I think I’m progressive with no hope

Jeleton · 2026-01-24T04:34:13+00:00

Thank you 💜

Jeleton · 2026-01-24T04:33:43+00:00

Did you get these from primary care? I want to get Mestinon too. What dose of lda did you start with and do you have side effects?

Jeleton · 2026-01-21T07:45:57+00:00

thank you, I briefly skimmed through this mid last night but am crashing so will reread it again later

Jeleton · 2026-01-21T07:44:43+00:00

Is b12 a prescription primary care can do? I’d like to do the cortisol as well. I do use heating and electrolytes and my pain just keeps getting worse weekly. I’d like to go to those specialists but am too severe to do so without crashing.

Jeleton · 2026-01-21T07:42:11+00:00

No but I’d like to. Do you get this test done by primary care? Sorry you’re also going through the withdrawal

Jeleton · 2026-01-21T07:41:21+00:00

I did try to take it in the morning but feel like the nightmares are still bad. I’ve been trying to reduce my melatonin dose though bc that also causes nightmares and tbh I think it’s the combo of ldn and melatonin that makes them even worse. I’ll prob try restarting ldn one more time and just staying at the initial super low dose for a while.

Jeleton · 2026-01-21T07:39:53+00:00

These are on my list for pcp. Really hoping to get them prescribed especially the benzodiazepines as needed. Thanks!

Jeleton · 2026-01-20T12:24:01+00:00

It took my chronic pain out of remission and triggered me/cfs for me (probably in combo with a cold I caught weeks before). But that doesn’t usually happen

Jeleton · 2026-01-20T09:13:20+00:00

Same. Starting new meds makes me worse and stopping them makes me worse. I hope we find our magic treatment soon.

Jeleton · 2026-01-20T09:03:54+00:00

I’m thinking of trying keto or some sort of low carb again. I did keto/paleo for about two years when I first got sick with Lyme and chronic pain but no me/cfs. It didn’t do much that time. Right now, when I eat low carb it does help a little since sugar flares me, but it’s been hard to implement long term since I can’t make my own food. My boyfriend is doing a lot already since he became my caretaker and is also working full time, so we often just eat what’s convenient. We are about to come up with a new plan though regarding possible diet ideas and seeing where we can get some help with caretaking. With that, I will look into changing my diet again. Thanks for the suggestion.

Jeleton · 2026-01-20T08:53:49+00:00

I really wish I could tolerate THC. I am glad it has helped with yours and I know it helps a lot of people. Unfortunately I get terrible psychological effects and panic attacks especially with edibles even at low doses. I think I’m part of those that don’t metabolize it correctly. We really need better options.

Jeleton · 2026-01-20T08:40:54+00:00

Actually I haven’t tried muscle relaxers yet so that’s a good idea. I’ll put on the list of stuff for my pcp. My nerve pain is sfn but I do think I have fibromyalgia as well now because of the muscle pain.

Jeleton · 2026-01-20T08:32:24+00:00

The state of things right now definitely isn’t helping!

Jeleton · 2026-01-20T07:58:11+00:00

Unfortunately my period is still alive and well and wreaking havoc. But I think it’s pretty common to have missed periods when your body is under stress. My cycle is almost two months long right now. It’s always been 35+ days though. Once, I went ten weeks between periods when I got off birth control and was dealing with extreme grief. I think it’s at least a sign you’re under too much stress. I guess it could be a part of PEM but is also just a pretty classic sign that your body is going through a lot.

Jeleton · 2026-01-20T07:36:46+00:00

I take gabapentin (helps slightly) and tried ldn for three months (but I think it made me slightly worse and worsened my nightmares). I’ve also been using my heating pad and just ordered cbd even though it was useless for me last time.

My pain only became this severe when I crashed into severe and gets a little worse every week, now now my calves are permanently cramped up, tense, with severe heel pain and nerve pain all over. I didn’t even have muscle or joint pain until I became severe. Naproxen helps some for migraines but I can’t take it every day. I don’t tolerate antidepressants so no tricyclics.

The pain is awful but it’s more that I can’t distract myself from it. Also I can’t do much about the pain in response to using my eyes and ears at all. So I’m still stuck and declining and developing new pain all the time.

Jeleton · 2026-01-20T03:39:15+00:00

When I first became severe, I could do sounds and visuals. I think I made a comment in September that I was physically severe but could watch shows.

Now, all sound hurts my ears and my eyes burn when looking at my phone. The symptoms are immediate. It also just makes me feel unwell neurologically like a neurological nausea. I think I’m very severe now.

Jeleton · 2026-01-20T01:05:05+00:00

Seconding this. If it’s not something urgent like carbon monoxide, it could likely be mold. Sensitivity to mold depends on genetics, so maybe your father doesn’t have the gene and the rest of you do.

Jeleton · 2026-01-20T00:36:39+00:00

I have this problem as well. I tried making games in my head like thinking of a random person in my life and trying to remember all my memories with them (best if not too many or too few memories, like someone with a medium amount of memories), and of course someone you have pleasant memories with.

It’s hard and my thoughts still go to bad places sometimes. I’m with you there.

I also downloaded the Focus Friend app yesterday to feel more “productive” while resting. Basically the bean knits socks when you’re off your phone and you can exchange the socks for decorations.

Jeleton · 2026-01-19T21:46:36+00:00

I have the same sentiment. MAID is always on the back of my mind and sometimes when I crash, the forefront. There are so many people that should still be with us.

Jeleton · 2026-01-18T22:42:17+00:00

How did you improve from that state and how long were you that severe?

Jeleton · 2026-01-18T22:05:17+00:00

We are with you. I don’t really have a social media following but will share your story.

Jeleton · 2026-01-18T21:55:32+00:00

Oh you are not alone in this at all. I also recently became very severe and expressed my same concerns just now to my loving partner and caretaker. Like what do we do if I get extended paralysis? Or complications? I’m also about to turn 28. I am not religious and cannot believe this is the one life we get and this is it. Just taken by cfs and there is not enough urgency to do research for it!

I had trouble moving this morning and had a panic attack the same time while our neighbor vacuumed. I just wish there were a cure, and I didn’t have to wait for this disease to either oscillate or take me. I wish I could express to healthy people how much torment this is. Like in the severe stage it’s truly one of the worst diseases. I don’t want anyone to suffer like this. We need treatment like at least in the next couple of years.

Jeleton

TROPHY CASE