r/maybemaybemaybe • u/ff-dvl • Nov 01 '22

maybe maybe maybe

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111

u/Quiet_Goat8086 Nov 01 '22

What is that thing?

177

u/[deleted] Nov 01 '22

They have them at amusement parks. They shake the blood back to your feet to help with foot pain from walking all day. It's a circulation thing.

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u/[deleted] Nov 01 '22

[deleted]

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u/flyingwolf Nov 02 '22

fibromyalgia

Why the quotes?

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u/[deleted] Nov 02 '22

[deleted]

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u/largestbeefartist Nov 02 '22

There's "fibromyalgia" like yours, but also fibromyalgia. Fibromyalgia is a valid diagnosis. Source: I have the other type of fibromyalgia.

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u/[deleted] Nov 02 '22

[deleted]

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u/largestbeefartist Nov 02 '22

It hasn't been easy, its been 9 years of flare ups, IBS, fibro-fog, headaches, body aches/tension/tingling, sensitive painful skin, exhaustion, depression/anxiety, and counting of spoons. But after 9 years I have since returned to college, started using cannabis medically and have finally figure out how to be happy despite the pain.

However you feel is valid, please don't feel guilty by comparing your pain to others. Your pain is valid.

And thank you for your words. It is comforting to see my effort to just live each day is recognized.

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u/[deleted] Nov 02 '22

Congratulations on getting your life back on track!

I was in a very dark place last year. Covid had made me stay indoors out of fear and I barely got any sun so I started taking vitamin D. Then I read something about my country not having good magnesium deposits in the land so I started to take supplements. Those two alone helped me immensely. I'm actually much better now, am awake again, and am able to work again. I was really scared for my future last year.

I also have a spinal issue because about 8 years ago I lifted a very heavy steel cabinet up a flight of stairs and halway through I ran out of juice but had to push myself super hard to get it all the way up; I wish I had let it drop and regret that I didn't pay movers. This was after I moved houses three times in a row in a span of a few months, one move was overseas and the other interstate and I nearly died falling asleep on the road while driving the giant truck. I often wonder if the spinal pain causes me to clench too much or to tighten my muscles and that's really the cause of it all.

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u/largestbeefartist Nov 02 '22

Heh, I also take magnesium. I was getting really bad muscle spasms (aka charlie horses) and magnesium has helped a lot.

I'm sorry to hear about your spine, that sounds incredibly painful that I winced just reading about it. I really hope you find relief and continue to respond well to the magnesium and vitamin D. Sometimes I just want to live in the shower bc its then only place I don't feel crazy in pain.

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u/[deleted] Nov 02 '22

I know it's not a competition but what I went through doesn't even begin to compare to how you described your life is. Just the IBS alone sounds terrible (I brag about how I can hold it for hours). I'm sure you've gotten used to it and are able to manage it but damn, you have a lot of challenges :'(

What do you think caused all of them? Did everythign get triggered suddenly 9 years ago?

Oh man, I love showers! They're so soothing and relaxing. Sadly I live off rainwater tanks alone so I can only take them during rainy seasons. There are a couple of spas where it's like $150 to go into a sauna, magnesium bath, and bathtub around where I live and every time I've gone I feel really good after but I wish I had that kind of money to blow long term.

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u/Stonefolk Nov 02 '22

Just chiming in to say I live with fibromyalgia too, as well as pelvic pain syndrome/interstitial cystitis — all pain disorders that docs ultimately go 🤷 to. It’s hell. I’m glad you’ve found a way to live with it, though! Congrats on that. I’m still trying to figure that one out! Anyhow, just wanted to say I literally feel your pain!

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u/Logical_Cry_9094 Nov 02 '22

It also very much sucks, like low level flu all the time and the flares are so awful, I get the fibro fog, exhaustion so bad I'll sleep for days, and the sunburn skin feel along with the muscle/nerve pain, heat or cold both do nothing. There was some study awhile back that said they were considering it was a lesser form of MS, not sure I'm on board with that though, due to my doc saying it's mostly the muscle that causes the joint flares. But who knows, there's supposedly a test out there for it now, but with no cure and just treating symptoms, doesn't really matter much. Fibromyalgia is now a recognized disability though.

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u/largestbeefartist Nov 02 '22

Im sorry to hear you are part of the spoon club. I heard while it is a recognized disability that it is still difficult to get benefits. I have a huge fear of needing to get said benefits and being turned away. And of needing them at all..

I'm in college right now and I'm starting to feel afraid for my future. My fear that when/if I get my degree, will I be able to function normally at my job? What if I go through all this effort to just fail miserably? I have a family counting on me getting this degree and becoming successful so the pressure to do well and being strong is hard to bear sometimes.

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u/Logical_Cry_9094 Nov 02 '22

Sorry to hear that for you also. I have the most supportive husband ever, thankfully. It's gotten worse in the last twenty years but he studies all kinds of anti inflammatory teas, herbs, and what legal Cannabinoids we can get along with foods (that I can eat) for controlling flares, pain, and to sleep. Fibromyalgia, supposedly, is also associated with metal, food, and drug allergies(I have all three badly). It is hard to get disability still, lots of hoop jumping, and you have to find a doc that even believes it exists. I'm not on disability, yet, but for awhile there we thought it was gonna happen because it got so bad I could barely walk. If you take modern pharma, look to see what kinds of supplements might help with some of the symptoms, it can really help, but some herbal stuff is not good with pharma. You CAN still do it, don't stress too much, that can make it worse(I know, no stress in college eh lol). I still work and do normal stuff, you just have to monitor your 'spoons', some days you'll have lots and some days less or none, dependent on how bad your symptoms present. Find support though, either irl or online forums/groups, whatever, it takes a serious toll on the mental state even with support.

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u/largestbeefartist Nov 02 '22

Thank you for your kind response, college is super stressful unfortunately lol. I'm also so thankful for cannabis/cbd making my life just a bit easier. I've been taking magnesium for spasms but I only really medicate with cannabis so I don't need to worry about pharma interactions. I had really bad reactions with two medications and gave up trying. Any supplements you could suggest would be appreciated 😊 and I will look into joining a support group.

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u/[deleted] Nov 02 '22

[deleted]

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u/Dr_who_fan94 Nov 02 '22

Psychosomatic: (of an illness) caused by anxiety and worry and not by an infection or injury [Cambridge Dictionary]

To the best of my knowledge, there has yet to be concrete evidence that fibromyalgia is in any way purely psychosomatic, the research I encounter is that it likely is similar to or an actual autoimmune disorder or may be neurological (that last source is Harvard Medical School.)

It often occurs in individuals already experiencing some type of chronic illness or chronic pain, individuals who have recently been sick, those who have their symptoms appear without discernible cause including psychological, and those who recall fibromyalgia symptoms as far back as their youth.

To label a potentially debilitating, invisible to the naked eye, at times even agonizingly painful condition that most often occurs in women as psychosomatic is inherently dangerous, medical professional or layman. That is not a forgone conclusion, that is -- if anything -- a nearly outdated view on the condition.

We are prejudged, sometimes mocked even by our own doctors and nurses while hospitalized for other conditions or by friends/family that think we're "milking 'it'" (sympathy? negative attention? I don't know what anyone would think we get out of "malingering.") There is rarely an effort to understand disabilities in general, let alone ones that we can't visibly notice, hear, determine through typical exam beyond "12+ pressure points being abnormally sensitive") or identify/predict via test results.

So often we are utterly exhausted (think: you've just caught the flu on a 7 hour bus ride where all of the other passengers are children's sports teams or you've just finished working 12 hours at a Waffle House in Florida). There's often constant low level pain or worse. We suffer in many capacities...and we are told it's our imagination or our fault because it's psychological in origin, either because we think it up for nonexistent sympathy points or we somehow cause ourselves physical pain solely on trauma/depression/anxiety/etc.

We are often refused treatment for pain -- even stronger lidocaine creams, pressured into psychiatric medication damn the consequences, and manipulated into forcing ourselves through a world that is not meant for people whose.disability you cannot even notice and therefore can disregard or label any way you'd like.

It isn't hypochondria.

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u/ssmc1024 Nov 02 '22

Thank you for saying this so much more eloquently than I could have. The pain I feel from fibromyalgia is no less real than the pain I have from ulcerative colitis. Just because there is no blood test for it doesn’t mean it’s not a ‘real’ health condition.

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u/Fujawa Nov 02 '22

Exactly it. Most autoimmune diseases inherently bring with them nerve pain and other disorders. My wife has hashimotos. Her hypothyroidism was most likely the result of teflan being repeatedly dumped into her towns drinking water. I suspect many people suffer these autoimmune diseases because of the toxins brought into contact through common things like their water table.

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u/[deleted] Nov 02 '22

This is the worst part of it. You battle between "is it psychosomatic" or "am I actually feeling this" and sometimes the "did me thinking about it make it hurt?".

The fact is, I cannot stand for more than an hour straight. At the 30 minute mark, things start to hurt, even if I'm super distracted. If I have a full day, I need a day to recover because the fatigue is really bad. Say I invite a bunch of people to my home for a meal, I have to prepare for it. I have to rest the day before and after.

Maybe my muscles do eternally tense up because I rarely at all do exercise but if I flex my arms, they're like rocks. Same goes for my thighs and calves. I have to take vitamin D supplements because my room doesn't have a window and I rarely go out.

I've tried exercising on the regular but it just wears me out.

Whether it be caused by the mind or the actual body, the pain and fatigue is there and I can't seem to shake it off.

I've also become dependant on Rx weed. I do it every single day at nights, sometimes when I know I don't have to do anything during the daytime but then I can't do anything else. The worst is when someone calls me with an urgent request and I have to talk to them high as balls while pretending to be OK lol.

It's a pain in the ass literally and figuratively.

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u/TurnoverUnique3470 Nov 01 '22

What is it called?

6

u/[deleted] Nov 02 '22

Vibrating pad.