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chronic fibromyalgia

Read and learn more about chronic fibromyalgia. For more, visit the Chronic Pain website ChronicPainFAQ.org

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: 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: Is Fibromyalgia considered chronic inlfamation, in which I have both?
I have been check by a infectious disease doctor and he says my immue system is 35, in which my chronic inflamation is the same #. But I neglected to ask where the chronic inflamation was, I just assumed it was from Fibromyalgia. Could this be where my chronic inflamation is and is 35 a dangerous immune system level?

A: there is no inflammation with fms–if you thought there was–you are probably misdiagnised

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: Anyone out ther have any answers on fibromyalgia and chronic pain and how to get by on a daily basis?
I have fibromyalgia and chronic pain, am wondering about meditation techniques or any other techniqeus that help one deal with it on a regular basis, just the pain aspects, I have the whole, pain medication under control, but would like a more wholistic approach.

A: I have had fibro for twenty years now and I can tell you from my personal experience, pain medications do not work. I have tried everything up to Fentynl patches with Actiq suckers. The amount of pain medication that I require is too toxic to my system. After being on pain meds my liver function was consistent with Hepatitis induced from drugs, I had Type II diabetes, high blood pressure, rotting teeth, and terrible bowel problems from the pain meds shutting down my gut. I awoke one day with paramedics looking over me with my husband. I had come out of a seizure (which I’d never had before) and a temp of 107.5. Scary. Moral of the story, pain medication is not effective in Fibro pain treatment because if increasing resistance to the medication it builds up to toxic levels. You are really better off taking a good muscle relaxant (I am on Zanaflex)

As far as insomnia, first have a Sleep Study performed. Mine was ordered by a Neurologist This will tell you what is happening when and if you sleep. For instance I found out that I had three types of insomnia: chronic, initial (can’t fall asleep), and maintenance can’t stay asleep). I also get no REM sleep which explains the extreme fatigue. You can then work with your doctor to address your problems.

The fibro fog can be from medication side effects &/or the bodies concentration on the pain signals it is constantly receiving. I believe the fog is a combination of both and it is genuine. Sometimes I can’t find words to say that I speak all the time. Or I forget things a lot. My computer calendar has helped tremendously. A study was performed to explain why we feel so much pain. You can find it at http://www.fibrohugs.com/article.php?story=20040301120311535
The increased pain response kicks our bodies into the “fight or flight response”. Medscape explains that pain alerts the central nervous system to the presence of a major stressor to the body; one that demands a response. Pain experiences are typically accompanied by systemic responses similar to those that characterize the “fight or flight” dynamic. These responses are caused by the involuntary release of norepinephrine and adrenaline, which causes increased mental alertness, muscle tone, respiratory rate, heart rate, blood pressure, and blood glucose levels. Facilitated clotting factor, shunting of blood from the viscera to skeletal muscles, increased visual acuity, and sweating also occur when catecholamines are released. The “flight or fight” response, although clearly beneficial to the endangered organism, can be a threat to the individual with chronic pain. Further, the level of high acuity and anxiety commonly associated with the “flight or fight” response is often caused by the anticipation of a painful event rather than the actual “experience” of one.

Try taking warm baths in Epson Salt. It contains Magnesium Magnesium allows oxygen into your muscles, reducing cramping and spasms. Consult your doctor or a nutritionist to have your Magnesuim level checked- it is a simpe mouth swab and not painful. If you have a low level, which most people with Fibro do have, take Magnesium and Malic Acid supplements. There are a few studies listed below that explain the rationale of using the combination in treatment of Fibro.

Try eliminating Monsodium Glutamate from your diet. I did and some of my symptoms (chronic headaches and nausea) went away. It is in everything from Doritos to chicken soup. A few key finding’s of an FDA study found MSG to cause a “burning sensation in the back of the neck, forearms and chest”.

If you need adjustments try to see a D.O. that is familiar with Firbro instead of a chiropractor. In my opinion Chiropractors tend to be a little more violent in their adjustments and can cause more pain in your soft tissue. D.O.s do a more passive adjustment.

Before you exercise make sure you really stretch out and breathe deeply (remember the goal is to get oxygen into your muscles to reduce cramping and spasms. I have found begineer Pilates DVDs to be helpful in guiding me. It also improves your abdominal muscles which takes strain off of your back.

I cannot honestly say that I am 100% myself and realize that I will never be, however, since giving up the narcotic prescriptions I have recovered at least 60%. I have good days and bad days still but the good days are coming more often.

Good luck and hope I helped!

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: 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: 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: 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: 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

Q: What’s the difference between fibromyalgia and chronic fatigue syndrome? Is fibro just a milder form of CFS?

A: one is NOT milder than the other

no one knows for sure–they may be teh same thing or variations of tehe same the thing–like type 1 and type 2 diabetes

for now they are considered to be different conditions…

cfids is thought to be autoimmmune and has more ’sick’ type symtpoms lick sore throat fever headache
fms is not beleived to be autoimmune

generally–if someoens primary symtpom is fatigue–they are more likely to be diagnosed with cfids

if teh primary symtom is pain it is more likely to be diagnosed as fms

many people are diagnosed with both

Q: Any problems with getting the shingles vaccine when you have fibromyalgia and chronic fatigue syndrome?
Has anyone with CFS/FM had the shingles vaccine and did you experience any bad side-effects?

A: I would avoid a vaccine. There is mercury, formaldehyde, lead, aluminum, phenols, etc. They are not that safe. I have heard that people with fibromyalgia benefit greatly from a wheat free diet. Maybe give that a try and avoid the poisons…
http://www.thinktwice.com/
http://www.nvic.org/state-site/state-exemptions.htm
http://www.vaclib.org/index.htm
http://www.mercola.com/article/vaccines/neurological_damage.htm
http://www.informedchoice.info/cocktail.html

http://www.vaccines.bizland.com/links.htm

Q: How were you diagnosed with Fibromyalgia and chronic fatigue syndrome?

A: you don’t need to meet the exact criteria to still have FMS–but many conditions are misdiagnosed as FMS–Vitamin deficiency, hormonal problems, lymes, MS, Lupus, depression etc…..if you have any of these–you most likely don’t have FMS–especially once treated and teh symptoms go away

it is possible to have both–but FMS is highly over diagnosed by incompetant doc sho use it as a genral term for pain–

to get a diagnosis–these and other similar conditions need to be ruled out–

Q: I have been diagnosed with Fibromyalgia & Chronic Fatigue Sundrome?
I work full-time but have had some time off ill due to this. Does anyone else suffer from this and do you have any helpful hints on coping with the pain etc. In bed ill right now with flu-like symptoms and extreme muscle pain.
Sorry meant “syndrome”-brain’s a bit dead today.

A: Listen to yourslef-find out what works for you-not what the doctor says works for other people

the best doctors for FMS ADMIT they don’t know much about it-the ones that claim they are experts are usually in it for the money–

There may be docs that are truly experts-but they are rare.

Choose a doc that will treat you as a PARTNER in your helathcare-not like you are subordinate to him…

Q: I think i might have chronic faitgue syndrome or fibromyalgia. how can i tell the difference?
I have been sick since late october early november. So far, the doctors have not been able to diagnose anything and have basically been putting me on random medications just to relieve the symptoms. I have missed 28 days of school since I first began getting sick and I can only miss two more before the end of school. I’m only fifteen.
Symptoms I have:
Fatigue (sleeping thirteen hours +) i have real trouble making it through a school day without falling asleep)
exhaustion
pain in my knees, ankles, and weirdly my elbows.
headaches
congestion
ive had a fever a couple times..
ive been really nauseous occasionally and ende up having to go to the ER because of it.

Does anyone who has CFS or Fibromyalgia identify with these symptoms or know of any other possible causes?
p.s. All blood tests have come up normal, and I dont have rashes or bruising on my body.

A: Oh Boy, Fibromyalsia is really tough to diagnose, but my guess would be at your age it isn’t that. Sounds more like Rheumatoid Arthritis, to me. Your other symptoms DO coincide with either disease. Except for the nausea, and that is probably from your meds. Your body is young for all or those and they are very bad for you.

I too have had a slew of blood tests going as far back as when I was 17(I’m 42 now) and nothing ever showed up in those tests until about 3yrs ago. Have your parents ask for extensive X-Rays, and a MRI. That is one true way to show the deterioration of your cartilage. My son is 21 and has also been diagnosed w/ Osteoarthritis, So you might try to determine if it is in your family background.

I have found 1 product that has been very helpful to my son and I, and its natural. Kinda expensive but we both feel its worth it!!!!

Questions? you can e mail me at bearsmom2005@yahoo.com
Good Luck, it is a long journey, but dont give up!

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