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Improving from moderate-severe to moderate-mild

kjetilv

kjetilv

kjetil
Messages
64
Location
Norway
As the title suggest I’ve moved from moderate-severe to moderate over the past month. Maybe even moderate-mild. I know it’s early days, I could slip right back into moderate-severe. Hopefully not though. I’m 23 years old.

I don’t know exactly why I’ve improved, but I’ll share what I’ve done over the past month below.

I’ve walked 5k steps on average over the past month, and 8k on average over the past week. I’ve kept walking because I don’t experience symptoms when walking/after walking, like I did before. Before my average was 2k. I even do some rubber band exercises every day, which I have not been able to do for 6 years (before coming down with ME/CFS).

For supplements/medication, I take these daily:
high dose thiamine
b-complex
amisulpride

I switch between these when I need a boost in energy/to lower my symptoms (my worst symptoms are fatigue/PEM and hyperacusis):
kratom
weed
oxazepam (this I take only once or twice a month)

Apart from this, I’ve spent alot of time outdoors by the sea. I get as much sun as possible. I walk in nature. I do rubber band exercises as mentioned. I eat healthy and I am at a healthy weight, 75kg, 185cm tall. A year ago (I was moderate-severe at the time) I weighed 85kg.

I wonder if my improvements are because of something I’ve done, or if it’s just random. Either way, it’s encouraging. I’ve felt so hopeless so often over these past 6 years. Now I’ve started to feel hope again. I try to rest alot still, I would assume a crash could be right around the corner if I’m not careful…
 
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H

hapl808

Senior Member
Messages
2,300
How long have you been taking amisulpride? That sounds like an amazing improvement. Out of all those things, amisulpride sounds pretty similar to Abilify which some people have reported similar gains from - although usually at very low dosages.

Resting and being careful sounds like a smart way to approach.
 
kjetilv

kjetilv

kjetil
Messages
64
Location
Norway
@hapl808 I have been taking amisulpride for almost a year, but only a very small dose up until like 3 months ago where I started to take a bigger dose twice daily.

Yes these are very good gains. Hopefully it’ll continue like this. Really want to continue what I’m doing and avoid a big crash… :p
 
Wayne

Wayne

Senior Member
Messages
4,435
Location
Ashland, Oregon
kjetilv said:
I get as much sun as possible
Click to expand...
Hi @kjetilv -- Congratulations on your improvements! I've been doing quite a lot of research on Vitamin D lately, and how raising body levels can bring many different kinds of health improvements, so I'd keep an eye on that. If you notice you're consistently better when you get more sun, that could be a clue. BTW, the body can make a LOT of Vit. D when in the sun, as much as 20,000 IUs per 30 minutes.
 
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kjetilv

kjetilv

kjetil
Messages
64
Location
Norway
Artemisia said:
Is this the first year you've done this? Like in previous years' warm seasons were you doing it as well? OR just this year?

How much thiamine and how long high dose?

Congrats! Be careful not to push too much.
Click to expand...
I did do alot of sunbathing last summer aswell, which improved symptoms.

I take the thiamine from the brand Solgar. 100mg twice a day.

Thank you! I’m going to try and be careful, but it’s very tempting to do alot of stuff now that I feel better hehe.
 
Blazer95

Blazer95

..and we built castles in the Sky.
Messages
344
Location
Germany
its crazy how much your life can turn around with the right thing just clicks.

i myself moved from moderate-severe and nearly bedbound to moderate (not moderate-mild sadly) with citalopram, an SSRI and a few new supplements. this makes me motivated to work further on this illness. my ultimate goal is the big MILD. i want to work half-day (20-30h a week) and maintain a close to normal life. I'm ready to make a few compromises, thats why I don't even aim for remission, but the more realistical alternative - plain ol improving.

sun and heat in general seems to help me aswell. Since being sick my thermo regulation is in the toilet and I am most always cold. I even use my electric heating blanket in summer lol.


again, best wishes. I always get excited when someone improves/ goes into remission.
Gives me hope aswell.
 
kjetilv

kjetilv

kjetil
Messages
64
Location
Norway
@Blazer95 - I’m so happy to hear of your improvements. Good luck with continuing to improve. Like you say, things can turn around. It is possible. We have to stay hopeful and do what feels right…

I’ve not had symptoms for 3 days. Does that mean I’m in remission?
 
kjetilv

kjetilv

kjetil
Messages
64
Location
Norway
L'engle said:
Enjoy it and just keep spending time in nature I would say.
Even if you have symptoms again you will at least know it is possible to become symptom-free, so that is a huge gain.
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Yes, this is the first time in 6 years I experience no symptoms. I’m really enjoying it. I’d say yesterday was the best day of my life. I was active and in nature all day wirh my best friend. It was lovely. I think we enjoy the good days more than the general population, because we don’t take anything for granted. We know that good health is not a given.
 
F

Florida Guy

Senior Member
Messages
217
Thats great, any case of rapid improvement is good and might give clues to the rest of us. You had it for 6 years and now remission. It may or may not have been the amisulpride but that gives a clue for others to try. You know how to pace yourself so maybe the remission will be permanent. If I could walk even 2000 steps without pem I would feel like I was mild and if 5000 or 10000 would be like a recovery.

I believe this illness is hardest on the young because you see your future path being blocked. Recovery or long term remission means life comes back. If you can work until retirement then no worries, us old coots don't have to work so its not as hard on us. Someone who has it their whole life has it really bad. If symptoms come back later, you know how to deal with them and won't push through.

There should be a collection of recovery stories. Hip has a thread like that with a list of things that caused great improvement or recovery. A list with links to the stories behind the improvement so people don't have to read a long thread to get the info would be nice. It would be a lot of work to put together the links and hip's thread is very useful so we have that until someone does a bigger one.

I'm going to order some thiamine
 
kjetilv

kjetilv

kjetil
Messages
64
Location
Norway
@Florida Guy nice that you’re going to give thiamine a try. I’d say also get a high dose b-complex and take them together.

And yeah I can see how 2k steps a day sounds alot for moderate-severe, but my ME/CFS is weird in the sense that I could walk 2k steps in a day without crashing, but getting very startled by sounds could crash me alone. I have had very severe sound sensitivity (hyperacusis), but it’s better now.
 
F

Florida Guy

Senior Member
Messages
217
Its good you are able to do walking exercise. If I were you I'd keep watching my vital signs and avoiding stress. Jumping right into a full time job right away might be too big a change, they always tell us when you are feeling better thats when you have to watch out because you are tempted to do too much

Can you tell us the dose of amisulpride you were taking and the higher dose you took recently? I imagine a lot of our members will be thinking about trying what worked for you. I may try that too but I've got a number of other things to try first

If it does go away for good, remember to stop in every few years and tell us about it to give hope. I do think that soon some help will come, a treatment at the very least if not a cure. They are starting to put research money into long covid and that will lead to whatever causes cfs. But its good to hear success stories in the meantime
 
kjetilv

kjetilv

kjetil
Messages
64
Location
Norway
@Florida Guy I agree. If I’m so lucky I maintain my gains, I will be very careful the first year atleast. I’ll keep doing what I do now the first year.

I used to take about 8mg Amisulpride daily, but a few months ago I switched to 50mg once or twice daily.

As for kratom I take about 2g twice daily. This definitely was a part of me improving.

Yes, I will stick around on the forum and tell you guys how things develop. I’ve been lurking in the forum for maybe 5 years now, but rarely participated in discussions because I’ve been too ill. I really want the best for you guys, if I can do anything to help that would mean alot to me. This illness is just really horrible. Hopefully there will be a treatment on the horizon soon. Fingers crossed.
 
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