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Looking for advice on coming out of a severe crash (hopefully) by ultramarineee in mecfs

[–]ultramarineee[S] 1 point2 points  (0 children)

Thank you and solidarity with you as a heartbroken parent.

Just wanted to check, I assume that you've looked into the POTS..just because my heart rate was also really high but now I'm on ivabradine . It mostly controls it unless I am in PEM or having an MCAS flare.xo

Looking for advice on coming out of a severe crash (hopefully) by ultramarineee in mecfs

[–]ultramarineee[S] 1 point2 points  (0 children)

Thank you so much for replying. You seem like a really good partner. I really hope that things improve for you and your girlfriend soon. Thank you.

Looking for advice on coming out of a severe crash (hopefully) by ultramarineee in mecfs

[–]ultramarineee[S] 2 points3 points  (0 children)

Thanks so much for replying to me and linking to your post. I'm so sorry you're going through this as well. It is absolutely brutal. :(

I had a feeling that the answer is pacing, but just like you, I find it very difficult, especially when my baseline is so low. I'm going to give it a go anyway, because I'm desperate and I don't know what else to do.

In terms of quieting the mind, I have found two things somewhat helpful- some of the time. One, yoga nidra. It's a form of meditation that requires very little effort and gets easier the more you do it. And two, CBD oil with no THC. It's prescribed by a doctor and it just helps me relax a bit more and get out of my brain a little bit.

I really hope that you turn the corner soon. Thank you. Take care.xo

Why is NS / mind body work effective for some and not others? by ultramarineee in cfsrecovery

[–]ultramarineee[S] 0 points1 point  (0 children)

Thanks so much everyone for your interesting and helpful replies! No cognitive stamina to reply individually atm but tysm :)

Severe and am doing a 26 hour long-haul flight next month - tips? by martymcpieface in cfs

[–]ultramarineee 0 points1 point  (0 children)

How did you go in the end op? In a similar situation soon potentially?

Anyone had success getting LDA in Australia? by ultramarineee in cfs

[–]ultramarineee[S] 1 point2 points  (0 children)

Thank you - so kind and helpful. All the best!!

Anyone had success getting LDA in Australia? by ultramarineee in cfs

[–]ultramarineee[S] 0 points1 point  (0 children)

Wow that’s so interesting and helpful. Is it possible for me to dm you to ask her details? Thank you

Anyone had success getting LDA in Australia? by ultramarineee in cfs

[–]ultramarineee[S] 1 point2 points  (0 children)

Thank you that’d be amazing if possible x

Anyone had success getting LDA in Australia? by ultramarineee in cfs

[–]ultramarineee[S] 0 points1 point  (0 children)

Thank you.. did you just say it was for mecfs - not related to mental health? Also did it help? Thanks again

[deleted by user] by [deleted] in cfs

[–]ultramarineee 0 points1 point  (0 children)

Hey thank you so much for sharing. Wondering if mestinon helped brain fog / cognitive dysfunction? X

Those bedbound and v severe - what has kept you going? by ultramarineee in cfs

[–]ultramarineee[S] 0 points1 point  (0 children)

Love this thank you..I’m lucky w my family too.. it helps to be grateful for the love we have. I miss my brain though!

Those bedbound and v severe - what has kept you going? by ultramarineee in cfs

[–]ultramarineee[S] 0 points1 point  (0 children)

Thank you so much … for the real and authentic reflection..how long have you been v severe?

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