had this illness for 20 yr plus

hi. i am a women aged 54 ..in chronic pain all over from head to toe ..was sporty and very fit when younger .did heavy lifting and worked hard .had abcesses and operation for pilonidal sinus at bottom of spine .and glands removed under arms .but in 1993 my mum died .i gave birth to twins after funeral .and got house same week .i never recovered was diagnosed with M.E. i just plodded along .back sore sweating .pain started all over body ..didnt drink but when got taxi home from a night out .people used to say .you were in some state last night ..thinking i was drunk .my body shut down after couple of hours out..even in supermarket if i go shopping ..humiliating isnt the word lol..cut a long story short...had appointment at doctors on a fri .at tea time ..locum women doctor ...i had a flair up was crying and in a state ..she said to me what do you want me to do give you a morphine injection on a fri teatime !!!!!!!!!!!!!1i left .and believe me if i could have managed to get to the road .i would have thrown myself in front of the traffic ...i had had enough .ended up 24 emergency .got medication .changed doctors and never looked back ..i cant sleep cant sit its like my bones are bare and the pain is really debilitating .i am willing to go through any experiment on the planet to get a cure ..tried everything .and nothing works .im housebound .but hey ive got a sense of humour keeps me going .pain doctor said ive got chronic widespread pain ..why isnt this government not researching this illness enough ??????? america is doing more .than us ..ps. cant walk about with t.shirt saying do not touch ! lol xxx

38 Replies

  • So sad in all these years that no treatment has been found and through all the suffering a sense of humour remains a tribute too the courage that has brought you so far

  • I truly understand how you feel. I have had M.E. for 16 years and now I have Fibromyalgia for 3 years. I can now go out to work, but I've been where you are and I still am on days where I can't get out of bed. Well done you for keeping your sense of humour when everything feels like it has fallen to pieces

  • Have lived many of your symptoms. Loads of pain sometimes with overwhelming fatigue. Had to have help doing everything. I am 64 and was very physically active in my younger. My pain set in about 6 years ago. Doctors would look at me blankly and just treat symptoms. My symptoms were mostly pointing to Fibro with CFS. I happened on a book called "What Your Doctor May Not Tell You About Fibromyalgia." I got it and read it. It was me. His protocol and how he discovered it, after decades of research, finally gave me some hope. He recommends Mucinex. It is not harmful and you must take it for the rest of your life. If you read his story, he explains medically why this works and how he came to his conclusions. I have now been on Mucinex for almost two years. I can now walk, lean over, sit on a regular height toilet seat, my special raised bed has been replaced to a normal height bed, and pain is almost virtually gone. Their is a great support website I will leave for you to look up. Hope this helps. GUAIGROUP@COMMUNITY.LSOFT.COM

  • Hi Tmseldon,

    What is mucinex? Is it herbal, I am 55 suffering Fibromyalgia since 1995/6 I also have underactive thyroid & pernicious anaemia also alergies to a few things, with thyroxine taken for my underactive thyroid, there are so many herbal things I cant take because of this, where do you get mucinex? Is it an over the counter item or does the doctor precribe it? Wishing you continued good health

    Honor x

  • Hi, here in the US the brand name Mucinex is an over the counter cold remedy. It is advertised to help break up congestion. I have never heard it being used for anything else. I don't know the active ingredient, but I'm sure you can Google it.

  • Hi Mark5177,

    Thank you so much for the Mucinex explaination, it kind of makes sense with the name now I know, it's a decongestant :D thanks agsin for taking the time to reply to my question, take care, good health to you x

  • I too have had this condition for 20+ years. When I was diagnosed, my doctor gave me the news, "I have good news and I have bad news. The good news is, you are not going to die. And the bad news is, you are not going to die." Truer words have never been spoken.

  • Get the t shirts printed "Dont touch " I could often do with one :)

    Hang on in there I understand how tough times are but your spirit and your sense of humur will carry you on. Some days are good grab them and make the most of them. Some times the pain is sooo rotten get your Tshirt out !

    We are always about come on have a chat let your thoughts out feel a but better I hope

    Best wishes



  • Yes, it is just awful, my GP isn't interested and in lots of pain, also house bound. It is now past 6.30am and in too much pain to sleep. Just lying down increases the pain and now getting terrible nerve pain. Hurts to even wash my hands! Totally doped up but nothing is working. Another day of being a zombie.

  • OK not a p***** against the wall competition but had the condition for 30 years this May. Contracted when a farmer sprayed his fields next to our house when I was pregnant. Both OH and I were ill but he of course was not carrying a baby and was only ill for a week.

    For the last 12 months I have been able to live a normal life, look after myself, socialise, go out on a bus, drive a car and go for walks.

    No drugs except for under active thyroid.

    I have topped up my vitamin D levels eat a healthy diet no ready meals no junk food. I get outside every day and really reduced my stress. To do this I have left my home and my family, moved to the sun, although they come over as often as they can. The relationship with my husband is better than it has been in 30 years as he is now my husband again rather than my carer.

    I do realise that not many people can do this, I can still work. The cost of the flat is around £250 a month but I have paid that in one visit to a specialist if you include the injections I was given.

    Only 1 GP not interested but in 30 years not a lot of help.

  • Hi Betty67

    Could you tell me where it is that you go to in the sun. I ask because I am looking to spend my winters away from the UK. Being in the warm and sunshine makes you feel so much better.

    Thank you


  • Hi John

    I am on Gozo which is one of the Maltese Islands. One of the official language is English so widely spoken and on all the forms: they drive on the left hand side of the road and currently have a reciprocal health agreement with the UK.

    Depending on where you live accommodation is cheaper - obviously near the sea has a premium but I can see it when I am hanging out washing.

  • Hi Betty67,

    I shall keep that in mind as a place to go. I am in Thailand at the moment but I have just been told by my Consultant that I must return home as soon as possible, as my blood results are not good. I have CLL and possibly Fybromyalgia.


  • Sorry you are not doing well at the moment. What is CLL?

    Being ill for so long I am still not fit, but can do so much more than I use to be able to, I hope you find something to help you.

  • Hi Betty67

    CLL IS chronic lymphocytic Leukaemia, not very nice! I haven't been diagnosed yet but almost sure I have some form of Myalgia as well.

    I am picking your brains about Gozo, as I need to be somewhere warm to recuperate now and then, and close to home. Can I rent a flat or something affordable there and is it nice on Gozo beach wise.

    I am age 72 now and just want somewhere peaceful and warm to spend at least the winters away

    Thank you. John133

  • Gozo is small and does take an effort to get here from the airport. I rent a two bedroom flat away from the coast for around £250 and that includes rent, water and electricity. Gozo has some beaches but sandy ones are not easy to get too. It is a very rocky place. Prices with walking distance are a lot more expensive, my place is not within walking distance for me but my OH and my son / visitors manage it easily.

    For some medical conditions you have to go to the main island although for this there is a free bus service (need to book and only once a day).

    The houses are designed for the warm weather and some people do find them cold in the winter, our house in UK is very cold in the winter so not a problem for me.

    Some things are cheaper here and other much dearer.

  • Thanks I shall take what you have said onboard. and do a bit more research on the web. The price that you pay would be about what I could afford to.


  • as in other places it is location location location. One thing about the coast though it is shut in the winter - I mean the cafes restaurant and shops, a friend lives in a beautiful place but has to get on a bus for every thing she needs.

  • Betty67 - I really admire you - you have really strived to lead a better life despite this illness, I really wish you well. xx

  • thank you sunnygirl2, I was so desperate when I came out here I was ready to try anything. I always felt better here when I came on holiday, but it was just being on holiday it was being here so when specialist said the only thing he could do for me was stronger drugs with horrible side effects I decided to take the plunge. It is not a cure the symptoms come back when I go back to the UK.

  • we are planning on visiting Malta later this year to see how feasible it would be to think of living there - watch this space as they say, we visit Italy quite a lot as our family is there but we have a 5 hour drive to the airport in the UK so its a bit of a drag travelling. x

  • Hi inagony,

    I have suffered since 1995/6 had to give up work in 2002, was on Voltarol also known as Diclofenac 50mg 3 times a day for for 8 years with little difference in my condition it jyst xchange the type if pain, but not the pain severity, so I weaned myself off them, & only take paracetamol on my worst days, about 2 years ago, I had a chronic flare up, nithing I was doing gave ne any relief, so went to my doctor & asked for Voltarol/diclofenac to be told they don't prescribe it anymore as it has been discovered that it now known to cause strokes & heart attacks!!!! I started going to aqua classes & swimming as being in the water gives me great physical relief, I have more good days than bad now, good days are still affected by the fibro, with the exhaustion, poor concentration & very bad memory....... now what was I saying hee hee got ti keep the humour otherwise you'd just go mad! Try if you can to get to swimming pool, even if you can't swim, just being able to walk in the pool pain free is a great relief as being in the water takes the weight of the muscles & joints a little exercise too, so when you get home, the sleep that undoubtedly follows is actually restful sleep & not the usual disturbed painful sleep that we are familiar with!!! Love & Gentle hugs to you xx

  • I have had FM for many years but managed to just about keep a recruitment company going. I have now been properly retired for just over 2 years and do nothing. I keep thinking is it my brain or is it the pain that stops me from doing things. People get classic cars restored, is there a similar thing for human bodies? I don't want to move myself but feel that if someone could massage away the pain it might give me the impetus to resume my social life and get moving (not 'exercising'!). I have been on all sorts of medications for depression and FM for 30 or so years, but none have made me feel like I want to feel, so about two months ago I took myself off everything except the thyroid and blood pressure pills and (no my doctor doesn't know), and I don't feel any worse or better, except that now I do feel as if I'm actually alive. There are highs and lows but they are better than nothingness. When the pain is really bad I rub in masses of Ibuprofen Gel which helps a bit. I am an OAP with no other income to spend on luxury treatments, but does anyone know of a human body restorer in the Worthing area willing to have a go at getting me moving, gently and without telling me to 'make an effort' so that at least I could start things like gardening and vacuuming again? I have had lots of counselling over the years and understand myself very well, I am quite intelligent but 'wilful' and 'frivolous' describe me well. My beloved cat died recently so I could find a little extra money to pay for some help. Anyone with a good idea?

  • Hi Robrrta, have you tried phoning your local colleges, some run courses in massage, reflexology etc and treat people at very reduced cost. I find it very helpful, a bit of a jumpstart for the body, calms you down and calms down painful muscles, good luck

  • Hi Shazzy, Thank you so much for your reply. What a good idea, I shall get on to it immediately. We have some very good colleges locally, one that I know specialises in hair dressing, beauty courses etc, so they might well teach massage as well. You have made me feel much better already. Thank you.

  • Hi, sorry you are so low and miserable. I have been like this myself with not much support from the medical professions. However after a recent referral to hospital they found I have low Vit D so have put me on supplements. I have to say since starting them the pain is much less since, in fact I have just been out for a walk with my dogs and this is the first time in about 8 months because when I am ill I can't walk as it feels like my bones are shattered glass. I still have some pain in my left shoulder, can't lift my arm and my lower spine is stiff but with exercise this may get better.

    Can you get yourself checked for Vit D deficiency?

    I hope you get some help soon.

  • Read this article by Dr. Amand who developed the Mucinex protocol. There are hundreds of success stories of pain relief. It was my only hope. It is aa long process, but I hung in there and found increasing relief from six months on.

    The Guaifenesin Protocol

    Fibromyalgia is a legitimate, common entity. It is a cyclic and progressive disease which affects millions of patients, primarily women, regardless of race. Manifested by multiple symptoms that may initially last only a few days, it eventually progresses to affect multiple areas and bodily systems until patients simply cycle from bad to worse. At present, there are no diagnostic laboratory tests for fibromyalgia. Our recent research paper reported several abnormal cytokines that change during the course of our treatment.1

    Patients are often referred from one doctor to another, and told that they have chronic fatigue, systemic candidiasis, myofascial pain, irritable bowel or vulvar pain syndrome. Too often, physician and patient focus on symptoms and fail to perceive the much larger problem. These dead-end diagnoses result in the treatment of symptoms which is only partially effective and at the same time ignores the underlying cause and the disease that continues to worsen over time.

    The American College of Rheumatology recommends searching for tender points at eighteen predetermined sites on the body to establish a diagnosis of fibromyalgia. However some patients simply have higher pain thresholds so while they complain of body aches or stiffness, they focus mainly on fatigue and cognitive impairments. These so-called Chronic Fatigue Syndrome patients suffer from the same metabolic abnormality. Since pain perception varies greatly, we urge physicians to seek objective evidence instead of the purely subjective response to variably tender points. The confirmation of fibromyalgia is far more secure when using our method of palpation that we call mapping (see below).

    Fibromyalgia has no set symptoms and many combinations from the following list are interwoven:

    Central Nervous System: Fatigue, irritability, nervousness, depression, apathy, listlessness, impaired memory and concentration, anxieties and suicidal thoughts. Insomnia and frequent awakening due to pain result in non restorative sleep.

    Musculoskeletal: Pain and generalized morning stiffness could arise from muscles, tendons, ligaments and fascia of the shoulders, neck, entire back, hips, thighs, knees, ankles, feet, inner and outer elbows, wrists, fingers, and chest. Injured or old operative sites are commonly affected. Though fibromyalgia is described as a “non-articular” disease many know better: Joint pains with or without swelling, redness and heat are frequent. The litany includes foot or calf cramps, numbness and tingling of the face or extremities.

    Irritable Bowel: (Often called leaky gut, spastic colon or mucous colitis). Symptoms include nausea (often brief, repetitive waves), indigestion, gas, bloating, pain, cramps, constipation alternating with diarrhea and sometimes mucous stools.

    Genitourinary: Common are pungent urine, frequent urination, bladder spasms, burning urination (dysuria) with or without repeated bladder infections and interstitial cystitis. Vulvodynia (vulvar pain syndrome) includes vaginal spasms, irritation of the vaginal lips (vulvitis) or opening (vestibulitis) and painful intercourse (dyspareunia). It typically mimics a yeast infection but without the cottage-cheese discharge. Intense PMS and uterine cramping are common. Symptoms of fibromyalgia are worse premenstrual.

    Dermatological: Various rashes may appear with or without itching: Hives, red blotches, itchy bumps or blisters, eczema, seborrheic or neurodermatitis, and rosacea. Nails are often brittle and of poor quality and hair falls out prematurely. Strange sensations are common such as cold, heat (especially palms, soles and thighs), crawling, electric vibrations, prickling, super-sensitivity to touch, and flushing that is sometimes accompanied by sweating.

    Head, Eye, Ear, Nose, and Throat: Headaches (migraines), dizziness, vertigo (spinning) or imbalance; dry eyes as well as itching and burning with or without sticky or crusty discharge upon awakening; blurred vision; nasal congestion and post-nasal drip; painful, burning tongue, mouth and abnormal tastes (scalded, bad or metallic); ringing in the ears (tinnitus) or lower-pitched sounds; ear and eyeball pain; sensitivity to light, sounds and odors.

    Miscellaneous Symptoms: Weight gain; low grade fever; lowered immunity to infections; morning eyelid and hand swelling from fluid retention that gravitates to the lower extremities by evening where it stretches tissues causing the restless leg syndrome.

    Hypoglycemia Syndrome: This is a separate entity. Thirty percent of female and twenty percent of male fibromyalgics suffer both conditions (fibroglycemia). Symptoms greatly overlap those of fibromyalgia, but sugar craving accompanied by tremors, sweating, anxiety, panic attacks, heart pounding, faintness, and frontal headaches, especially if hunger induced, are solid clues to the diagnosis. Hypoglycemics must follow a prescribed diet or recovery will not be complete even with the reversal of fibromyalgia. (See Hypoglycemia for more information.)

    Trauma, infection or stress can aggravate or tip susceptible individuals into fibromyalgia but are not the basic causes. It is generally accepted now as an inherited disease and preliminary results from our research team at City of Hope support this belief. We have treated family members that spanned three generations including four two-year-olds as well as patients who became symptomatic only in their seventies. This age spread strongly suggests a multi-genetic disease in various combinations. Boys and girls suffer equally before puberty but females predominate (85% to 15%) thereafter. Forty percent of our patients recall "growing pains" in childhood that disappeared during the true growth spurt of puberty. Untreated fibromyalgia ultimately leads to a "tartar of joints" that we recognize as osteoarthritis.

    Over forty years ago, one of my patients taking gout medication observed he could peel tartar (calcium phosphate) off his teeth with his fingernail. This observation indirectly led me to study an unrecognized systemic problem reflected by deposits from the disturbed saliva. We now postulate that a defective metabolism, possibly a kidney enzyme, forces a minuscule retention of phosphate, which gradually accumulates to detrimental levels in many tissues. The excess results in inadequate energy formation (ATP), cellular fatigue and other malfunctions that explain all the symptoms of fibromyalgia. Our physicians paper for interested professionals defends that theory.

    We no longer prescribe gout drugs (uricosurics). We now use guaifenesin for fibromyalgia because it has no side effects and is even safe for children. It is marketed for respiratory mucus problems and is available without prescription in various strengths, though some brands may not be effective for fibromyalgia. Currently, we can only advocate three products: the long-acting 600 mg Mucinex also sold by Pro Health under their label, and a 600 mg. tablet compounded by Marina del Rey Pharmacy. Capsules and 400 mg. tablets may be added to boost the basic dose as short acting compounds.

    We begin patients with 300 milligrams of long acting guaifenesin twice a day for one week. Feeling distinctly worse suggests adequate dosage and patients remain on that amount. This suffices for only 20 percent of patients; if symptoms do not worsen, we increase to 600 mg. twice daily. Reversal begins for 80 percent of patients at one of these two levels leaving 20 percent who will need more.

    During reversal, symptoms are intensified and new ones may be experienced. These are not side effects, but signal that reversal is underway. Better hours eventually appear and then cluster into days and finally weeks. The palpable lumps and bumps soften, fragment and gradually clear. Recovery is more rapid than the time it took to develop the illness. Even genetically-slower responders, may clear one year of metabolic debris every few months. Newer lesions clear first and the oldest ones last.

    The original description of fibromyalgia as “rheumatism with hard and tender places” has certainly been forgotten. Tender-point examination limited to a few preordained parts of the body has less value than our totally objective body mapping. We use our finger pads as though we were trying to iron out underlying tissue and thereby find the swollen places within muscles, tendons and ligaments. We record their location, size and degree of hardness on a body caricature that becomes a baseline for future comparisons. Unless swollen, the purely subjective tender spots are excluded in mapping. Subsequent examinations and patient inputs readily determine drug dosages and sequential disease regression. We hide previous maps until we complete the examination and only then compare them to confirm progress. The most important site for confirming the diagnosis and assuring future success is the left thigh. The outside of the quadriceps muscle (Vastus lateralis) and the front part (Rectus femoris) are involved in 100% of adults and clear within the first month upon attaining adequate dosages.

    Ignoring the following will guarantee treatment failure. All salicylates including aspirin completely block the benefits of guaifenesin for fibromyalgia. This occurs at a kidney site—something well documented with uricosuric gout medications. Salicylates are often found in pain medications and exfoliating products. Less appreciated is the fact that all plants manufacture them in quantities that vary with genus and from crop to crop. They are stored in bark, leaves, roots, and seeds where they serve to repair damage or as weapons against soil bacteria and fungi. Salicylates are readily absorbed through the skin and intestine when introduced from medications and supplements including plants oils, gels and extracts. Individual genetics determine ease of blocking but all patients should assume a high level of susceptibility and take no risks. New or replacement products should be carefully inspected for changes made by manufacturers. Items on Salicylate-free lists should be double checked for accuracy before purchasing.

    The following is a guide to natural and synthetic salicylates that must be avoided:

    Medications: (1) Pain products containing salicylate or salicylic acid, for example, aspirin, Salflex, Anacin, Excedrin, Disalcid. (2) Herbal medications such as St. John’s Wort, gingko biloba, saw palmetto, Echinacea; vitamin supplements with alfalfa, rose hips or (3)Bioflavonoids (quercetin, hesperiden, rutin). (4) Topical medications such as wart or callus removers, acne products and dandruff shampoos that contain salicylic acid. (5) Pain creams, balms and lotions such as Ben Gay, Myoflex or Salonpas (containing salicylate) (6) Medications such as Pepto Bismol, Asacol, Alka Seltzer or Urised that contain the word salicylate as part of their generic names.

    Cosmetic and Topical Products: (1) Skin cleansers or exfoliants that use salicylic acid. (2) Hair shampoos, conditioners or sprays with plant extracts or salicylic acid (3) Bubble baths and lotions containing aloe, ginseng, lavender; almond or grape seed oils or extracts etc. (5) Sun screens or tanning lotions with aloe, octisalate, homosalate, mexoryl or meradimate. (6) Lipsticks, balms, or medicated topicals with ingredients such as salicylic acid, aloe, camphor, menthol, or castor oil. (7) Deodorants with castor or other plant oils or extracts. (8) Sticky plant juices or saps adhere to the skin while gardening or weeding (Patients should wear waterproof gloves when gardening). (8) Ttoilet paper and baby wipes with aloe.

    Shaving Aids: (1) Shaving creams with aloe, mint, menthol or mentholatum will block. (2) Razors with aloe strips adjacent to the cutting edge deliver salicylates through microscopic cuts. Vitamin E, lanolin, cocoa/shea butter and mineral oil are all acceptable.

    Oral Agents: (1) Most mouth washes contain mint, wintergreen or salicylate (Listerine). (2) Toothpastes contain salicylates, as well as fresh or artificial mint, often unlisted. Use Cleure toothpastes, the non-mint ones made by Tom’s of Maine or others listed on our website. Baking soda and/or peroxide provide good cleansing and whitening. The non-mint pre-brushing rinses are acceptable as are Cleure Mouthwashes. (3) Use no lozenges, dental floss, breath fresheners or chewing gums with any mint flavor, including menthol, wintergreen, peppermint or spearmint. (Fruit/Cinnamon flavors may mask mint hidden by the stronger flavors.).

    The QUICK CHECK here on the website will detail exactly how to check your products.

    Dictionaries or online references can help identify ingredients. When calling manufactures ask for a list to check yourself because often personnel do not realize that plants make salicylates. This web site can connect you to a support group to help with updated safe-product listings and answer questions.


    No diet is required for fibromyalgia since the liver alters food salicylates. The only exception to this is that we ask patients not to drink tea. The camellia plant is very high in salicylates and steeping makes it stronger. (There is no problem with coffee and with plants other than those in the tea or mint family.)

    Do not use decongestants or cough medicines to get guaifenesin. There are potential side effects from various additives. Single ingredient guaifenesin has no side effects (save rarely mild, but transient nausea) and no known drug interactions. Using it with salicylates causes no ill-effects, it simply negates the drug’s effectiveness for fibromyalgia.

    Pain medications such as acetaminophen (Tylenol), Ultram, Imitrex, non-steroidal drugs such as Advil, and Aleve, will not block guaifenesin.

    Our treatment is not for those lacking courage. It calls for patient skills and, hopefully, physician assistance. Remember, reversal of the disease reproduces past symptoms and may cause new or long-forgotten ones to re-surface. The intensity of these early cycles often causes concern during the initial weeks of treatment. Such symptoms are not guaifenesin side effects. Patients realize they were getting steadily worse long before starting our protocol despite medicinal Band-Aids used to mask symptoms. We offer hope to those with determination to try once more despite previous failures. This is a highly-effective protocol.

    R. Paul St. Amand, M.D.

    Assistant Clinical Professor Medicine


    Claudia Craig Marek

    Medical Assistant


    Important: Do not assume fibromyalgia is the cause of all symptoms. When in doubt or confronted with new problems, please consult your personal physician or appropriate specialist.


    Fibromyalgics with hypoglycemia must follow a low carbohydrate diet as prescribed, or they will not feel better, even when guaifenesin clears the lesions of fibromyalgia. Though not mandatory, fibromyalgics with carbohydrate craving will get a "jump-start” with similar dietary modifications for the first thirty days of treatment. Carbohydrates (sugars and starches) release insulin. This hormone not only induces kidney reabsorption of phosphate but also drives it into various cells and intensifies symptoms. Elimination of the following foods prevents the wide fluctuations of blood sugar that allows a surge in energy and lessens bouts of fatigue.

    Foods to Avoid Strictly:

    All alcohol, dried fruits, fruit juice, baked beans, refried beans, lima beans, barley, black-eyed peas (cowpeas), lentils, garbanzos, rice, bananas, pasta (all types), flour tortillas as in burritos, tamales, corn, potatoes, sweets of any kind including dextrose, glucose, hexitol, maltose, sucrose, honey, fructose, corn syrup, starch. Caffeine and alcohol are permitted for those without hypoglycemia.

    1.Zang, Z, Cherryholmes, G, Mao, A, Marek, C, Longmate J,

    Kalos, M, St Amand, RP Shivley JE: High plasma levels of MCP-1, and Eotaxin provide evidence for an immunological basis of Fibromyalgia. J of Ex Bio Med 2008 Oct.

    Other Information:

    This is not the full bibliography in support of our theory. (Interested physicians may contact us for a theoretical, more technical, paper or consult the Technical Appendix of our book)

    Online Guaifenesin Support group: fibromyalgiatreatment.com/n...

    Cleure Salicylate Free Products. A full line of dental, personal and medicinal products: myfibrosmile.com/ftc or (888) 883-4276. All purchases benefit The Fibromyalgia Treatment Center

    Starlanyl, Devin M.D. and Copeland, Mary Ellen: Fibromyalgia And Chronic Myofascial Pain Syndrome-A Survival Manual. New Harbinger Publications, Inc., 1996. Starlanyl, Devin M.D.: The Fibromyalgia Advocate. New Harbinger Publications, Inc. 1998.www.sover.net/~devstar

    Williamson, Miryam Erlich: Fibromyalgia: A Comprehensive Approach. New York: Walker and Co. 1996 and The Fibromyalgia Relief Book, 213 Ideas for Improving Your Quality of Life, 1999. shaysnet.com/wmson

    St. Amand, MD, R. Paul and Marek, Claudia: The Use of Uricosuric Agents in Fibromyalgia: Theory, Practice and a Rebuttal to the Oregon Study of Guaifenesin Treatment. Clinical Journal of Myofascial Therapy, Vol 2, No 4, 1997.

    St. Amand, MD, R. Paul and Marek, Claudia: A Description of Fibromyalgia and Hypoglycemia: Their Combined Morbidity and Therapy with Guaifenesin and Diet. AAEM Symposium Syllabus, 1998.

    "What Your Doctor May Not Tell You About Fibromyalgia" (ISBN 0-446-675-121),

    "What Your Doctor May Not Tell You About Pediatric Fibromyalgia" (ISBN 0-7595-5002-6),

    "What Your Doctor May Not Tell You About Fibromyalgia Fatigue" (ISBN 0-466-67730-2) by R. Paul St. Amand, M.D. and Claudia Craig Marek, all published by Warner Books.

    "Fibromyalgia: The First Year. A Patient Expert Walks You Through Everything You Need to Learn and Do" by Claudia Craig Marek. ISBN 1-56924-521-5 published by Avalon Books.

    All are available in bookstores, online book sellers and from The Fibromyalgia Treatment Center.

    DVD of Dr. St. Amand’s method for diagnosis, treatment, and mapping is available from The Fibromyalgia Treatment Center P.O. Box 64339 LA, CA. 90064 for $25.00 including shipping and handling, or order here. Copies of this paper and others available free of charge.

  • Thank you for your reply. I have heard of guaifenesin and will look into it more fully. My doctor who is very sympathetic and interested had not heard of it, so I will copy this reply to him. I did once had a cough medicine with guaifenesin in it and I found that it helped me to sleep well and I did feel better in myself when taking it, but had not connected it to FM. Thanks for your help.

  • It's been 12 yrs for me. It really

    sucks having a flare I hear ya!

    have a therapeutic message

    and asked your dr, for savella.

    Soma is a muscle relaxer it

    helps much more then any

    pain killers. I was in so much pain

    6 months ago for 2 months I was

    on the coach morphine patch

    absolutely no help! I hope this

    helps you. Please let me how you

    make out. X

  • Hi in agony. I have just been reading your post and I can relate totally with your story. I have lived with chronic fibromyalgia for just 6 years and I feel no one listens. Yes, you are absolutely right in what you say about the government putting more into finding out about this debilitating, nightmare that never ends. The worst part is when people look at you and say "but you look so well". I could scream at times. Unfortunately for us we don't have big purple spots or whatever to show people that it's fibromyalgia we have. You know, I'm starting to hate grinning and smiling it away!

    I wish that you find a way to have a pain free hour or so!

    Hugs Freya x

  • thank you all from the bottom of my heart ..very interesting reading wish i could reply to each and everyone .but would take me months lol only kiddin .but nice to chat and reply to all in same condition ..hope you all have more good days than bad ..i think im past all remedies now ..better sitting in my bed away from everyone ..in case i go mad lol i.e cant stand noise anyone eating loud music .sad life eh lol take care all and once again thank you xxxxx

  • Wish we could walk around with a t shirt like that. I am so sorry to hear about how much pain you are in. I know how you feel. 35 yrs. for me. I am not housebound, but some days I want to give up because it hurts so much. Can barely stand to wear my bra. It's like a torture device. Have spent thousands upon thousands of dollars for expensive shoes and orthotics, medicines, therapies and on and on and on. It sucks!

  • i havent wore bra or nicks .and even leggings hurt .in house coat all day past bothering now how i look lol take care xx

  • Some very interesting replies here.

    Just remind yourselves either fibro rules you or you rule it! This is a daily conversation with ourselves.

  • Hi Inagony, I totally understand your pain. At 36 yo, I too was so very active in my profession. After work I was playing roller hockey on leagues and in tournaments. I was in the best shape I have ever been in. Then I was injured in the line of duty which happens often in my profession. I was always able to recover and return within a week. What initially seemed to be a minor back strain turned into widespread pain from head to toe along with joint pain & stiffness. I had severe migraines, severe spine pain and severe overall pain. I could not sit, lie down, walk & sleep. I had to endure many tests, injections & painful treatments for a couple of years. Everything I did caused more pain & that included alternative medicines. Finally, I said enough. I was officially retired from my profession and I had a horrific fight with Worker’s Comp. I had lost everything: My health, my career, my relationship, my identity, my home, my sports, my friends and my dreams of backpacking and retiring on a full pension. Severe depression followed with thoughts of just ending it. I took classes and read books on Grief. I felt that I died a hundred times. I was in the thick stages of grieving and I needed to validate what I was feeling & the stages I was going through. I did speak to therapists but no one could get done to the level I was at. They just didn't understand. Once the Comp case was settled I rested then I tried to regroup. I looked for doctors who specialize in Fibro & chronic pain. I was also sent to a few Rheumatologists who just looked at my hands and said, “No, I can’t help you. You don’t have Arthritis or Fibro.” A few docs said I needed to see a psychiatrist because the pain was all in my head. I did have another MRI and found I have 3 herniated discs in my neck & stenosis from the injury but not serious enough for surgery.

    For years, I tried to manage the pain with pain meds. I wore clothes that were as soft as I could find. I had to take pain meds and a sleep med to help get me to sleep. My PJs and the weight of the blanket & quilt hurt. Sleep is so very important. I did have a sleep study which showed I had some problems. I could not get into the deep stages of sleep. I skipped on the surface all night like a pebble skipping over the surface of the water. I do use Melatonin, 1 Tylenol PM & ½ Ambien. I value my heated mattress pad to keep the back from getting chilled. I have the t-shirt fabric sheets. I shut the lights, the TV & computer off a few hours before bed. I have an MP3 Player with a mild thunder & rain storm to help me get to sleep. Try to distract yourself from the pain so you can get to sleep. Doctors don’t understand that when you are trying to sleep the pain is the worst simply because your mind is not distracted from the pain like it is during the daytime.

    During the day, I always tried to eat right, drink lots of water, go for a walk or go to the library just to get some air. I also started to ask those big questions most people try to avoid. I was on a soul searching spiritual journey. I took philosophy classes at the community college and spiritual classes anywhere I could. I took classes in Adult-Ed. The college had a Comparative Religion class and a Sacred Literature classes which I loved. I read the Qu’ran, the Bhagavad Gita, Tao Te Ching, Confucius’ Analects, the Buddha’s Dhammapada, the Tanak, Christian New Testament, other Orthodox and Gnostic texts, the Egyptian Book of the Dead, and Native American sacred tales. I was tired of being so close-minded & judgmental. Now I have a much more respect & understanding with other Religions. None of the Religions has all the answers and there isn’t only “one way.” I worked at a Church with Priests & Sisters and I saw & experienced things that destroyed that “only way” path. I try everything Religious & Spiritual and I found that people were all the same so I study on my own. I do a little gardening to get me out in the sun & to hear the birds sing. I go on walks in county parks. There I found a picnic bench to sit and read. I studied under a Buddhist Monk, I prayed, I contemplated & I learned to meditate. I needed a different perspective on pain, hardship & suffering. I treated Buddhism as a spiritual teaching not a religion. I learned so much from him about myself, about life and my false perceptions. Fourteen years later I am still reading & studying Buddha’s teachings. Pema Chodron is a wonderful teacher and everything she’s says is right on the money. Thich Nhat Hanh is another great teacher. There are many others. Check your library for books, DVDs, & Books on CDs. They have audio clips on Youtube and on their sites. I try to start the day with a reading.

    I also realized I was going through Peri Menopause quickly followed by Menopause which caused me more pain, severe depression, mood swings, and intense sweats. Black Cohash helps control the sweats. After I was kicked out of a pain clinic by a screaming doctor, I found the best doctor I ever had—a Rheumatologist who is a woman with has tons of experience with people suffering from chronic pain like us. She and her PA are so sharp and up to date with all the studies. Both are like having a Dr. House. She said male doctors tend to dismiss women’s complaints of chronic pain. They also don't consider that you might have an Arthritis. She said there are over 100 different types of Arthritis conditions along with Lupus which my sister has. My Gram & Mom have severe RA so there is a good possibility that I have an Arthritis. I was in so much pain, I didn't care what I tried. I did try the meds for Fibro and nothing help. I did gain a lot of weight on them. I took Prednisone. You just need to be mindful on how much you eat to keep the weight in check. I still take Prednisone which at a low doses helps with the joint pain. So I tried Methotrexate, then other Biologics such as Orencia, Humira & Enbrel. Believe it or not I was feeling better with Enbrel until I had a reaction. I am now on Cimzia, a bi weekly self injection, and the Lupus drug Plaquenil which has help me with my joint pain and my overall “Fibro” pain. So it is possible I have Lupus. All my blood labs are negative but that doesn't mean you don’t have Arthritis or Lupus.

    I do take a pain medication for pain but I am very conservative with it. I take ES Tylenol in between and a stomach GERDS med along with Prednisone at 5mgs in the morning. I still have a lot of pain & stiffness in the morning but after some meds and some coffee I am able to go out and do things. I do crash & burn after 4 hours then I flare-up but that is the way it’s going to be and I just try to deal with it. Flare-ups are much worst when the storms come. I have been reading books on chronic pain and about pain itself which has help me to accept it like my shadow. I will always pain so I should become friends with it and try to understand it at its many levels. I also practice Tai Chi & Qigong which has been a tremendous help. I am certified by a Master to teach a senior fall prevention Tai Chi & Qigong classes and I have been doing so for 2 years. Pool activities are great too but the pool has to be very warm. I read, study, volunteer at the library & I help my mom’s elderly neighbors. I trim a few bushes for them & plant some flowers. I am just trying to be a better person and to help others. Thank goodness I have a disability pension from my work. I am back drawing & painting—seeing the world much differently. I even built a cool looking birdhouse. I help care for my mom. She is in bad shape and it is disheartening to see. I am using this experience & time to improve myself, to become more compassionate for other sufferers & to do other things. Be open. Be flexible. Don’t assume you have Fibromyalgia and that nothing can be done. Keep looking for a specialist. I am still not able to work even part time. Of course, who would be nuts enough to hire me? I still have a lot of pain & fatigue to deal with but I have some ideas on what I can do and I am slowly working on them. Try volunteering at the library or the humane society for a few hours to distract you a bit from the pain. It’s hard not working but some fur therapy is always good for pain and the centers can always use some help. I hope this helps. Hang in there! It’s a journey and there are lessons to learn for all of this. Pain can teach us a lot. Take Care. DG

  • I'm so sorry to hear about your experiences. I, too, have chronic widespread pain which is debilitating. In a couple of weeks I will have surgery to remove most of my vagina. I'm so sensitive to pain, I'm not sure how I will go through this. I had cervical cancer age 32, now 57. She wanted to take off most of my labia due to dysplasic lesions, but I'd never be able to handle that. I take morphine and oxycodone every day along with a bunch of other stuff. Please know that you are not alone in your struggle to merely survive. I don't think the U.S. is doing much of anything for fibro. The South Koreans are more on the ball. They've recently discovered a lot about Schwann cells and the non release of endorphins to kill the pain. Hang in there!

  • Hi it says u only stay 6 miles rom me i kìnda keep myself in ghe hòuse too i stay in balbeggie or jußt outsidè of it maýbe è can meet at ßome point

  • Please try Magnesium Chloride oil. It will release a lot of the pain, help you sleep better and relax. Try at night the first time and make sure your blood pressure is not too low because it can lower it more, also, it may make you very sleepy, so careful if you drive. Rub it in the areas of pain . The relieve is almost instant.

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