How to live with Fibromyalgia

Almost two years ago I woke up with the most incredible burning pain in my right leg. It went from about the mid-thigh to almost my ankle.  Each day it got worse to the tune that tears were running down my face almost all day. I couldn’t sleep, I couldn’t think straight after awhile.  At the end of the 4th day I went to my doctor, who after taking x-rays decided I had arthritis and told me to take some Aleve or something like that.

I did not buy this as I did not want to mask the pain; I wanted to find out what caused it. Besides, I have a very high pain threshold and if it was hurting me, it was very real.

I was to the point if someone said, “All the pain will go away if we amputate your right leg”; I would have signed up for the operation!

Several days later, after hobbling over to my neighbor’s house to exchange some plants, she mentioned Fibromyalgia. I never had heard anything about it. I went home and got on the internet to read about it.

I discovered that “Ninety percent of the 4 million Americans dealing with this debilitating, frustrating condition – known as Fibromyalgia – are white women, and many of them are menopausal. Even though I later discovered that guys can suffer from it also.

Neither a cause nor a cure for Fibromyalgia is known. It is not a disease but a range of symptoms characterized by chronic, widespread pain on both sides of the body, above and below the waist. The pain moves around. I never know where it will be next.”) Some women have a low fever in addition to pain. More than half of those with Fibromyalgia also suffer from headaches, endometriosis, and/or irritable bowel syndrome. (I have that also).  It’s rough getting old!

The symptoms of Fibromyalgia are quite variable, making diagnosis difficult. (Orthodox diagnosis is predicated on finding soreness at specific trigger points.) Fibromyalgia mimics aspects of multiple sclerosis, Parkinson’s disease, arthritis, hepatitis C, hypothyroidism, lupus, polymyalgia rheumatica, and early dementia. Many women with Fibromyalgia are told their distress is “all in your mind.” El Toro Pupu!

It wasn’t in my mind! I could barely sleep at night for the pain. I was way past menopause, being almost 70 years old.

I discovered that non-restorative sleep is a hallmark of Fibromyalgia. Lack of calcium (and other minerals) can make your bones ache.

I also discovered that, “People with Fibromyalgia aren’t just sensitive to pain; they also find loud noises, strong odors, and bright lights aversive.” According to Daniel Claus, MD, Director: Chronic Pain and Fatigue Research Center, Georgetown University

One person suggested meditation. Since I meditate, I knew, though it may well work for others, it was not working for me.

Another suggested, “Go back to your Mother. Float in the ocean. Lie belly down on the earth, naked. Let her ease you. Let her heal you.” I live too far from the ocean, but that might work. The earth naked idea did not do a thing except cause a few eyebrows to rise around here!

Hypnotism was suggested as a form of therapy to help gain control of the pain. I did not want control. I wanted it to go away!

Another suggestion was to join a support group and there is a network out there for Fibromyalgia, as there is for every thing else in the world. However, that was not for me either.

Along the way, I discovered that, FMS (Fibromyalgia syndrome) is a widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.

Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, and it shows up in people of all ages.

To help your family and friends relate to your condition, have them think back to the last time they had a bad flu. Every muscle in their body shouted out in pain. In addition, they felt devoid of energy as though someone had unplugged their power supply. While the severity of symptoms fluctuate from person to person, FMS may resemble a post-viral state. This similarity is the reason experts in the field of FMS and chronic fatigue syndrome (CFS) believe that these two syndromes may be one and the same. Gulf War syndrome also overlaps with FMS/CFS.

My symptoms were only in the right leg and were continuing to be very, very painful with no let up.

More research uncovered the following:

 Pain – The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.

Fatigue – This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as “brain fatigue” in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.

Sleep disorder – Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.

Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you’ve just been run over by a Mack truck – what doctors refer to as unrefreshing sleep – it is reasonable for your physician to assume that you have a sleep disorder. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea, sleep myoclonus (nighttime jerking of the arms and legs), and restless legs syndrome. A newly discovered sleep disorder, upper-airway resistance syndrome, is also being evaluated for its association with FMS.

Irritable Bowel Syndrome – Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of FMS patients.

Chronic headaches – Recurrent migraine or tension-type headaches are seen in about 50% of FMS patients and can pose a major problem in coping for this patient group.

Temporomandibular Joint Dysfunction Syndrome – This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.

Other common symptoms – Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications that they are prescribed.

Aggravating factors – Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.

I did have and still do have sleep myoclonus (nighttime jerking of the arms and legs), and restless legs syndrome.

Further research showed that the cause of FMS remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don’t cause FMS, but rather, they may awaken an underlying physiological abnormality that is already present.

Researchers wondered what could this abnormality be? Theories pertaining to alterations in pain-related chemical transmitters (particularly substance P, nerve growth factor, serotonin, and norepinephrine), immune system function (e.g. abnormally elevated levels of cytokines that form the communications link between your immunologic and neurologic systems), sleep physiology, and hormonal irregularities are under investigation. In addition, modern brain imaging techniques are being used to explore various aspects of brain function. The body’s response to exercise, stress, and alterations in the operation of your autonomic nervous system (the one that operates in your peripheral tissues) are also being evaluated. Substance P and nerve growth factor are increased threefold and fourfold (respectively) in the spinal fluid of people with FMS, but researchers are working to figure out why these elevations exist. With regards to genetics, its role in FMS is also the focus of many investigations.

Traditional treatments are geared toward improving the quality of sleep and reducing pain. Deep level (stage 4) sleep is crucial for many body functions (such as tissue repair, antibody production, and the regulation of various neurotransmitters, hormones and immune system chemicals). Therefore, the sleep disorders that frequently occur in FMS patients are treated first because they may be a strong contributing factor to the symptoms of this condition. Medications that boost your body’s level of serotonin and norepinephrine (neurotransmitters that modulate sleep, pain, and immune system function) are commonly prescribed in low doses, such as amitriptyline, cyclobenzaprine and Celexa. Ambien, clonazepam, and trazodone are just a few of the medications that may be used to aid sleep. Ultram may help with the pain, although stronger opioids may be needed for treating moderate to severe pain. Muscle relaxants and other drug categories may be prescribed as well. My research went on to say that in addition to medications, most patients will need to use other treatment methods as well, such as trigger point injections with lidocaine, physical therapy, occupational therapy, acupuncture, acupressure, relaxation/biofeedback techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program.

During all this investigative work and since no one down at my medical clinic even alluded to Fibromyalgia, my youngest daughter who is in the medical field and who also understands alternative medicine got out her latest copy of the Reader’s Digest Alternative Medicine book. This lists vitamins and herbs for just about everything.

It also lists the “must take” vitamins and herbs, the “should take” vitamins and herbs and “it doesn’t hurt to take” vitamins and herbs for each disease it has listed.

Fibromyalgia was in this book.  I ordered from my herb and vitamin supplier all the “must takes” and a few of the “should takes” that I was not taking now. I take a lot of herbs and vitamins for several medical conditions I do have.

Within 3 days my package arrived. Within another 3 days my pain completely stopped except for the fact that my pain was now reduced to a dull ache such as one would have from a black and blue mark.  At the end of 30 days nothing! Occasionally I get a little patch of pain on the right side of my calf that feels like the start of Fibromyalgia and I immediately give it a 10 minute massage. The results are immediate.

The myoclonus (nighttime jerking of the arms and legs), and restless legs syndrome has become almost minimal.

Here is what I take for Fibromyalgia:

DL-Phenylalanine 500 mg (1 each day between meals)

AAngamik DMG (1 each morning)

MSM 500 mg (3 times a day, 1 with each meal)

5-HTP 100 mg (3 times a day, 1 with each meal)

Potassium (3 times a day, 1 with each meal)

Calcium, Magnesium, and Zinc (3 times a day, 1 with each meal)

Malic Acid 600 mg (2 each morning)

Now, this is all the results of my research and it works for me. It has worked for me for almost 2 years now. It may not work for you. So you need to do your own research and work with your doctor. 

Since I moved to Kentucky in 1999, I found the local doctor had a pretty good clinic for the rural area with a good staff and though my doctor is not much into herbs and vitamins, he is the best around in the rural area I live in, so he is the one I go to since I am a cancer and stroke survivor, have chronic bronchial asthma and am a diabetic.

I feel I have survived the cancer of 1992 with a diagnosis of a 50/50 chance to be dead within 6 months unless I took chemotherapy. I just changed my lifestyle, did not do chemotherapy and to this day faithfully take the herbs and vitamins I researched.

The diabetes I control with diet and also the stroke with a less stressful lifestyle and diet. I do take a medication for stroke.

The chronic bronchial asthma I have controlled since 1996 with an herb called Mullein and since the stroke in 1999 I have been able to find a maker of Mullein that has nothing in it but pure Mullein as opposed to the over the counter herbs that contains other ingredients that works against my stroke prescription.

I am a firm believer in going to my doctor to find out what I have and then look for an alternative to controlling it instead of masking it.

An amazing side benefit from taking my herbs for Fibromyalgia is that within a week or so, my arthritic right hip that had bothered me for many years, stopped hurting and is still painless to this day. I discovered it was the MSM that did the trick.

In this age of constant bombardment of TV ads that tell us take all kinds of prescription and non-prescription drugs that have side effects that almost outweigh the problem, I feel alternative medicine is an important way to take control of ones health.

Isn’t time you took control of your health?

 “Tread the Earth Lightly” and in the meantime… may your day be filled with….Peace, light and love, 

Arlene Wright-Correll  

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