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Taking the Misery & Mystery out of Fibromyalgia
2 Replies
axxie - December 28

Taking the Misery and Mystery out of Fibromyalgia

Fibromyalgia is considered by many to be a fairly new disorder. However, the truth is it has been around for a long time, it is only lately that scientists and medical experts have been able to name this compilation of symptoms and to lump them together under the name of Fibromyalgia Syndrome or called FMS.

To all my friends on this board and to the newcomers, I hope you find something in my story that can help you.


To a person like me, who has suffered from this misdiagnosed disorder for more years than I care to count, there was no question that something seriously was wrong with me. For years, like many others, I went from doctor to doctor seeking answers and relief. Instead what I have found was: frustration, misdiagnoses, confusion, insult.

Fibromyalgia syndrome (or fibromyalgia) is a chronic disorder associated with widespread muscle and soft tissue pain, tenderness, and fatigue.

Fibromyalgia has been recognized as a medical disorder only since the 1980s, although there is evidence it may have existed for centuries. Some believe that the cause of FMS is the result of a sleep disorder. In the incidence of FMS research indicates an interruption of the sleep cycle prevents the sufferer from moving from stage 3 REM (rapid eye movement) sleep to stage 4 where the body relaxes and thus tension is maintained in the nerves and muscles. Others indicate that chronic pain keeps one from sleeping and thus exacerbates muscle and nerve tension and manifests depression and anxiety. It is like a chicken and egg kind of event -- does the sleep disorder create the pain or does the pain create the disorder? One of the main contributors to FMS is stress. There is nothing that will cause an FMS flare-up faster than stress in one's personal or professional life.

The pain of fibromyalgia is more than normal muscle aches common after physical exertion. Fibromyalgia often can be severe enough to disrupt a person's daily work and activities. I am often incapacitated for weeks and may have to use a cane to walk. I have known some that had it so severe that a wheel chair was required for mobility.

Fibromyalgia can be difficult to diagnose because its symptoms are similar to many other disorders and diseases. There are no lab tests to diagnose fibromyalgia. It is often diagnosed after other conditions have been ruled out. Fibromyalgia is diagnosed when:

A person has had widespread pain for at least 3 months. To be considered "widespread," the pain must be both above and below the waist and on both sides of the body. In one time of flare-up I was in bed for more than six months.

At least 11 of 18 specific tender points are painful when pressed. (Because symptoms vary widely from person to person, some people with fibromyalgia may have fewer painful tender points.)

Women are more likely to develop Fibromyalgia than men and the average age of on-set is between 30 and 50. However, with age the possibilities increase. However, the onset can be at any age. There is some indication that what used to be called growing pains in children could be a form of fibromyalgia.

At a basic level, most people with fibromyalgia are suffering from diffuse muscle and tendon shortening, driven in part by multiple nerve compressions throughout the spine and limbs. Deep spinal muscles cause deep nerve compressions and traction that cause further muscle problems in the spine, limbs and head. Pain can be directly from the muscles crushing a joint, or from pain referring into the joint from the spine. Typically both exist at the same time. Headaches can exist from referred pain from the neck but also from local muscle problems around the head.

FMS has basically three components, Chronic Pain, Sleep Disruption, and Anxiety and/or depression.

When managing FMS (there is no cure only management techniques at this time) one must take a three pronged attack....

1. Manage and treat Chronic Pain,
2. Manage sleep disruption, and
3. Manage and treat anxiety and/or depression.

While one hopes to be able to work with one's health care provider, it is important for the person who has FMS to develop control over treatments, interventions and management. It is very easy when one experiences such a chronic syndrome to buy into some really goofy ideas for healing and treatment. I am a believer in effectiveness of complimentary medicine and use it in my own treatment plan. However, I also realize the importance of traditional western medicine and medication in the management of my FMS.

I discovered that stretching help with the disorder. And, when I stretched in the morning before I got out of bed, I was able to move with greater ease and, somewhat, reduce my level of pain. I was then able to do other exercise, which was good for me.

The first step to controlling FMS symptoms is to control and manage STRESS. Controlling stress means controlling one's reaction to internal and external events. Meditation is any of the forms available will significantly reduce stress and the pain associated with FMS flare-ups.

While I am all for supplements, if one needs them because of deficiencies, choosing a healthy diet takes care of most deficiencies. A few supplements that I believe help are, Vitamin E, Purified Fish Oil blend, liquid calcium with a vitamin D, MSM and PG Daily from Webber, to help with your blood sugar and weight management. I don’t prescribe and I don’t vouch for any one brand over another. Go to the pharmacy and find the ones you like, I myself go and buy different kinds every time I need to replenish, that way I figure out if one is better than the other and at what price I pay for them.

Anything that reduced inflammation can sometimes help. I have never found relief when I used traditional pain medications such as aspirin, ibuprofen, codeine, and so forth in managing the discomfort of FMS. I have found cold water baths and ice packs will help. Some folks find that heat works better. It is really a personal matter as to which works better.

Natural herbal supplements for depression have had no effect for me. Some people do find relief with the use of St. John's Wart. I say if you are going to take it, make sure it doesn’t interfere with prescribe medication you are taking. I know for a fact you don’t want to have interaction with your drugs and what natural herbal supplement you take.

The most difficult issue facing those who suffer from FMS is finding a correct diagnosis and learning to accept that the diagnosis is real. After years of going from doctor to doctor I had come to believe that my condition was a result of a psychological or psychosomatic disorder. In fact, sometimes when I feel good (like when I remember to take my MSM regularly, reduce my stress, stretch and move and do happy things) I think that my FMS is all in my mind. However, when the flare-up occurs again and I am bent over in pain I realize that it is not an imaginary disorder and I get back into my mode of controlling my FMS.

As a final note, if others do not understand that you are suffering from real pain and discomfort it is important to take note of yourself from their point of view. If you are the "average" FMS sufferer you probably look very healthy. It helps when those in your personal world are sympathetic and understanding of your condition. Proactive approach and educate those who are close to you about the realities of FMS. If they are openly disrespectful and do not want to be supportive of your condition and you have been unable to cope with their behaviours, consider taking a course in assertiveness training. The skills learned in a course like this will help you take control of your life and your disorder and empower you when dealing with family, co-workers, and health care providers. Remember, only you know how you feel. Do not negate your suffering or your pain or you path to a healthier and more comfortable life by using the uniformed feedback of those who do not really understand FMS. - December 29

Hi Axxie, ty for all your helpful info..I truely beleive that I do have fms now that I have read your post..I went thru every test imaginable and all came out neg. from A-z, my next test is Jan. 3rd. for nerve conduction test...and a cat scan...I am so sick and tired of being in pain 24/7, and I'm sure ppl. are sick of hearing me whine...ty again, and if there is anything you may think that I can discuss with my Dr. please let me know! ty geri


axxie - December 29

Hi geri, thanks again for your kind reply, and happy that this little post, albeit long, is helping you. Just remember we are, who we are, and if we have to pay more special attention to one self, it is us. FMS is not easy, but you can manage it, and manage it very well. The way I see it, if you get on board of admitting that is what you have and come to accept it, then the hard part of the work, as been done. Now come the easy part, getting on board with a doctor team and doing what you can with the resources you have.

As for when talking to your doctor, if you could just be hones with your doctor and ask questions about the drugs prescribe to you, then I think you can have a great relatinship with your doctor.

Foremost, ask the doctor if he actually gets it when you say, I hurt, I am in real pain, I am going through emotion that I am not sure I can handle. Can you help me, as I do want to get better.

Most doctors will respect you for being honest with the doctor and that you are providing them with easy answers, but more than the one syllable of yes or no.

Tell the doctor that you want to be on board with his treatment regime, and that you will do, whatever is needed to get healthy.

In other words, do eat good food, stop eating the fats, and sugar, keep a positive mind and when you are down, don't retreat, reload and forge ahead.

We sometimes get very depressive, and a good night sleep is the first step to getting better, so please do ask your doctor to prescribe you with a sleeping pill of somekind.

Drink loads of real juice and water.... do take a good supplement vitamin. Remember that because you have other aches and pain, doesn't mean that fibro is doing this to you.



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