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Physical & Psychological Comorbidities => Co-Morbidities => Autoimmune/Inflammatory/Oncological/Neurological Conditions => Topic started by: Boatsetsailrose on January 26, 2020, 10:08:14 AM

Title: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on January 26, 2020, 10:08:14 AM
Hi reaching out to see if anyone else has cfs?
I have recently been diagnosed and wanting to find others here....
Title: Re: ME - and chronic fatigue syndrome
Post by: Three Roses on January 29, 2020, 07:51:42 PM
I'm not diagnosed with cfs, I just have low energy levels. Not anywhere near cfs. Sorry you have this.  :hug:
Title: Re: ME - and chronic fatigue syndrome
Post by: Eyessoblue on February 03, 2020, 08:43:06 PM
Hi, strangely enough, Iíve got a GP appointment booked in a couple of weeks as I think I have this, Iím 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. Iím sure this will be my diagnosis, feel like I just canít cope with the simplest of things without going into meltdown.
Title: Re: ME - and chronic fatigue syndrome
Post by: sj on February 04, 2020, 01:12:47 PM
hi boat  :heythere:

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

Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on February 06, 2020, 11:05:07 AM
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
Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on February 06, 2020, 11:09:39 AM
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
Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on February 06, 2020, 11:12:03 AM
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
Title: Re: ME - and chronic fatigue syndrome
Post by: DingDingCrunch on February 17, 2020, 10:28:17 PM
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!
Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on February 18, 2020, 10:16:09 PM
Thanks ding ding...
Yep that's my next action to find a functional /integrative practitioner for some testing
Title: Re: ME - and chronic fatigue syndrome
Post by: Eyessoblue on February 28, 2020, 09:42:14 AM
Hi, sorry for late reply. Yes I do get the symptoms as you described but Iím also at the age of menopause so itís very difficult to decide if itís that or both. The brain fog is definitely getting worse but again I know thatís related to menopause, Iím seeing my doctor in 2 weeks so hopefully she can give me some idea with it all. Hope youíre doing ok otherwise?
Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on April 02, 2020, 12:09:26 PM
Hi eyes so blue...
I started taking HRT for menopause and it has def helped brain fog and memory but not the fatigue
Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on April 08, 2020, 05:16:07 PM
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?
Title: Re: ME - and chronic fatigue syndrome
Post by: Slim on April 10, 2020, 09:30:58 PM
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
Title: Re: ME - and chronic fatigue syndrome
Post by: brightlight on April 11, 2020, 04:35:55 PM
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.
Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on April 13, 2020, 02:24:40 PM
Good to hear you bright light
Well wishes to u
Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on April 13, 2020, 02:25:30 PM
Thanks slim for sharing
Wishing u well
Title: Re: ME - and chronic fatigue syndrome
Post by: Eyessoblue on June 08, 2020, 07:03:13 PM
Hi, long time sine I posted. I just wanted to say that I had every diagnosis of cfs or fibromyalgia or both. I was ready to go the GP and tell her it all, Iíd read up on both and diagnosed myself, this was it , this was me. Then Corona struck so I couldnít go..... in that time of Coronavirus my anxiety/ tiredness was the best it had ever been. I slept better than ever, was no longer tired. My depression lifted!!í And why? Because nothing as major as Corona could even get close to the trauma of my life. Everyone was going through major anxiety and I was just like - what, whatís the issue, itís not so bad..... quite common in serious trauma cases Iím told.... my CFS and Fibromyalgia symptoms literally disappeared at the start of Corona, which just shows my symptoms are anxiety related and makes me question. If Iíd gone to the GP and told her my symptoms Iím sure she would have agreed that my diagnosis was correct, written me off, given me a load of pills and I would have gone home claiming to the world how unwell I was. But, something as in Corona changed my Ďmindsetí and I thought no, I donít have that, yes Iím tired, exhausted and have cptsd, but Iíve labelled myself and probably would have convinced my GP I had what I didnít therefore sunk into a depression of illness that I didnít actually have. ....... just a real eye opener for me that although I had the symptoms at that time, my cptsd/anxiety was actually all I need as my diagnosis and the rest I believe was placebo and believing as I had the symptoms of cfs and fibromyalgia then thatís what I had.... Iím sure I could have labelled myself with more too, but those diagnoses can set you up for life, it was a lesson for me well learnt that just go with what youíve got and let it be part of cptsd, you dont need anymore diagnoses to your name, you donít need another illness under your belt. Think carefully before you think what you might not have..............
Title: Re: ME - and chronic fatigue syndrome
Post by: Boatsetsailrose on June 09, 2020, 03:30:15 AM
Hi eyes so blue
Great to hear you..
Yes, my understanding is cfs is an umbrella.term for a collection of symptoms that aren't truly understood. There is no conclusive science and so the medical world often scratch their head and in my case I've definatley experienced that 'glazed over look on the doctors face. In my case I have been referred to the hospital under a specialist service for cfs but there is no medical imput or further testing etc. The treatment is by a physio helping me to look at lifestyle changes /self care.
Interms of meds. I only take a stronger anti inflammatory when the pain with fibro is unbearable.
From the research and forums I have been on trauma /severe stress is a definate component of cfs type symptoms.. The body speaks the mind and all. Many of us had a virus and that on top of emotional stress was the tipping factor. In my case I def know stress from cptsd and life has been the tipping point for me.
My experience is that I started to get unwell when I was working as a  nursr the stress was just too much.. My mental state was deteriorating as I put down my addictions and cptsd was diagnosed.. I've pretty much lived for the past 4 yrs in bed a lot either due to mental, physical health and both. For me things have got worse not better. I let my career go nearly 2 yrs ago and haven't worked since, I can't. At my worst I am really unwell with severe exhaustion and all the collection of symptoms that come under cfs.. I'm just been on bed rest for a week the only energy I have is for eating. I experience a lot of physical stuff with it, shortness of breath, dizzy, glands, headache, non restful sleep and the list goes on.
For me having this diagnosis has been helpful as I have been able to read research, join forum and get extra support. It is v isolating. However I don't write myself off and as u point out if I take the label away I'm left with physical wipe out from a largely nervous system problem... I'm tackling mine from lots of treatment angles.
So glad to hear of your success in lifting symptoms via your attitude that is great.. Not something that many can do from what I have heard..
Keep up being well and not being in another label that you don't find helpful.
Keep thriving dear...