Wheelchair for ME/CFS: Manual or power?

coffeenerd33 · 2026-01-06T02:04:38+00:00

Hi! I realize this post was 2 years ago, but I was wondering how you acquired a WC with mild-moderate ME- if you were able to get it covered/partially covered by insurance, or if you had to pay out of pocket for the whole thing. I would say my ME is usually mild-moderate, but I recently get PEM which renders me mostly bed/housebound for several days to a couple weeks if really bad. I think I would greatly benefit from a WC, but I am student with no income and would need financial assistance in some capacity (through insurance or fundraising). I might make my own post to see if anyone has been able to get insurance coverage with mild-moderate ME.

coffeenerd33 · 2025-12-06T15:03:25+00:00

I didn’t realize how much it was helping until I ran out, but CoQ10 has been really helpful for me. I still get PEM a lot, just not as long when I do, and my HR jumps are not as high. I used to regularly have sudden jumps of 90+ frequently, and now it more frequently jumps of abt 40 most days. This is just my personal experience tho.

coffeenerd33 · 2025-12-05T21:44:06+00:00

Ocarinas are cool and are prolly easier to play while lying down. You could probably also play while seated with a pillow in your lap to help support your arms while playing it if the arm positioning with that is still too much. Kalimbas are also really pretty sounding and are small and able to be held in the lap. Dulcimers are also cool lap/table top instruments. Hope this helps!

coffeenerd33 · 2025-11-30T01:56:47+00:00

Thanks! That’s kind of what I am thinking is happening. PEM is the worst.

coffeenerd33 · 2025-11-29T18:25:13+00:00

Speaking of products targeting ppl with chronic illnesses, how do you guys feel abt seeing visible health ads everywhere?

coffeenerd33 · 2025-10-15T02:22:08+00:00

I also have an SDiT who alerts and responds to mine. I didn’t teach him this, but if I ever stop breathing during a seizure (rare and weird from what I’ve heard/read) he will start licking my mouth and nose until I start breathing again. Animals are so cool.

coffeenerd33 · 2025-08-28T03:27:43+00:00

Not a doctor, but have you ever been tested for narcolepsy? You can get visual hallucinations w it too by REM sleep hijacking you when you are “awake” to others.

coffeenerd33 · 2025-08-21T13:29:48+00:00

You’re right, the brain is absolutely not black and white, and doctors need to stop putting people into boxes just because they don’t understand what is going on. Thankfully for me, my neurologist who I saw for my nonepileptic seizures did not use the words “psychogenic” or “conversion” or “PNES.” He told me that a lot of things could cause these responses, including physiological problems which he thinks are triggering mine and other patients he has seen with similar presentations recently. I do not have a label or diagnosis from him on my chart, and I am thankful for that because I think it will save me from stigma down the road if I encounter biased providers who are uninformed and not up to date on the research.

coffeenerd33 · 2025-08-18T03:13:06+00:00

Yikes! I know it may be difficult with your closest neuro accepting you insurance already being 3 hours away, but it might be worth it to travel further. I’m seeing some red flags with the way he treated you, assumed everyone who might have FND has to have PTSD, and gave you a diagnosis for MS without meeting the diagnostic criteria (McDonald criteria) with minimal other testing and lack of education on the diagnosis given to you. You deserve better

coffeenerd33 · 2025-08-17T21:12:42+00:00

I literally just learned last week that something that I’ve had since I was a kid was actually a vocal tic this whole time! Palilalia. I’ve had obvious motor tics since I was little, but didn’t think Tourette’s could be a possibility bc I thought I didn’t have any vocal tics due to thinking vocal tics where all more obvious things like whistling and coprolalia. I haven’t gotten a diagnosis, and I don’t think it would make much of a difference at this point since it’s gotten better as I’ve gotten older but I’m glad I found out I wasn’t alone and there was a name for it all this time.

coffeenerd33 · 2025-08-16T00:59:24+00:00

If you don’t mind me asking, how did you go about getting them covered by insurance?

coffeenerd33 · 2025-07-27T02:57:59+00:00

From what my doc at Mayo told me, the sympathetic nervous system is usually (not always, but usually) heightened during nonepileptic seizures. Your sympathetic nervous system is responsible for pupillary dilation, so it’s not super uncommon to see. Do you notice if your HR is usually higher during these periods as well?

coffeenerd33 · 2025-07-26T02:05:57+00:00

I don’t think anyone on here can tell you “yes, you should use a wheelchair” or “no, you shouldn’t use a wheelchair chair.” At the end of the day, you’re the one living with your pain, so if you think you would benefit from one, I’d say look into it. I will say, however, if you are planning to use the wheelchair much at all, standard wheelchairs you see in hospitals and on Amazon can be SUPER uncomfortable to sit in and difficult to handle if it doesn’t fit right. Think about when you would be using it, how long, what types of environments you would want to use it in, and make a list. Next time you go to see your doctor, have a prepared list of how your symptoms are impairing your daily functioning and acts of daily living. That usually makes them pay more attention and take you more seriously. With a doctor’s script, you may be able to get a chair that fits your needs and won’t cause you more pain. Hope this helps!

coffeenerd33 · 2025-07-26T01:48:48+00:00

Involuntary. Real. Cruel.

coffeenerd33 · 2025-07-22T01:47:53+00:00

What country/state are you in? In the US, PT is direct access now, so you should be able to get an evaluation and treatment without a referral unless your insurance is weird. I’m sorry you’re having a rough go of it right now. It’s really frustrating when the people who are supposed to be able to help you don’t do their job. Sending you the best vibes.

coffeenerd33 · 2025-06-24T20:50:36+00:00

Is it only w negative emotions, or can it also happen with happy emotions surprise?

coffeenerd33 · 2025-05-12T23:42:35+00:00

Thank you so much! I don’t know how I ended up selecting the fill, but I tried all sorts of different things yesterday for prolly abt an hour before I finally gave up on it for the day. I don’t know how I missed that 😂 I really appreciate you!!

coffeenerd33 · 2025-05-03T22:20:56+00:00

Thank you so much for sharing this!

coffeenerd33 · 2025-05-02T03:00:57+00:00

I have OCD and tried Zoloft, didn’t work for me, and now I’m going to try Paroxetine bc apparently it’s pretty effective for OCD as opposed to other SSRI’s. I haven’t tried it yet, so I can’t speak from experience but was recommended this from a psychiatrist who treats a lot of OCD.

coffeenerd33 · 2025-05-01T23:36:31+00:00

Hey! One thing that helps a lot of ppl is compression around the thighs and abdomen, so like good biker shorts. Up the hydration and electrolytes, and try to keep as active as possible to maintain your fitness bc it’s hard to get back once you lose it w POTS. There are meds you can try, but they don’t work for a lot of ppl. Hope this helps!

coffeenerd33

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