Coping with Fibromyalgia

You could say that I know a bit about this disease as it’s had me  for 20 years.  Simply put,  fibromyalgia won’t kill you, but you will die with it.  It doesn’t favor anyone … it affects men, women, and children of all ages and races. We live every day, hoping for a cure, praying our families can continue to cope with having to help us live with our invisible disabilities. There is really no definitive cause, and there’s no cure, so coping it what we focus on.

We are not alone

Experts estimate that 3 million to 6 million Americans have fibromyalgia. Of these, 80% are women. One of the main risk factors is being a woman between the age of 20 and 50. Another risk factor is having a rheumatic disease, such as rheumatoid arthritis, lupus, or Sjogren’s syndrome.

Most people with fibromyalgia begin to notice symptoms between the ages of 20 and 40, but children and older adults may also develop the condition. Women with fibromyalgia typically feel pain throughout their body, while men are more likely to have facial pain or pain and stiffness in a certain part of the body as a result of a work- or recreation-related muscle strain.

Causes unknown

Experts do not know what causes fibromyalgia. There are several theories about possible causes or triggers. Inadequate sleep is a possible trigger. Another is suffering an injury such as severe physical or emotional trauma. Some experts believe that a viral or bacterial infection plays a part. Fibromyalgia also seems to run in families, so a gene may be at least partly responsible for the condition.

Abnormal production of pain-related chemicals in the brain and nerves also contributes to the symptoms of fibromyalgia. It’s thought that any one of these factors may bring on the symptoms of fibromyalgia in someone who is already genetically predisposed to the condition.

Breaking the pain cycle

While fibromyalgia is a chronic condition, by working with your health care providers you can get relief of fibromyalgia symptoms and reclaim your active life. You can break the pain cycle.

Pain from fibromyalgia is chronic and widespread. You may hurt all over — from painful tender points, deep muscle pain, headaches, unending back pain or neck pain, or other muscle aches. The chronic pain of fibromyalgia also disturbs sleep, causing you to awaken frequently. Without good sleep, you may have increased achiness, morning stiffness, and daytime fatigue. In addition, about 30% of patients with fibromyalgia have major depression at the time of diagnosis.

Traditionally, fibromyalgia falls under the scope of rheumatologists. But today, primary care doctors, homeopaths, podiatrists, osteopaths, physiotherapists, psychiatrists, neurologists and  nurse practitioners are overseeing long-term fibromyalgia treatment.

Fibromyalgia has come a long way in gaining acceptance in the medical community. Now that the health care community  understands the mechanisms of this disease  they do have treatments that have  proven to help sufferers reduce and cope with their pain.

You will likely need:

  • physical therapy
  • occupational therapy
  • acupuncture/acupressure
  • relaxation/biofeedback techniques
  • osteopathic manipulation
  • chiropractic care
  • therapeutic massage
  • gentle exercise program

Consider the team approach

Ideally, you would like to have one provider take care of you. If you can’t get that, the next best option is a treatment team,  a provider who manages your long-term fibromyalgia treatment, plus therapists who address special problems.

The following sections may help you assess your fibromyalgia symptoms. Write down you answers and discuss them with your doctor and healthcare providers.

Record Keeping: List your healthcare providers

Make a list of all of the types of healthcare providers you have visited including their contact information. Keep it up to date by making notes after each visit.

Record Keeping: What does it feel like?

Fibromyalgia is characterized by widespread pain and tenderness. The pain of fibromyalgia may be unpredictable. You may feel pain that can affect different parts of your body, and the pain may feel worse on some days than others.  Begin to keep a daily record.  Select a number that describes your pain over the last 24 hours and record it.  (0=No pain, 10=Worst possible pain)

Record Keeping: Where does it hurt?

Currently there are no diagnostic tests, such as x-rays or blood tests, to detect fibromyalgia. The symptoms of fibromyalgia may overlap with the symptoms of some other conditions. That is why fibromyalgia is sometimes difficult for healthcare professionals to diagnose.

Some healthcare providers use certain guidelines to help make a diagnosis. According to guidelines set by the American College of Rheumatology, a person may have fibromyalgia if he or she:

  • Has had chronic widespread pain for more than 3 months that affects the right and left sides of the body above and below the waist
  • Feels pain in at least 11 of 18 possible tender points (9 on one side of the body, 9 on the other) when light pressure is applied

Each day describe the parts of your body where you feel the most pain, tenderness, or both.

Record Keeping: Medications and supplements

There are numerous supplements that are advertised for treating every symptom that you have but before you spend your paycheck loading up on supplements, you may also want to  know that  magnesium combined with malic acid and vitamin-B complex have the greatest amount of research backing for reducing the symptoms of fibromyalgia syndrome (FMS).

*The first three supplements below have the greatest amount of FMS research to support them.

  • Magnesium (chelated, 250 mg)
  • Malic Acid (800 mg)
  • Vitamin B Complex
  • Creatine (formula varies, 5 grams per dose)
  • Vitamin C (buffered, 1000 mg)
  • Vitamin E (400 IU)
  • Calcium (250 mg w/ Mg & Zn)
  • Zinc (30 mg + copper)
  • Acidophilus (8 strains)
  • Olive Leaf (potency varies)
  • Vinpocetine (10 mg)
  • Melatonin (2.5 mg)

Make a list of all of the medications you are currently taking  and be sure to include over-the-counter medications, vitamins, and herbal supplements.

Record Keeping:  Summarize your coping strategies

Coping with fibromyalgia is particularly difficult because the symptoms are invisible and chronic. A person can’t simply “get over” fibromyalgia with the passage of time or wishful thinking. Lifestyle modifications may help you conserve energy and minimize pain. Commonly endorsed strategies:

  • Learn what factors aggravate your symptoms and avoid them, if possible.
  • Sit in a hot tub or shower to ease muscle pain and stiffness. Also, hot packs or wraps may be applied to sore spots
  • Maintain a regular sleep schedule, and try to get eight hours of sleep per night
  • Avoid intense activity
  • Think “moderate” exercise
  • Understand your limitations
  • Choose activities you can do and enjoy doing
  • Start slowly in short increments of activity and build up slowly
  • Stretch properly before activity
  • Take steps to avoid negative post-exercise symptoms

Fibromylagia and Insomnia

I have done some research on this topic and I have made some changes. I can give you some tips on getting a good night’s sleep that did work for me. They include establishing a before sleep come down and cool routine, doing yoga before heading for bed, and other changes that I made my bedroom into a “sleep oasis”. I hope the information the these posts is helpful.
Fibromyalgia: The Pain-Sleep Connection
Sleep better and improve your sex life with yoga

22 thoughts on “Coping with Fibromyalgia

  1. I am so worried, I seem to have all the symptoms, the doctor is sending me for blood test, then to a rheumatoiligist, but she didn’t seem concerned about the amount of pain I am in, just told to take pain killers.

  2. Pingback: Fibromyalgia and Trauma « Dr. Kathleen Young: Treating Trauma in Chicago

  3. Pingback: Bloggers Unite for Fibromyalgia Awareness Day | Fibromyalgia Haven

  4. Hi! I didn’t know you had FMS. This is quite an interesting and informative post. Coping is your best ally in the fight against invisible disabilities, and I am saying this from experience. If you possess positive coping strategies, it would be easier for you to accept things connected with your ailment and be able to adopt more readily.

    I am suffering from chronic kidney failure, and if fibromyalgia won’t kill you though you’d die with it, kidney failure will kill you or you’d die with it some other way.

    As for me, I have been fighting it for almost 6 yrs now, and I’m proud to say that I am a survivor, fighter, and thriver.

    Juliuss last blog post..My Dialysis Treatment Update

    • @Julius
      Thanks so much for commenting. I send you my very best wishes. Keep up the coping with kidney disease and the good fight.

  5. Very informative, as all your posts are, TT. I’ve heard about fibromyalgia but did not know much about it. Thanks for enlightening me.

    • @ladylyf
      I think many have heard the word but few know what the disease is like for those coping with it every day and all the way to the grave. Normally I avoid dwelling on my health and informing people about it. However, there is one day every year that I make an exception.

  6. Timethief,

    I’m so sorry you suffer from this horrible disease. I wonder if there is something (a toxin or pollutant) that might even be triggering a genetic predisposition because there are so many new cases of this disease all the time.

    I truly believe (as a biopsychologist) that this is the case–and the case for many disorders, syndromes, diseases. I believe there have always been people who carried a genetic presdisposition but that predisposition was not triggered until recently when so many more toxins and pollutants became extreme in our environment.

    This was a very informative article! I plan to send it to two of my girlfriends who suffer from fibromyalgia also.

    Melinda

    Melindas last blog post..Revisiting Punk Rock and Old Home San Francisco!

    • @Melinda
      I wouldn’t be surprised to hear that there is a toxin to pollutant acting as a catalyst for this disease in those who are genetically predisposed. I also expect that future research will demonstrate that many other conditions are also triggered by toxins and pollutants as well. And I glad you found enough substance in the post to refer it to your freinds. Please convey my best wishes for their wellness to them for me.

  7. I’ve been lurking here for a while, never commenting. Anyway, just wanted to say thanks for helping me understand what fibromyalgia is. I’m so sorry that you have to deal with such a horrible condition, day in, day out. I’m sure you’ve found ways of coping, clearly you have… but I wish you wellness.

    Svastis last blog post..Nightmare on Acland Street

  8. Pingback: Bloggers Unite for Fibromyalgia Awareness Day « Fibromyalgia Haven

  9. This is such a wealth of information that I have linked to you from my blog! Thank you for posting.

    I imagine others will find it encouraging, to know that you have been successful making sleep changes for example.

    • Thanks for your comment. I have had a very frustrating week dealing with blog scraping content thieves. I intend to get some new posts up and then come back to my reader’s comments and visit their blogs.

  10. Pingback: Fibromyalgia Awareness Day is May 12 « Dr. Kathleen Young: Treating Trauma in Chicago

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