u/DyspraxiaOrDatpraxia

▲ 3 r/cfs

About Coffee

Has anyone else been basically knocked out for a few days after having some coffee? I had a canned coffee either Thursday or Friday and I've been having an awful time waking up. I can't seem to wake up for a decent amount of time nor can I stay awake once I'm awake. I have basically been sleeping most of the time the past few days.

When I'm awake for a decent amount of time it's usually at night and my insomnia kicking me along with hyperfixiating on things cause of comorbidities.

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u/DyspraxiaOrDatpraxia — 3 days ago
▲ 12 r/cfs

So, on Monday (May 4th) I went and saw my PCP. He ended up looking at my sleep study results and said I have a mild sleep apnea and need a CPAP.

I say this as a preamble to say that, while I did not get officially (?) diagnosed with ME/CFS he didn't throw the possibility in the garbage and dismiss my concerns either. He just said he wanted to see if any of my symptoms may improve if I sleep better. He did write on the paperwork about what I told him and it looked like he is considering my thoughts of CFS as legitimate!

I have to wait til August to be sure and until July to even be able to possibly get the CPAP but at least he didn't brush off my concerns and say it could just be related to my mental illnesses/neurologic conditions specifically!

Sadly, he's leaving his practice in September so if I don't get the CPAP until late July or early August, I'll probably ask if I can squeeze in another visit with him before he leaves then I need to find another doctor.

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u/DyspraxiaOrDatpraxia — 9 days ago
▲ 2 r/cfs

Has anyone applied for a mobility scooter since their diagnosis? If so, did they have a difficult time with a wait or was insurance pretty reasonable? As in, you didn't have to wait like 2+ months or anything. I'm curious because I'm talking to my doctor Monday about my symptoms/etc and wanted to try and talk about looking into a mobility scooter.

My PCP is a bus ride away from me and a short walk from the bus terminal, the bus stop close to my apartment is also a decent-ish walk (they would probably be considered short for an able bodied person who walks a decent amount) but it drains me to do the walls both ways and I have a couple of doctors further in the city as well that feels like a marathon (for me) to walk to from the bus stop I get off at (which is the end of the line for that specific bus).

I need something to be able to get around easier without my legs feeling like they need to be rebuilt for 2+ weeks afterwards (the last time I did those two doctors back-to-back) and I had a few other doctors near the other bus terminal as well.

If I were to get diagnosed, do you think my doctor could say the scooter would be a medical necessity?

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u/DyspraxiaOrDatpraxia — 12 days ago

Is anyone else a gamer? I know that’s probably a dumb question, but does anyone else play more “high intensity” games? Stuff like Fighting or Action/Adventure games? If so, does anyone have tips on how to help with how stiff your hands/wrists get while you’re mashing?

I like to play a lot of Gacha games that are Action/Adventure oriented and I do enjoy Fighting games sometimes. My joints tend to get super stiff and stuff and there have been times where my wrists have popped/cracked while playing because of the stiffness.

Does this happen to anyone else?

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u/DyspraxiaOrDatpraxia — 17 days ago

So, is anyone else expected to try and "pick up the slack" for an older family member when they can't help themselves as much? Even though you struggle with helping yourself or even being able to stand up because of your Dyspraxia? I had that issue this past week and a half, basically. (Technically longer, but worse this within these last two weeks.)

My grandma had come home from being in a nursing home because she was under watch for an IV antibiotic (she's allergic to most commonly prescribed ones so this one is newer). When she came home, the first couple of days were mostly okay but then last Saturday she fell because he legs gave out on her since they were shaky. I tried to assist her to keep her from falling, but failed because if I wasn't careful I know I would have ended up on top of her.

After that, when my uncle and aunt came to help her, I ended up having to go do laundry with my aunt, whom I hadn't spoken to in 8 - 9 months at that point. (Also haven't spoken to her since, basically). She proceeded to tell me I need to do more since grandma supports me and does things for me right now, which... Logically speaking, I know, but what if I physically know I can't? I know most of my limits in this area but she still treated me like crap for not putting in more effort when I had been on the verge of collapse for over a week at that point.

I've been so stressed with my family expecting so much out of me when I haven't been able to learn my limits completely. I was just so exhausted and needed rest but my need for rest is too much for everyone.

Does anyone else deal with their family acting this way with them about this kind of thing?

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u/DyspraxiaOrDatpraxia — 20 days ago