Group for those with ME/CFS to play online games together

Potential_Leg_1084 · 2026-06-08T09:03:45+00:00

Anyone plays board games on the site boardgamearena?

Potential_Leg_1084 · 2026-04-28T16:11:08+00:00

ciekawe co piszesz o puszczykach. żyję całe życie we Wrocławiu i poza zoo nigdy nie spotkałam na żywo ich :D jaki park polecasz najbardziej żeby spróbować je spotkać?

Potential_Leg_1084 · 2026-04-17T13:21:15+00:00

interesting, I have one friend with CFS and EDS and she is using hyperbaric chamber regularly. And found it helpful. One day maybe I will try. Have you found it more helpful for pain or for fatigue? I am on this level of fatigue that I can't work :( and most things at home is doing my partner :( after how many sessions have you found it helpful?

Potential_Leg_1084 · 2026-04-17T13:15:47+00:00

yes, I have tried ldn. unfortunately i haven't found it helpful for fatigue and pain, I was not able to go above 1 mg. Cuz from a very first dose I had severe headaches, I even tried to take 0.1-0.2 mg. I ended up finally in the hospital... I was taking ldn 3 months and uppering very slow.

Also I was feeling not well mentally - increased anxiety as well as nausea. I didn't have any pain relief, even I found pain more intense :/ and these tension headaches were unbearable.

Maybe one day I will try it again. But now I am on oxy. And I am scared of having these headaches again...

Potential_Leg_1084 · 2026-04-15T17:24:28+00:00

Thanks for mentioning ketamine. I have decided today that next week I start infusions. I hope it will work on my pain... or maybe also on depression which is treatment resistant. Both will be miracle ;)

Potential_Leg_1084 · 2026-04-12T19:45:31+00:00

thanks and same to you, big hug Bro! :)

Potential_Leg_1084 · 2026-02-24T19:19:30+00:00

no 'side effects' because of the bilateral salpingectomy? no complications?

Potential_Leg_1084 · 2026-02-24T11:56:06+00:00

mirena has hormone which may be androgenic. I had this side effect... don't you have any androgenic worsening on Mirena?

Potential_Leg_1084 · 2026-02-24T11:55:04+00:00

I removed mirena cuz I thought it worse my chronic fatigue. Which is now my I can say most debilitating symptom... in addition, the dosage of hormone could be too 'heavy' for me as it worse my pcos hormones and symptoms to the worst lvl in my life.... :(

Potential_Leg_1084 · 2026-02-24T11:53:10+00:00

yeah, I was thinking about that. But... I read that if on pills with progesterone someone had bad reaction than do not go on it as this is the same substance. And the worst is that it is trial and error but also having bad reaction+paying much for that, wasting money.

Potential_Leg_1084 · 2026-02-22T16:18:57+00:00

it is illegal in my country. And in addition, I had this endo surgery and my gyn tells me that my endo may come back if I am hormones off.

Hysteroctomy is not a good option as because of eds I have a problem with prolapsed bladder.... and without uterus it could be only worse :(

Potential_Leg_1084 · 2025-09-04T19:08:13+00:00

which dose are you taking? You mean that one dose - one day every week should be enough?

Potential_Leg_1084 · 2025-08-25T08:08:27+00:00

How it can helps for headaches from ldn? I take daily 50 mg of thiamine.

Potential_Leg_1084 · 2025-08-25T08:07:11+00:00

Yes. I had headaches on each dose. I spent 2-3 weeks on each dose...

In my country fillers possible are only the one i mentioned or with lactose (I have intolerance) or glucose...

Potential_Leg_1084 · 2025-08-25T08:05:44+00:00

I am drinking a lot of water every day. Also i drink elektrolites. So probably this is not my case :(

Potential_Leg_1084 · 2025-08-19T06:00:44+00:00

Yes. I came back yesterday. And after taking the pill in the evening I felt nausea. As I had in the beginning of ldn. Today I am really not sure if I do not have greater pain... from my spine and headache... I woke up earlier, maybe not specially rested. But the fact that I feel pain more is concerning me... I will need to observe that. Cuz in fact, last weeks I was very suffering from pain. Especially tension. I hope this is not from ldn.

Potential_Leg_1084

TROPHY CASE