I don’t have fibromyalgia it has me. There is no cure. I’m violently allergic to the medications used for it, and I will carry this unwelcome body invader that attacked me 20 years ago and remained in residence, to the grave with me. I choose to rely on alternative medicine and complementary medicine approaches and have had some success with them when it comes to managing and coping with pain.
Fibromylagia is now considered to be a syndrome. You could say that I know quite a bit about this disease/syndrome as I have suffered with the symptoms for 20 years. In addition, like many other fibromylagia patients I also suffer with Chronic Fatigue Syndrome, Seasonal Affective Disorder and Raynaud’s Phenomenon.
Symptoms
Common symptoms include pain and swelling in many joints or soft tissues, trouble sleeping, fatigue and weakness, poor memory, trouble concentrating, stiffness in joints and muscles particularly in the morning, inability to stand the cold, sensitivities to certain foods, medications and/or allergens, depression, tension and migraine headaches.
No definitive cause or cure
There is really no definitive cause that has yet been identified for fibromyalgia, and there’s no cure. Simply put, fibromyalgia won’t kill you, but you will die with it. Those who suffer with this disease/syndrome live every day, hoping for a cure, praying our families can continue to cope with having to help us live with our invisible disabilities.
Fibromyalgia is included in the World Health Organsation’s International Classification of Diseases, in the Tenth Revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) published by WHO in 1992 as follows:
M79 Other soft tissue disorders, not elsewhere classified
M79.0 Rheumatism, unspecified
Fibromyalgia
Fibrositis
Fibromyalgia (fi-bro-my-AL-ja) syndrome (FMS) produces chronic body-wide pain, which migrates and can be felt from head to toe.
Fibromyalgia deconstructed:
1. ‘Fibro’ refers to fibrous tissues, like tendons, ligaments and fascia.
2. ‘Myo’ refers to muscle.
3. ‘Algia’ means pain. An analgesic is a pain killer.
Hence, the term fibromyalgia refers to pain in muscles and fibrous tissues.
Recent research
Previous studies have shown that fibromyalgia is associated with reductions in gray matter in parts of the brain, but the exact cause is not known. Using sophisticated brain imaging techniques, researchers from Louisiana State University, writing in The Journal of Pain, found that alterations in levels of the neurotransmitter dopamine might be responsible for gray matter reductions. The authors concluded that the connection between dopamine levels and gray matter density provide novel insights to a possible mechanism that explains some of the abnormal brain morphology associated with fibromyalgia.
What fibromyalgia isn’t
Fibromyalgia has often been called the “great imitator” because so many of its symptoms mimic those of other disorders. As a result, it can often be difficult to receive a proper diagnosis of fibromyalgia. However, there are subtle differences between many of the illnesses and FMS. Learning more about each of these disorders can help you figure out just how fibromyalgia is distinct from them.
Common disorders that fibromyalgia is often mistaken for include:
- Lyme disease
- Lupus
- Osteoarthritis
- Rheumatoid arthritis
- Cushing’s syndrome
- Hypothyroidism
- Polymyalgia Rheumatica
- Reflex sympathetic dystrophy syndrome
- Cervical spinal stenosis
Higher risk for other disorders
People with fibromyalgia are also at greater risk of developing a number of other disorders, many of which can exacerbate your current fibromyalgia symptoms, or are linked to certain conditions, which may lead to fertility problems. Illnesses, diseases and conditions that fall into this category include:
- Irritable Bowel Syndrome
- Osteoporosis
- Endometriosis
- Carpal Tunnel Syndrome
- Sjogren’s syndrome
- Crohn’s disease
- Multiple Sclerosis
- Raynaud’s Phenomenon
- Chronic Fatigue Syndrome
- Anemia
- Morton’s Neuroma
- Seasonal Affective Disorder
- GERD
- Interstitial Cystitis
- Yeast Infections
- Bruxism
- Low Cytokine Levels
- Hypoglycemia
An estimated ten million people in the United States have been diagnosed with Fibromyalgia. It doesn’t favor anyone… it affects men, women, and children of all ages and races.
According to the 2003 Canadian Community Health Survey, 5% of Canadians aged 12 or older, an estimated 1.2 million people, reported having been diagnosed with at least one of three MUPS conditions: 1.3% reported CFS (chronic fatigue syndrome,)1.5%, FM (fibromyalia); and 2.4%, MCS (multiple chemical sensitivity).
References:
Medically unexplained physical symptoms by Jungwee Park and Sarah Knudson PDF file
Statistics by Country for Fibromyalgia
My wife has suffered with this (and hypothyroidism) since 1981. I’ve mailed a link to this article to her. My whole-hearted sympathy to anyone who suffers from this eroding, undermining, constant uphill struggle, difficult, disease.
Do I recall you are in Canada? Do you get harsh winters – thinking about Reynaud’s and the cold.
.-= David´s last undefined ..If you register your site for free at =-.
Raynaud’s and the cold are a horror story. Yes, I do live in Canada on the west coast so what I endure is the wet and the cold, as we rarely have snow. Suffice to say I spend almost all winter indoors. :(
I wanted to thank you for sharing this very important information that is misunderstood by so many people and the medical community at large.
It is unfortunate that so many people go without help and support. Hopefully by sharing information we can reach millions of people that need our faith, hope, love and support.
God Bless
.-= Viviana´s last blog ..My motivational voice came out! =-.
It’s so good to hear from you frequently again V. For 20 years I have been stoic and secretive, suffering in silence. This last crisis I just came through has triggered me to make a change. I’m now sharing all the information I can about these conditions. At the very least I hope to create an awareness in my readers as they most assuredly will have family members and friends who are trying to cope, and still live a quality life.
Although I’m an introspective person I do intend to connect with others who have fibromylagia too and I have just recently found two excellent fibromyalgia blogs at Blog Catalog.
I have a good friend who suffers the same syndrome plus Multiple Sclerosis but I never really see the effect on her. She is always vibrant, and always seem healthy. There are no hints whatsoever that she has some health disorder. The only giveaway clue is the amount of tablets she has to take, she talks a lot slower than most people and is always knocking things down which some people put down as clumsiness.
She has never given me any reason to worry because she never really want to talk about it. I guess each individual have different experiences.
I am sorry for your suffering and hopefully, there will be some medical break-through for the cure.
.-= Funkkeejooce´s last blog ..Back to work… =-.
I’m so glad your friend is able to manage and cope with her condition through drug therapy. I have multiple chemical sensitivity, in other words, I’m allergic to the drugs that others do find effective. Therefore, I focus on alternative and complementary modlaities to cope with symptoms.
Great informational post. Funny, in all my writing about Fibromyalgia, I have never written a post like this. I will definitely share it. Thank you!
.-= fibrohaven´s last blog ..Processing Emotional Pain To Heal Your Physical Pain =-.
Your posts tend to be personally focused and I have deliberately chosen to keep mine focused on information sharing. I’m an introvert and I find that I’m not comfortable about personal sharing so I pour out all my personal stuff into a private blog and the less personal information I published here. I think that means our blogs complement each other quite nicely, and I so very glad to make your acquaintance.
Hi,
My wife has it as well as fischers GBS. Research from the GBS foundation has found that guaifenesin can help as part in pain management therapy, as well as oxiproxin and topamax.
.-= Mar Matthias Darin´s last blog ..EntreCard, no-more, forever more =-.
It’s good to hear that your wife has found medications that help her cope. Please deliver my best wishes to her and thanks for commenting.
This sounds truly debilitating, Timethief. It must severely restrict your lifestyle, no? I’m not the most active person in the world, but even I would find that aspect of this syndrome most trying.
Like David, my wife suffers from hypothyroidism too. It doesn’t restrict her lifestyle much, but it can and does leave her feeling like a spent battery by the end of some days. It can be disheartening for her, and for me seeing her go through it. :(
.-= Tony Single´s last blog ..Cops and Wee =-.
Yes, it does severely restrict my lifestyle Tony and I also suffer from chronic exhaustion. That’s why I’m here at this keyboard blogging, as opposed to working in the studio or outdoors. Previously I was a high energy animated person now I’m less so – much less so.
Whenever a door closes a window opens. In my case the door that closed was to physical work and outdoorsy type activities, and the window that opened was to writing.
Another mistake I’ve heard about is a desease left by ixodes ricinus – sheep tick – castor bean tick. Or what ever it’s name is. A person was diagnosed with fibromyalgia but had in fact suffered from an infection left by this ixodes ricinus creature/bug. Took more that 10 years to get the right diagnose and a treatment.
.-= Universalgeni´s last blog ..Politisk racisme =-.
I have also heard of others who had this disease as well being misdiagnosed as fibromyalgia and in some cases being found in association with fibromylagia. Ixodes ricinus is caused by parasitic hard-shelled ticks associated with the transmission of a variety of infections, such as Rocky Mountain spotted fever, Lyme disease, erlichiosis, and babesiosis.
Because fibromyalgia syndrome symptoms are common to so many other conditions it’s not unusual to hear that it takes years for the diagnoses to be made. From the medical viewpoint diagnosis comes down to a lengthy process of examinations, testing and lab work analysis that result in eliminating all other diseases first in order to home in on the correct diagnosis.
This passage of time and multiple journeys down blind alleys takes an awful toll on the sick person and on his or her family. Moreover, at the end of the tunnel only a minority will find effective treatment modalities. Thus the depression factor is present in us all, and is more severe in some than others.
Finally remembered the name. The disease was a form of Borrelia. Some thirty variants known, Wiki says.
.-= Universalgeni´s last blog ..Politisk racisme =-.
Borrelia is also known as Lyme Disease.
Thanks, TT, for the information. Before I began at BC, I had never heard of Fibromylagia. It does seem like a terrible Cross to bear. One could never guess from your energy and enthusiasm in expressing yourself and from your positive attitudes that you’re in such chronic pain. I admire your courage and resilience more than I can say.
.-= Nothing profound´s last blog .. =-.
Wow! Thanks so much for the kind words. I try to remain positively focused and it’s good to know that I am able to communicate energy and enthusiasm to others through my writing. Thanks so much for the feedback.
a syndrome, man it’s more like the worst pain that ever was, you got some kinda eccentric courage
.-= plainolebob´s last blog ..Lightin Up The Fireplace =-.
It’s pain that migrates. Today it may be in one part of my body and tomorrow in another. What’s hardest to endure is when it settles and remains in one area for a prolonged period of time. And you are right, there are times that I feel outraged that this body invader will never leave me. However, I have discovered that if I become go to the place of outrage or the place of rage I am compelling my body to produce too much adrenaline. When that secretion ends it leads to a severe in energy drop and a horrible bottoming out type of come down into deep depression. I use meditation, chanting, music, singing and affirmations to attempt to create a balance that prevents me from going to the place of rage against the disease.
I have two girlfriends who suffer from the debilitating syndrome. Thanks for the info!
.-= christibroer´s last blog ..Is There a Dragon in the House? =-.
Hi Christi. As more information becomes available more people from children to adults are being diagnosed. This is a good thing because when I experienced the onset of this disease over 20 years ago the medical thinking of the day was to tell those who suffered that it was all in their head. Now more is known and we don’t here that anymore — thank gawd!
I don’t think I’d be able to cope with something like that. I’m already susceptible to depression and chronic pain will probably send me over the edge.
I dare say that most of us fibromyalia sufferers do go over the edge — the edge that prompts us to scream “I can’t take this anymore”. What holds us back from doing that screaming is our desire to spare our family and friends from seeing us in that condition and being unable to help us. I have found that when I’m alone I can shriek into a pillow and release lots of this despair. Thereafter I can pick myself up (so to speak) and take steps to make myself feel better like immersing myself in an aromatherapy bath. The bottom line is that when we think about it we assume we cannot “take” this or that pain or suffering, but when we are faced with the reality of disease we can and do take it, and learn how to cope as best we can.
The EMF Radiation Poisoning of Our Society. http://www.realemfprotection.com/118/the-emf-radiation-poisoning-of-our-society-this-is-why-you-need-emf-protection/
It may come as a surprise to most people, but living in an electrical grid (a house in which every wall is wired with manmade AC electricity) is a major component of most forms of environmental illness. People who are diagnosed with different forms of environmental illness, such as Fibromyalgia, rheumatoid arthritis, chronic fatigue, lupus, multiple sclerosis, even cancer and AIDS, all exhibit one characteristic in common: a collapsed immune system. In part, this dysfunction of the immune system can be attributed to chronic stress from EMFs generated by our AC (alternating current) electrical system and by our microwave communication system. Once this chronic stress is removed, healing and the regeneration of the immune system can occur
.-= WhatMeWorry´s last blog ..Separating God from Religion =-.
I appreciate your contribution as I’m keenly aware of the connection. I live in a semi-remote area, far removed from transformer towers and out of microwave range. I do as best I can to minimize use of electricity and unlike most folks I live in a very electric gadget free home. There’s not much else I can do other than living an off-the-grid lifestyle as I did when I was a child growing up, and I’m not prepared to go that far. Thanks for contributing and spreading the awareness of the EMT and compromised immune system connection.
The EMF radiation is a reality to consider. That’s why for years I don’t keep anything electrical in our bedroom at night while we sleep. You have to be off the grid sometime and who wants to sleep in the low-level equivalent of an MRI machine? Constant exposure to little bits of anything can erode your health over time.
It’s a good idea to take a look around at your environment and see what you can eliminate or tone down. When you turn your focus to these things you will be surprised how much you have allowed into your environment over time and it just sneaks up on you! Boosting your immune system is important more than ever now that the swine flu season is active ahead of time – and laughter goes a long way to helping restore our health! That’s why I include a lot of laughter and grins on all my blogs.
.-= DennyLyon´s last blog ..Cheeky Quote Day! 30 September 2009 =-.
@Denny
Hello there and thanks so much for commenting. I hope your read the conversation immediately above. Like you I have an electronic gadget free bedroom. The only electricity there is the wire in the walls and a single lamp. I have also gone even further by creating a “sleep oasis”. See: Getting a Good Night’s Sleep
Thank you so much everyone for your awesome responses!
Wow I have a great deal I can now pass on to my daughter (who suffers from Fibromyalgia).
The doctors took 2 years to diagnose her.
What an awful disease/syndrome!
Thanks for your input ~ shed a lot of light on this syndrome for me.
.-= petalmaker1´s last blog ..Family Feuds =-.
I am pleased to share what I know, what I experience, and how I cope with you. Best wishes to your daughter. I’m so happy to hear that you are prepared support her when it comes to locating information and making the life changes required to cope with this invisible disease. :)
Thank you for the insight. Wasn’t aware of it.
Sorry I am lost for words.
Wish you all the best and keep up the good work.
.-= beyondpottery´s last blog ..Ceramic interpretation of Enuma Elish =-.
Most people aren’t aware and it’s not surprising that you are at a loss for words either. Thank you for the well wishes. I appreciate them.
Thank you for the very informative post.
I’m sorry you suffer from this, and I think that since my husband has many of the symptoms, that he suffers from it too.
My sister also has an autoimmune condition, very unpleasant, uncomfortable to say the least, chronic and disfiguring. She has told me there is some new research connecting the whole slew of AI diseases to the metabolism of vitamin D.
Something called “The Marshall Protocol” is being tried. Have you heard about it?
.-= Lynda Lehmann´s last blog ..Reflecting on the Power of Reflection =-.
Hi Lynda,
Yes I have heard of The Marshal Protocol but no I don’t wish to take the drug and follow the regime. I don’t believe it will be helpful in my case, howewer, I acknowledge that it may be helpful for others. I wish your sister and your husband all the best. I also want to thank your for sharing here.
I’ve recently come to know and understand Fibromyalgia (its seriousness and the continuous chronic pain associated with it) by reading some of the personal blogs by bloggers suffering from it. I simply wish to say that I have high regard for you as making positive contributions in life while constantly being in so much pain requires a lot of courage! People like you are definitely a source of inspiration. Thanks for sharing.
.-= Meam Wye´s last blog ..World’s First Paper Mill =-.
@Meam
Thank you so much for the kind words. Many people suffer from diseases for which there is no cure. We simply cope as best as we can and contribute as much as we can. Most of all we are grateful for the love and support we get from family and freinds both offline and online. They are wonderful people just like you.
Hello. My twin sister and I were both diagnosed with Fibromalgia years ago. Why my condition is not near as bad as hers. I struggle with it more when I am active; therefore, I have lessened my physical activities to little or none to avoid the pain.
I chose not to take medications or seek treatment and do the mind over matter theory which helps 90% of the time.
However, my concern is not me; it is my Sister. I truly believe she has more than Fibromyalgia but can’t seem to get a diagnosis for anything more. Can you tell me is it normal to run fever, have masses on your liver, kidneys and other organs. Whatever she has seems to have attacked her organs including her heart. She goes to about 6+ different doctors and they all feel her symptoms are related and due to an autoimmune disease. Her main doctor finally decided that she needs to go the Mayo Clinic in Jacksonville where we were hoping they would find a diagnosis(more than just the fibro) but that did not happen. Of all the things we have learned about fibro, the symptoms she has seem to indicate that she has lupus. We believe she does and don’t know where to go to find a doctor that can look at all of her sysmptoms in a whole and make this connection. Can you tell me if the fever and the masses on her organs are in fact related to the fibro or should we continue to find a doctor to help determine it is more than just the fibro? Also, what kind of specialist should she see and could you recommend one in the Tampa Bay, FL area?
Thanks for information. I just want to help my Sister and want some direction.
Sincerely,
Trudi Ellis
@Trudi
I am not a doctor but I strongly believe your sister does need medical treatment and you will probably benefit from treatment as well. IMO your sister needs to be attended by specialists who work with those who have auto-immune disorders and diseases. Many fibromylgia sufferers do have siblings and other family members with other auto-immune diseases including Lupus SLE. Such is the case with me … SIGH. I cannot make recommendations for doctors. Best wishes to you and to your sister too.
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