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[SarahT]

Can anyone recommend a book that covers one or both of these conditions? Or a good uk website.

Whilst I don't have ME or cfs,  chronic fatigue is hard to deal with along with the pain and stiffness. I am waiting on an appt to discuss pain relief and graded exercise but like to do my own research too.

I am looking for something quite basic and practical as I get brain fog I can get bogged  down by too many details or information. would also prefer a UK author purely because some of the US foods and terms can differ and I need simplicity. 

[SarahT]

I guess my regular gp ( like me ) is one of those out of date. The appt due is with a gp at the pain clinic who deals with chronic fatigue and chronic pain conditions so I have better hopes she will advise physio for the correct way to restart my fitness.  I need to learn how to go carefully but effectively  so my body has the better balance of relieving some pain and stiffness, and regain lost muscle work, without exaggerating the chronic fatigue. Not much to ask for haha.

The clinician is keen on a more holistic approach, including nutritional advice along with physio and mental health a big part. Sounds right for me.

I think you may be right in not looking at books in that they can be a bit 'my way is the only way ' I did get some info from the M.E association, but at that time ( as you suggest yourself) I didn't want to get too deep into it. So I shall do small bites at a time and make notes to avoid feeling overwhelmed.  Maybe now is the time to look a bit closer prior to the appt.

One useful  phrase i came across was ' think movement not exercise ' and that helps me reign things in when so want to defy my body's limitations. Also helps me to realise any small exercise is t be encouraged even if so cannot ( yet?) Do what I used to find so easy.

So yes, I do appreciate your advice very much. it has made me rethink. X

[SarahT]

Yes I absolutely understand that the whole of last year was me working out how to accept all the differences in my body and mind, both with  a peri sense and then with the added ' bonus ' of chronic fatigue and 99% certainty of fibromyalgia. Mostly it works, I am quite well in tune with my body and have a greater understanding of what it needs, or what it can and cannot do throughout each different day. And act accordingly. It's no longer feeling like a punishment but a kindness to react this way.

I do find it hard on those days when life matters or work means you simply have to expend precious energy,but try to counter balance that with more rest when I can.
 Like with peri I accept I am not the old me, but the new me. I loved yoga but find I cannot do many of the exercises, due to the pain,  so have begun gentle stretching and a ( lovely ) forum member has led me to chair yoga, and I have found a tutorial specifically for chronic fatigue.  So I am looking at that as a wonderful way to have the gentle but essential movement.

Feeling more energised now and on a better plan of softer action. Thanks again. X

[Jules]

I agree. I was diagnosed in 2002 with Post viral chronic fatigue after misinformation and ignorance of my doctor likely made it worse. I was being led to believe exercise would get me well again and was swimming every day, often feeling like I was drowning.

It took some time off work, job change and just time to get on an even keel and I avoided all books, websites and forums because the worry drained my energy. I've done okay in managing it but currently in a real bad trough after two bouts of the viral illness that's circulating, probably pushed myself through Christmas activities too and one incident of upset. I'm sleeping 9 or 10 hours a night and still feel fatigued. I think if you imagine your body battery having a faulty recharge, try not to run it right down flat.

[SarahT]

I understand Jules.

A.gp I spoke to speaks of boom and bust - such as seen by your experience in following advice to exercise far more than your own bodies capabilities, then the body crashes further.

I do wonder if I was misdiagnosed with ME 30 years ago and it may have been fibromyalgia all along? But many conditions have overlapping symptoms so at the end of the day it does for me become doing the best for each symptom whilst keeping a balance for the entire body. Given that upsetting one thing has a trigger to something else. I just need to learn and go carefully and slowly.

I have total acceptance of this. It's happening so I find the best way to deal with it.  For me, I find websites help to gain information but I just dip in. I never immerse myself in them as it would clearly mess with my head and emotions. So I take what info I need from webs and only look at applying any tips to myself if I feel.it is suitable. It's another huge change in my life and I am adapting to it.

Jules, I do say to my husband much the same thing. I have X amount of energy when I wake up. Once that's used, that's it,  no more in the tank.

Are you able to rest outside of work? Viral infections are hard for anyone to get over, but with chronic fatigue it's 100 times worse. Do take care.
And thanks

[Jules]

Sarah, I am now retired. I never managed to return to full time work but did work 30 hours eventually. The management changed and I started suffering stress again though and had a relapse. When I was diagnosed my own GP thought it was psychological and a lit of the written info was pessimistic so I decided to focus on normality and sort myself out. Despite having to change my lifestyle I've done some fun things over the years, travelled, divorced, had a friend with benefits and some wild nights so don't despair. I definitely notice that stress has a longer lasting impact than physical activity and URTIs often floor me. Not working helps, I can ease into the day during bad spells and have a couple of rest days. I always focus on the notion that things will change, as they always have

[ElkWarning]

Hi. Graded exercise has been proved damaging by the M.E. Association. Sadly, those medics not up to speed don't realise this.

Could you give a source for this? I found "NICE cautioned against the use of GET for patients recovering from covid-19" from "BMJ: NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance". Does this cover all ME symptoms, or just those related to covid-19?

[Jules]

Hi. Graded exercise has been proved damaging by the M.E. Association. Sadly, those medics not up to speed don't realise this.

Could you give a source for this? I found "NICE cautioned against the use of GET for patients recovering from covid-19" from "BMJ: NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance". Does this cover all ME symptoms, or just those related to covid-19?

When the symptoms of long covid was first described, both my sons rang me and said that's what you have mum. My illness began with a viral infection. It's a post viral chronic fatigue, as is long covid in my opinion. Long covid got more attention because it was associated with the pandemic. Very few people cared about CFS/ME and very few know about it now. I don't tell anyone,  most people still ask what it is then look sceptical. I take development in treatment of long covid as relevant to my condition

[Jules]

Sarah after 2 days rest staying at home then  3 days going out for an hour  because laying around thinking about how bad you feel doesn't help after the initial rest, yesterday was more normal for me. I didn't sleep the 10 hours and woke earlier and been out more. You do have to do what's needed and what your body tells you.

[SarahT]

Jules I also.try not to dwell on things when I feel so exhausted. So it really is as you show from your last few days, , a balance and no day, or hour is the same is it?

I try a bit of exertion, then rest, then more of the same. When I went out for a few hours last week it took me 2 or 3 days to recover so I know I did far too much. So back to the little bit at a time. I had been avoiding regular exercise, as I knew when I did essential walks, like to the local shop, I was shattered. But I have just begun a little bit of light yoga again,and some stretching exercises, just a few minutes each time and then have to really say to myself STOP. Because you feel ok, so do more, and then if course you are not ok.... Learning and listening to my body.

So I am hoping for just a little slow walk tomorrow. I kind of say to myself try one ' big ' thing each day, be it a walk or extra house work, and then anything t on top of that is a bonus. And keep reminding myself not to compare to how I was or how I would like to be, because this is me right now,can't afford to waste energy on what ifs.

I do love postmenos quite about holding your bird lightly.
Take care

X

[Jules]

That sounds a good plan Sarah. I too want too exercise more but I'm out of condition because I've been ill over Christmas so I have to start building up again. It's frustrating but I also do some toning exercises.

[SarahT]

Same here Jules, I think I did the thing where I had the fatigue and exercise worsened it, so then stopped most exercise to avoid the fatigue and then the joints and muscle fatigue for much worse as well. Think I just lost so e confidence out of fear.

Go slowly to build yourself up, we know too well that if we do too much we get knocked back spectacularly.  And although I am repeating myself always ( I struggled here sometimes) stop before you go to far. Especially when you do that thing ' but I feel ok, a few more minutes won't harm me. Until it does.

But I feel so much better for short walks and a little yoga and stretches. Makes me feel a bit more in control. Take care

[SarahT]

Horrible day today. Completely exhausted. The pain and stiffness worse too.

No walk, managed to wash my hair but not a shower  as I couldn't manage both. Sit down to get dressed, then have the lovely sight of my husband having to lift my cup to the table every morning as I cant carry things first thing. I just don't get these sort of days when I haven't done anything extra. I mean yesterday we did walk to the local shop and back, probably a half hour round trip. But I have been so careful to rest up and do a small activity around the house then rest again.  Frustrating to say the least.

Moan and rant over with. Fingers crossed better tomorrow.

[Jules]

Ah that sounds tough. How long ago were you diagnosed?

[SarahT]

Thanks Jules, I was just having a particularly bad day. I know you get them too. Just want to hang your head on the wall!

I had chronic fatigue some 30 years ago,but it was early days of this and I had no medical back up whatsoever. It was only a few months ago I found out my medical notes actually recorded this a a such. I still though t I hadn't been be pieces of understood for over 30 years.

This time it has been going on for over a year, I assumed it was hormonal but, luckily a gp referred me to a chronic pain\ ME clinic in November.
She thinks it's fibromyalgia which also has chronic fatigue as a symptom.
So am waiting on a hand scan to see if arthritis is also a factor before a follow up with that clinic. I would like some physio to understand how much\little I can do without making things worse.
Thanks for getting back. Just a bad day.

X