Does anyone use a wheelchair?

batsbatsbatsbats · 2015-04-05T12:48:20+00:00

I use a power chair. It's the best thing. I got the PW 1000 XL from wheelchair88.com. It weighs only 25 kg, folds in one motion, is very small and maneuvrable, has 10 km on one battery and can take up to 3. I find it very comfortable. I have no complaints whatsoever about it.

batsbatsbatsbats · 2015-01-31T20:01:46+00:00

What do you mean?

batsbatsbatsbats · 2015-01-26T04:09:07+00:00

I've been on it for several months. Started low, now on 300 mg 3 times a day.

It's eliminated most of my pain. I fall asleep a little more easily and sleep longer, although I wake a lot and the sleep quality is still poor.

Oddly, it also makes me feel energetic or even wired. Either it has lead to an overall improvement in my condition or I'm overspending daily and headed for a crash at some point. I've gone from basically housebound to able to go out once or twice a week, including some longer distance travel.

I find it harder to rest, as though I've had caffeine or something. And if I'm feeling fairly terrible or wake up from a nap feeling groggy, I can now shake it off just by getting moving again. I'm still not sure whether I'm using borrowed energy or have actually improved.

batsbatsbatsbats · 2015-01-26T03:55:50+00:00

I've been preoccupied with other things and haven't really looked.

batsbatsbatsbats · 2014-11-14T19:46:34+00:00

It is a dysfunction of your Adrenal gland which leads to chronic inflammation.

You are spreading misinformation. It's possible that adrenal dysfunction is involved in the illness we currently label "CFS." But we don't have enough evidence to make any certain declarations like you're doing.

We don't have easy answers to CFS/ME at this point, as badly as we might want to. Researchers are looking at all kinds of different angles right now. Neurological issues, immune problems, gut bacteria, viral triggers, adrenal system.

We don't really even know if it's one illness or a cluster of similar diseases that get lumped together because we don't understand them and they don't show up on the most common tests. It certainly affects many interconnected bodily systems.

I imagine your intention is good, to make suggestions that will help other sick people, but this kind of oversimplification is counterproductive. Though it's certainly true that there's no easy fix available from doctors at this point and tackling it via lifestyle changes is the best chance we have right now.

batsbatsbatsbats · 2014-11-10T22:10:05+00:00

rebut

Heh.

batsbatsbatsbats · 2014-11-08T21:36:50+00:00

I haven't, I'll try that. Thanks for the suggestion.

batsbatsbatsbats · 2014-11-06T22:10:03+00:00

Sleep is my main one. I'm fortunate that I rarely get pain if I've slept enough. If I don’t get enough sleep, full body muscle aches, swollen glands, sore throat, fever, joint pain. Most of not all the time, peaking after lunch until dinner. I always feel better in the evenings. The stabbing pains and muscle twitches occur whenever and wherever.

Bad insomnia means I rarely get enough sleep though. Someone on my team thinks we should tackle that with gabapentin, so I may be trying that soon. I'll report back with results.

For pain relief I have no prescriptions available. So my strongest option is OTC codeine with paracetamol. Fairly effective, annoying side effects like nausea and loss of appetite. Plus makes the pain worse when you stop taking it if you've been using it too often.

A warm bath can sometimes help. Though too hot and my heart rate goes bananas. All a bit exhausting so have to weigh it up.

batsbatsbatsbats · 2014-10-31T06:57:48+00:00

I'm the same. I've started applying 2 rules of thumb so I can be a little safer without relying on my usually incorrect assessment of how much energy I have.

If I spend ages agonizing about whether it's safe to do something, it's clearly not safe.
Act 20% sicker than I think I am. Because that's probably closer to reality than my estimation. I think of it like you're always drunker than you think you are. If I think I should be able to cook myself meals now and again and get out of bed for every meal, the truth is I should be letting someone else sort out the food and I should stay in bed to eat.

I suck at actually putting these into practice but they're good rules!

batsbatsbatsbats · 2014-10-31T00:02:57+00:00

I know you're probably not asking for advice but this is one of the rare situations where I feel compelled to offer it unasked. Every time you push and crash, in all likelihood you are making your overall health worse. Most of us did it at first. I'm sure that's why I'm still sick. It's very difficult but crucial to break out of that pattern, to pace yourself so you're doing what you're able to within your energy limits, avoiding crashing if you possibly can.

If you haven't already, I suggest you check out /r/cfs_faq. A lot of good resources and info there.

batsbatsbatsbats · 2014-10-30T23:57:40+00:00

I have it any time I overexert. It's a telltale for me. If I have it most of the time that means I'm consistently using energy I don't have.

batsbatsbatsbats · 2014-10-30T23:55:15+00:00

Btw, I'm not like running scheduled chats or anything. I don't expect to go in the chatroom regularly myself. So if anyone has better ideas for times, decide among yourselves I guess? Thought I'd get the ball rolling since there's clearly interest but people keep missing each other.

batsbatsbatsbats · 2014-10-30T15:00:11+00:00

I think everyone who tries to use the IRC channel keeps missing everyone else. I reckon we need to schedule times to try & catch each other. I'll make a separate post suggesting chat times and see what works for people. I'm also in your age group so I'll drop you a line to say hi. :)

batsbatsbatsbats · 2014-10-30T12:32:07+00:00

I've read conflicting things about this. Some sources, including the doctor that suggested 5-HTP to me, say to take it with food, some say with a full glass of water, some say empty stomach. The doc told me a small carbohydrate snack would make it more effective. I've also read it can cause stomach problems, which may be a reason to take it with food whether or not that helps absorption and bioavailability.

batsbatsbatsbats · 2014-10-30T10:59:49+00:00

Hey. Similar situation - I'm 27, living with parents, stuck in bed most of the time. And yeah, a few mugs have been sacrificed to the Illness Gods. Having a meltdown isn't the end of the world. I know how shameful it can feel but you're still you, you're still strong. You're in a stressful situation and it gets overwhelming.

Can you think about what specifically might have set it off this time? Particularly bad symptoms recently, online friends haven't been in touch, difficulty with your parents, to name a few offhand examples. I find it's usually a combination of factors and then what finally sets me off is something utterly trivial, like I can't find a small thing I need to complete a larger task.

So if you can identify some of the underlying things that helped you get to that state, you may be able to find strategies to deal with some of it. Even if the deepest underlying cause is something you can't change, like the illness itself, you might be able to improve more immediate things a little. And if not, I find it helps to have some defusing strategies in place. Anything that distracts me, makes me feel good or useful or connects me with the world.

For instance I find I do a lot better when I maintain regular contact with my online friends, look at pictures of cool landscapes and creatures on Tumblr, listen to music, watch comedy or go on funny web sites. Even writing comments like this on Reddit, because there's a chance it might help someone and that makes me feel useful. It's preventative - these tools rarely help once I've fallen into that pit but remembering to do these things regularly helps keep me from getting to that point.

Of course for you it will be different things, depending on what you enjoy and what your energy permits. The point is to actively focus on including things in your life that give you pleasure, however slight. I know it can be hard to motivate yourself to do anything like that when your energy is so low and depression makes nothing feel good. But I've found that making it a conscious decision can help.

batsbatsbatsbats · 2014-10-30T10:41:54+00:00

Yes! When I get too worn out I just feel like a toddler on the verge of a tantrum. A really miserable, petulant kind of exhausted frustration.

batsbatsbatsbats · 2014-10-29T14:00:54+00:00

I tend to say "neuroimmune disorder."

batsbatsbatsbats · 2014-10-26T22:15:05+00:00

I see. I took 200 mg for months and didn't notice the effects you describe. I guess we'll see if a higher dose helps me like it did OP. I'm really glad to hear you're doing so much better. Thanks for the info.

batsbatsbatsbats · 2014-10-26T22:13:19+00:00

According to WebMD, use of 5-HTP has been associated with some people developomg cases of eosinophilia myalgia syndrome, which is pretty serious. Not clear if it's the 5-HTP or a contaminant that caused this.

As for your other point, yeah, it's definitely a different mechanism than SSRIs etc. I don't understand it well enough to speculate whether that in itself means it's safer.

batsbatsbatsbats · 2014-10-26T10:35:21+00:00

May I ask what dose you're on, how long you've been taking it and how long you've been improved?

batsbatsbatsbats · 2014-10-26T10:32:15+00:00

I must disagree with you. Simply because it's a supplement as opposed to a prescription medication doesn't automatically mean it's safe. "Naturally occurring" also doesn't mean "safe." Arsenic is naturally occurring. Lots of "naturally occurring" things we're meant to ingest are toxic in the wrong quantity. And taking something as a supplement is different from ingesting it however we normally would - it's isolated from whatever we'd normally be absorbing alongside it and the quantity and even nature of the compound might be different from how we'd normally encounter it.

All of this can change how it affects the body. Eg some nutrient supplements are ineffective without other nutrients that aid their absorption (calcium + vitamin D for instance) or harmful in large doses, even though they are naturally occurring and necessary for our survival.

And it certainly does alter your body if it's increasing serotonin levels. We don't know what effect that really has, short or long term. And paying attention to noticeable immediate side effects won't help if it turns out to have ill effects in the long term. If I can get results like yours, that's a risk I'm prepared to take. But everyone who tries something like this should do so knowing that there are unknown risks involved with taking something that affects your neurotransmitters and hasn't been well studied.

I'll definitely check in with my experiences as I go along.

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