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kirinhealthprogressjournal · 7 years

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I think I might have fibromyalsia.

sugar seems to make it worse. drinking apple cider vinegar lemonade seems to help.

I’m just in pain all the time. To a point that I’m kind of just used to it unless it gets really really bad for whatever reason. Even just lying still in bed for an hour, I start to get stiff all over.

I mentioned to my husband I never had those dreams where you have to pee really bad and you dream you’re in the bathroom and sitting on the toilet and then you wet the bed.

That didn’t happen to me because I know when I’m dreaming. When I’m dreaming, I’m not in pain and it’s so much easier to move and do things.

When I was younger I used to want to rock back and forth idly, a lot, especially as a teenager, because it would dull the pain. But I quickly learned that disturbs people and I trained myself not to do it, even though it helps, and I’m not doing it because I’m nuts.

When I had kids, I got away with it a little more. When I was doing it at work, I just explained “Oh I have small children” so like, of course I would be in the habit of rocking them to sleep all the time. And people accepted that readily.

I just got done working out a bit ago, and it’s 2am, and I’m sitting here all by myself watching GMM on youtube, and I decided to just literally grab hold of the sides of the computer desk and very purposefully rock my body back and forth, using my arms, and it feels good.

Sometimes I forget the dull ache is there all the time, until I take pain meds for my period, or my husband strokes my back, and then the pain goes away and it feels so good.

My ex boyfriend said he missed that after we broke up. Because when we were just standing around together, I used to hold onto his hands, and sort of rock myself back and forth while he just kind of stood there and supported me like this computer desk. But he didn’t think it was crazy, I think he called it a sort of dance. I don’t think he knew I did it because it lessened the pain I live with chronically.

I’ve done research on fibromyalsia. It sounds like basically nobody knows what it is. It’s just increased activity in the pain receptors of your brain. I spoke to a friend who was diagnosed, and she ended up moving to Florida or California or something, to help manage it. I don’t know if that helps or what.

It seems like diagnosis is difficult or impossible as well. It’s almost a blanket statement for ‘you say you’re experiencing chronic widespread pain, and we don’t know why.’ It’s like the adult version of colic.

And as far as I know there isn’t a cure either.

But I’m gonna keep working out because I think it helps. I’m gonna maybe avoid sugar, even though I crave chocolate often, it might just be a magnesium deficiency. I need to remember to drink the apple cider vinegar lemon stuff every day because I know that helps. It was amazing to wake up in the morning and not be in so much pain I wanted to cry just dragging myself out of bed.

What really sucks about it is, people hear about this, and they think you’re just weak willed, or lazy, or even lying for attention. People literally think this is a ‘made up’ illness. A friend of ours even joked about it in front of my face, even though he didn’t know I probably have it.

I have so much wrong with me, it kinda does sound like I’m making it up, or that I must have hypochondria or something. But I am medically diagnosed anemic, and hypothyroid, and psoriasis. And the thyroid pretty much affects every other organ in your body. So the heart, the intestines, lungs, (I had a bizarre outbreak all over my torso of little red spots about three years ago and the doctor told me my immune system was basically attacking my lungs, and that nobody knows what causes it, but that it would go away.)

Add defunct immune system to the list. But when your intestines aren’t working, you basically just don’t have any energy, and your body isn’t getting the nutrients it needs, so that explains the anemia. Having a defunct immune system means I could very well have a form of glandular fever that one you contract it, it goes mostly dormant most of the time, until your body is weakened by something, and then it flares up again.

And even if I don’t have a cold or a stomach ache, or any reason to have an infection, if I overexert myself one day, it’s pretty common for me to wake up the next day with a legitimate fever and cloudy urine. That’s been happening since I was a teenager. And I knew something was weird with it even then, because the incubation period for stuff like that is three days. I can’t go to someone’s house, spend the night, and wake up having a fever from an illness from someone else in the house.

People make fun of me, people push me to do things I don’t have the physical or emotional strength to do, people don’t believe me, or they think I’m being a big stupid baby and I need to suck it up and just /do/ these things and not sleep for 12 hours in a 24hr period, and get a job where I go every day and can’t call in sick because I have another fever or I’m just too damned bone-crushingly tired for no reason at all. Again.

I feel useless and I hate it. I was feeling well enough earlier to do a load of dishes, and pick up some trash, and I did that. The house really could be in a worse state than it is, but I just feel crushed when I not only don’t have the strength to keep up with it, but when I expend energy I don’t have in order to clean it, nobody cares and it’s fucked up again in a day or two anyway. Meanwhile I haven’t felt well enough to do anything about it.

I’ve been doing so much research, I’ve been working so hard. I’ve been eating foods that are supposed to help me, and I’ve been drinking herbal teas, and taking supplements, and using essential oils.

I tried Lexapro again and that just fucked me up so much worse I’m still trying to get back in shape because it made me feel like I was living my life in a vat full of molasses and it was miserable.

Caffeine seems to help, so I drink that. It’s diet coke, and I worry about the chemicals in it, but I definitely don’t need the sugar. And I don’t really like the taste either, so I’m only drinking it when I need to.

I really don’t want to be dependent on pain killers, but it often feels like the only time I feel good and normal and happy, and productive, is when I’ve taken two Excedrin migraine extra strength to manage my period cramps, which used to be so bad they’d cause me to go pale and clammy and puke and pass out from the pain.

Ever since I had kids, they’re a lot better, but I still take the excedrin.

....

It’s so hard, just trying to be social, and people want you to make commitments to something, and you can’t. Because you don’t know when that morning comes, how you’ll be feeling. I often wake up and in addition to a fever, my face and my hands and my feet and my abdomen will be swollen. This had happened my whole life.

I’m actually kind of angry that now when I look back at pictures of myself when I was about 15, it’s quite obvious there’s something medically wrong with me, and yet nobody noticed or did anything to help me. They just expected me to be normal and made me ashamed of myself if I required anything from anybody.

When I was pregnant for the first time, my appointments were in the morning, and my doctor so often said “You’re really swollen. Let me see your face, let me see your ankles.“ But I hardly knew how to respond. They tested me for gestational diabetes and I didn’t have it. The swelling was normal for me. and I was confused by her at the time, but now I can see it. I can feel it when I wake up, I can see my eyes are swollen, I can see my nose is puffy. I can see my wedding ring is well stuck on my finger when it usually slides off so easily. Working out makes it go away and makes my nose run, but idk if thats related to fluid balance.

I guess I’m hoping that keeping track of all this will be able to shed some light on my physical health and I’ll be able to make more progress.

I forgot I need to buy almond milk for my low blood pressure. I could also buy more enzyme capsules to help my digestion. I know they helped before and I’m almost out.

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