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I might be getting better....?

I don't know if I'm tempting Providence, or what, but I might be very very gradually getting a little better.
It's four months in.
I was never 100% sure what was wrong in the first place but it started suddenly in Spring, just after the snow, like an entero-headache-heart issue kind of thing with dreadful exhaustion and flu-like feelings.
Tests I had done were all "normal".
I had always been a fit and healthy strong person with NO health issues.

There were the odd days at first when I would -for no apparent reason -feel completely normal and "myself" again! Then the next day right back to the original symptoms which were:
shakiness, trembling, palpitations, weakness, nausea, head/eye pain, a feeling like being divorced from my Soul (hard to describe that one!), loss of appetite, sadness, joint pain lower back, sudden bad reactions to caffeine and alcohol (random and not constant), and incredible fatigue. So many days all I could do was lie on the floor and listen to music while chewing on pieces of ginger and hoping I'd be able to eat later. I have never felt like this in my whole life and genuinely thought I was dying. No "virus" I ever had has made me feel like that.

I suspected a viral infection of a flu type strain because of the sudden onset and the fact that two days before initial symptoms I had been in close contact with someone in a shop who was coughing horribly.
(Weird, but I never got a cough, or any respiratory symptoms.)

So did my doctor. He has referred me to a neurologist (end of September) but his idea was mainly to wait and see, because he felt I had a bad flu kind of virus and would gradually get better from it.

I took herbal medicines and vitamins and tried to eat as regularly as possible -healthy food which I like. Even wondering if I had been poisoned by sodiumhexacyanoferrate in my table salt!....I changed to a pure rock salt -no additives and not even perfect white.

I doubted if I would get better to be honest. I'd get the odd day when everything felt quite normal again, then back to square one for days....maybe a week or more....then TWO days when I felt quite normal.....and so on. The days of feeling better seemed to increase each time. I was informed they are called "remissions".

Then since July 7th I felt much much better. There were nine or ten whole days when the only symptoms I felt were a weird brain fog in the morning for a couple of hours, plus I would get more tired after doing some work than I used to. I could handle those things.

Sometimes getting on with a physical job actually helped me....which is the opposite of PEM, isn't it? But there were times especially weeks ago when more exertion would cause a delayed reaction and I would get PEM after maybe three or so days . But that evolved into not feeling quite so bad if I got myself involved in doing something gently physical like cutting wood -at my own pace, and rested when I'd had enough. That didn't appear to be causing crashes.
But still I had to choose between either going for a little walk, or getting some wood ready for winter. I could never do both like before.

I was wary of trying too many concoctions and supplements. Plus they are all so very expensive and I only have my pension to spend. I thought I'd maybe try one thing at a time, see how I went on it, and then maybe try something else. I instinctively didn't feel right with pro-biotics either. Gut feeling (pun intended) was no way....don't take lactobacillus, etc. Leave it out (for me anyway.) I have no evidence of Candida either.

I increased vitamin B complex to four times the minimal dose, and felt better quickly. Then I got a much higher maximum strength vit B complex, one that turned my pee bright yellow all day long....and was fine for 5-6 days on it. Even had some interesting dreams (haven't remembered dreams for ages and miss them)
Then suddenly went down one day. Bad day. Very shaky and a bit nauseous. Couldn't eat my dinner. Crying too.

Went back to a maintenance dose of vitamin B and felt better soon. More steady.
Vitamin C at 1000-2000 mg per day seemed okay for me but caused a little acid indigestion sometimes. I had to take it after food. It didn't make me worse generally. I am now on 1000mg per day. I have no idea if these supplements are helping, hindering or what. But upping the vit. B dose really high didn't seem to do a lot of good. I enjoyed my dreams....but was suspicious it made my symptoms come back for a day. Felt like too much pressure on my system somehow....felt better when I dropped it lower.

I don't know. Everything feels quite random sometimes. I can not pin down how I feel to anything I take or do, or don't do quite honestly.

Anyway, I have managed to get a LOT of wood in for winter.
And compared to how things were -two months ago I am definitely better than I was. I can do way more physically than I was able to.

I never was 100% sure if I had full-blown CFS/ME or some kind of very nasty "post viral syndrome". Many of the things I felt had a lot in common with perhaps a mild form of CFS, as opposed to anything else I could figure out.

I have had so many ups and downs over 4 months (which I know is nothing compared to what many here have gone through) I have felt better -totally -on some days only to be disillusioned. But the general trend is much much better than it was four months ago.

Comments

I'm really happy to hear all this! I would just caution you to not overdo it, don't do too much too fast - many people have relapsed badly when they overestimated their capabilities - but I hope your improvement continues! : )
 
Reminds me more than a little of my own experiences, post viral and all that afterwards. I also saw you using the word 'clue' about protein. I'd say that is entirely expected after you've been getting all that wood in. So your muscles want the protein, not for fuel but as a reaction to the exercise. Let's say that I do sets of chinups today, but don't get enough protein throughout this day. I'll wake up thinking about meat.

"Sometimes getting on with a physical job actually helped me....which is the opposite of PEM, isn't it?"
I've had that too.

The vitamin B complex saga is interesting, too. That could be very much involved with generating serotonin.

Keep up the terrific progress!! :)
 
@Sherlock...
Yes I was craving protein all the time throughout. Sometimes protein -particularly sardines for some odd reason -was all that I could eat, even though in the first weeks I was hardly doing a thing and certainly couldn't do anything demanding physically. I didn't respond badly to fats either (weird for nausea!)
Butter was okay for me to eat and I seemed to be craving that too.

I'm interested in your idea about serotonin. I'd like to find out more about that. I didn't know vitamin B affects serotonin levels. Obviously the very high dose didn't suit me. I had to cut back.

Thank you for your encouragement. I hope you are doing better sometimes too?
 
@Mary....
Yes I am being careful. Taking things very steady and seeing how I do yet. Throughout, there have been many times I felt better for a day or a few days, only to go right back again as the thing wouldn't leave me alone. But it has slowly progressed to more days at a time when I am feeling better.

Take care Mary and thank you.
 
I hope you will notice other small improvements, as well, and that you will improve, and feel increasingly like "yourself" …. You have become a friend to us, on this site, and we hope for you to get better.
 
@Wolfcub I only know the very basics about the B vitamins and serotonin. I think that B6 might be the most relevant. Check into "serotonin storm" to see about getting shaky from too much. Sadness possibly from being too low. Actually, I think you're lucky that you have something that causes an effect, and also that you can fine tune.

Well, if you were craving sardines before your wood splitting, then maybe that was the Omega 3s? I always pay a very lot of attention to cravings, but I've never craved sardines :)

I'm doing mostly well physically, thank you. I'm striving to fix my joint problems For me. the key is relentless self observation. Plus some research, but not too much to get bogged down. Then lots of experimentation.
 
Thank you @Shoshana. My kindest thougts and best wishes for you too, as always. I hope you are not so bad at the moment? Hugs.
 
@Sherlock....it could have been Omega 3's. But I am thinking it was likely to have been vitamin D3. Especially as my illness started just after a tough winter, literally days after deep snow and a big freeze, just as Spring was coming. I started to supplement Vitamin D3 and the cravings subsided. However, at the time the vitamin D supplement made no discernible difference to how I felt. Well, nothing did actually at that point and I was trying everything I could.

I wish you well with your joint problems. That is no fun. Kind thoughts.
 

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