What in the heck is fibromyalgia

I have it, probably have had it for years, undiagnosed, made me whine and ache and hurt and sleep and get depressed and, you name it. Now that my blessed doctor in Jefferson City, MO has diagnosed the problem, the next step is to learn more about it, why it happens and what to do about it. I am way too young to be relegated to the rocking chair on the front porch, waving to people as they drive down the road.

Fibromyalgia…nasty, nasty, nasty diagnosis for anyone, even one’s worst enemy. What is it? It’s thought to be caused by a low level of serotonin in the brain. Serotonin is the “calming agent” the calming neurotransmitter. In patients with fibromyalgia, the brain doesn’t make enough serotonin, therefore the brain goes into an “anxiety mode”. It allows more pain transmitters to occur. It’s almost like a rapid fire mode of sending pain signals everywhere in the body, the hands, feet, legs, upper and lower back, abdomen. It creates migraines, nausea, constipation alternating with diarrhea, “brain fog” or a sudden inability to think straight, depression. Fibromyalgia can be triggered by stress, sleep disorders, depression, trauma, multiple surgeries, serious illnesses. It can be accentuated by certain illnesses such as osteoarthritis, lupus, or rheumatoid arthritis. Fibro tends to affect more women than it does men.

Muscle weakness and decreased energy levels are common with fibro. One needs to keep themselves in as good of a physical shape as possible. Yes, it’s painful, and yes, it will make you tired, but one must continue a mild exercise routine or they will be bed bound in a very short time. Mild exercise such as walking, yoga, and arm and leg exercises are recommended. Do not do high impact exercises or strenuous exercise. It isn’t necessary and it will claim too much energy to do so. I am still in physical therapy, something my pain management physician recommended before the diagnosis of fibro was confirmed. Simple exercises such as holding a wooden dowel and squatting to a chair sitting level, using a 1 or 2 pound weight (I am now up to a 4 pound weight) of mild resistance pulling my elbows straight back, level with my chest, to behind my back to build and maintain shoulder muscles and decrease the pain there. I also do leg lifts, with the toes pointed upwards, wearing a 2 pound weight on my ankles. There is another exercise that’s a bit harder, but it increases dexterity and balance. With that exercise, one should be on their hands and knees, with the knees spread apart at least 12 inches. Start out with no weights then add them 2 pounds on the ankles and 1 pound on the wrists. Lift the left leg and the right arm at the same time. Keep toes pointed downward and hand with the palms facing outward. Then, reverse this and lift the right leg, toes down and the left arm, palms out, 5 times on each side. It’s hard to do at first. I felt like a turtle about to fall over. It does increase coordination and balance if you keep at it. These are just some examples of the low impact exercises one can do to maintain muscle strength and abate pain.

There are many meds on the market to help combat the pain. Most of them are not pain meds, per se, but are meds used to treat seizures, meds to counteract the lack of certain neurotransmitters in the brain and to help the brain secrete more of the needed neurotransmitters. I won’t go into medication regimens here, but if you are a fibro patient, or are taking any of these meds, be sure to talk with your physician about the benefits and side effects of taking these medications. Many of them have serious side effects, so know what you’re taking, and don’t stop the medication abruptly or on your own. If any of the side effects are noticed, ones that your physician has talked with you about, call him or her immediately to have a medication review and/or change if needed.

Home remedies are common in the treatment of fibromyalgia. Sleep is important. By that, I mean the deep sleep, the REM sleep or dream cycle sleep that’s important for the body to actually rest. Several herbal treatments are available to help enhance that sleep. Those meds are melatonin and 5-HTP. 5-HTP is a building block for serotonin and is available over the counter, as is melatonin. Serotonin is associated with increased pain levels, depression anxiety and insomnia. Often, fibromyalgia patients have restless leg syndrome. One treatment for this is calcium with Vitamin D added. It is prescription, not available in this form over the counter. Magnesium may be an aid to combat restless leg syndrome. St. John’s Wort is an herbal treatment for depression that could be associated with fibro. Most rheumatologists prescribe an antidepressant to go along with other medications as an adjunct treatment. Other herbal supplements such as the B vitamins, black cohosh, milk thistle, lavender and cayenne have been used, but their effects are not known at this time. Again, don’t use these herbal treatments without the approval of your primary care physician, pain management physician or rheumatologist. Many herbs may interact negatively with prescription medications you might be taking.

Diet: Although the role of food isn’t exactly known in fibromyalgia, one should pay close attention to certain foods. Does the food make one have bowel issues such as constipation or diarrhea? If so, those foods should be eliminated from the diet. Lower salt intake, concentrating on Vitamin C containing foods, those with protein, vitamin B, D, and A are important as they build muscle mass and increase bone strength. This would include lean meat, green and yellow vegetables, dairy products, orange vegetables and fruits such as carrots, cantaloupe, sweet potatoes, pumpkin are all good vitamin A producers. Vitamin B producers would include potatoes, leeks, onions, turnips, whole grains, nuts, pork and green vegetables. It’s important to keep the muscles supplied with the proper nutrients to be able to work, to move.

There’s still much research going into fibromyalgia and one will read many stories. All I can do from a nursing standpoint, and as a fellow fibro patient, is to encourage you to read only from sources that are credible. WedMD, http://www.fibromyalgia.com, http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics, and this article: http://emedicine.medscape.com/article/329838-overview are excellent sources of credible information. I would encourage anyone suffering from fibro to join a support group be it online or a live format. Talking with others, learning their limitations, their treatment modalities, tried and tested, failed or passed modalities, enables one to make wise and proper care for their own illness process. fibro poem

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Apologies for such a long absence

Oh my! It seems like forever since I’ve written on my blog. For that, I need to apologize to all of you. It’s been a whirlwind of doctors’ visits for myself and for my husband, medical procedure after medical procedure, and when one feels like a living pincushion, there’s no energy or will to write much without sounding whiney and complaining. Rather than do that, I’d rather not write at all.

I’ve had so many issues with pain that couldn’t be resolved, couldn’t be pinpointed to a certain causative factor, not in one specific spot, that it made my physicians and consulting physicians wrinkle their foreheads in puzzlement. I finally decided that it HAD to be my spine. After all, I am a retired RN and I just knew it was from the bulges and herniations in my spine, all the way from my cervical spine down to the L-S spine (my tailbone). So, in my infinite wisdom, I visited a neurosurgeon with the admonition “please, just fix it”. He took such excellent care of my husband and I knew he would take just as good of care of me. I trusted him, liked his mannerisms, the way he treated his patients, the level of his skill. After running umpteen tests, he concluded that the pain might have some basis as thought to emanate from the spine, but that it was not the root cause of my problems. He, instead, sent me to a rheumatologist. My first thought was “why?”, and he told me that he thought it was torticollis or possibly fibromyalgia. Torticollis, I might understand because my shoulder muscles were tight as drum strings. But, fibromyalgia, no, I don’t think so. The rheumatologist spent close to an hour examining me, asking questions, had me fill out a questionnaire, and did indeed, come up with the definitive diagnosis of fibromyalgia. After her explanation of what fibro is, how it affects the body, my several year long history of certain ailments and what-have-you, it is indeed fibro. Crud!!! (and double crud to boot!)

I knew a little about this, having had worked with another nurse 14 years ago who also had fibro. I didn’t understand the logistics of it, empathized with her pain and lack of energy, did as much as I could to help her with her patients as well as mine, but I just didn’t understand what it truly was. This is going to mean a lifestyle change for me and as I learn more, I want to focus on teaching others too. it’s a little known about condition, experimental medication regimens to help with the pain and the root cause of the pain, and learning more about energy saving work habits and dietary needs. As much as I wish someone could and would wave a magic wand over my head, and those of others who deal with this on a day-to-day basis, it can’t be fixed, it can’t be cured. Live with it girl…and that I shall do, only in a positive way.