ME - and chronic fatigue syndrome

[Boatsetsailrose]

Hi reaching out to see if anyone else has cfs?
I have recently been diagnosed and wanting to find others here....

[Three Roses]

I'm not diagnosed with cfs, I just have low energy levels. Not anywhere near cfs. Sorry you have this. 

[Eyessoblue]

Hi, strangely enough, I've got a GP appointment booked in a couple of weeks as I think I have this, I'm permanently tired and not just as in I feel tired but I literally feel that my body shuts down after the simplest of things, I can do one thing a day then have to rest for hours after, my brain is on a weird disconnect and my body aches all over. I'm sure this will be my diagnosis, feel like I just can't cope with the simplest of things without going into meltdown.

[sj]

hi boat 

congratulations and commiserations on the diagnosis ...... that is, if like me, you found it both a relief to know what you're dealing with (as much as is possible with this, anyway) but a bummer that it's 'a thing' that's unlikely to clear up

the best shift for me was when I finally grasped and accepted that I had to REALLY listen to what my body was telling me it needed and didn't need rather than trying to make myself do what I THOUGHT I should do ..... interestingly this became easier once I'd finally discovered C-PTSD and started working with that.... still working on it, but getting better at it

I've already written half a book in one of your earlier posts, and I don't pop in too often, but I hope you are finding info and feedback that's helpful for you in adjusting and integrating

take care
sj

[Boatsetsailrose]

Hi three roses...
I hear you... I was like that for a few yrs then it progressed... In hindsight I pushed myself too hard as I didnt know I needed to slow as much...
Now I do

[Boatsetsailrose]

Hi eyes so blue...
I knew way before I got the diagnosis..
Yes as you describe the body shutting down, body aches...
Do u get brain fog and memory issues..
I'm on an amazing fb group with 25k members and its so supportive and inspiring the research that's been done, science, different systems in the body, viral component. Many describe having a bad virus and then life stressors on top plunged them. The link between trauma and cfs is also v interesting...
I wish you to get the support u need...
I'm on bed rest today.. Had my worst flare up last wk after pushing too hard... Grateful I am mixing my wk with some activity and pacing / rest

[Boatsetsailrose]

Hi sj
Quote 'the best shift for me was when I finally grasped and accepted that I had to REALLY listen to what my body was telling me it needed and didn't need rather than trying to make myself do what I THOUGHT I should do'

Absolutely! Oh my yes this has been a turning point for me which has happened v recently! Not battling is so much better

[DingDingCrunch]

I had chronic fatigue, and it turned out to be from mold exposure. Some people store biotoxins from mold that cause serious chronic fatigue. Functional medicine doctors can help run special tests for chronic fatigue like for Lyme disease and mold screenings to help determine the cause of it. Hope that you feel better!

[Boatsetsailrose]

Thanks ding ding...
Yep that's my next action to find a functional /integrative practitioner for some testing

[Eyessoblue]

Hi, sorry for late reply. Yes I do get the symptoms as you described but I'm also at the age of menopause so it's very difficult to decide if it's that or both. The brain fog is definitely getting worse but again I know that's related to menopause, I'm seeing my doctor in 2 weeks so hopefully she can give me some idea with it all. Hope you're doing ok otherwise?

[Boatsetsailrose]

Hi eyes so blue...
I started taking HRT for menopause and it has def helped brain fog and memory but not the fatigue

[Boatsetsailrose]

Hi all
Just wanted to post about the challenges of social isolation and cfs /fibromyalgia symptoms..
I mean covid or not my symptoms would be happening but I guess what I'm finding challenging is not having the energy to do as much stuff as I'd like...
Maybe doesn't help when I see Instagram /Facebook etc and people are jumping, dancing, singing, creating etc..
I can do bits of things and this is what I need to remember... Its not having the energy to go for a walk or bike which is frustrating.... Too much time in my head..
I seem to spend a lot of time in my mind thinking of all the things I want to do, used to do, it is all whirling around. I'm a creative type but get blocked although I am doing bits...
I guess it all boils down to the same ol same ol I'm not enough, I don't do enough blah blah...
I've just wrote lots of ideas in a journal and will work each day with a little plan and focus so I feel good..
Anyone got any tips experiences on finding it hard to focus, stay with a project, progress in hobbies?
Anyone else with physical health challenges?

[sigiriuk]

CFS is more common in people with childhood trauma.
Muscular overactivity/tension/pain is more common also.
Some researchers believe that the body stores memories also: BEssel Van Der Kolk.

As a person managing the long term effects of childhood trauma, I know that it does not live in the brain mainly.
It is in my body just as much as in my thoughts, and neurons.
My body is in pain, as is my mind.
And I try to manage both

Slim

[brightlight]

I have not been diagnosed with cfs although I suffer very badly with fatigue and sleep a lot and need to rest and be away from people.

I thought this was over exposure due to my work and being around people but even simple walking outdoors or going shopping during lockdown triggers this off.

Trauma definitely is physical too. I suffer from chronic pain and fatigue, the former diagnosed, the latter part of my trauma.

Trying and slowly implementing a routine helps for me, small steps. Baking a cake or something you enjoy makes me feel pleased with myself and this becomes something my brain wants to feel again and this becomes a routine. Hope this helps.

[Boatsetsailrose]

Good to hear you bright light
Well wishes to u