I promised to discuss what Fibromyalgia (Fibro) is. Well, no one seems to really know. There are a lot of theories “out there” in the medical and nursing literature. Yet some MDs and RNs still don’t even believe it exists!
Regardless of what “some” medical personnel believe, fibromyalgia is a real disease entity and is recognized by all of the major medical and nursing organizations, not to mention the CDC and the National Library of Medicine – which has an official MeSH subheading for fibromyalgia. There is a great deal of research literature that has been generated.
Some people have mild fibromyalgia, some have very bad fibromyalgia, indeed. Fibromyalgia means pain in the muscles and connective tissue. No one knows what causes it. There are many theories about causation, but nothing “engraved in concrete.” The most common causal theory is that it tends to run in families.
It is not a disease of inactivity. But it may be related to dysfunctional sleep. There is a consensus that those with fibromyalgia have inadequate stage 4 sleep.
The National Library of Medicine’s MedlinePlus website has THIS to say about Fibromyalgia:
“Fibromyalgia makes you feel tired and causes muscle pain and ‘tender points.’ Tender points are places on the neck, shoulders, back, hips, arms or legs that hurt when touched. People with fibromyalgia may have other symptoms, such as trouble sleeping, morning stiffness, headaches, and problems with thinking and memory, sometimes called ‘fibro fog.’
No one knows what causes fibromyalgia. Anyone can get it, but it is most common in middle-aged women. People with rheumatoid arthritis and other autoimmune diseases are particularly likely to develop fibromyalgia. There is no cure for fibromyalgia, but medicines can help you manage your symptoms. Getting enough sleep and exercising may also help.”
As a person with fibromyalgia, I can say this description is far from comprehensive! Fibromyalgia makes you feel like you have flu – all the time. You can hardly make yourself get up in the mornings, and by nightfall you feel too tired even to get undressed to go to bed. Many is the time I have simply slept in my comfy recliner all night under the double-thickness fleece afghan that my DD made for me – in my favorite color and favorite pattern (teal – paisley) – because I was just too “wiped out” and painful even to go to bed! Many other “fibro” patients will tell you similar stories. Many mornings I have not been able to force myself out of bed in a timely manner – and that has made my dear Ol’ Curmudgeon late starting work (which means he is late getting to his computer here at the house, and has to work later in the afternoon).
We “fibromites” are in pain 24-7-365. It may not always be severe, but it is constant, nagging, it absolutely wears you out. There is not a day without pain, but some days are better than others. On those days, we “fibromites” tend to try to do all the things we have been intending to do but couldn’t because of the pain and fatigue. That means we “overdo” and end up with worse fibromyalgia symptoms for several days afterward. Typically, this pain may not start for 1-2 days, and at first it is hard to connect the “overdo” with the delayed symptoms. Eventually, we “connect” it, but we continue to “overdo” on “good” days anyway – because we have to get things done – cooking, laundry, going to work, cleaning house, childcare, hobbies, attending events, going to Church, sports, etc.
If the fibromyalgia gets worse over time, we gradually reduce our activity, more and more, unless we “connect” that doing stretching of some sort (Yoga, pilates, Tai-Chi, etc) helps – some. For some of us it helps more than it does others. For some people, the fibromyalgia gets less painful over time, and may even go away. All of us who have heard that wish we could be in that group!
The following is from the National Institute of Arthritis and Musculoskeletal and Skin Diseases:
People with fibromyalgia may also have other symptoms, such as:
* Trouble sleeping
* Morning stiffness
* Painful menstrual periods
* Tingling or numbness in hands and feet
* Problems with thinking and memory (sometimes called “fibro fog”).
For me, the “fibro fog” is one of the more disconcerting symptoms. I’m of the age when I worry about my memory. Waking up to “fibro fog” can be scary!
Treatment is difficult. For some, the newer medications (Lyrica, Cymbalta, and Savella) approved by the FDA may prove helpful – but they are extremely expensive. My Lyrica costs me over $100/month. Other medications used include some of the antidepressants, some Non-Steroidal Anti Inflammatory Drugs (NSAIDs), low-dose Selective Serotonin Reuptake Inhibitors (SSRIs), some of the muscle relaxants, and sleep aids. Many of these are expensive.
For myself, I have found that using Benadryl to help me sleep is better (and cheaper) than commercial Rx’d drugs. I stretch, gently and slowly, when I first get up to relieve some of the overnight stiffness. I do take Lyrica, but in a small dose. (It makes me sleepy and dopey if I move to a higher dose.) As I cannot take NSAIDs, I take Arthritis-Strength Tylenol in the morning, and Tylenol-PM in the evening. I use an Aveeno lotion (the one with ylang-ylang in it) to relieve the skin itching and flaking that has begun to occur – probably mild psoriasis related to my rheumatoid arthritis. It also makes my muscles feel better when I rub the lotion on the skin over them, and the scent really is relaxing.
I take at least one nap a day. Even with the assistance of Benadryl (in the Tylenol-PM) at night, I seldom sleep more than 6 – 7 hours at night, and I need more sleep. So in the mornings, after breakfast, I sleep for 2-3 more hours. It seems to help a bit. And every little bit helps!
Fibromyalgia destroyed my plans for a career in academic research, and teaching. But it led to a smaller career in consulting. I cannot work outside the home. My window of work activity is about 5 hours – between 10AM and 3PM. I spend time with on-going training activities with Emmy in 15minute intervals throughout the day.
Living with fibromyalgia is interesting. Then I developed RA on top of it. Now, there are days I don’t know whether I’m stiff and hurting from RA or from fibromyalgia. So, life has become even more interesting. I’m about filled up with “interesting,” I can tell you!