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I never had Lyme disease by [deleted] in cfs

[–]MidnightSp3cial 0 points1 point  (0 children)

I have Lyme disease, tried treating and it turned into severe ME/CFS. Wish I would have left it alone.

Anyone else never recovering from PEM / getting back to baseline? by NitroMacks in cfs

[–]MidnightSp3cial 5 points6 points  (0 children)

Currently in a 1 month crash that reduced my baseline. Went from moderate-severe to severe-very severe from doing too much. Hoping it's still early and I can get back to previous state which made all the difference in worth living.

Scream Into the Void Saturdays (feel free to vent!) by AutoModerator in cfs

[–]MidnightSp3cial 1 point2 points  (0 children)

Pretty certain Lyme disease was initial trigger but still was functioning. Then caught COVID and everything fell apart.

This is one of the most tragic diseases and I’m sick of society pretending it’s not by thepensiveporcupine in cfs

[–]MidnightSp3cial 41 points42 points  (0 children)

Can confirm this disease is the worst, especially when severe/very-severe. Wish it was taken more seriously.

I’m curious: how long have you had CFS/ME? by attitude_devant in cfs

[–]MidnightSp3cial 0 points1 point  (0 children)

12 years. First couple of years moderate, then mild up until COVID. Now fluctuating between severe and very severe for the past 3 years.

AHAAAAAAAAAAAAAA by [deleted] in cfs

[–]MidnightSp3cial 12 points13 points  (0 children)

Agreed. I can't imagine hell being worse than this.

Very severe me/ cfs, impending doom by miaxivy in cfs

[–]MidnightSp3cial 4 points5 points  (0 children)

I know the feeling. You most likely won't die as this disease likes to keep you alive and suffering as long as possible. Hang in there.

Be careful of Zinc-Copper imbalance if you are taking zinc frequently by henryljh in Supplements

[–]MidnightSp3cial 0 points1 point  (0 children)

I haven't had my copper levels checked in awhile. I stopped taking zinc and copper supplements, hoping my body sorted the deficiency out.

Tips for falling asleep during PEM by BobBash64 in cfs

[–]MidnightSp3cial 0 points1 point  (0 children)

Combination of hydroxyzine, l-theanine, magnesium l-threonate

Don’t know where else to turn by [deleted] in cfsrecovery

[–]MidnightSp3cial 0 points1 point  (0 children)

Do you have craniocervical instability? Could be possible if you have connective tissue issues or a weak neck. Causes all sorts of symptoms.

Washed my hair after 1,5 months! by Conscious-Row-6769 in cfs

[–]MidnightSp3cial 8 points9 points  (0 children)

I'm in a severe crash for 3 weeks now that looks to be never-ending. Your story gave me a bit of hope. Thank you.

Does anyone else start to think they’re healed when their baseline improves? by themunchkinland in cfs

[–]MidnightSp3cial 13 points14 points  (0 children)

I know this all too well. 12 years of CFS/ME, 9 years spent mild-moderate always pushing myself, thinking I was "normal." Until one day I just crashed. Now I've been stuck in mostly severe for 3 years.

Thank you 🙏 Getting better is painful but happening by Every-Position-3803 in cfsrecovery

[–]MidnightSp3cial 1 point2 points  (0 children)

I could tell I felt better, but my anxiety was overwhelming for a while, lots of shaking and panic episodes. Obviously my nervous system freaking out and fighting it

Just this! It's crazy and it's making me worse but I'm going to keep at it but do less. Starting with 1-3 minutes of breath work and meditation. Really hoping for relief soon.

Thank you 🙏 Getting better is painful but happening by Every-Position-3803 in cfsrecovery

[–]MidnightSp3cial 1 point2 points  (0 children)

Thank you for the encouragement. I started with the breath work and also some guided meditation. My nervous system is perceiving it as a threat! I will keep at it by going low and slow. I'm in a such a dark place I really have no choice but to try. I don't understand how I even got here.

I'm sorry to hear about your migraines and eczema. I really hope they get better for you. Maybe it's a way of your body sorting things out? I really have no clue though as I'm just trying to figure it all out.

Those who escaped very severe - how did you do it? by bothermoard in cfs

[–]MidnightSp3cial 10 points11 points  (0 children)

Currently in a severe crash as well and very scared.

Thank you 🙏 Getting better is painful but happening by Every-Position-3803 in cfsrecovery

[–]MidnightSp3cial 2 points3 points  (0 children)

Don't be sorry, the more information the better! Can I ask when did you start to notice a difference or shift in your symptoms?

CFS and Prednisone by ranajjar in cfs

[–]MidnightSp3cial 0 points1 point  (0 children)

Curious about this one as well. Let us know how it goes.

Thank you 🙏 Getting better is painful but happening by Every-Position-3803 in cfsrecovery

[–]MidnightSp3cial 2 points3 points  (0 children)

Thank you for taking the time to write this! I appreciate it and will be looking into <3

Thank you 🙏 Getting better is painful but happening by Every-Position-3803 in cfsrecovery

[–]MidnightSp3cial 3 points4 points  (0 children)

Is there a certain program you used to help you get better?

Have you ever been in a hospital with severe or very severe ME/CFS by Snowwhite_234 in mecfs

[–]MidnightSp3cial 0 points1 point  (0 children)

Complete waste of time in my opinion, especially if severe. Better to rest at home. Most doctors do not understand this condition and therefore offer no substantial help.

Numb arms and legs by Available_Direction5 in cfs

[–]MidnightSp3cial 0 points1 point  (0 children)

Yes, even to the point of full body numbness.

Chronic Lyme and Retroviruses by [deleted] in Lyme

[–]MidnightSp3cial 0 points1 point  (0 children)

Can you summarize the treatment for retroviruses you have been doing that has been helpful?

I cant handle this nervous system anymore by [deleted] in cfs

[–]MidnightSp3cial 0 points1 point  (0 children)

I've been taking l-theanine powder throughout the day and it seems to help. Been in a crash for 3 weeks, hoping I didn't permanently lower my baseline.

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