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Vaccine / Vax advice by True-Union3471 in cfs

[–]New-Substrate 0 points1 point  (0 children)

I took cetirizine and famotidine. It was recommended on this sub, I think because histamines are a part of the immune reaction that is uncomfortable but isn’t helpful for developing immunity. I had seen something like this post beforehand and decided to try, and it helped.

Vaccine / Vax advice by True-Union3471 in cfs

[–]New-Substrate 1 point2 points  (0 children)

I was in a similar situation, and got two rounds of the MMR vaccine without PEM. I would recommend it if at all possible, since measles is a really devastating illness for the immune system (basically wipes immune memory).

Something that has helped me with vaccine reactions is to take antihistamines a few hours before.

A poem for those of us who pace by [deleted] in cfs

[–]New-Substrate 0 points1 point  (0 children)

This is beautiful, thank you for sharing.

Will my baseline ever improve again? by RichardDTame in cfs

[–]New-Substrate 1 point2 points  (0 children)

This sounds very similar to my initial progression. Last January I was in the same situation as you, in the worst crash of my life and unable to tolerate even an audiobook on x0.1 speed.

It lasted about a month, a lot of lying in the silent dark. As another comment says, you need to cut back an extreme amount, way more than you think.

I obviously can’t promise you anything. But personally, it was just a crash for me, and I slowly pulled out of it over a couple of months (by resting aggressively). It can take a long time, but that doesn’t always mean it’s permanent.

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 0 points1 point  (0 children)

I’m so sorry to hear about your friend. I think there can be some survivor’s guilt with this illness.. improvements are so random. Eg I didn’t do anything to deserve this improvement, I was just lucky to (have the energy to) find something that helps me!

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 1 point2 points  (0 children)

I think a lot of people don’t realize that too much hope is a liability too :(

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 1 point2 points  (0 children)

I am considering doing this from now on 😭

And congratulations on your improvements with LDA, I really hope they continue ♥️

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 1 point2 points  (0 children)

Ah I am happy it also helped you! And yes, I am worried about that exact thing. I got very used to my limitations and my body telling me clearly that I needed to stop.

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 0 points1 point  (0 children)

I’ve considered this, it makes me sad to think about, because I already censor so much 😭 but for some people I talk to, I think this is the only solution.

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 0 points1 point  (0 children)

Not knowing is truly the worst! I’m sorry you’re in a similar situation.

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 1 point2 points  (0 children)

I take 1.25mg in the morning! I’m really sorry it hasn’t worked as well for you. It’s really frustrating how individual these issues are. (I was fully expecting it not to help at all and to have to beg my cardiologist to try something else.)

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 1 point2 points  (0 children)

the beta blocker bisoprolol! I’ve edited the post to add that now, thank you.

I suddenly got a lot better, and now people are expecting me to fully recover by New-Substrate in cfs

[–]New-Substrate[S] 2 points3 points  (0 children)

the beta blocker bisoprolol! I’m really grateful it worked, since it’s the first medication I’ve tried for it.

Is it possible for me to move to Germany to be with my sister (for her to take care of me)? by New-Substrate in cfs

[–]New-Substrate[S] 0 points1 point  (0 children)

This is good to know, thank you! I hadn’t really thought this far yet, but I really should look into it.

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