[RD] Ask a Person with ME/CFS

I'd say "admire" is the right word.
 
Cannabis is legal in Canada, though of course the legal variety is regulated. Some businesses aren't doing as well as they thought they would, so they've closed down.

The issue with the smoking of it is a problem for me. I'm so allergic to smoke of any kind that it's a problem in the summer when both my neighbor and I have our windows open (they have to be open in summer or it gets too hot and stuffy to breathe in here; no air conditioning). The stench and smoke makes me sick. Thanks, Justin (that was the reason I never considered voting Liberal in 2015 - Trudeau was hell-bent on legalizing something that to me is noxious and that I wouldn't be legally able to ask the building manager to deal with if my neighbors infringed on my oxygen with their activities).

The policy of the company that owns the building where I live is that consumption is allowed inside the suites and on the balconies. Growing is not allowed (though the government allows 4 plants to be grown for personal use).
 
Cannabis is legal in Canada, though of course the legal variety is regulated. Some businesses aren't doing as well as they thought they would, so they've closed down.
Here in Nova Scotia, only the NSLC can sell cannabis. However, since the native reserves are federally regulated, it's a bit of a loophole there. Lots of cannabis shops in sheds and sometimes the RCMP raids them but then it never actually goes to court so they just open back up under a different name a bit later. Judging from what I've heard online, people prefer the smaller grey-legal shops because the NSLC stuff isn't very good for the price.
 
Do you find any foods can trigger ME/CFS symptoms? (I'm not sure whether to call it PEM in this context, unless eating itself is 'exertion.')
 
I've heard that as well about cannabis, but the risk of the grey-area shops are that some may include the dangerous stuff that's out on the street.

Drugs are so prevalent here that the public library downtown has sharps containers in the bathrooms so addicts can dispose of needles safely.

Naturally they're not the kind that's useful for someone like me, who might be spending the day at the library and have to take insulin (short and round doesn't fit long and narrow, so I have to carry my own makeshift sharps container with me when I leave the apartment). One time I'd chosen the most out of the way bathroom and figured it would be unlikely that anyone would walk in, but sure enough a librarian did. She looked at the needle pen, then at me, and I told her, "I'm diabetic, and this is insulin. I'm not doing street drugs."

She looked relieved and told me that was okay. Well, it's okay anyway, being a medical necessity.
 
Do you find any foods can trigger ME/CFS symptoms? (I'm not sure whether to call it PEM in this context, unless eating itself is 'exertion.')
Food sensitivities and intolerances happen for most, as well as overall gastrointestinal issues.

I get pretty bad histamine reactions and cannot have a high-histamine diet. Histamine is a signal for the brain to know what to do with digestion, and any kind of corruption or problem in that mechanism can lead to significant issues (and is in fact what happened to me 2.5 years ago). If I want to have tuna now, I have to seriously assess if it will ruin me for the next couple weeks or not. (There once was a time when I ate tuna almost every day, so this was a huge loss.)

As time has gone by, I've been able to eat fewer and fewer vegetables. All leafy greens are out unless I've had a particularly good few weeks and I eat only a little. Otherwise, it ruins my system. I have fairly low tolerance for tomatoes now. Since getting my gallbladder out, I have higher tolerance for tomato sauce, but it's still not something I can partake in every day. Most beans are out, but occasionally black beans are okay. (This usually triggers the fiber bros to come out, so I should say: fiber supplementation has no effect.)

Occasionally, I go through dairy intolerances. There will be long stretches every year where I can have no ice cream, no milk, no yogurt. A lot of cheese is pretty low in lactose, but even then I can't do the usual "extra cheese" route.

I find meat the easiest to digest. My diet relies heavily on chicken and whatever the safest vegetable is at that time (lately I have been rotating between broccoli, Brussels sprouts, and green/yellow string beans). Starches like potatoes and rice are hit or miss and I usually don't bother with them unless I'm eating out.

I get bad intestinal spasms and I have a very sensitive gastrocolic reflex (basically, I have to go to the washroom because I am eating). I've found liquid Pepto-Bismol the best and easiest way to manage these symptoms, which lets me avoid needing a prescription.
 

Histamine-rich foods are:

  • alcohol and other fermented beverages
  • fermented foods and dairy products, such as yogurt and sauerkraut
  • dried fruits
  • avocados
  • eggplant
  • spinach
  • processed or smoked meats
  • shellfish
  • aged cheese

There are also a number of foods that trigger histamine release in the body, such as:
  • alcohol
  • bananas
  • tomatoes
  • wheat germ
  • beans
  • papaya
  • chocolate
  • citrus fruits
  • nuts, specifically walnuts, cashews and peanuts
  • food dyes and other additives

Oh that sounds annoying
 
Was the onset a gradual one, or sudden?

How long did it take to realize "this probably isn't going to get better" and seek medical attention?
 
Was the onset a gradual one, or sudden?

How long did it take to realize "this probably isn't going to get better" and seek medical attention?
Gradual onset. I had the "flu," flu never went away. It progressed from there.

I didn't get better after about two weeks, and it took another month and a half after that before my father was willing to take me to the hospital. There, the doctor simply shrugged his shoulders and said it might be a virus that works itself out after three months, and come back then if it's not gone. My father was, shall we say, not a believer, and wouldn't take me back even if I paid him (like I did the first time).

I was just barely staying afloat. All manual labour was assigned to me in my household, and it was winter. Where I lived, you'd have to shovel after school, in the middle of the night, and in the morning. School was almost intolerable, especially since I was sat next to the heater and I was developing pretty bad heat intolerance. In January, I collapsed and was stuck in bed for three days before my dad was willing to take me to the hospital again. They kept me for a while, came back with a shrug of their shoulders again. After that point, my father decided that I was simply trying to find a way to resist his control and told me to stop faking or else.

I lost my job shortly after, which means my father lost his extra source of income for personal goodies. I started skipping all my classes and just sitting in the woods behind my school instead. Around March 2010 or so he informed me he'd kick me out on my 16th birthday. Luckily for me, he died a week before then. The ironic thing is that everybody refused to take care of him in his final days... except me. Since he portrayed himself as the living avatar of God (oh yeah, I grew up in a cult; I guess that could be a different thread), they saw no need to take care of him; God would just make him better. I had no such delusions and I took care of him up until he said "Okay, I guess maybe a hospital would be cool." It was too late by then and he died on the way there.

I dropped out of school after that and just wasted away for a few years before escaping to the West Coast. I only got diagnosed about seven months after moving here.
 
CoQ10 and CBD.

I also take additional vitamin C, calcium, and B12. I can't say I notice a tangible difference while taking them.

In the early days I had some benefit from rhodiola rosea, but I can't tolerate it anymore. I had some benefit from taurine but I stopped taking it when I became bedbound and never restarted.

There are other supplements I would like to try but it is simply too cost prohibitive. The CBD alone is over $100/mo.

I also take a lot of vitamin D but my body's ability to process/synthesize it is shot so this is mostly me pretending I'm doing something useful and lamenting that I can't just get a bolus IV of it once or twice a year. I'm pretty much permanently under 12 nmol/l, and the only time that was different was after getting an IV in the hospital.
Try some D-Ribose too.

I think adding THC oil as well as CBD might have helped. Either that or the current CBD suits me better.
 
Where did you get your excellent movie taste?
No i just wanted to add something positive..wasn't aware of your condition.

Do you sometimes feel moments of euphoria when something goes well?
When i was depressed that happened occasionally..i know it's not the same and sorry if a dumb question.
I got out to the chemist yesterday. Felt so good just to get out

The hit on that is that even fun and feel good things burn energy. Everything burns energy so it's all going to impact and possibly end up more screwed in more pain.

I've been depressed so I know which way around of the physical/Mental cycle it's on.
 
Was the onset a gradual one, or sudden?

How long did it take to realize "this probably isn't going to get better" and seek medical attention?
I got standard winter flu here that I grew up with. Took 2 weeks off from my one man yard work business.
Then still couldn't get the work trailer unlocked from security tree. Fell over passed out in front yard. Knew I was screwed.
Spent first 6 months semi conscious.

Up to 6 months the dx is 'post viral fatigue '. Then it's 'chronic '.
DX of ME notoriously difficult since there's no positive test. ( cos no one been bothered to do any bloody research).

ME ppl can't go campaigning cos we're stuck at home possibly in bed.
 
Cannabis is legal in Canada, though of course the legal variety is regulated. Some businesses aren't doing as well as they thought they would, so they've closed down.

The issue with the smoking of it is a problem for me. I'm so allergic to smoke of any kind that it's a problem in the summer when both my neighbor and I have our windows open (they have to be open in summer or it gets too hot and stuffy to breathe in here; no air conditioning). The stench and smoke makes me sick. Thanks, Justin (that was the reason I never considered voting Liberal in 2015 - Trudeau was hell-bent on legalizing something that to me is noxious and that I wouldn't be legally able to ask the building manager to deal with if my neighbors infringed on my oxygen with their activities).

The policy of the company that owns the building where I live is that consumption is allowed inside the suites and on the balconies. Growing is not allowed (though the government allows 4 plants to be grown for personal use).
Smoking it just makes me stoned. Doesn't help anything.

I take refined liquid. No stone.
 
Do you find any foods can trigger ME/CFS symptoms? (I'm not sure whether to call it PEM in this context, unless eating itself is 'exertion.')
Digestion and every bodily function is effected.

Gluten, lactose, nightshade intolerance (tomato , potato etc). Processed 'foods ' have too many additives.
Gut pain from just eating cos the body is wrecked on all fronts.

Found I seriously crashed (passed out) a couple of hours after coffee so that's out as a quick cheat.
 
E.man and Syn, do you guys keep regular schedules? Do the schedules shift with changes to wellbeing? Are you awake more at night when times are rougher and find yourself shifting back to day when times are better?
 
I dropped out of school after that and just wasted away for a few years before escaping to the West Coast.
Was ME/CFS part of the reason you moved?
 
Was ME/CFS part of the reason you moved?
No. Escaping family. I was labelled a domestic refugee.

It was coincidental that Vancouver had/has Canada's first and only complex chronic disease program. I moved here because I had a place to stay in Seattle at first.
 
E.man and Syn, do you guys keep regular schedules? Do the schedules shift with changes to wellbeing? Are you awake more at night when times are rougher and find yourself shifting back to day when times are better?
I do because it made it easier to go to appointments and it was a constant thing foisted upon me by doctors. I go to sleep between 11:30 PM and 1:30 AM, and wake up between 8:30 AM and 10:30 AM. I lay down whenever I feel too badly to remain upright. I rarely actually sleep/nap during those moments and I am mostly just a corpse in bed for 2-3 hours.
 
E.man and Syn, do you guys keep regular schedules? Do the schedules shift with changes to wellbeing? Are you awake more at night when times are rougher and find yourself shifting back to day when times are better?
Yes, I've made a loose schedule based on how well I might be. I'm mostly on a recliner in the day but if I'm about to collapse I'm off to bed. Lay down on bed in later afternoon too. Everything depends on how I am.

When I'm hurt more then I'm more awake at night from it. I might take some sleeping meds but not too much or it will knock me out the next day too.
 
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