Those of you with chronic fatigue syndrome..

[worldwidetravel2017]

.. dya mind me asking what you do work wise ?
Signed off at the moment but feeling a bit stuck
Many thanks

@PabloandGustheGreySquirrels I went to the pain clinic and asked about pain relief. They said pain relief was not appropriate for chronic pain (as it has no mechanical physical cause), and tried to put me on Graded Exercise Therapy with 10% increase every fortnight. When that made me worse they said there was nothing they could offer, and discharged me.
I've had chronic pain for 4 years now.

Hope everything's ok op, good that you're getting checked out.

Just usual stress, got a week and a half now to clear and tidy all our stuff, finish decorating and thorough clean ready for estate agents for selling. Avoiding and refuting scary emails from solicitors.

Once that's done DH and I can start a better routine of daily cleaning and walking our own dogs. Looking for rental places from probably March as moving back north. Career break ends in April.

Pups 3 are nearly 4 weeks old and starting adverts. They should be a stress but are a constant joy to be honest.

Glad you’re getting these investigations done now OP, and that they’re taking it seriously.

I’d been feeling pretty good over the weekend and earlier in the week. My energy was higher, and concentration and mood had improved. Then ovulation came and I started the progestogen element of HRT last night (I take it for PMDD) and I felt bad yesterday and dreadful today. Fatigued, slow, nauseous, bloated, cramping and have flu-like symptoms. And my allergies are out of control.

Every month it’s the same. I’m not sure if my menstrual cycle is the root cause of it all. I’ve been giving some serious consideration to an oophorectomy and hysterectomy just for a chance of a normal life, but of course it might not work and then I’ll potentially be saddled with other issues. I feel so low about it all. I just want to feel ok.

I'm on day 15 of a usually 3 day period. By my Mooncup maths I've lost 1-1.5 litres of blood and it's really knocking my energy levels. I'm taking iron supplements to mitigate any anaemia but I really don't have it in me to fight the GP gatekeepers only to get the "women's trouble" fob off.

Sorry to hear your struggle with further investigations, OP.

Can I ask why LDN is not advised for ME/Cfs,
if anyone knows? When others say it helps?

Keep us posted OP (if and when you’re feeling up to it). It must be a lot to take in
x

My partner and i have been a mess since we heard bad news re results last week etc
I have a counsellor etc

Just taking myself to Beach 4 a couple hrs - good 4 the soul..
In the process of writing my life story

Writing is my fav method of comms
And helps me process things

Thank you

I didnt know til last week that iron deficiency / feretin issues can be linked to liver issues

Many drs say ah its common in females

A consultant gastro in aug said 4 in 10 females walk round with low feretin - many without knowing

My body has always been poor at absorbing iron

.this yr my feretin issues was treated with iron iv @ hosp and whilst im grateful as feretin of 252 made me feel amazing 4 a week ( until a relative died , & blood was found in qfit test ) - i think with many ppl - the symptons are treated re iron issues

• rather than finding cause ..

Im grateful 4 stomach gastroscopy in august - early aug - that apparently checked 4 stomach bleeds and id pushed 4it

But equally - i need another next month

And i have urgent upper gi abnormal issues
And all sorts

Have any of you had MRIs with contrast b4 ?
My body often reacts so much to so much // so many things
And i have other stuff being put in me next week 4 another procedure
& then something else the week after

My poor body - has alreadyh had early miscarriage in sept.
And so many other invasive procedures

I’ve had MRIs with contrast. I had no side effects at all.

Thanks thats good to no

I had rash and itchy ness after ct scan
Where they gave me iodine contrast

Dunno if it was 100 percent that

Itchy = often liver issues - i have liver issues we are learning

I was also taking some other meds
And supplements

Who knows

Can you point to where the NHS protocol is?

Useful next time I see GP.

@Alltheyearround, see here: https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#suspecting-mecfs

In particular,
• symptoms are not explained by another condition
• Use clinical judgement to decide on additional investigations to exclude other diagnoses
• continue with any assessments needed to exclude or identify other conditions

I didn’t have any of this either. I’ve had fatigue since my teens and all the NHS ever did was give me the full suite of blood tests and when they all came back in normal ranges, shrug their shoulders and send me away. One GP said they couldn’t refer me to. CFS service as their area had no funding for it.

It wasn’t until I went private and lived in London that I got a diagnosis. I got a brain imaging thing privately with electrodes on the head, when no obvious neurological cause for fatigue was found that private consultant wrote to my GP, then back on the NHS I got load more blood tests, then finally a referral to specialist CFS clinic who made the diagnosis. Never had any CT or MRI scans either on the NHS or privately. Unfortunately, while I’m pleased the CFS service exists, I haven’t found it any help. I found it was aimed mostly at people who didn’t know how to manage their fatigue either physically or mentally, but having had it since my teens I was so accustomed to it I already paced myself, knew my activity levels and triggers, and mentally it doesn’t distress me.

I’ve never heard of LDN treatment but the private consultant offered me modafinil which is a narcolepsy treatment, even though he said my brain imaging didn’t suggest narcolepsy he said he would prescribe it if I wanted for fatigue. I said no as I’m already on antidepressants and didn’t want to take any more pills to alter me neurologically. Ironically though I’ve since had an ADHD diagnosis and I’m taking stimulants which not only help my concentration but also do seem to pep me up a bit.

@InMySpareTime Former ME sufferer here, this was back in about 2001, I was 19 and was given amitriptyline for muscle pain and restless legs. However it did naff all for me. Wasn't really offered any actual pain meds per se.

Yeah, back in 2013 when I began talking to GP I took in long lists of conditions and tests to rule in/rule out.

All bloods came back normal (though NHS ranges for normal can be low for some things) though I use up B12 quicker than average.

Referred to CFS clinic, Dr there diagnosed.

It still infuriates me that there is no biological marker, and I was so brain fogged at the time I took the GP's word that he had looked into all other possibilities.

And no obvious trigger.

Just been reading ME Assoc document on cross over between long covid and cfs
and the boffins seem no further as to any clues as to why some get long covid and others don't only that recovery rates are similar to us (poor) and demographics similar (5 to 1 more women than men) so looks like autoimmune response playing a part (women have a stronger ai response, which is great for survival of female babies/children, less great for longer term susceptibility to CFS and LC).

Brain fog here meant i made same lil cc payment twice - 2 days apart

Discovered that this eve

I've just ordered enough wild deoderant for 18 moths...

fog.

Happy new year
Hows everyone ?

Happy new year.
I'm hanging in there, overdid it before Christmas so have been mostly crashing for a few weeks but emerging slowly.

I've had Covid. 😡Wiped me out for almost 6 weeks and I only started feeling better last week. So Christmas was a struggle and New Year was non-existent.

Just relieved to be feeling better and only feeling exhausted half the time now rather than all the time! 🙄😂

@HundredMilesAnHour Same.
Several weeks on I am still struggling. It’s even flared my arthritis up and I still have a cough!

I hope everyone else had a good Christmas and New Year.

Happy new year everyone. Got some sort of bug, fatigue, congestion, headache, funny stomach, scratchy throat, achy glands in neck. Be nice to get rid of it, still lots to do at home and really don't have time to be ill! DH expects me to carry on as normal.

Hi all, glad to have found you again :) on the general health topic on here, someone mentioned Perrin technique, has anyone had that? I’ve heard of LDN as well and even after googling, not sure what is really does

Hope everyone had a good Christmas as they could have and happy new year 🙂