I'd love to try acupuncture too. I didn't do it because you can't give blood afterwards but I don't think I can give blood any more anyway so am willing to try it.
I have a date for my tribunal and am now scared. I've started a thread asking for advice. I doubt it'll get any responses because no-one posts on the disabled parents board.
Hope everyone is managing ok today.
I posted this on my FB page earlier, to try to explain a little about what Fibro is like for me. I thought I'd share in case it helps anyone else.
This is a description of what it is like to live with fibro - stolen & adapted from FMAUK
WHAT YOU SHOULD KNOW ABOUT ME
- My pain - My pain is not like your pain. It is not caused by inflammation. Taking medication does not help me- it might ease the pain a little but it never goes away. Sometimes it is in my joints, sometimes in my muscles, sometimes both. On a good day, it feels like pulled muscles. On a bad day, it hurts to be touched. If you brush past me or poke me & I wince, it is nothing personal, it just really hurts more than you can imagine. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
- My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in activities, but I can't. My body does not work the way it should. I CANNOT run or lift things. Sometimes it is hard to put one foot in front of the other. Please do not take this personally. If you saw me shopping yesterday, but I can't help you today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
- My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. It may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
- My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. I cannot walk in a straight line. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
- My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it. It hurts.
- My temperature - I often feel cold & have goosebumps & shiver, despite being hot & sweaty. It might be a hot day & I'm clutching a hot water bottle. My internal thermostat is broken, and nobody knows how to fix it. There is no cure and no way to ease the symptoms.
- My mood - Yes, there are days when I would rather stay in bed or in the house or die. Not being able to live the life you want or the life you had is horrible. Severe, unrelenting pain & sleep deprivation can cause depression. And even if not clinically depressed, it is difficult to feel bouncy and motivated when everything hurts & when you know doing something will cause your symptoms to worsen. Your concern and understanding or simply a kind smile can make a huge difference. Your snide remarks can tip me over the edge. Please don't judge me.
- My stress - My body does not handle stress well. If I can't help you or am unable to come out or can't commit to something, I'm not lazy. I cannot manage every day tasks like cooking, cleaning, eating etc let alone additional things. Everyday stresses make my symptoms worse and can incapacitate me completely.
- My weight - I may be fat or I may be skinny. Either way, it is not by choice. I can't eat because it hurts. I can't tolerate certain foods. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.
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My need for therapy & medicine - If I get a massage, don't envy me - it is very painful. My body is knot-filled. If I can stand the pain, a massage can help, temporarily. Yes, I take handfuls of drugs every day. They aren't a cure. They make the bad symptoms a little more bearable.
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My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. The fact that I function well some days doesn't mean I don't have bad days. And on a bad day, I am bedridden, unable to get up. I have to crawl to the bathroom, shuffle downstairs on my bottom & crawl back up on my hand and knees. I might survive at work but that uses every last ounce of energy. At home, I often need help to walk and rely on a walking stick or crutches. I am a part-time wheelchair user. I hate needing aids to walk and loathe going out in my chair. But without those things, I wouldn't leave home.
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My uniqueness - Even those who suffer from FMS are not alike. What one person suffers is different to another person's suffering. I have pain all over my body which has lasted for a very long time. I may have migraines or hip pain or back pain or leg pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies.