had RLS for as long as I can remember. I've had great success by taking 2 aspirin and waiting about 20 minutes. I've recently started taking a multi-vitamin and haven't had any leg problems for about 3 weeks.
Before I was diagnosed with fibromyalgia, I had a trouble with RLS that often disrupted my sleep at night. What I did to help and relieve the RLS was that I often took a hot bath in the tub, and it really helped a lot to relieve the RLS without taking any supplements or medication for it. I hope my feedback may help anyone who wants to try it, but I am warning that it may not be helpful for some people. This is one of my secret remedies.
It not that surprising at all that Fibromyalgia and RLS are linked. Many people with Fibromyalgia refrain from a regular activity or exercise programs secondary to their pain levels. However, our muscles and body is made to move...and when you do not do that on a regular basis, you open yourself up to muscle atrophy, muscle spasms, nerve pain, arthritis, bone spurs, decreased mood (decreased seratonin levels), hormone imablance, changes in your circadian rhythm, ...the list goes on and on!!! So what is the answer...most people would say some sort of pill. A quick fix that will most likely cause you other side effects and further more pills and more pills and more pills..... Just move your body! it is healthier and the benefits are vast.
I figured all of this out several years ago when I got bouts of RLS that lasted for eight hours soon after my doctor increased my elavil to 100 mg. The problem is that Requip, the only way to stop the RLS, cannot be taken at the same time as elavil without getting really sick. So I have to wait an hour and a half to take the requip after taking the elavil. The only problem, of course, is that the RLS will sometimes start before taking the requip. My problem now is that I'm stuck on elavil because I will find myself in extreme pain no matter how slowly I try to ween myself off of it. Bottom line, people who have any history of RLS should not be prescribed elavil!
I was taken off the requip and am now taking baclofen. It works much better for me. Also, tramadol affects serotonin levels without being specifically an antidepressant. It affects both serotonin levels as well as blocking pain receptors.
BTW, for the medical pros out there, I've seen neurologists as well. And my (somewhat minor) muscle atrophy is asymmetrical. Complete MRI of CNS was negative but for some disc problems (dessication and tears) and a little spondylosis, cervical mostly.
I suffered from I.B.S. Fibromyalgia in the late 90's. At first certain medicines gave me a short term placebo effect. After each wore off I finally seeked counseling. I finally learned how depression and anxiety can cause severe psycho somatic symptoms. Cymbalta is used for depression so I see how many finds some relief with it. I am so glad I got over my physical symptoms of depression and anxiety with good therapy and some meds. I hope all who suffer from these anxiety related symptons including migrains,I.B.S.,Fibromyalgia,get to the bottom of what is really bothering them ...
Does narcolepsy has any thing to do with fibromyalgia if so i have both.Some years back right out of high school i went to work for a ferlizer plant,I was exposure to a lot of toxic chemical,that use to make ferlizer.My life have been a living hell ever sent.
hi overmedicated folks, Iam a Doc , and as per what i have seen in my clinical practise is RLS is due to too much mental pressure, along with faulty food habbits, one best remedy with out shelling out a single pie is do Vajrasana, a yoga posture every day for 15 min.........please do it and cure ourself of this nasty problem
HI. I own and moderate several support groups for sleep disorders, especially RLS. I have over 2400 members in one group, which has been going for well over a decade. I would say that at least half of us have also been diagnosed with Fibro, including men and women. No one treatment works for everyone. That is the "rule" with RLS. NOt only SSRI antidepressants exacerbate RLS, tricyclics like Elavil are even worse as far as it's affect on RLS. It put me in total RLS hell when my family doctor gave me Elavil for migraine prevention. That was years ago, and and I have bnever forgotten that nightmare! We have all kinds of meds that we can try, and sadly we have a long list of "failed meds". Some of us are lucky enough to find a combo for ourselves. It is a long road at times getting a good diagnosis and building a trustful relationship with your team of doctors.