Chronic Fatigue Syndrome

Hello, anyone diagnosed with CFS?

@Fighting99. Yes hello🌷.

@Fighting99 Hello, not sure if this thread is still active :) yes, I'm also diagnosed with ME/CFS. How is everything going for you?

Hi!🙂 Few question please

1) when it started?

2) your symptoms are?

3) what have you done to manage it?

Thank you.

@Fighting99. I got Ill about 20 years ago. I started to notice a great difficulty completing activities that I was previously able to do. As well as extreme fatigue that wasn’t relieved by rest or sleep. For example if I take a shower I get so tired and weak that I can’t get up for a day or two. I do a lot of pacing my activities and break things down into smaller parts instead of doing them all at once. I’ve also had orthostatic problems like getting very dizzy when sitting or standing. I get pains all over but I take something for pain and apply an ice pack or heat. Coming here helps me to cope. I hope that we can support you here.

You mentioned orthostatic issues. Have you been tested for Orthostatic Intolerance, POTS, or dysautonomia?

@LaBeautyWithin. Yes I have been tested. I have dysautomia. It’s not POTS. It’s called Neurally Mediated Hypotension.

I haven't heard of that. I'll have to check it out.

@Fighting99

1) when it started?

I got diagnosed with 19 but it started some years earlier.

2) your symptoms are?

fatigue, orthostatic intolerance, pain, ...

3) what have you done to manage it?

mostly pacing

@adventurousBranch3786

thanks for sharing. I was just recently diagnosed with that disease and its really sucks and depressing.

I want to connect with you like one on one similar to setup when we connect with listener?

Happy to hear your thoughts if thats OK with you and possible?

Thank you

@Fighting99 I’m sorry to hear that you were recently diagnosed. I know that it can be depressing and hard to come to terms with. I am a member so I can’t connect with you in private messages. I can chat here or in the disability chat room.❤️

Have you tried functional and alternative medicine?

How about psychiatric intervention?

@Fighting99. Hi I have tried different supplements that were recommended to me. I still take some of them. There are some others that I have heard about that I might try. I have also been trying meditation and some gentile chair yoga. I am eating a much healthier diet as well. I haven’t noticed a difference physically but the meditation helps me to calm down which is good. I did get very depressed over the illness so I started taking an antidepressant several years ago which has been helpful for me for depression but not for cfs. Has anything been helpful for you?

@Fighting99 Yes.

I was diagnosed with CFS after experiencing COVID in early 2022. I tried the hardest to avoid it and then a family member brought it home, and while everyone else is fine, I am still dealing with the consequences.