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

I've managed to avoid COVID so far. Have also decided not to have the booster and flu jab this year. Both made me ill and took weeks to get over. To be honest I think I've been worse since I started the COVID vaccines.

I asked my doctor about LDN in February and explained I was looking into it because I'm 30 (tomorrow) and I've missed out on so much, and I'm petrified of missing more (17 years so far). She referred it to a CFS team because she hadn't heard of it, but they said they don't recommend it. I was gutted. There's nothing else to try :(

First indications for me was low B12, I now have 8 weekly injections at GP surgery. Likely that I don't absorb (saw dietician under NHS). Was so tired once almost fell head first into my tea after work.

Probably due to intrinsic factor production being turned off (genes + ? environmental factor).

Seemed OK for a good while.

Then at age 36 I had a baby that cried and cried and never slept.... survived that somehow BUT

When he was 2 this resolved and then I started asking why my energy was still so low - crashing out etc.

Also had a weird gastro bug, very extreme in late 2013 which I suspect didn't help. Diagnosed 2014.

I have had a good friend who's had it seen being a teen (after her mum died), and she and her dad have spent £££ over the years on snake oil.

I did look into Sarah Myhill, I think she may have some good info. Tried paelo diet/low carb - for weight. She says try not to have sugar/caffene as they are false friends.

I am still friends with them, even though I know this.

Sigh.

Only co-enzyme seems to be effective - if I run out I really notice and the B12 jabs are effective - better now that when they were every 12 weeks. Noticable slump - colleagues and friends could clearly see when it was the week before I was due!

Have gained a lot of weight, now 74 kg which is heaviest I have ever been and its tricky because

comfort eating/stress eating
inability to do any proper exercise - i.e cardio

All of which makes joints creaky - arthritis in hips and back (early stage) so I know I need to lose some pounds, and keep stretching and strengthening (doable).

I did also have some ACE events which is why I was curious and doing a straw poll on you fellow CFS'ers.

Have generalised anxiety (self diagnosed, never been to GP), which probably doesn't help either. And a child with SEN. Am fine doing all this therapies etc and personality wise he is easy most of the time, its the endless battles with school/LA and other bureaucracies that zap my limited energy.

Hiya, you can get LDN on private prescription in the UK as long as you can upload a GP/consultant letter showing your CFS diagnosis. If not you can give them a link to your online NHS record. NHS don't recommend it for CFS so they won't prescribe it. I'm also on an LDN Facebook group which has a lot of info on dosage and support etc.

Facebook LDN research trust

Facebook LDN for Myalgic Encephalomyelitis/CFS & Fibromyalgia (not many posts as new group, previous one was paused in September for change of admin I think)

rosewaylabs.com/patients/prescription-service/

If you don't have a prescription for it they will do a paid consultation by phone, think it's about £30 for the one off consult, then you pay for the LDN from them. If you Google LDN private prescription I think there are a couple of other places as well.

I'm not on it as my diagnosis letter is in a crate in the garage somewhere and despite filling in forms my GP practice still hasn't linked my NHS record. Once we move house in a few months I'll sort it out.

Author, with a publishing house. On my second non fiction book. Course writer. Previously a newspaper columnist.

Low Dose Naltrexone.

I did look into it but it’s beyond my means.
No support or clinics in my area for ME/CFS, other areas seem to have teams and clinics. I am equally cross and pleased that things are being done for long covid. Cross because we have been ignored for so long, pleased as I’m hoping a miracle cure will be found and filtered down to us.

I find it frustrating that there isn't a blood test for ME/CFS but it still excludes me from donating blood (because it might affect the blood in some way they don't know yet ).
Pick a side, either it is a real blood thing or it isn't!
Seems the only medical professionals that consistently believe ME is an actual real condition are in the Blood Donor dept.

I thought the same @InMySpareTime annoying isn't it?

I had a look at this but they want so much personal data that I wasn’t comfortable giving

@JewelleryCat I also felt that. I abandoned my application because they wanted so much info, some of which didn’t seem relevant. I had started thinking it was scam because of the details they wanted.

How is everyone ?

I've looked at it and signed up. Not a scam. Read all the small print.

But each of us makes a decision on how to use our data.

I signed up for the study too, there were a lot of questions. Got told I would be sent a test but nothing yet

I haven't had anything either yet @Stressybetty.

Symptoms seem to be slowly improving - did a 40 min walk today which is a lot more than 6/7 weeks ago.

Have not done much interaction with people yet, so that will be another kettle of fish. My brain finds in person interaction very energy consuming.

Looking towards going back to work phased return, customer care role so will have to build up my people time. Even zoom calls I get tired after 30 mins atm.

Well
Had a ct scan results

something on liver

Symptoms - nausea - fever - weak _ tired etc

Gotta have an urgent MRI

Have any of you had ct scans? Mris ?

With cfs,being a diagnosis of exclusion - this has made me think ct scans / mris are wise ( b4 cfs diagnosis ) to check everything

I've never had a CT or MRI scan in my life (and only had dental x rays). My symptoms don't fit anything a scan would confirm or exclude anyway.

Yes, I had loads of scans before getting an ME-CFS diagnosis, and have just had even more (including brain scan), which eventually resulted in a fibromyalgia diagnosis to add to my ever-growing list. Turns out they were looking for MS this time, so I'm counting myself lucky (ish).

My liver function is checked every year, along with loads of other things. I understand this is NHS protocol with ME-CFS, so am surprised at PPs saying they haven't had all these tests.

Hope yours turns out okay, OP.

I meant to say, @worldwidetravel2017 - it's a bummer, isn't it. You have these tests for serious organ malfunctions and, on the one hand, you hope they don't find anything ... but on the other, finding something could mean treatment's available rather than "all looks good there, you've just got Constantly Fucked Syndrome" 😬

@GarlicMaybeNot I've not heard of NHS protocol to check regularly on anything, but it might be my local Trust that is shit. I don't even get a regular asthma check, or flu jab text.
If there are magic words to get past the gatekeepers on reception I don't know them, I rarely even get to webchat with an actual GP, let alone see one in person.

DS got a reminder to check his liver function as he has epilepsy.
Maybe repeat prescriptions for certain medications trigger these checks, I don't get any repeat prescriptions, just an occasional inhaler.

Private liver MRI this fri

Colonoscopy next week

I wish id pushed 4 body ct scan

I wish i hadn't ' accepted ' cfs diagnosis

Ct scan showed multiple abnormalities

So many investigations

Such a real chance of cancer

Positives - one side of my liver is ok ( one isa big concern)
My kidneys and pancreas = okay

Need upper gi looked at - again

Colon - colonoscopy next week was due b4 liver stuff found - regardless - due to colon polyps they found n removed earlier this yr

I should know more re liver by next thursday Thanks to 550 gbp speeding some aspects of some stuff up

Hows everyone else

@InMySpareTime Really??? I'm prescribed Transtec Buprenorphine (100x stronger than morphine) 4 day patches for ME and they're life changing