I’ve had it for about 29 years now. In a word—-Pain. Never-ending, constant pain. Your shoulder will suddenly start to hurt, which can last for a few seconds to days. That can happen in any part of your body. When it quits, it will start in some other place, again for only a few seconds to days.
One day I woke up, got up to go to the bathroom, and fell on my knees with horrible pain in both groins. I had to crawl to the bathroom. It felt as though I had sprained or tore both groin muscles, was that way for a week. I couldn’t go to work. All of a sudden it stopped.
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It causes brain fog—forgetting things that used to be just automatic, sleep disturbances, your brain just will not shut up. You do stuff like put milk in the cabinet and cereal in the fridge, your wallet in the freezer, Go into the bathroom to pee, and all of a sudden you are standing in the tub, fully clothed with your watch and glasses on, frequently wonder if you have Alzheimer’s or dementia—-you test normal on all tests. The one that needs to be done is called the Stroop test. It actually takes us twice as long as “normals” to process stuff in our brains.
You can frequently get an incredibly intense itch—-anywhere, on me, usually my thumb or any finger or palm of my hand. And I do mean intense, To the point, you are screaming and wanting to run out into the street pulling your hair off and ripping your clothes off.
You need to put immense pressure, to the point of pain on the spot to get a little relief. It can last several very long, excruciating minutes to about 30. It seems days. I’ve put all sorts of stuff on it and taken Benadryl or anything else I can get my hands on. ( still do not know what has worked, if anything.
Your whole body can ache, like the horrible flu. You feel tired—-beyond belief. You feel so tired you are scared to fall asleep because you are too tired to breathe. You feel like you just won’t wake up because you won’t be able to continue breathing in your sleep. There develop tender points on your body. certain areas that when touched are very painful.
My husband would bend over, place his hands on my knees and give me a kiss. Did it for years, all of a sudden, it started hurting, to the point I just wanted to haul off and slap him! He had to stop doing it, even though he was not applying that much pressure. There are more—-flare-ups, you are worthless when they happen. I think this is enough—-in short—-you do not want this!!
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