By Ariana Estelle-Symons, Ph.D., Copyright 1999
Fibromyalgia Syndrome (FMS), like Chronic Fatigue Syndrome (CFS) is difficult to diagnose, and more often than not - incorrectly diagnosed. Although they don't always manifest ‘together’ – these two often ‘travel in tandem’. The symptoms of either can be confusing, often leading to a totally incorrect diagnosis.
According to researchers, approximately 3 million women in the United States suffer from FMS and the numbers may far exceed that estimate because FMS is so often incorrectly diagnosed. No estimated numbers are given for the men that suffer from FMS, but it appears that more and more men are being diagnosed. FMS is not exclusively a women's disease’.
What is Fibromyalgia?
Fibromyalgia is a common and disabling disorder affecting 4-6% of the population, women more often than men. Despite the conditions frequency, the diagnosis is often missed. Patients with fibromyalgia usually ache all over, sleep poorly, are stiff upon awaking, and feel tired all day. They are prone to headaches, memory and concentration problems, dizziness, numbness and tingling, itching, fluid retention, crampy abdominal or pelvic pain and diarrhea, plus other varied symptoms. The symptoms of FMS can be vague, and often mimic the symptoms of other diseases such as Lyme Disease or arthritis.
Although Fibromyalgia is usually classified as a ‘rheumatic disorder’, which is characterized by chronic, achy pain, it manifests differently in different people. Because the pain of FMS is unpredictable and more generalized than in arthritis, it requires different approaches in pain management. The pain most commonly affects the lower back, the neck, the shoulders, the back of the head, the upper chest, and/or the thighs, although other areas of the body may be affected. Doctors working closely with the problem of FMS tell us there are 18 ‘trigger points’ on the body, as illustrated below, with the ‘trigger points’ shown on ‘The Three Graces’, the well known masterpiece of art.
A. Widespread pain in all four Quadrants of the body for A period of 3 months.
B. Pain in at least 11 of the 18 specified tender points.
These 18 sites used for diagnosis cluster around the neck, shoulder, chest, hip, knee and elbow regions. Over 75 other tender points have been found to exist, but are not used for diagnostic purposes. The criteria was created for research purposes, and many people may still have FMS with less than 11 of the required tender points as long as they have widespread pain, and many of the common symptoms associated with FMS. The most common symptoms include:
Since there are no diagnostic lab or x-ray abnormalities, the physician must depend on diagnosis by locating the ‘tender points’ in their characteristic locations, and by checking patient complaints against the above list of symptoms. It appears that FMS sometimes runs in families, suggesting an ‘inherited predisposition’. It may lie dormant until triggered by an injury, stress, or sleep disturbance. (See the article "Gulf War Illness" on page 4). Since it is closely related to CFS (Chronic Fatigue Syndrome) and IBS (Irritable Bowel Syndrome), some researchers suggest that these are all just different facets of the same underlying disorder.
What causes FMS?
Fibromyalgia is often mistaken for an inflammatory or psychiatric condition. However, since no evidence of inflammation or arthritis has been found to accompany it, it is now believed that the depression and anxiety that most patients experience are the result, rather than the cause of FMS. Many patients with FMS are treated with nothing more than antidepressants.
There is some evidence that FMS is due to an abnormality of deep sleep. Abnormal brain wave forms have been found in deep sleep in many FMS patients. Symptoms similar to FMS can be produced in volunteers by depriving them of deep sleep for as little as a few days. Other research shows low levels of growth hormone (important in maintaining good muscle and other soft tissue health) in some patients with FMS. This hormone is produced almost exclusively in deep sleep, and its production is increased by exercise.
Still, other evidence points to a problem with the immune system. Other possible causes include:
A new theory
Robert Bennett, M.D., a professor of medicine at the Oregon Health Sciences University in Portland and a well known Fibromyalgia expert says: "For years we thought Fibromyalgia was a muscle problem. Now we believe it results from a malfunction of the central nervous system". People with Fibromyalgia seem to process pain sensations differently from healthy folks. Aches become amplified as they travel along the spinal cord to the brain. The result: A sensation that is uncomfortable for most people can feel downright excruciating to Fibromyalgia sufferers. This may explain why many women who have the disorder experience migraines and severe menstrual cramps as well.
According to a growing body of evidence, there are two suspected causes that appear to be responsible for these heightened sensations. One of these is an overabundance of "substance P", a chemical found near the spinal cord that regulates our perception of distress signals. Several studies have now shown that Fibromyalgia patients have about three times as much of the compound as healthy people do. Evidence suggests that when levels of substance P increase in the spinal cord area, the severity of pain felt by fibromyalgia patients also rises.
The second suspected cause appears to be a significant deficiency of serotonin, a brain chemical responsible for controlling substance P and ‘soothing’ pain signals. Serotonin also helps lull us to sleep, which also may explain why fibromyalgia sufferers can have trouble getting a good nights rest. No one seems to know what throws these two substances out of balance, but evidence shows that physical trauma may be part of the reason. Many FMS patients’ symptoms slowly develop after a car accident, a sports injury or even a persistent illness such as influenza. Scientists have long known that trauma can disrupt the balance of brain and spinal cord chemicals; recent animal research indicates even inflammation or infection can cause this.
How is it treated?
Apparently, taking medication by itself has relatively little effect on FMS symptoms. The medications most often used to treat FMS are:
What really helps?
FMS can be debilitating and demoralizing. Get as much education about it as you can. The Fibromyalgia Network publishes a newsletter. You can contact them at:
Tuscon, AZ 85751-1750
Or, for those with internet access, go to: http://www.alt.med.fibromyalgia
Herbs, Supplements & Kombucha
HERBS THAT MAY HELP
SUPPLEMENTS THAT MAY HELP
KOMBUCHA MAY HELP
Last on the list – but at the top of the list for effectiveness.
Our Harmonic Harvest Kombucha Survey (1996 & 1998 from a total of 733 people) revealed the following improvements in symptoms related to FMS by people drinking Kombucha.
In this issue, you'll find notes from people with FMS that have discovered they feel better after drinking Kombucha. Seek the advice and guidance of your primary health practitioner before trying Kombucha, or other herbs & supplements.
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!
In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.
Have a nice day!! (ROFL),
Email from Malcom
As a ‘helpless husband’, I've stood by and watched my wife suffer from Fibromyalgia for 11 years. Eight years ago, before she was actually diagnosed, we had a terrible scare when the doctors thought she might be suffering from bone cancer. When those tests came back ‘negative’, I began to agree with the doctors that had told her they could find no reason for her pain or fatigue. She went from a healthy, happy, productive mother of 3 to a miserable, crying, whining ‘shell of herself’. At least that's what I thought then. It just didn't make sense to me that she could feel that awful – and no one could figure out why. I'm ashamed to say that I fully agreed with the earlier diagnosis of "you need a shrink". We were very nearly divorced over this change in her, and one day, I thought, "OK, I'm going to give this another chance. I'll give her the benefit of the doubt, do some research and educate myself about what could possibly be wrong with her". After spending many long, late hours on the internet, I began to run across and read about symptoms that resembled Marci and her problems. She was so relieved when I told her what I'd found about CFS & FMS. She had been fighting a losing battle with me for years, and was convinced that I believed ‘it was all in her head’. I humbly apologized, begged her forgiveness for my ignorance, and together we began to research CFS/FMS. We met with a rheumatologist that worked closely with a naturopath, and our lives have changed drastically since then. The Naturopath is actually the one that introduced us to Kombucha. Of course, in the beginning we were really skeptical – after all, this is NOT ‘mainstream medicine’! However, after drinking it for a couple of months, she began to feel a real difference! Her ‘down days’ are not so bad, and her sleep has improved (of course, the Melatonin helps that also). Her ability to ‘cope’ has improved so much. She has also started taking GH3 and we both feel that it really seems to help with the depression and the pain. Marci is (most of the time) back to that healthy, happy, productive woman I married. Oh sure, she has her ‘down times’ – and her bad days. Every now and then she has to resort to painkillers for a week or so, but things are much better. I am the official Kombucha Brewer in our house, and since we're both drinking it now, I stay busy just making sure we have enough. You know how it goes - you offer some to a friend, and the next thing you know you're making it for 7 different people. We've introduced a lot of people with FMS to Kombucha (one of them is my chess partner who is 58 and has been dealing with this insidious, invisible illness for 15 years). He thinks Kombucha is the greatest! Marci really likes her ‘European’ Kombucha Strain (mainly because of the antioxidant properties of the Green Tea), but I'm partial to the ‘Oriental’. You have my permission to put this in your newsletter if you wish. By the way, we really like the ‘Konnection’.
Note from Karlina in London
I know I have waited far too long to bring you up to date on my progress with Kombucha, but better late than never.
I am really much better than before. It has been 8 months since I began my wonderful adventure with Kombucha. I came dangerously close to tossing out the whole idea about 3 weeks into the process. I did not feel as though I had realized any benefits, and I still hurt over my entire body, I still could not sleep well, and my bowel problems had seemed to worsen. Still, I persevered, and am most grateful that I did.
Foremost is the improvement in bowel function. After about two months I began to function more normally, perhaps this is because I began to consume more KT. I'm now drinking about 10 ounces each day, which seems the correct dosage for me. I have gone completely off Prozac (for 3 months now) and am very pleased about that. I do occasionally have to take my pain meds, but at half the dosage I took prior to Kombucha. Now and then I must resort to my sleeping tablets from my physician, but not often. A friend of mine at Church is very impressed with my progress, but quite afraid to try Kombucha. I will continue to try and convince her of its merit.
If you think that this letter will be of some help to someone else, you have permission to share it. Thank you for the work you do, and by the way, I never did thank you for your prompt shipment of Kombucha. It arrived perfectly sound and I appreciated the care you put into the packaging. Posting this long overdue missive this afternoon.
With loving thoughts,
Harmonic Harvest Products
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