{"id":124,"date":"2024-01-30T22:22:58","date_gmt":"2024-01-30T22:22:58","guid":{"rendered":"http:\/\/localhost\/dogmotifblog\/?p=124"},"modified":"2024-01-30T22:22:58","modified_gmt":"2024-01-30T22:22:58","slug":"chronic-fatigue-with-no-end-in-sight","status":"publish","type":"post","link":"http:\/\/localhost\/dogmotifblog\/2024\/01\/chronic-fatigue-with-no-end-in-sight\/","title":{"rendered":"Chronic fatigue with no end in sight"},"content":{"rendered":"

POTS, aka Postural Orthostatic Tachycardia Syndrome<\/strong><\/a>: A condition where an unusually significant increase in heart rate accompanies the act of going from lying to standing. This usually accompanies other symptoms such as fainting upon standing, constant fatigue, pain in the lower body from blood pooling in the legs, trouble catching breath, headaches, and many many more. Basically, it effects everything in the autonomic nervous system; the system which controls your unconscious bodily functions (heart beating, blood flowing, digestion, etc.) POTS and other conditions like it which disrupt this system are known as dysautonomia<\/a>.<\/span><\/p>\n

I have POTS, and god does it suck. I am so fatigued I can’t shower more often than once a week at my best (perhaps this could be helped with a shower chair, I am trying to get one.) I can’t stand for more than a minute or two, and doing any kind of moderate physical activity can make me practically immobile for hours on end. I was diagnosed 2 years ago after another 2 years of being treated for various vitamin deficiencies until I researched for myself and got referred to a cardiologist.<\/p>\n

The treatment options are mediocre. The first step is upping salt and water intake; I take four capsules of pure sodium and have to drink at least 3 liters of water a day\u00a0 (which I will admit I don’t often accomplish! Water tastes bad here, its a struggle.) I have no clue if this has actually helped my fatigue at all since It has gotten naturally worse since I started treatment, but it definitely isn’t hurting anything. After that the recommended next step before resorting to medication is small amounts of exercise, but even at the beginning my fatigue was too bad for that so they put me on Florinef<\/em>; which is meant to give me more blood or something. I know it helps with my fatigue so I don’t care all that much about the specifics. I’ve tried following the recommended exercise routines on and off throughout treatment, but its very difficult for me to justify using any of my limited energy on something like that.<\/p>\n

Using spoon theory<\/a> to demonstrate: Lets say I have 7 spoons today. I use one spoon to make breakfast. I use 4 spoons to take a shower and get dressed afterwards. I use 1 spoon gradually throughout the day just to move around and get to the things I need to do. I use 1 spoon to make lunch. I am now left with zero spoons. I could lay in bed for a few hours to regain a spoon or two, but once I do that am I seriously going to use 3 spoons, one of which I don’t even have; to exercise? If I do, I won’t have enough left for anything <\/em>else. <\/em>including making dinner, getting ready for bed, etc. and then lets say instead of waiting until this point to exercise, I do it first thing in the morning when I still have all 7 spoons. Then I’ll have 4 left for the rest of the day. That means I need to sacrifice one of my necessary tasks for the day later. It’s just not worth it.<\/p>\n

There was a while where I was doing physical therapy for another condition I have, joint hypermobility. (Wondering what kind of joint hypermobility? join the club! The doctor didn’t bother to figure it out since the treatment options are the same regardless. Personally I believe I have hypermobile ehlers-danlos syndrome, but it could very well be joint hypermobility spectrum disorder.) During this time my fatigue was slightly better from the conditioning, but the PT appointments would take all my energy for the day. I couldn’t do my necessary tasks at all. I got stronger, and it did help my joint pain in some ways! But once the prescription was done and I needed to continue the routine at home I just couldn’t. It’s a constant uphill battle I have no way of winning.<\/p>\n

They put me on beta blockers, which limit adrenaline so my heart rate doesn’t go as high as it used to. It does it’s job, but that’s all it does. Sometimes they can make things worse so there was a lot of warnings before they put me on them, but for me my fatigue is the same. I’ve never really seen the high heart rate as my main issue besides when it causes specific episodes. Since I haven’t had one of those episodes since i started taking it, I assume that means it’s helping in that regard. But the fatigue remains.<\/p>\n

My most recent cardiologist appointment showed me they’ve basically run out of options, or at least, options that they’re willing to try. They said the only thing they have left that could possibly help my fatigue would be testing me for vitamin deficiencies and treating them if I have any. The results came back as slightly anemic and vitamin D deficient, so they put me on supplements and sent me home. It’s been 2 months and I feel exactly the same. I have an appointment sometime in March to check in and see if my vitamin levels and evened out, but there’s no plans after that. This is probably it.<\/p>\n

When I research POTS and POTS treatment options, it always emphasizes “exercise is the best way to improve POTS” and “Most adolecent patients grow out of POTS within 5 years of developing it”, but I have no way of knowing if they are talking about minor cases of POTS or POTS like mine where the fatigue is debilitating. Of course I hope I grow out of it. God that would be an amazing outcome. But I doubt I will, and I doubt exercise will help as much as they say it will. If I hadn’t done PT I’d be more open to exercise, but I now know even when exercising with professionals for months who build their routines around my POTS I still end up so exhausted I can’t function.<\/p>\n

It’s hard to live with this. It’s hard to constantly feel like this is my fault because I’m not willing to sacrifice everything else in my life to do regular exercise, and maybe have a chance of making this easier. It’s hard to feel like I’m a faker for using a cane when allegedly I wouldn’t need it if I just tried harder, or like using a cane is bad because I technically need to be exercising anyways. When I’m having an episode, without the cane I can’t participate in life. That feels like it should be a good enough reason to use a cane, but the guilt is still there.<\/p>\n

They make you think there’s always a solution. They will keep telling me to exercise no matter how much I do it and it hurts me, maybe they’re right and it would if i tried harder! But I don’t think I’m capable of trying harder in my current state. If i have to get so much<\/em> worse to get even a little bit<\/em> better, I don’t know if its worth it. I think doctors just don’t want to admit that I’m most likely not going to get better. Let’s hope I am proven wrong.<\/p>\n","protected":false},"excerpt":{"rendered":"

POTS, aka Postural Orthostatic Tachycardia Syndrome: A condition where an unusually significant increase in heart rate accompanies the act of going from lying to standing. This usually accompanies other symptoms such as fainting upon standing, constant fatigue, pain in the lower body from blood pooling in the legs, trouble catching breath, headaches, and many many […]<\/p>\n","protected":false},"author":1,"featured_media":126,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[27,25,29],"tags":[32,31],"_links":{"self":[{"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/posts\/124"}],"collection":[{"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/comments?post=124"}],"version-history":[{"count":2,"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/posts\/124\/revisions"}],"predecessor-version":[{"id":127,"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/posts\/124\/revisions\/127"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/media\/126"}],"wp:attachment":[{"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/media?parent=124"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/categories?post=124"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/localhost\/dogmotifblog\/wp-json\/wp\/v2\/tags?post=124"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}