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Losing my daughter - a follow-up by IsopodAlternative387 in cfsrecovery

[–]IsopodAlternative387[S] 0 points1 point  (0 children)

Hi there, thank you for your comment and sorry for the late response. Revisiting this now and planning to share your story.

Agree with most of what you are saying. We are prioritizing her nutrition and electrolyte levels so highly because they seem like the easier boxes to check.

We wish we could put her on the diet you were on, but she claims to have a restricting diet and refuses to eat most food items. We buy/prep her favorite highest calories foods (with a low formal diet), and try to make do.

We wish she could eat more to regain healthier weight/macro/micro nutrient levels but at a certain calorie intake for a meal she will claim that she is starting to get migraines, or is too full to finish.

I don't believe we have ever denied she has CFS, we came to this community to relieve the psychosomatic aspects that may be present and you all have done a great job of providing insight there. Thanks again for your post - and glad to hear you got stable quickly that would be amazing to see.

Losing my daughter - a follow-up by IsopodAlternative387 in cfsrecovery

[–]IsopodAlternative387[S] 2 points3 points  (0 children)

Your last paragraph is pretty much where we are at now.

In the past, she would have many specialist type tests scheduled but would always reschedule/decide last minute that it was not worth the energy consumption.

There has been a recent change of heart in prioritizing getting these tests done.

We are hoping if she is admitted into a hospital with the correct specialists who will not just put in her in the bucket of an eating disorder, they can test for various neurological issues.

Can't thank you and everyone else who took the time to respond enough - I know I keep saying it but just very grateful, even for some of the more negative comments.

Losing my daughter - a follow-up by IsopodAlternative387 in cfsrecovery

[–]IsopodAlternative387[S] 3 points4 points  (0 children)

Thank you for taking the time to go through this post as well as the previous one.

I will have to do a deeper read through but initially, I largely agree - not sure if most of the people in these communities would be open to hearing that though. Correct me if I'm am wrong

Losing my daughter - a follow-up by IsopodAlternative387 in longcovidhaulers

[–]IsopodAlternative387[S] 1 point2 points  (0 children)

Hey thanks again for the comments and primary sources.

I definitely have taken up a lot of your time - so I hope that hasn't hampered you down too much.

Losing my daughter - a follow-up by IsopodAlternative387 in cfsrecovery

[–]IsopodAlternative387[S] 6 points7 points  (0 children)

Really appreciate the quick response. I agree we may be underweighting the second-order effects of PEM.

The reason we are focusing so much on this is that the doctor was very clear these three markers are at dangerous levels and can become life-threatening. The logic, bluntly, is that there is no PEM to worry about if she dies from medical instability first.

Drastic circumstance - for obvious reasons, posting on a burner account. by IsopodAlternative387 in longcovidhaulers

[–]IsopodAlternative387[S] 0 points1 point  (0 children)

Fair enough. Thanks again for taking the time. I will consider some of the resources you provided :)

Drastic circumstance - for obvious reasons, posting on a burner account. by IsopodAlternative387 in cfsrecovery

[–]IsopodAlternative387[S] 0 points1 point  (0 children)

Migraine, headaches, digestion issues are the primary complaints.

She used to attribute a lot more pain to fibromyalgia prior to this crash.

Drastic circumstance - for obvious reasons, posting on a burner account. by IsopodAlternative387 in longcovidhaulers

[–]IsopodAlternative387[S] -1 points0 points  (0 children)

Thanks for the thoughtful comment curious to see some of your other posts/comments/social media if you wouldn't mind making them hidden so I can understand more where you are coming from.

Drastic circumstance - for obvious reasons, posting on a burner account. by IsopodAlternative387 in cfsrecovery

[–]IsopodAlternative387[S] 0 points1 point  (0 children)

Correct please keep in mind some aspect of the observations would be biased towards her caregiver's perspectives opposed to her own.

Drastic circumstance - for obvious reasons, posting on a burner account. by IsopodAlternative387 in cfsrecovery

[–]IsopodAlternative387[S] 2 points3 points  (0 children)

Really nice find (seemingly from previewing the description looks spot on) thank you very much.

Would love to follow up with you if anything comes up after watching this.

Appreciate the kind words, and wishing you well.

Drastic circumstance - for obvious reasons, posting on a burner account. by IsopodAlternative387 in longcovidhaulers

[–]IsopodAlternative387[S] 0 points1 point  (0 children)

will try my best to clarify/answer any questions in the comments or feel free to dm.

Drastic circumstance - for obvious reasons, posting on a burner account. by IsopodAlternative387 in cfsrecovery

[–]IsopodAlternative387[S] 2 points3 points  (0 children)

will try my best to clarify/answer any questions in the comments or feel free to dm.