LeechWitch


























  1. Actually me today. It might have been like 15 olives but yes. And I felt better after! Yay salt

  2. Thanks for sharing. I’ve taken up to 10000mg of sodium in one day. Average around 8000mg. It’s ridiculous. It makes a huge difference for me.

  3. I have been checked for that before I was diagnosed, I don’t have Addison’s. Furthermore I have been through the tilt table test etc to get my POTS diagnosis. My tachycardia doesn’t usually get all that high but my palpitations and fainting when I’m not medicated are miserable. Luckily my cardiologist is very up to date on POTS treatments and considers himself a local specialist in it, as his own sister has POTS he’s also very compassionate. I hope you can find someone like that to help treat you!

  4. You’re lucky indeed. Appreciate your input :)

  5. Well I wouldn’t say lucky lmfao, I do also have ME/CFS. But yeah a good doctor is a stroke of luck! Presently I think that getting the co-morbid conditions under control is about the best we can do for real treatment outside of pacing (which I am not doing a good job of), though I hope that all changes soon.

  6. TW for self harm (that’s really what this became) and probably gore?? So fair warning here because it gets NSFL: I picked at my scalp so badly while I was having flashbacks or dissociating that it was very vulnerable to infection, I got both a bacterial and then horrific fungal infection on my scalp (a kerion actually, look it up at your own risk) that caused my head and face to swell up, became a systemic infection, and caused about 1/4th of my hair to fall out (with skin) leaving massive bald spots and scarring. It was itself a traumatic experience.

  7. Yeah my doctor says it could be like a spectrum disorder, where underlying mechanisms are similar but some present more with fatigue or more with pain.

  8. This is what my rheumatologist told me and gave me a fibro diagnosis even though I have PEM and don’t have fibro-type pain. He told me he thought the fibro diagnosis might be more valid looking for employers and such… from what I know that isn’t the case either but I was too tired to argue of course.

  9. CFS doesn't have a diganostic code in America until October 1, so literally anything else in the DSM would sound more official to insurance and employers. Maybe after that you guys can re-evaluate?

  10. Veggie tales anything, space jam, strawberry and creme lifesavers, a particular laundry detergent or fabric softener smell, tai bo???? And the sensation of water in my ears… those are the dumb ones. A lot of 90s throwback stuff is impossible for me.

  11. If I don’t develop a runny nose, congestion, cough, or actual fever (like above 100 not the low grade ones I get with PEM sometimes) after a day then it was PEM. I’ve been playing this game the entire pandemic and the few times it was actually a virus it was very apparent within 24 hours. It’s also my least favorite game. My PEM viral-feeling symptoms usually abate if I just rest in bed for a day I’ll notice they ease up.

  12. That’s crazy, I also grew up in a hoarded home! I hope there will be some more research about those connections in the future

  13. Whoa also CPTSD and ADHD and grew up in a hoarded house (borderline level 4). I was sick a lot as a kid in there, probably all the rotting garbage etc didn’t help. Always wondered if it’s related to my health now, if nothing else it’s certainly a higher ACE score. Who knows. Finding a good trauma recovery program and several good therapists and modalities for treating trauma saved my life. Ironic that it wasn’t until after I started doing better mentally that I physically went to hell in a hand basket.

  14. This is my new favorite meme format and you absolutely delivered, lmao, thank you.

  15. Some interesting stuff here! I also got sick after a longish spinal surgery about 3 years ago, the second and longest of the 2 spine surgeries I’ve had. While the surgery was successful (spinal fusion), I have been sick ever since. My EBV antibodies were higher than normal for someone who had it well over a decade ago, and I also had a bad bout of roseola (HHV-6) when I was about 4, I remember it very well unfortunately. I was always convinced that the old viral infections were related to this in some way, because my symptoms often feel so much like when I had an awful case of mono in college. I always assumed it had something to do with being physically weakened by the surgery and/or the extreme physical stress of surgery reactivated one of my herpesviruses and that in turn triggered the ME/CFS. What is it about surgery that suppresses that part of the immune response btw? I’m very curious. I wish I had the energy lately to read more about it. I also used to study biology! Now I feel like such an idiot I can almost never get through scientific papers anymore, its heartbreaking.

  16. Kind of, I had an ALIF L5-S1, fixed my back, almost no issues with back pain now. But I’ve felt like shit since the surgery. Diagnosed with Fibro or ME/CFS by a rheum; but I do not fit the pain profile required for fibro and I do experience debilitating fatigue and flu like symptoms with brain fog and dysautonomia that all worsens after activity. He’s kind of an old doctor and thinks fibro and ME/CFS are the same (they aren’t). Cymbalta did absolutely nothing, except bad side effects, but I gave it an honest 6 month trial. I was separately diagnosed with Dysautonomia by a cardiologist too after fainting on a tilt table test. An immunologist and neurologist both agreed it’s ME/CFS, with comorbid Dysautonomia.

  17. Getting rid of clutter is so important. Clutter makes cleaning so much harder and is mentally draining.

  18. I’m not really sure how to approach this though, like what counts as “clutter”? Maybe it’s the ADHD or just my personality but is it clutter if you use it all the time? Is it clutter only if you left it in the wrong spot? I think maybe I need to get better at finding a home for everything if that’s the case. I used to be able to take meds for my ADHD and it made everything 10000000 times easier. Now my old meds crash me so I’ve been unmedicated for a few years and I struggle even more with cleaning. I bought that Marie Kondo book but it sits in one of my giant “to read next” piles of books. I haven’t tried her method yet I think in part because this level of sorting seems like it requires a great deal of physical and mental effort. I just don’t know.

  19. For me, clutter is things that should have a place to be stored, but aren't put away, or papers\mail that build up. Also too many things make visual clutter. For those with ADHD, it's like the clutter is talking to you or is visually distracting which drains energy. Think of a nice hotel room, surfaces are clear, the bed is made, not too many items are out. It is visually relaxing and calming.

  20. I find it to be the opposite of visually distracting actually, I just stop seeing it altogether, it literally doesn’t register lol. I’ve even heard it called “clutter blindness” in ADHD circles, but I appreciate your mentioning this because it reminded to look up some strategies specific to that. Some of them would seem paradoxical to someone without ADHD but might help me. For example I might start with the “unseen” clutter in drawers and closets where things get “put away” because they’re heinously unorganized, hence why all my stuff is out. If I “put it away” I lose it, never to be seen again. But I’m getting distracted here. Thanks for the idea.

  21. Yeah all the time, since I’m stuck in a push/crash cycle right now and this is exactly what my PEM feels like. It’s a distinctly viral feeling like feverish, sore throat, headache, swollen lymph nodes, achy body, limbs made of lead… exactly like I’m coming down with a cold/flu. If I rest well for a few days it dissipates. I think a lot of us get this flavor of PEM.

  22. Ty I was and then got into a fight with my family who says my illness is fake and to snap out of it now I feel I’m fucked I really hope bc007 is the answer cause I can’t survive like this I don’t have the right environment

  23. I’m really sorry to hear that :( it’s extremely difficult in even the most supportive environments. I wish I had more advice. What helped me calm down enough to rest a bit was just laying on the floor and focusing on feeling the weight of gravity pulling my body down toward the earth. It helped me ground myself and feel less panic so that I could get closer to allowing myself to just rest. It also distracted from some of the worse feeling physical sensations. Sounds silly but it really helped me. I try to avoid benzos since I became dependent on them under an idiot doctors supervision about a decade ago (I was able to get off them safely and I only keep a few around for extreme last resort emergencies, in retrospect this situation may have warranted their use).

  24. I take one a day hopefully doesn’t turn out bad for me but I can’t not take them

  25. As long as you aren’t ramping up the dose after gaining tolerance it’s probably fine, no worries.

  26. I had mono when I was 31, it took about six or eight months to recover from it. Then I was pretty much OK until I was 39 and I was in a car accident that destroyed my C-spine. Instantly I had chronic fatigue syndrome. I think the physical trauma brought it right back. That was 10 years ago.

  27. Similar kinda. I had a nasty case of mono at 19, took many months to recover. Was ok physically almost a decade, got in a car accident that messed up my lower back (not c-spine, and not cci) I eventually had to get a spinal fusion surgery. The surgery fixed my back but I immediately had mono symptoms again when I pushed myself at all in recovery. It only got worse. Diagnosed ME/CFS about a year later.

  28. It really does sound like you should investigate Mast Cell Activation Syndrome (MCAS).

  29. Or just get tested for allergies. Allergies can cause terrible fatigue and flulike symptoms as well. I would check for that before MCAS, it’s actually one of the first things I ruled out and my immunologist was the first person to suggest ME/CFS to me. When I took antihistamines because I thought maybe it was bad allergies, they did nothing. I really hope that’s the answer for you op!

  30. Can you explain what you mean by "series"?

  31. Maybe they’re referring to paxlovid being 2 drugs, nirmatrelvir and ritonavir. The former inhibits a viral protease, and the latter inhibits a liver enzyme that clears the first drug, which allows it to stay in your system long enough to do its job.

  32. I don’t know how it would work to do that, nirmatrelvir inhibits the 3C-like protease, which I understood to be specific to the SARS coronavirus. It doesn’t actually lower the amount of virus, rather it prevents the virus from proliferating so the amount of virus won’t raise. It does this by binding that protease and blocking its ability to cleave proteins the virus needs to replicate properly. Pretty cool. But yeah I don’t think it would do anything for those herpesviruses.

  33. I had low IgA and my immunologist didn’t seem to know what to make of it. No coeliac. Kind of odd. He was the first doctor to diagnose me with ME/CFS after I ruled out everything else, as I met all the criteria and it made sense. I wonder if it’s related too.

  34. I haven’t done much of any art in about a year and a half. I’ve been sick for 2 and a half years now. My process was always really intense, I would paint or draw for hours and hours on end (thanks adhd hyperfocus, a gift and a curse) and always struggled to take a break and come back to it with the same groove. Since I got sick I have crashed every time I have tried this, and my brain won’t cooperate with a more easygoing approach… I think I need more help doing that. Maybe an easel for bed or something. I can’t take adhd meds at this point, I crash after taking them. Another issue is being able to clean up paint and supplies when I’m done. It’s just too much. I feel like I’ve had to abandon my passion. It’s incredibly painful to think about. I think I might be too disappointed to even troubleshoot how I do it, because I’m just having so much trouble mentally getting around my current limitations. I basically don’t do art anymore :( it’s beyond heartbreaking.

  35. I bought really nice bamboo sheets and I hate them. To me. But I got hypersensitivity to me they are so rough 145 $ on prime sale yrs ago

  36. Damn I’m sorry yours sound lousy, how unfortunate! I got some MUCH cheaper (like half as much) bamboo sheets on Amazon too and I find them to be very soft and cool; it’s why I bought them because I also have trouble with allodynia and hypersensitivity when I’m crashing. I think they can be really hit or miss on the softness and general quality, especially on Amazon. I used to have terrible night sweats but only get it rarely now and these sheets definitely help and don’t feel as damp and hot when it does happen. Maybe order several sets and return any that aren’t soft enough op.

  37. Hi, I know this is an old comment, but there are topical anti-androgens such as Clascoterone. They’re pretty new I think, and aren’t supposed to be easily absorbed into the bloodstream. Might be worth a shot.

  38. Oh I might check this out! I’ll ask my derm about it. Thanks!

  39. Not sure abt thT. I have both emf sensitivity and ehs. Just learnt I might have contact dermatitis.how to heal that?

  40. Well I’m unaware of how electromagnetic fields could possibly cause localized dermatitis, it seems much more plausible that you’re allergic to nickel found in/on a lot of electronic devices. Nickel allergies are very common and cause contact dermatitis. It happened to my sister with her laptop, she just got a cover for the part of her laptop that her wrist touched and the rash stopped happening. She also can’t wear cheap nickel earrings or other jewelry. I think she used a steroid cream while it was healing or even aquaphor or something.

  41. Me. And my body lol. I have severe dermatitis when I use phone and severe flushing and heat. Started when I got two CT scans during covid

  42. So regardless of my opinions on EMF sensitivity… I am curious if you have a nickel allergy? You mention dermatitis after using your phone, contact dermatitis from nickel allergies is super common and there is nickel in a lot of the popular cell phones on the metallic trims and the backing etc. wondering if you considered this.

  43. Yes and this is me rn waiting for my period to start any day now and feeling miserable, knowing it will be worse at the height of my period too.

  44. It's senior guys who stare the most. I'm just old and grey enough I look too young to be horsing around, but young enough they're like, "what!?" A lot of them look like they kinda wish they had the guts!

  45. I tried a wheelchair at a museum once and it was amazing I was actually able to see everything and participate and had enough energy to talk with my sister during it too.

  46. BIG TIME. I actually don't get it if I "wander"...walk a few steps, examine item, walk a little more, pause, etc. I get it when I walk more purposefully for a few minutes. I don't actually buckle but that is absolutely the feeling.

  47. I’ve also noticed that it’s worse with sustained walking. Idk why I didn’t even think about those scooters in the store, probably because I just know I’ll get side-eyed (also in my early 30s). Screw them though, it’s not like they’d help if I fell! I’ll try to work up the courage to try one next time.

  48. Can drive some but nothing like I used to.....I used to be able to drive 8 hours traveling and be ok. Now that's almost impossible as a passenger. As for work, I had to completely stop working

  49. Same to both. I can drive a little bit to an errand but any more and I crash. It’s been many months since I was able to and my license has now expired. Ugh. I miss driving so much.

Leave a Reply

Your email address will not be published. Required fields are marked *

Author: admin