Fibromyalgia and other chronic pain syndromes

Hmm since fibromyalgia is in the news nowdays, maybe it is a good time to talk about it on the braindiseases weblog. I did my internal medicine residency before I did neurology and I remember reading about fibromyalgia in Harrison’s Principles and Practices of Internal Medicine (this book is called the bible of internal medicine, a book every good internal medicine doctor should know well). Fibromyalgia occupied half a page and was right at the end of the section a kind of neglected disease. Many doctors (and I include myself in that group) do not consider that the disease actually exists.

We all have patients in our practice who carry the diagnosis of fibromyalgia, they have constant complain of pain in different areas of the body. When they first present to a doctor a work-up is carried out to determine the etiology of this constant pain. However inspite of multiple tests including but not limited to blood tests, imaging studies and sometimes even invasive studies no cause can be found. All the inflammatory markers in the blood come back negative (these include tests like ESR). These patients frequently have other diagnosis which fall into the category of psychosomatic disorders like IBS (irritable bowel syndrome) and chronic fatigue syndrome. Some of them may carry psychiatric diagnosis like depression or somatisation disorder. Thus fibromyalgia has been in the past a kind of waste-basket diagnosis given to patients with unexplained complaint of chronic pain referrable to different parts of the body. Since we did not truly believe that the disease exists, we did not have any good treatments for it. Doctors either treated these patients with anti-depressants or pain killers. This caused some unintended problems with some patients becoming dependent on pain killers like vicodin.

So do we know anything more of fibromyalgia now than in the 90’s?

Do we understand its pathophysiology better today?

Does the disease actually exists?

Fibromyalgia is currently diagnosed as per the criteria laid out by the American College of Rheumatology (ACR).

FIBROMYALGIA CRITERIA

A. Widespread pain must be present for at least 3 months. This pain must appear in all of the following locations:

  • Both sides of the body
  • Above and below the waist
  • Along the length of the spine

B. Pain in at least 11 of 18 specific areas called tender points on the body. The pain experienced when pressing on a tender point is very localized and intensely painful (not just tender). Tender points are located in the following areas:

  • The left or right side of the back of the neck, directly below the hairline
  • The left or right side of the front of the neck, above the collar bone (clavicle)
  • The left or right side of the chest, right below the collar bone
  • The left or right side of the upper back, near where the neck and shoulder join
  • The left or right side of the spine in the upper back between the shoulder blades (scapula)
  • The inside of either arm, where it bends at the elbow
  • The left or right side of the lower back, right below the waist
  • Either side of the buttocks below the hip bones
  • Either knee cap

Other long-term symptoms that may indicate fibromyalgia include:

  • Morning stiffness
  • Fatigue
  • Sleep disturbance
  • Numbness or tingling in the hands and feet
  • Headache

We nowdays think that these patients have an altered perception of pain and other visceral as well as somatic sensations. Let me explain this with a crude example. Suppose you have inflammation in your left shoulder joint, your brain shall get sensation from the sensory receptors located in the periphery of the joint.  The sensation shall travel to the sensory cortex of the brain (the part of the brain dealing with sensation) and you shall experience pain as a result. It is believed that fibromyalgia patients have altered pain perception in their brain, they either feel the pain too much or that it persists for longer than it is supposed to (crudely put maybe their brain is more pain sensitive). Some recent work involving functional MRI and other imaging studies does give some scientific evidence to suggest this.

Whatever the etiopathogenesis behind this disorder (if in fact the disorder does exist in the first place) now there are new drugs in the market been touted (and FDA approved) for the treatment of fibromyalgias. One of them is pregabalin marketed under the name of Lyrica. My personal experience using this drug in patients with fibromyalgia is very limited. If you or any of your loved ones is diagnosed with fibromyalgia, I would advise you to see a doctor with interest and experience in this disorder so that you can get benefits of newer treatment modalities.

Personal Regards,

Nitin Sethi, MD

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12 thoughts on “Fibromyalgia and other chronic pain syndromes

  1. Of course FM is a genetic disease of the CNS that manifests as a pain amplification syndrome. Pain produces fatigue and neurotransmitter imbalances, plus it effects the autonomic nervous system, immune system, HPA axis/thyroid, etc, etc and indirectly results in over 50 symptoms – nobody has them all. There are at least five subsets and a number of overlapping syndromes with comparable symptomology and that makes it difficult, if not impossible, to tease out and Dx FM.

    Since we can’t Dx it with 100% accuracy, I have been trying to get some research lab to forget large cohorts plus controls and even the addition of a third group with RA or some such condition as has been done at times. I have volunteered my family – with high/low pain threshold members who have never met (eliminating environmental considerations) and who are know to have mutations when they normally would not. They test negative because the snips used are not for FM but similar conditions – and it has been around 5-6 generations.

    My thesis – compare a small multi-generation familial sample set like ours and see what pops up in the autosomal DNA (under/over active genes and/or mutations). It all does not have to be tested – this research has been going on since 1980 – and “hot spots have been clearly identified.

    But as long as they do genetic research with an mixed sample of whatever size (nonhomogeneous because Dx is so poor) against controls, they are wasting their time. Thirty years and they are still repeating studies using the same methodology and they wonder why they can’t find a cause and prove it exists. Research scientists can be like an American who moves to the UK and refuses to drive on the right side of the road.

    To say there is no evidence is incorrect – fMRIs have shown dysfunction in the pain centres of the brain; we know that red blood cells are enlarged and don’t get to the smallest capillaries; spinal taps have shown dysfunctional serotonin levels; several neurotransmitters are in terrible imbalance – the n.t. du jour is dopamine, but they have targeted other in the past, and Canada has produced an international Consensus Document for Clinicians available on the site of our national FM-ME Association. It is for clinical use, but most doctors will not read it, leaving the older tender point test as a fallback for researchers. The same researchers and doctors who don’t “believe” in FM are those who won’t read the clinical document and won’t change genetic testing methodology.

  2. To say you don’t “believe” in fibromyalgia seems counterintuitive and insulting to me. It’s very real to those of us who live with it on a daily basis, much more real than say, your “medical expertise”.

  3. Dear J
    I can understand your anger. I did not mean it to be insulting to you or other patients with fibromyalgia. If you read my post through, you will appreciate that it is infact very balanced. I have tried to emphasize how little we still know about this disease process, though now there is some scientific evidence from functional MRI studies about altered pain perception in patients with fibromyalgia. I mention this (as does Jim in his comments posted here).
    I also mention quite honestly that some doctors do not believe that the syndrome/ disease truly exists.
    I tried hard not to bias my post with my personal opinion about the condition. Hence I end with advising my readers to seek a doctor who has special interest in the condition so that they can avail of newer treatment modalities.
    I do not take offence by yours or others opinion of my post. It is good a discussion has been initiated. It is high time we tackle some diseases we do not know much about.
    I am happy you wrote in and I posted your comments just as the way you send them to me. If you have some insights about treatments which have helped you, please do share.
    Personal Regards,
    Nitin Sethi, MD

  4. Have you not seen the research studies that show increases in Substance P or the studies that concluded their findings show that fibromyalgia is associated with a central nervous deficit in sensory processing (American Pain Society. “Fibromyalgia Pain Linked With Central Nervous System Disorder.” ScienceDaily 3 June 2008. 27 June 2008 ). How about the various neurohormonal changes that have been shown in multiple studies? It seems to me that people like yourself tend to perpetuate the widespread belief that the general public has that such a syndrome or process doesn’t exist.

    On that note, how many members of the medical community didn’t understand or know about AIDS/HIV in the eighties? How many doctors thought AIDS didn’t exist, but here we are twenty something years later with people all around the world dying from it. Many types of diseases have unexplained processes and beginning, but you don’t see the medical community condemning people with say, Achard Thiers Syndrome, just because the exact cause is undetermined.

    People like yourself are the people making millions of sufferers with Fibromyalgia hide themselves for fear of ridicule. I hope you become afflicted with Fibromyalgia and maybe then you will understand how awful it is for people like yourself to say such things.

  5. Dear M,
    thank you for your comments and the information about substance P and other pain modulators.
    Personal Regards,
    Nitin Sethi, MD

  6. When many persons over many decades from all over the world arrive at their doctors with a similar set of bewildering symptoms that cause them pain and fatigue, a thoughtful group of health experts will conclude that a pattern of ill-health is occurring. Denying that it exists is mere foolishness. Digging in to discover what is going on seems a more intelligent response. So what if it’s a difficult problem? Work harder.

    To supposedly denigrate the ill person by attributing the disorder to “mental illness”, thereby making it physically untreatable (as well as someone else’s problem), merely reveals the ignorance of the doctor. Mental illness is a disease that has it’s source in the body as much as any other illness. That the medical profession does not yet understand that is patently obvious. Do you know that for years if a person had diagnosable depression, they were automatically excluded from “eligibility” for a fibromyalgia diagnosis? As if a person cannot have both? Psychological illness both comes from the body and also spills out into the body. Please get a clue!!! We need you guys!!!

  7. DEAR (DR. SETHI), HOW DARE YOU TELL (M) NOT TO GET PERSONAL! I AM FIXING TO LOSE MY HOME, THE SHIRT OFF OF MY BACK, EVERYTHING I OWN, AND END UP OUT IN THE STREET BECAUSE OF (PHYSICIANS) LIKE YOU THAT HAVE TOLD ME FOR (20) YRS. NOW, THAT (FIBROMYALGIA/CHRONIC FATIGUE, ETC.) IS EITHER (PYSCHOSOMATIC) OR IT (DOESN’T EXIST)! I WASN’T AWARE THAT WHEN (VIRAL TORCHES) AND (EPSTEIN BARR TESTS) COME BACK POSITIVE WITH VERY HIGH (TITERS) THAT IT WAS A (PSYCHOLOGICAL) ISSUE! I THOUGHT THAT WAS A (PHYSICAL) ISSUE! HOW IN THE WORLD DID YOU GENIUSES COME TO THE CONCLUSION THAT (VIRUSES) ARE (PSYCHOSOMATIC)?

    I HAVE BEEN ONE OF THE LUCKY ONES! IF I DIDN’T HAVE A LITTLE BIT OF INHERITANCE MONEY TO HAVE LIVED OFF OF THE LAST FEW YEARS, I WOULD HAVE ALREADY BEEN OUT IN THE STREET BECAUSE I WOULD HAVE ALREADY LOST EVERYTHING I OWNED BECAUSE OF MY INABILITY TO WORK. MY MONEY IS ALMOST GONE THOUGH, AND I DON’T QUALIFY FOR DISABILITY OF ANY KIND BECAUSE OF (DOCTORS) LIKE YOU THAT THINK THAT KEEPING A ROOF OVER OUR HEADS, FOOD ON THE TABLE AND CLOTHES ON OUR BACKS ARE OF NO IMPORTANCE WHATSOEVER. WELL, OF COURSE, IT’S NOT IMPORTANT TO YOU IF IT DOES NOT EFFECT YOUR LIFE IN ANY WAY! CALL US SELFISH, BUT, WE PATIENTS WANT MORE THAN EVEN THAT!. BELIEVE IT OR NOT, WE HAVE THE SAME DREAMS AND GOALS OF WORKING, GOING BACK TO SCHOOL, FURTHERING OUR EDUCATION, MAINTAINING A SUCCESSFUL CAREER, AND MOST IMPORTANT OF ALL, NOT BECOMING A BURDEN TO OUR SPOUSES, CHILDREN OR THE GOVERNMENT! WE ARE NOT BUMS LOOKING FOR HAND OUTS! FOR YOUR INFORMATION, THESE ILLNESSES DO EFFECT US WITH WITH DIRE CONSEQUENCES THAT WE HAVE NO CONTROL OVER, SO, YOU BET WE TAKE IT PERSONAL WHEN YOU ARE BUT YET ONE MORE (PHYSICIAN) THAT MINIMIZES THE SERIOUSNESS, THE DEVASTATION AND EFFECTS OF THIS ILLNESS! SO, I HAVE TO TELL YOU, YOU DO HAVE ALOT OF GALL TO TELL US NOT TO TAKE IT ANY OTHER WAY BUT (PERSONAL)!

    AS THE YEARS GO BY, MY SYMPTOMS ARE GETTING WORSE AND DURING THOSE (1) OUT OF (7) DAYS THROUGH THE WEEK THAT I AM NOT SO SICK THAT I CAN AT LEAST SIT IN FRONT OF A COMPUTER FOR A LITTLE WHILE TO TRY TO DO MORE RESEARCH FOR ANSWERS, I WOULD LIKE TO SAY THAT IF ALL OF YOU (PHYSICIANS) THINK WE ARE CRAZY OR THAT THIS IS JUST IN OUR HEADS, MAYBE YOU DO INDEED NEED TO SUFFER WITH THE ILLNESS ITSELF JUST LIKE (MARY) STATED AND LOSE YOUR PRACTICE, YOUR HOME, AND EVERYTHING YOU OWN BECAUSE OF THE FACT, (I CAN GUARANTEE YOU), YOU WILL BECOME SO ILL AND YOUR COGNITIVE ABILITIES WILL BE SO EFFECTED MORE TIMES THAN NOT, THAT YOU WILL NOT BE ABLE TO WORK AT ANY JOB, MUCH LESS PRACTICE MEDICINE.

    THEN WHEN YOU SEEK (MEDICAL HELP) FOR YOUR SYMPTOMS AND WHEN EVEN YOUR OWN (COLLEAGUES) TELL YOU THAT YOUR ILLNESS IS (PSYCHOSOMATIC) OR THAT WHAT YOU HAVE DOES (NOT EXIST), SEE HOW YOU WAGER THE LOSS OF YOUR HEALTH, YOUR PRACTICE, THE ROOF OVER YOUR HEAD AND EVERYTHING ELSE THEN!

    I WOULD HOPE THAT IF IT DID HAPPEN TO YOU THAT YOU WOULD HAVE A (SPOUSE) OR (CHILD) THAT WOULD BE ABLE TO TAKE ON THE UNIMAGINABLE RESPONSIBILITY OF TAKING CARE OF YOU AS A (CHRONICALLY ILL PATIENT) FOR THE REST OF THEIR LIVES! MOST OF US DON’T HAVE THAT OPTION! MANY OF US HAVE ENDED UP BEING (ABUSED, MISUSED/ABANDONED/and eventually/DIVORCED) BY OUR SPOUSES AS WELL, BECAUSE OF (PHYSICIANS) LIKE YOU WHO TOLD OUR SPOUSES THAT OUR SYMPTOMS ARE (PSYCHOSOMATIC) OR (DON’T EXIST)!

    LET ME CLUE YOU IN ON A LITTLE TIDBIT! BECAUSE YOU BELIEVE THESE ILLNESSES ARE (PSYCHOSOMATIC) OR (DO NOT EXIST), YOU HAVE NOT ONLY WASTED YOUR TIME AND FINANCES BECOMING A (DOCTOR), BUT, YOU HAVE WASTED THE TIME AND THE TREMENDOUS FINANCES OF MANY PEOPLE WHO ARE SERIOUSLY ILL AND NEED HELP! THE FEW PATIENTS YOU TREAT VS. THE THOUSANDS OF PATIENTS THAT WON’T EVER RECEIVE TREATMENT, WILL NEVER MAKE UP FOR THOSE YOU KICK TO THE CURB AS A RESULT OF YOUR (PSYCHOSOMATIC BABBLE)! YOUR MEDICAL DEGREE IS NOT WORTH CRAP WHEN PATIENTS START LOSING EVERYTHING THEY OWN BECAUSE OF (DOCTORS) THAT DENY THAT (FIBROMYALGIA) OR THAT OTHER (INFLAMMATORY/PAIN ILLNESSES) DO EXIST ALONG WITH DENYING THE DEVASTATION THAT GOES ALONG WITH IT! IF ALL OF YOU (PHYSICIANS) DO NOT WANT TO CALL IT (FIBROMYALGIA), THEN SO BE IT! CALL IT WHAT YOU WANT! BUT, THESE (VIRUSES) ARE NOT JUST ALL IN OUR HEADS AND THEY DO EXIST!

    UNPOPULAR TO YOUR BELIEF, WHEN MY (GRANDCHILDREN) COME UP TO ME AND I CAN’T HUG THEM BECAUSE IT HURTS MY SKIN AND MUSCLES TOO MUCH FOR THEM TO TOUCH ME, THAT IS REAL! WHEN I HAVE THOSE (FLU-LIKE) SYMPTOMS THAT MAKE ME VERY SICK, ACHY AND ALMOST TOTALLY INCOHERENT SO THAT I AM NOT ABLE TO FUNCTION IN EVEN A HALF-WAY NORMAL CAPACITY, THAT IS REAL! MY DESIRE TO WORK, GO BACK TO SCHOOL, ATTAIN AND MAINTAIN A CAREER, THOSE DESIRES ARE REAL! BUT, I AM TOO SICK TO DO ANY OF THOSE THINGS! THROUGH MY INHERITANCE, I BOUGHT A TRAILER ON AN ACRE OF LAND (10) MOS. AGO. I HAVE AS OF YET UNPACKED MORE THAN MAYBE (5) BOXES, BECAUSE I GIVE OUT TOO EASILY AND IF I PUSH MYSELF, I START VOMITING AND HAVING DYSENTERY! THAT IS REAL! I NEED TO GET BACK INTO THE WORK FORCE OR I WILL END UP LOSING EVERYTHING I OWN BY THE END OF THIS YEAR (2008) IF THAT DOES NOT CHANGE! THAT IS REAL!

    I WAS ACTUALLY DIAGNOSED APPROXIMATELY (20) YRS. AGO! BUT, I HAVE SUFFERED WITH THE SYMPTOMS EVEN LONGER THAN THAT! THAT IS REAL! I DIDN’T JUST WAKE UP ONE DAY MORE THAN (20) YRS. AGO, AND DECIDE THAT I WAS GOING TO BECOME AN IRRESPONSIBILE BUM (DR. SETHI)! I HAD DREAMS! I HAD GOALS! I HAD PLANS! BELIEVE IT OR NOT, PART OF MY PLAN WAS TO GO INTO MEDICINE! BUT, ALL OF THAT HAS BEEN DESTROYED BY THIS ILLNESS, WHETHER IT BE (FIBROMYALGIA), (ENCEPHALOMYELITIS), (POLYMYOSITIS) OR WHATEVER ELSE YOU MIGHT WANT TO REFER TO IT AS! MANY (PHYSICIANS) HAVE TOLD US WE PROBABLY HAVE (LOW SEROTONIN LEVELS) AS WELL, WHICH WOULD ACCOUNT POSSIBLY FOR THE (CHRONIC FATIGUE) AND (CLINICAL DEPRESSION) SOME HAVE SUFFERED WITH! HOWEVER, (CLINICAL DEPRESSION) HAS A COMPLETELY DIFFERENT RING TO DEALING WITH THE OVERALL ILLNESS ITSELF WHEN MUCH OF OUR (DEPRESSION) HAS ACTUALLY OCCURRED OR BECOME WORSE AS A RESULT OF (PHYSICIANS) LIKE YOU THAT BLOW US OFF LIKE WE ARE IDIOTS!

    YOU POSTED TO (JILL) THAT YOU DO NOT TAKE OFFENSE TO THE (OPINIONS, ETC.) THAT ARE POSTED TO YOUR BLOG. HOWEVER, I HAVE TO TELL YOU (DR. SETHI), I TAKE GREAT OFFENSE TO ANY (PHYSICIAN) WHO CLAIMS TO BE A (DOCTOR) AND THEN TRIES TO MAKE THESE ISSUES (PSYCHOLOGICAL), JUST BECAUSE THEY DO NOT HAVE THE (COURAGE), (KNOWLEDGE) OR (BELIEF) AS A (PHYSICIAN) TO ACCEPT THIS AS A REAL ILLNESS. WHY HAVE YOU ALL (BETRAYED AND ABANDONED) US? I THEREFORE AM IN GREAT DURESS OVER WHY ANY OF YOU BECAME (PHYSICIANS) IN THE FIRST PLACE!

    I WANTED TO GO INTO MEDICINE TO BE PART OF A (FELLOWSHIP) THAT (RESEARCHES, HEALS, MINISTERS TO OTHERS, AND TREATS NOT ONLY THE PHYSICAL, BUT THE PSYCHOLOGICAL ASPECTS OF THEIR PATIENTS). BUT, IT SEEMS LIKE THAT THE (FELLOWSHIPS) TODAY ARE ROOTED MORE INTO (MAKING MONEY AS A BUSINESS), THAN (HEALING AND MINISTERING TO THE SICK)! I HAVE NEVER WANTED TO BE A PART OF A (FELLOWSHIP) THAT IS MORE INTERESTED IN TAKING SOMEONE’S MONEY AND THEN NEVER GIVING A PATIENT ANSWERS. I CERTAINLY WOULD NEVER WANT TO TELL THEM THAT THEIR ILLNESS IS (PSYCHOSOMATIC) OR THAT IT DOES (NOT EXIST) WHEN I SEE PATIENTS LOSING EVERYTHING THEY OWN, LOSING EVERYTHING THEY HAVE WORKED SO HARD TO ATTAIN AND MAINTAIN AND THEN GIVING UP COMPLETELY AND ENDING UP OUT IN THE STREET OR DEAD BECAUSE OF (DOCTORS) WHO DECIDED TO PICK AND CHOOSE WHO IS WORTHY AND WHO IS NOT. WE DESERVE A WHOLE HECK OF A LOT BETTER THAN TO BE TAKEN ADVANTAGE OF (FINANCIALLY, EMOTIONALLY, MENTALLY OR PHYSICALLY) BY ESPECIALLY THOSE OF YOU WHO SUPPOSEDLY TOOK AN OATH TO DO OTHERWISE! SO, YES (I), LIKE (MARY) AND THE MANY THOUSANDS OF OTHERS WHO HAVE BEEN (VICTIMIZED/and/ABANDONED), YES I DO, TAKE THAT VERY PERSONALLY!

    IT’s NOT A MATTER OF NOT UNDERSTANDING OR NOT HAVING EMPATHY FOR THE (STRESS) THAT YOU AS (PHYSICIANS) WENT THROUGH IN (MEDICAL SCHOOL) OR THE (STRESS) THAT YOU GO THROUGH EVERY DAY WHEN TREATING PATIENTS, ESPECIALLY THOSE WHO HAVE EXTRA UNUSUAL AND UNCHARACTERISTIC SYMPTOMS. BUT, WHEN YOU TAKE YOUR (MEDICAL PRACTICE) WHICH WAS ALLEGEDLY SUPPOSED TO BE A CAREER THAT WAS ESTABLISHED FOR THE (HEALING/and/MINISTERING) OF ALL PEOPLE WHO SEEK YOUR HELP, AND YOU PUT THAT (PRACTICE, MONEY/or/ANYTHING ELSE) ABOVE THE NEEDS OF YOUR PATIENTS THEMSELVES, THEN YOU HAVE ALREADY LOST SIGHT TO THE TRUE PURPOSE OF YOUR CALLING. I AM A (52) YR. OLD FEMALE NOW, AND I HOPE THAT BEFORE I ACTUALLY DIE, THAT I WILL EXPERIENCE THE (HOPE) OF HAVING A (PHYSICIAN) THAT CARED ENOUGH TO ENCOURAGE ME TO (LIVE), INSTEAD OF ABANDONING ME TO (DIE). I HAVE ONLY MET ONE (GREAT PHYSICIAN), BUT (HE) SITS AT THE RIGHT HAND OF THE THRONE OF (GOD). (THAT GREAT PHYSICIAN) HAS GIVEN ALL OF THE REST OF US ON THIS PLANET THE (PURPOSE) TO BE THE (VESSELS) BY WHICH TO CARRY ON (HIS) WORK. BUT, THOSE OF US WHO ARE NOT (PHYSICIANS) CAN NOT FULFILL OUR PURPOSES, IF YOU (PHYSICIANS) DO NOT FULFILL YOURS. WE ARE NOT JUST (A VIRUS, A CONDITION, A SYMPTOM, A ILLNESS, DISEASE OR PAIN IN THE A _ _). WE ARE HUMANS JUST LIKE YOU AND WE DESERVE THE SAME CONSIDERATION AND RESPECT AS YOU. THANK-YOU FOR YOUR TIME.

    SINCERELY YOURS, MS. BENNIE JOHNSON~

    1. thank you. you took the words right out of my mouth. i have not been able to keep a job in years because after a couple of months i end up in so much pain i can not function. i do not qualify as disabled because i can work sometimes. i just never know when or for how long. i have been given several different medications including the latest one, lyrica. none of them do anything except make me unable to think clearly. i live in a small town and have yet to find a doctor with any real answers for me. i even attempted to back to college myself, but was unable to complete that as well. it bothers me to think that people look at me as if i am trying to get attention. it has lead me to a life of seclusion. i guess us patients will have to be the ones to get to the bottom of this.

      1. Dear Kelly,
        thank you for writing in. There is much which is still unknown about fibromyalgia and chronic pain syndrome. Patient’s experience a tough time in trying to get an attentive doctor and family members who understand this condition and their suffering. My personal experience with this is that patient’s do improve and then frequently lapse. Usually a comprehensive treatment plan involving the judicious use of neuropathic pain medications like Lyrica, as well other modalities-physical therapy, psychotherapy (not because the patient is “crazy” but because patients frequently have additional comorbidities of anxiety and depression) and exercise works best.
        I am so happy to learn you are trying to help yourself. My best wishes are with you. Feel free to write in again.

        Personal Regards,
        Nitin Sethi, MD

  8. Dear Ms. J,
    You have righly pointed out that some physicians and that includes me have not given due consideration to patients suffering from fibromyalgia, to their suffering and pain. Like I have said, we still do not know much about this entity and that is one of the reason why you and others feel that medicine and some of us doctors have not lived up to our patient’s expectations. Hopefully as we learn more about fibromyalgia, we shall be able to diagnose earlier, treat more effectively and offer more care.
    I thank you for writing in.
    Personal Regards,
    Nitin Sethi, MD

  9. the icarecafe would really like your help with a discussion on Fibromyalgia

    As you many know the icarecafe has been set up to provide a space for patients, carers and their supporters online.

    Some of the members have set up a discussion group on the subject of Fibromyagia. The group has asked lots of questions which are still in the process of being answered. So we thought it appropriate if we invited people from other Fibromyalgia discussion group and blogs to ask if they wished to participate.

    To have a look at the discussions so far please have a look at

    Please do feel free to join in the discussions and to post any information which might be of interest to our members.

    If you have any questions please feel free to get in touch. I’m one of the moderators of the icarecafe and I can be contacted by sending and internal email to my profile.

    Thanks very much in advance for your help!

    Best wishes

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