To think ME/CFS recovery is very rare?

[savebuckbeak]

Been suffering for about a year now, since getting covid/some other virus. Ups and downs. Some good days, some bad. Wfh full-time but from home, and in a job I'm very familiar with so it's not overly tiring. Feeling pretty low and would love some recovery/major improvement stories. I can work on my laptop and potter about the house, but a 15 min gentle walk outside often just makes me have to get into bed.

I'm only 30 so it can be very lonely and isolating. No partner either.

@DelicateWombat can I ask what sort of diet modifications you made please?

Hi @Untitledsquatboulder yes sure. It hasn't been a really exact science but I started reading about chronic inflammation and dietary factors, and there are a lot of recommendations out there and I chose the ones that made sense for me (in the sense that they were practically achievable and also hopefully sustainable). So I've tried to:

• really cut down on fast carbs snacks (eg white bread, processed crackers, sweets), which I had previously been really relying on at frequent intervals for the energy rush to get me through the day

• really increase the amount of wholegrains I'm eating by adding in more quinoa, oats and black rice instead of couscous, toast and white rice

• really increase the amount of veg I eat and increasing the range of veg as well, aiming for lots of colours each day, eg plenty of spinach, red cabbage, tomatoes, courgette, eggplant, carrots, squash, kale, beans, lentils etc

• reduce the glycaemic load of my meals and snacks by making sure there is always good fat and protein as well as starch/carbs

I am still having dairy, meat and coffee although plenty of sites recommend reducing those too.

I'm still eating chocolate and crisps, just aiming for less than before, and having them after a meal rather than by themselves.

I've done better since diagnosis and medication. I've also lost a lot of weight, though it hasn't made as much difference as I'd hoped.

I have flares, and have to operate within my tolerance. If I try and keep up with other people then I crash and burn. If I keep within my tolerance then I'm ok.

Thanks @DelicateWombat

@picklemewalnuts which medications are you on?

You obviously didn't have actual CFS/ME then because it isn't something that can be 'cleared up' ffs. Sounds like you had a thyroid issue which pregnancy often improves

I managed to recover from a decade’s worry if ME/CFS by massively reducing sugar/refined carbs/caffeine. The best I have ever felt is when I was Keto and fasting.

This is absolute nonsense! Doctors check alllllll of these things before diagnosing ME. Jesus Christ

My diagnosis was off the back of glandular fever as a teenager which has now been shown to increase the likelihood of multiple sclerosis. It still re-emerges in my bloods occasionally but like I said, I have fantastic energy now as long as I eat extremely carefully.

They do blood tests. Sometimes the blood tests don't show them. I have never had a positive blood test for myasthenia, but it has finally been diagnosed by SFEMG. I know so many people with similar stories who have finally been diagnosed with coeliac /thyroid etc after many years in the wilderness. I don't know why it's annoyed you, it's very much the reality for so many people. And post diagnosis I now have a medicine that makes me better. I am not saying ME isn't real. But sometimes it is misdiagnosed

A lot of autoimmune conditions can substantially improve with pregnancy. This happened with my sjogrens.

I had post viral fatigue around the time that ME was just getting some media attention, and was largely being dismissed/ignored as not genuine by both the media and the medical profession, so it was never diagnosed, but I (and the people around me) are absolutely certain of what it was.

It took a couple of years to get significantly better - by that point I would be fine for a few weeks then have a crash for a couple of days where I just had to do nothing. After about five years I was fully recovered.

I had it from age 14 but age 20 I was fully recovered I'm 33 now and haven't struggled since age 20. Recovery is possible but it's not quick.

Thinking of you x

@Psm92 amitryptiline. It helps with pain, sleep and relaxation, makes the nerves less 'jangly'.

I also go to a spa weekly for sauna steam and exercise in water, and do tai chi several times a week.

Ideally I'd have a massage too, but that's a bit steep in time and money!

@alpenguin there was a link on another thread for a pharmacy in Scotland that prescribes LDN, it’s around £30 per month but £50 for the initial consultation.
I was hoping for PiP so I could try it but I’ve just been rejected.
details here, it’s Dickson chemist in Scotland
ldnresearchtrust.org/dickson-chemist

ME & Fibromyalgia for 7.5 years so far and getting worse rather than better.

Has anyone tried oxygen therapy with any success? It’s another thing I can’t actually afford to try but, if I ever get luck on the lotto, I will give it a go.

@savebuckbeak how are you now?
ive been suffering since 2020 after having a virus. I was really bad to start with, i started feeling slightly better. Got a horrible flu at Christmas and now feeling soooo tired and drained. I just want my life back like everyone else.
it makes me feel so much better knowing people are getting better. X

@Starrr123 Hi Starrr, I'm not doing amazingly. Had a big crash after Christmas and still don't feel back to baseline (and baseline wasn't tooo bad, all things considering!). Let's hang in there.

Would anyone be interested in having some kind of WhatsApp/Telegram chat for mutual support, sharing treatment ideas, and just generally keeping in touch? This is such an isolating illness, and though I've been part of other online support groups etc., the Mumsnet community is quite distinct and the common geography etc might make it feel a bit more connected!

@Mummieslncorporated So glad you made a full recovery! Did you get it as an adult?

I had this after both booster vaccines.

Acupuncture nailed it. The second time it happened l didn’t waste any time and went straight to see her. I’m much better. 3 months later.

@Psm92 im so sorry your not feeling good :(

does anything help?
im sooo keen to join :) xcx

I find keeping my stomach ok really helps with all symptoms. I take probiotics from bettervits which I get from Amazon. Cost around £30 per month but really worth it. I've been worse since the flu and COVID jabs before Christmas but slowly getting back to my normal

My post covid fatigue lasting 2 years turned out to be undiagnosed coeliac disease. Off gluten 12 weeks im nearly 100% back to normal. Its very underdiagnosed so make sure its excluded.

@Needsomeadvice33 im currently trying no gluten! Has h just started to see the difference? Ive been doing it 3 weeks so far!
seem to have abit more energy, but due on so feeling rubbish again xx any good snacks that are gluten free x

@Needsomeadvice33 also what were your symptoms? Xx

@Starrr123 hey, glad your feeling a bit better. You need to be on daily gluten for testing but you could get gene testing to see if you have one of the 2 gene varients you need to get coeliac disease. Thats what led to me being tested . I got 23andme gene testing in a bid to work out my crazy immune system and the HLA DQ2.5 gene cropped up (90% of coeliacs have this one and a smaller % have hla dq8). My symptoms were all way worse after covid in 2020 but i had some symptoms milder prior to this , horrific fatigue (my worst symptom), joint pain, peripheral neuropathy, microscopic blood in my urine (referred to renal for this who were useless - had it for 2 years persistantly and it goes away when i cut out gluten), skin and nail psoriasis. Recurrent miscarriages (since found out very assossiated with longterm undiagnosed coeliac disease) my last one (number 3) led me to think I had coeliac disease which is why I got 23andme to see if I had the gene. Unsurprisingly I did. Then past 18 months very bad diarrheoa, cramps and steatorrhea when I was eating gluten so I was already limiting it but you need to be 100% strict no cross contamination nothing. Its only since being extremely strict that I've got better. I do well with whole food paleo diet. I fast too so no snacks. Its been a big learning curve and I've been glutened accidently afew times.