For Fibromyalgia Awareness Day, May 12th
I had a pretty important anniversary on April 25th. I wish I could say it was for my wedding or long term relationship . . . but no, it’s nothing romantic; far from it. This year on April 25th, it has been three years since I was diagnosed with Fibromyalgia and Chronic Myofascial Pain Syndrome. I’ve had it for a lot longer than that, but that’s when they finally pinned it down.
I had actually been hearing that lovely f-word since I was about 20 I guess. I went to my family doctor with severe muscle spasms in my shoulders and upper back. I couldn’t sit in class, and I couldn’t sleep at night. She gave me a muscle relaxer for day, and one for night. When I went back to her to touch base like she asked, I told her they had helped somewhat, and she said something to the effect of “Well, I’m glad, because I was afraid you might have Fibromyalgia, but you’re SO YOUNG!” I’ve heard that so many times . . . “But you’re so young!” I assure you, I feel like I’m about 76 on the inside.
Those muscle spasms came on and off all the way through college. When they would strike, I’d just blame it on the stress of school and being in shows and have those muscle relaxers called in. In a couple weeks or so, they’d subside somewhat.
Then in September of 2006 I went through a period of INTENSE emotional stress. The pain came back full force and all over. It was unrelenting this time. After about a month of it I went to a doctor in Jacksonville. She gave me Ultram, a pain reliever (which has been my right hand man ever since) and that same muscle relaxer for night I had taken for years. I was sent for x-rays and an MRI which of course showed nothing. They moved me to high grade pain killers (Lorcet) for a few months, nothing changed, and after a couple more doctors I got the final verdict.
The doctor I’m with now did something that no one had really ever done before. He touched me where I told him I hurt. He tested out other areas where I had sensitivity without telling me what he was doing, and made me jump out of my skin (namely my chest and inside of my knees).
This is an illustration of the 18 points of pain/sensitivity. To be diagnosed with Fibromyalgia, you have to have 12. I have all 18.
I’m not saying all this to throw myself a pitty party. I’m writing this so that maybe, just maybe, someone that is suffering may stumble upon this after being told they’re crazy, depressed, or worst of all. . . lazy, and know they’re not alone. If your doctor doesn’t believe in you, you CAN find one that does. Keep looking.
I’m not that great with words, but I’ve come across this several times, and it sums things up wonderfully.
LOVE LETTER TO NORMALS
by Claudia Marek
Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!) If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don’t want you to think I’m making this all up as I go along.
Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for. Other times I may take a lot of medication and still won’t feel any better. That’s just the way it goes. I can’t control how often I feel good or when I’m going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I’ve seen them too. Look at the list of side effects and the few symptoms they help in return. Even in the best studies those expensive compounds didn’t help over half the people who tried them. No matter how happy the people in the pictures look, there’s still no miracle drug available.
There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better — I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen because there isn’t any way for me to know. Sometimes this is a real spoiler and I’m sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe. You may remember me as a light-hearted fun loving person — and it hurts me that I am no longer what I was.
Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I’ve been beaten up or run over by a truck. Sometimes I feel too tired to lift up my arm.
Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I’m creaky and I’m klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination, it’s all off. I walk slowly up and down stairs because I’m stiff and I’m afraid I might fall. When there’s no railing to hold on to, it’s terrifying.
Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.
Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer’s. New kinds of brain scans have actually documented differences in our brains.
I mentioned my sensitivities earlier and I need to talk about them again. It’s more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don’t know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that’s really all right. I don’t want or need you to give up doing what’s important to you. That would only make me feel worse. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just better to let me be.
I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I’ll toss and turn and not be able to sleep at all. Every little thing will keep me awake. I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.
All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m grateful. I can’t always admit it at the time, but I’m admitting it now. One thing I can tell you is it won’t help to tell me I’m irrational. I know I am, but I can’t help it when it’s happening.
I thought that was a pretty brilliant description of what daily life is like for us. Here is a list of symptoms that go with Fibromyalgia, to shed a little more light; also for anyone that may be questioning.
3. sleep disorder
4. morning stiffness
5. cognitive or memory impairment
6. irritable bowel
7. chronic headaches
8. TMJ syndrome
9. numbness and tingling sensation
10. muscle twitching
11. skin sensitivities
12. dry eyes and mouth
14. allergic symptoms
15. mitral valve prolapse
16. heel or arch pain
17. brain fatigue
18. painful periods
19. chest pains, noncardiac
21. panic attacks
22. irritable bladder
23. multiple chemical sensitivities
24. joint hypermobility
26. personality changes
29. severe muscle weakness
30. intolerance of bright lights
31. alteration of taste, smell, hearing
32. low frequency, sensorineural hearing loss
33. decreased painful sound threshold
34. ringing in the ears
35. exaggerated involuntary rapid eye movement
36. changes in visual acuity
37. intolerance of alcohol
38. enhancement of medication side effects
39. intolerance of previously tolerated medications
40. severe nasal and other allergies possible sinus infections
41. weight change (gain)
42. muscle and joint aches
43. night sweats
44. heart palpitations
45. muscle spasms
46. Raynaud’s-like symptoms
47. carpal tunnel syndrome
49. difficulty swallowing
50. interstitial cystitis
changes in weather
cold or drafty environment