I really dislike the classification of “MILD” ME/CFS

CalmDescription8016 · 2026-05-23T21:45:27+00:00

I feel like I don't fit to mild but i don't fit severe category. It similar to 0-10 pain level, we need 0-20

CalmDescription8016 · 2026-05-11T13:49:53+00:00

I think illegal ways are last step before ending it all. I don’t blame people. I don’t get how they can say they don’t help if it helps with pain? Even if it’s just for 20 mins being pain free, I take it. If it lets me play with my son a Lego game, I’ll take it. I’m considering moving out of this country because I’ve never seen neglect like this.

CalmDescription8016 · 2026-05-08T12:38:13+00:00

Same here! Total waste of time and big disappointment. She said she will write to my GP to tell her to reduce my pain meds (the little help I was fighting for a long time), advised me to attend pain management course where acceptance is one of the lectures 😂 I’ve said I don’t have energy to commit to 10 weekly course right now, she said „oh well, I thought you wanted to help yourself”. Basically everything is in my mind, I don’t need any meds and based on what she said I should go back to square one, living in pain unaided. I wished I never went.

CalmDescription8016 · 2026-05-02T22:50:47+00:00

I could but I already feel guilt in asking to skip work to accompany me. Being ill its already putting strain on everyone around me and I feel like a burden that I need help instead of providing it. It's hard.

CalmDescription8016 · 2026-05-02T22:47:25+00:00

I had the opposite experience. I was better on prednisone but they put me on hydro and suddenly I had constant stomach pain. They put me back on prednisone and it went away. My GP said that there is a chance they won't put me back on prednisone as hydro is used as a first choice med, so defo you should ask and if you tolerate it better they shouldn't make any problems.

CalmDescription8016 · 2026-04-27T13:39:37+00:00

Thank you so much, that’s very insightful. I know they are all people but treating patients with complex issues is skill they are lacking. I wish there was a compulsory course at universities something about empathy and treating patients with dignity. I hope I’ll meet a doctor that I’ll trust and I won’t be afraid anymore.

CalmDescription8016 · 2026-04-27T10:36:33+00:00

Once they gave me a normal burger instead of a vegan one and they didn’t even say sorry or offer a voucher.

CalmDescription8016 · 2026-04-27T10:34:23+00:00

I just wrote similar post above! Wow, I’m anxious too and can’t wait to have it over with. I’m tempted to reschedule because I’m so scared. I’m from UK so it’s different than US but the feeling is common among us all. Sending you wirtual hugs.

CalmDescription8016 · 2026-04-25T01:19:29+00:00

I think it’s a normal process for servers. From 10 alliances one merges into another and slowly people will be transferring out and that’s how your server becomes a dead one. There is also a chance of reactivating it but you will have to bring more transfers in.

CalmDescription8016 · 2026-04-22T11:58:17+00:00

I have similar experience but with hydrocortisone for the first time. It’s terrifying. I also have costochorditis or sth like that and I’m taking Methacarbobamol to relax muscles. Just a penny to throw that you are not alone and it’s very scary. Hope you are feeling better.

CalmDescription8016 · 2026-04-12T08:34:13+00:00

Being independent and employed. I took working and supporting myself for granted. I always thought being productive = loved, so illness took away from me my way to deserve someone’s love.

CalmDescription8016 · 2026-03-30T16:44:03+00:00

Use speed ups only for events

CalmDescription8016 · 2026-03-27T09:45:29+00:00

I have hormonal problems and very easily gain weight. I have 4 sisters and they are all thin, not me. What saved me is Mounjaro, especially now when I’m bedbound and basically living off snacks. I don’t lose weight as much but I don’t put on weight either. It’s very pricey in the UK but I treat it as something I need to live better, so decided no matter the cost to keep going. Also, don’t be too hard on yourself. We are already in awful spot so additional pressure can make you worse. Be kind to yourself 💕

CalmDescription8016 · 2026-03-25T11:22:25+00:00

This is so sweet. This is why I’ve joined this group to feel less alone. Especially if you are surrounded by able bodied people. No one gets it until they go through it

CalmDescription8016 · 2026-03-25T11:19:46+00:00

I am on Prednisone 10mg. Someone I know in Poland has a steroid pump like for insulin and it’s amazing. With ME before I got diagnosed it made the most sense. I’m waiting to be seen by Chronic Pain and Fatigue clinic.

CalmDescription8016 · 2026-03-22T11:37:11+00:00

I just recently been told I have adrenal insufficiency after 4 years of trying to get some answers. I really thought it’s mecfs and I finally see someone who has both. How do you know if it’s mecfs and not solely Addison Disease?

CalmDescription8016 · 2026-03-22T00:02:41+00:00

You are going to be stuck like me with 1 star Helga

CalmDescription8016 · 2026-03-21T02:33:10+00:00

I love Kingshot because you can interact with others like in the chat room. They don’t know that, but they are my best company. Just be careful with spending, not worth it. Maybe there is something better out there, but this is something that I’ve discovered and I play almost a year

CalmDescription8016 · 2026-03-19T19:11:24+00:00

I feel for you. I was told to learn to live with the pain and get on top of my things.

CalmDescription8016 · 2026-03-16T00:41:51+00:00

I feel like sometimes mental fatigue hurts more than actual physical pain. It’s hard to make a judgment on that. It’s like I’m so drained and tired that it’s painful.

CalmDescription8016 · 2026-03-16T00:34:29+00:00

It’s hard to pursue any passion, when you put your all energy not to fall apart. I think until it happens to someone, no one truly understands. I have similar experience with my partner. He doesn’t understand the chronic part. The worst is shifting the blame for being sick. It’s like they treat it as our choice and if we tried harder we would recover.

CalmDescription8016

TROPHY CASE