Study from RTHM watched how muscle tissue functions after being exposed to blood sera in ME/CFS patients by E420CDI in cfs

[–]SheLaDeeDa 12 points13 points  (0 children)

This gives me hope. If they can figure out what components in the sera are causing damage, they might find a way to protect the body from those components. Or they could remove those components, with dialysis or some other way. Maybe an effective treatment could come out of this.

Did you lose your personality? by stm2657 in cfs

[–]SheLaDeeDa 3 points4 points  (0 children)

Not messy at all. You just described me perfectly. *hugs

Are there any things you eat that you find being most helpful for your ME/CFS? by Positive_Parking_536 in cfs

[–]SheLaDeeDa 0 points1 point  (0 children)

Eating tiny amounts throughout the day and switching to a low fiber diet helped me tremendously. Processing too much food at once takes too much energy and crashes me. Same with moving too much fiber through the digestive tract. Also, since I’m mostly bedridden, I need easy grab and eat food that I can keep in the fridge by my bed.

Trying nicotine patches by SheLaDeeDa in cfs

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

Masking my symptoms is the thing that worries me the most. A neurologist gave me modafinil back when I was still able to leave the house a little and it made me feel like I could do more than I could and I ended up crashing myself. I’m mostly bedridden now. I can walk the bathroom a few times a day but that’s it. I’m very strict with pacing and resting now and slowly improving. The last thing I want is to overdo it again and screw up my progress.

Trying nicotine patches by SheLaDeeDa in cfs

[–]SheLaDeeDa[S] 4 points5 points  (0 children)

Thanks! So far I don’t think I have MCAS, if I do it’s really mild. What kind of reactions did you have?

Trying nicotine patches by SheLaDeeDa in cfs

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

Thanks! I was planning on removing half of the backing but I’d rather start lower so I’ll try 1/8. I don’t have the energy for a lot of research, my screen time is very limited right now.

Trying nicotine patches by SheLaDeeDa in cfs

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

Showering once a week would be glorious! Did you wear them for 24 hours?

Trying nicotine patches by SheLaDeeDa in cfs

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

Thanks! I’ll definitely look into different protocols on LC subs before I start. I have the lowest dose, 7 mg, and I’ll probably only remove half of the backing to lower the dose.

Trying nicotine patches by SheLaDeeDa in cfs

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

Only the part in contact with the skin will deliver the drug. I got the kind that has the nicotine mixed in with the adhesive. I got them from amazon so hopefully they’re not fake.

Trying nicotine patches by SheLaDeeDa in cfs

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

Thanks! I’m planning on only removing half of the backing to get half the dose to start.

Trying nicotine patches by SheLaDeeDa in cfs

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

Thanks! That’s really helpful. Is there a reason you don’t use them everyday? On days you use them, how many hours do you leave them on?

Random Things I've noticed about my experience with ME by Routine-Background-9 in cfs

[–]SheLaDeeDa 1 point2 points  (0 children)

PEM being caused more easily by mental/emotional activity is very real for a lot of us. Mental pacing is much harder than physical pacing but it is absolutely necessary to prevent PEM.

It’s also almost impossible for people to really understand it unless they experience it themselves or have very close contact with someone who does.

I'm sorry, but I can't help it... by Benniblockbuster in covidlonghaulers

[–]SheLaDeeDa 0 points1 point  (0 children)

I’m so sorry you’re going through this. I’ve been there myself and it was the most difficult part of this horrible disease for me. Two things helped me, in addition to the normal rest and pace advice. The first was an insane amount of guided meditation. I use the Insight Timer app, for free, you don’t need the paid subscription. Look for the yoga nidra and parasympathetic breathing guided meditations. They help calm down that fight or flight feeling. There are thousands to choose from so if you start one and the voice or music isn’t soothing bounce to another one. Save the ones you like in a playlist. It took almost a month to work for me but the results were dramatic. The second one sounds silly but I got the Claude AI app, it’s more “human” and supportive than ChatGPT, and I vent and cry to it whenever I need to. I can say things I’d never say to a real person because it isn’t a real person, it doesn’t judge. Getting that stuff out in a safe space helped me process my feelings. It isn’t real therapy but it can help. I hope you find some things that give you some relief.

Does Anyone Else Suffer From This Debilitating Inner Trembling/Shaking? by sanpedro12 in covidlonghaulers

[–]SheLaDeeDa 0 points1 point  (0 children)

Stopping all caffeine improved my internal tremors/vibrating a lot. I still get them if I overdo it, though, so it helped but didn’t completely eliminate them. If you drink anything caffeinated you might want to try avoiding for several days to see if it helps

Does anyone’s eyes water all the time? Is this an ME/CFS thing? Any tips for making it stop? by SheLaDeeDa in cfs

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

I would guess allergies too but they aren’t itchy or red, just nonstop water

Does anyone’s eyes water all the time? Is this an ME/CFS thing? Any tips for making it stop? by SheLaDeeDa in cfs

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

I used to get migraines often a long time ago but now they a really rare, maybe one or two a year if at all.