fibromyalgia fatigue

Read and learn more about fibromyalgia fatigue. For more, visit the Pain Q&A website FeelTheHurt.com

Q: Where can I find a good doctor for fibromyalgia /chronic fatigue syndrome?
I’m based in Leicestershire, UK, and need a good NHS doctor, sympathetic and knowledgeable about fibromyalgia / chronic fatigue syndrome. Any suggestions how/where I might be able to access one?

A: Really sorry you have this, can’t really help, but in our area its impossible to find anyone who has an interest. My consultant saw me once told me to adjust my life style to cope and then signed me off. had some hydrotherapy and then was sent to a fitness classs which I declined because there was no way. No one seems to understand the nature of this awful illness.

Q: What foods are BEST to eat when you have Fibromyalgia & Fatigue?
I have been diagnosed with Fibro&Fatigue and am wondering if anyone else who has this has found foods that help or even foods that make the condition worse. I am trying to find out everything I can about this disease and what I can do to help the symptoms on my own. I am not a big fan of mediciations over a long period of time. Also, what are techniques you use to sleep better at night? Without medication I currently wake up feeling exhausted!

A: I have diagnosed Chronic Fatigue for 16 years now. I have found no food changes to be beneficial per se, but there are sensitivities and allergies to food that we can tolerate when we are healthy, and not at all when we are not well. Additionally, a compromised immune system may not be able to stave off a candidia attack in the gut. For that reason, I have cut back on sugars which promote candidisis, and have given up on milk and wheat products. A friend gave me a copy of “The Fibromyalgia Cookbook” by Shelley Ann Smith. It’s rules are: no red meat, no white flour, limited starchy foods, etc. These are all foods which some persons may be sensitive to, Additives are also limited or eliminated. I tried the recommendations and must report there was no noticeable change. But, every person has a different type of response, and as you know, the illness moves in cycles. As to the sleeping, I have tried melatonin and other soothing herbs like lemon grass with some success. Calcuim before bedtime promotes sound sleep. There are a dozen different pillows on my bed, and l bought a sleep-number bed also. The only single thing that has really helped me sleep well is a prescription med, sorry. A 30mg per day (one fifth the therapeutic dose) of amitriptalyne, an anti-depressant, has helped my sleep and pain management immesely. There is a vitamin and supplement company specifically devoted to CFS-FM help. They are called “Pro Health.” They also donate some of their profts from sales to research on CFS-FM. You can find out about their products online. I am happy to help you find sources and to share my experiences in the quest of the “magic bullet.”

Q: What have you heard about the Fibromyalgia and Fatigue clinics? Are they a god send, or a rip-off?
I am a Registered Nurse who has had fibromyalgia for almost 3 years. I have been seeing an internal medicine doc the entire time. Besides prescribing pain meds, antidepressants, a muscle relaxer and Lyrica, my doc really hasn’t been able to improve my health status. I have a pharmacy of meds to take every day; and I just think we are putting a band-aid on the symptoms, not treating the cause. I am almost positive I am also dealing with myofascial pain syndrome and chronic fatigue syndrome. That is a little history, so here is my question. Has anyone had any exposure to the Fibro and Fatigue clinics? I am aware they test for a LOT of problems and they do unconventional treatments that work for some people. But my problem is the cost of the visits. I was told it is almost $400 a vistit for the 1st two visits. On top of that, it is cash up front, and they can’t even file on your insurance. Why is that? But then again, I would gladly spend $800 to get my life back.

A: Hi,

I think you’re better off with your internal medicine doctor-that is if he/she is willing to make it a team effort to fight this illness. Sometimes we as fibro patients forget that there is no cure, so our expectations of how we feel may not be realistic. But we can improve a great deal and it takes a skilled Dr. that really knows fibromyalgia to understand exactly what to do. These clinics are money banks. They may offer a lot of alternative treatments, but many of these things you can research and do on your own.

My doctor does research on fibromyalgia. He can put fibro in remission because of the information that he found in his research. First, you have to get your doctor to explore the underlying causes of fibromyalgia, such as thyroid (even if the tests read normal), estrogen dominance, adrenal exhaustion, sleep apnea,etc… When you treat the underlying condition, the fibro can get better. But if these underlying causes are never treated, then your fibro will never get better.

Second, in Dr. Wood’s research, he discovered that fibro patients have lower dopamine levels than normal. So his treatment protocol includes using medications to rasie dopamine. Since you already take antidepressants, why not try Wellbution or another one that works on dopamine. Use Baclofen as a muscle relaxer instead of others since it also raises dopamine. If you don’t respond to that, he has used meds that parkinson’s patients use liks mirapex to raise dopamine levels. If you still don’t respond, you may want to try armour thyroid even with normal levels, just to see if there is an underlying problem.

As for Lyrica, it didn’t work well for me, but neuronton works better. Plus, I take magnesium for muscle spasms, melatonin for sleep, and other supplements for other symptoms instead of relying on conventional medicines for relief of all of my symptoms.

I am developing a page on the Bella Online website that will have a directoy of fibromyalgia specialists around the world. I hope to have a listing of legitimate referrals from people who have actually gotten better under these doctor’s care. You can also read some of my articles on fibro since I’m the editor of the fibromyalgia and CFS site at http://fibcfs.bellaonline.com/Site.asp . It’s free information and many of my articles comes from Dr. Wood’s research.

I hope this helps,

Veronica

Q: Is fibromyalgia and cronic fatigue sydrome alike or seperate?
Are the symptoms of fibromyalgia and cronic fatigue syndrome alike? Sorry nutter2b my brain went blank for a few when I asked what it is{cfs} … I have the symptoms of fibromyalgia and was prescribed lyrica but I am not happy with the side effects of it. I have alot of tiredness, some day’s not being able to move much at all. Are there other tests for CFS?

A: there are no specific test fro cfids either

there is still debate if tehre are the same condition or not

the symtpoms over lap a lot

if you have more flu like symptoms with more fatigueit is usually called CFIDS

if you have more pain it is usaully called fms

the 3 approved meds are

LYRICA (ANTI SEIZURE)
CYMBALTA and SAVELLA (SNRI)

other drugs in these classes can be tried

for insatnce—neurontin instead of lyrica

be sure to research and confirm your diagnosis–there is a lot of misinfotmation out there–and fms is highly over diagnosed by incompetant doctors

Q: Have you tried that new fibromyalgia/chronic fatigue med?
Lyrica( spelling may be wrong) is the first fibromyalgia drug approved by the government. It sure seems to help the pain. Since Chronic Fatigue and Fibromaylgia are considered to be the same, try it for chronic fatigue too. Have you tried it and did it work for you?

A: Lyrica is the brand name of pregabalin. It was designed as a more potent successor to gabapentin (Neurontin). There is some understanding of what the drug does in the body, but it is not clearly understood how it works. However, it has been found to be very effective in many disorders, and is approved for use in fibromyalgia, seizures, diabetic neuropathy and anxiety/panic disorders. However, many people have found it successful as treatment for Complex Regional Pain Syndrome (also known as RSD) and other neurologically mediated pain syndromes.

I have prescribed this medication for patients, and have taken the medication myself, and find few complaints of side effects, good response in most patients, and the only issue I have had is patient compliance with the usual three times per day dosing schedule.

Overall, it is a good medication, and a great help to those patients with nerve related pain.

EDIT: Maris has staed that CFS and Fibromyalgia are not the same, and speaking specifically, she is correct. However, there is frequently, a significant overlap of patients with these syndromes, both have no known cause, and the treatments for both, until recently have been largely symptomatic. In persons who report multiple syndromes with unknown causes, it is assumed that the probable cause is related. Thus persons with both CFS and FMS probably have a root cause with multiple symptoms. The more symptomatic a person becomes, the less likely any therapies will be effective. In those persons with multiple overlapping pain syndromes, while antiepileptic drugs can provide a 50% relief of symptoms it is often the expectation of the patient of complete relief that makes them find the medication useless. Also, frequently, these same patients do not reach the optimal dose of 150 mg three times a day, as they notice no benefit at the starting doses and stop the medication early.

Most practitioners find that patients with significant overlapping pain syndromes, while needing medication support for the symptomatic relief, find the greatest benefit from cognitive-behavioral therapies and counseling about reasonable expectations and lifestyle changes.

I wish you the best with your condition. Give the medication three full months, any less will not show you the full benefit.

Q: Ideas needed for dealing with the fatigue of Fibromyalgia?
I’ve been diagnosed with Fibromyalgia since 2002. While the pain of it comes and goes, my bigger problem is the fatigue. I’m always exhausted and can’t get my day started no matter how much I try.

I’m uninsured, so I’m not currently seeing a doctor for this condition. Any serious suggestions would be greatly appreciated. Thank you in advance for your time.

A: I completely empathize with you. I posted a question awhile ago about coping with chronic pain and fatigue and got this video as a response.

http://www.youtube.com/watch?v=QaQRviJfpyU&feature=related

I tried the vitamin regimen and I think it helped a little bit. I’m functioning now and I was not functioning well before. I refuse to take any prescribed meds for it because I think they do more harm than good. It’s vitamins, and I checked with my doctor before I started and he said that even if your body isn’t deficient in these vitamins, you’ll just get rid of them in your urine. Good luck and hang in there.

Q: Can fibromyalgia or chronic fatigue syndrome be secondary to another medical problem?
My business partner has been VERY ILL for about 6 months I came across a article about cronic fatigue syndrome and fibromyalgia. He has every symptom. we have been to several physicians but still no diagnosis. Should we be looking for something specific other then CFS. can cronic fatigue syndrome secondary to other medical conditions?

A: The best way to be diagnosed is to get an appointment with a Rheumatologist. The College of rheumatology came up with the Tender Points and the diagnostic tool, which is still the standard in determining whether it is Fibromyalgia or one of the other diseases which it can mimic. Fibromyalgia and Chronic Fatigue Syndrome share many similar symptoms but are two separate diseases. A person can have both and yes they can be secondary to another separate Disease. Below I will list a couple of sites you may want to check into. I have found them very helpful in my own disease process. I am sorry for your friend’s illness and hope that at least a diagnosis will be forthcoming. My diagnosis was years in the process, so I understand the frustration. Recently there is so much more attention on the disease with the FDA approving a drug specifically for use with Fibromyalgia, that your friend will hopefully not have as far to go for an answer. Good luck to you both.

Q: Is Botox safe for people with Chronic Fatigue and Fibromyalgia?
I have been ill with Chronic Fatigue and Fibromyalgia for many years and I am curious if it’s safe for people with immune dysfunctions to get botox injections? Anyone have any experience with this?

A: For me, Hydroderm is not a complete substitute for Botox. Hydroderm does however work well for me in many
places, and is certainly a lot cheaper. It’s also a lot safer in my opinion. I found some good basic info
at this site that got me started:

http://hydroderm.deal4-you.com

Good luck.

Q: For those who have fibromyalgia + fatigue, what treatments are you receiving?
I’m considering taking medication, but i’m a bit reluctant even though I’m really exhausted every day.

A: I totally understand your reluctance. No one really WANTS to take medication, but remember if that’s what your body needs right now, then don’t totally be against it. Sometimes we just need something that we can’t get on our own from our diets or vitamins, etc.

I’m assuming your doctor suggested a medication? If not, don’t choose medications on your own. I’ve had FMS for, well, we have it all our lives, but I started noticing it 22 years ago, I’ve had it chronically bad (bedridden & housebound a lot) for 6 years. The pain from the FMS is terrible sometimes, but I always thought that fatigue we get, is worse then any pain. Its almost impossible to take! I know. Someone described it as if there was a fire in her building, she wouldn’t have the energy to get up & get out. Its debilitating! People don’t understand that when we say “fatigue” because EVERYONE on the face of the earth gets fatigued & tired & sleepy sometimes, but what we are forced to go through is indescribable.

I know you didn’t ask about all of this, but FMS + Fatigue + treatments, it all goes hand in hand.

I’ve tried different things for many years, from pain medication to diet changes, to extreme protocols, & I’m sorry to say that there’s really not a lot out there that actually prevents the fatigue part of it all, you can get help with pain which helps us relax more which in turn gives us a touch more stamina, you can also ask about sleeping aids, I’ve been on Ambien for 15 years & I can’t sleep without it, not 10 minutes, I will probably never go off of Ambien & I love it, It does NOT take away the fatigue during the day, but it gets me to sleep at night & keeps me asleep. Fibromyalgics have severe sleeping problems, as tired as we are, most of us can’t sleep, either the pain keeps us awake or other FMS symptoms. Top that with the fact we need more sleep then healthy people, sleep becomes all the more important. So if you have ANY problems with sleeping at night, ask about sleeping aids.

The best treatment I’ve heard of (haven’t tried it yet because it takes a LOT of preparation & mind set before starting it, its pretty strict & you HAVE to stick to it, its Dr. St. Amands “Guiefeneson Protocol”. Here’s a link: http://www.fibromyalgiatreatment.com/index.htm
Its the most successful treatment for FMS out there. I have 2 friends who have stuck to it & feel a lot better, but you have to read the book & get a doctor to help you with it because there’s a lot involved. But a cool thing about this protocol is Dr. St Amand has FMS himself, so he knows! He’s like 80 years old & he’s awesome (I met him once & he’s so great!) I’m starting the protocol sometime this summer. It really is the best one I’ve ever heard of.

In the mean time, something I always tell others with FMS & CFS (chronic fatigue syndrome) is you can’t make the fatigue go away, you just can’t, however, by fighting it, by trying to stay awake & active & alert, it actually makes it worse. IF you possibly can, rest when you’re overwhelmed by that feeling. If you can, stop whatever you’re doing & go lay down & close you’re eyes, try to sleep if you can too, but you have to rest, don’t fight it. It ruins our days, it messes up all of our plans, but that’s just what we have to live with & by fighting it, we’re not doing anything but making it worse. It won’t go away if we deny its there, trust me!

Well, I talked way too much, didn’t I? Ha! Sorry, if you’re still awake, =) take care! & talk to your doc about the protocol & sleeping aids.

Q: What is the best treatment for Chronic Fatigue/Fibromyalgia?
I tried Cymbalta for 2 weeks and the side effects were horrible.

A: that stuff never worked for me. it was Ibuprofin, warm baths or a hot tub and something to make you sleep at night. the problem is that when you sleep you don’t go into a deep enough sleep for you muscles to relax. therefore you wake up just a tired and sore as when you went to bed if not worse. more than 2 days of sleep depravation will trigger your symtoms. good luck. sometimes you just have to work through the pain. I know it’s not much help but it happens.

Q: Has anyone out there ever been evaluated by a Fibromyalgia and Fatigue Center? What was your experience?
I ‘m considering an appointment but was curious to hear from someone who has already been through the experience. Is it worth the time and money, or is it psuedoscience? Do they know what they’re talking about or simply trying to push “snake oil” in the form of supplements?
I appreciate any insight anyone give give me on this one! Thanks!
My daughter (21 yrs old) was diagnosed in May (this year) and although I’m grateful for the relief she’s gotten with various medications, I can’t see her on these “heavy duty” meds every day for the rest of her life. If possible to actuallt treat the causes of her various symptoms that would be preferred.

A: Hi,
I did go to a Fibromyalgia and Fatigue Center a couple years ago. I was desperate and wanted my life back. I had a few months of feeling better (at a high cost). Eventually, I could not afford the expensive supplements as they changed frequently. My doctor was also extremely expensive. Needless to say I lost a lot of money and got little in return. I am now going through a nutritional supplement program with my Chiropractor. Several of my friends have gone to him and have been pleased with the results. I have been on the program for one year and am now able to do more than I was able to do a year ago. I also have significantly less tension in my neck muscles (confirmed by my massotherapist and my doctor who monitors my fibro). Whatever you do, be careful. Some supplements may be way too potent and end up stored in your body causing other problems. There is a lot you could lose. Check out all of your options and talk to others who have fibro. They are great resources. God bless!

Q: How do I differentiate between chronic fatigue syndrome, fibromyalgia, and depression?
I have all the symptoms for CFS and fibromyalgia. All my blood work comes up clean. Since I am a teenage girl, my doctors are trying to push depression although i don’t present the mental symptoms. My parents beleive it is more like CFS or fibromyalgia. How can i differentiate and get the correct diagnosis?

A: Dear,visit a real good specialist,a neurologist.to say accurately is it CFS and fibromyalgia or depression.I am inclined to think that if you not present the symptoms of depression it is more likely you not to suffer from it..and there’s so sure solution and also harmless..for CFS is reqiered to be treated simply with the addition of arginine aspartame,so try it..Sargenor is one product which contains it and you can buy it without prescription and has no side effects..Unfortunately,too many specialist don’t pay the needed attention and are inclined to superficial answers like too much stress,just a case of depression etc.I really suggest you to try(again I repeat Aspartame is totally free and taken even without a prescription will not harm you)..Sagenor..I suffered from CFS and that helped me within 10 days.I also suffered from depresson and can tell there’s a great difference between them!! Good luck and if you need more info or whatever I’ll be glad to answer you!!

Q: how do i get my spouse to understand about my Fibromyalgia and Chronic Fatigue syndrome?
She seems to think I am super women and I can get all housework done and errands in my condition. I just feel like laying down because of the pain and fatigue.

A: soem fibromyalgia association is promoting teh clothespin test-have the well partner put clothespins on her fingers and see how tehy tolerate it-

Think the pregnancy simulators that they have for teh non pregnant partner to teach tehmhow it feels-

could do something liek have your partner wear restrictive clothing-weights on arms and legs-set the alarm to go off at midnight-just keep hitting the snooze to bewoken up agian 9 minutes later-get up after only 3 hours of sleep for a week to simulate the fatigue…..

Q: Who has taken Provigil for fibromyalgia fatigue and did it help?

A: I take Provigil for fibro fatigue and yes, it has helped. While it doesn’t take the fatigue totally away, I find that I am able to function a wee bit better because I’m not quite as exhausted.

Lyrica is indeed the first med approved for fibro, however, it is the ’son’ of Neurontin, so those on Neurontin aren’t going to find this a ‘miracle’ cure. I just spoke with my doc yesterday about it to find out more. I had to admit I was disappointed, because I’ve been on neurontin for 13 years.

I think the medications are best suited to each individual – for example, I take Marinol because it helps with the pain and allows me to do more than before. It doesn’t take long before the side effects go away. I work with the doctors to try and find the best dosages and meds and go with it until something else comes along.

Good luck!

Q: Did you know Fibromyalgia and Chronic Fatigue Syndrome arent diseases?
They’re simply the symptom of a chemical intoxication or a nutrient deficiency.
Foods from stores contain chemicals. MSG is in almost all canned foods.

A: ther is a differenc ebetween REAL FMS and chemical intoxification andnutrient defiency

ALL 3 exist…..

just because some people have pain and fatigue from MSG or chemicals doesn’t mean tehy have fibromyalgia….

if the MSG theory were true–more people with be sick

there is a rumor about nutrasweet being teh cause of fibro–i never had nutrasweet–yet i have fibro

there are 2 types

REAL fibro
FAKE fibro

among the subtypes of teh fake–are teh attention seekinghypochonriacs and lazy people….as well as peoiple who really have something else such as lymes, arhritis, etc.

i have had REAL fms for over 30 years….i worked at least full time–if not over time–including volunteer work until last year when i experienced a major decline….i do also have a couple otehr conditions that complicate it….

when it started i was a child–i couldn’t keep up with my peers..at times it hurt to breathe and i felt like i was suffocating…i was very uncoordinated….

in my teens i was in excrutiating pain–i would press my leg against the heater trying to relive teh pain…

when i moved into my own place–i told teh neighbors not to call teh police if tehy heard me screaming at night–i was just in pain and tehre wasnithing taht could be done

i had FMS alone for about 12 years without any other chronic helath problems

so yes it is real–but it ishighly overdiagnised..

most docs are incompetant and are teh cause of teh problem–they label any pain–even if due to lifestyle choices or another condition as FMS

i know a diagnosiable hypochndriac taht has iot–as well as someoen who was trying to collect SSDI–while working in child care…..

i have heard many people on here say it is autoimmune or what theya re taking fro inflammation–

it is NOT beleived to be autoimmune–tehre is NO inflammtion–those people are most likely misdiagnosed

i say a couple say they were diagnosed with thyroid and fms on the same day–that in not possible–you have to manage th ethyroid 1st before you can consider teh fms diagnosis…thyroid casues paion and fatigue.

i have seen MANY people on her say they were initially diagnosed with FMS…butt han dound out tehy had thyroid or MS or lymes, etc…..most likely they nver had fms

many docs call teh pain of lymse –fms
or the pain of arthrist is fms–that is MALPRACTICE

they are starting to find irregularities in objective tests..hopefully they will be able to show who really has it and who doesn’t

i am 99% sure i really ahve it–i know i have something–i just cna’t be 100% sure it is fms

unfortunately most people with REAL fms do not recognize teh problem of misdiagnosis and automatically beleive everyione that says they have it–

i will not go to support groups or assocaite withotehr who claim to have it–unless i can beleive they might really have fms–

my hypochondriac friend consatntly whines about it–and i am really sick–and sick of her her bit$% when she really isn’ty sick–this woman thinks she has every disease she hears about..inlcuding cerebal palsy, autism, cancer, pnemonia, etc….

there is a difference between being tired and achy and being in such intense pain you can’t stand up or sleep..

at night i would dig my nails into my stomach trying to disctart myself from the pain in my legs

anyone who claims to ahve cured fms never had it in teh 1st place…they had a different condition such as a nutrional problem taht casued pain and fatigue

i don’t knwo why its all or nothing with people–they think it must always be true if someone says tehy have fms–or its always fake–

its both–i wouldn’t be surprised of only 10% of people claiming to have fms really do–and 90% of the tyime its the docs fault for misdiagnosisng it–teh people are really sick–just not with fms

just like ADHD–it is a real problem–but its also an excuse for misbehaving kids