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.

This is maybe quite an extreme example, but Yvette Cooper obviously made a pretty good recovery! She was apparently housebound with it for a good couple of years in her 20s.

It took me four years to get back to being able to have a day out. That seems to be the average. It's important to slowly build up, eat as well as possible and keep your weight down. I'm still not in a position to enjoy the holidays that I used to, but I can enjoy a two/three day break. Have you listened to Martine McCutcheon talking about her experience? There's lots of recovery stories.

I recovered. Not going to lie. Did take a few years, but I got there!

Thanks so much for sharing @tall1234 . Do you feel anything in particular helped you recover?

I hope so! My DD has had it for six years now and is still suffering. She has worse though as she was fully bed bound for a year. Now she’s well enough for PT school and the odd half day out.

Oops, has should be was

Nope, I know someone who really suffered badly and for several years in their 20s. Full recovery now, apart from weakened immune system.

I'm in same position.
I'm starting low dose naltrexone. Have a look into it online. I have autoimmune diseases though and major post covid flare with crippling fatigue. Also 30.
I would say I've had some great success with mediterranean diet supplemented with high dose omega 3 (4grams per day).
But honestly have a look into low dose naltrexone for chronic fatigue. It's immunomodulatory. You have to find a compounding pharmacy to supply but it's a cheap drug.

It does take time, but yes full recovery absolutely can happen. A friend of mine had it while doing a PhD, was supported to keep going, did well and has gone on to a great academic career.

i feel like I did. Maybe not. It’s all perspective and about everyone’s “normal”. Massively struggled ages 14-20 with instances of being bed bound. My doctor told me he frequently saw recovery ages 18/19 and then relapses in mid twenties but I am somewhat beyond that and fairing okay.

I still definitely struggle with fatigue but I can live a “normal” life. For me that means I am unlikely to make after work plans but do work 8-4:30 and I limit myself to only 1 day of weekend plans with one day left to do stuff at home (admin, tidy, garden play with kids) but in reality I don’t often make plans at all and will just reverse a day for parks and the like with the kids if I feel up to it which I can 80% of the time. It’s my normal anyway and is worlds beyond my life as a teen. If I were required to be more “busy” I can do it for weeks on end but will eventually require some “recovery” time lasting a couple of days which means duvet and movie days for the kids.

@Needsomeadvice33 Thanks for sharing. I do plan to look into LDN. I've heard it can be like a miracle drug for some. Bizarrely, the thing that's preventing me from trying it is because I feel like I've pinned a lot of hopes on it, and if it doesn't work, then...

When you say mediterranean diet, what kinds of foods?

This is interesting. My mum has M.e. diagnosed at 18. She is now 52. She has never changed doctors and to be honest our life was hell because she couldn't look after us. Sleep all day up all night. She was very manipulative and everything was about her condition. We are no contact now due to other things but this didn't help as she refused to get help.
The medications I remember she was on was tramadol which I believe is an anti depressant. And quite a few other tablets. But the doctor never changed them or tried anything else. She is also a narcissist on top of all this! She blames everything I life on her m.e.. she still had 2 kids after me and 3 marriages total. She never had energy to do anything unless it meant shopping.

Is this normal?

@Jalepenojello So glad to hear you can live a normal life. Honestly, that sounds great to me.

@Singinginthesnow Sorry to hear about your difficult childhood. But ME really can be an awful condition for many making it very difficult even to keep up with basic self-care. There's no medications approved for it either. After 8 months of searching I found a private doctor who was willing to prescribe a few experimental things "off label", but the ones I've tried so far haven't worked and he did say it was a long shot. So to answer your question, yes, it's very normal.

Reassuring to hear this. I have a close relative with ongoing long covid fatigue and it’s been two years already with fairly unchanged symptoms.

@savebuckbeak I ate low carb( and only whole grain like brown rice quinoa) loads of fish especially oily fish. Olive oil over salads, tried to follow paleo so all nutrient dense, real foods. No junk. Cut out sugar. By week 6 I felt good by about week 8 I felt amazing. Unfortunately then had a miscarriage and fell off the wagon.
I got covid April 2020 (confirmed by test, was working as a nurse) my immune system went out of control, I was covered in guttate psoriasis and got glomerulonephritis. I couldn't clean my house I couldn't do anything the first year. Year 2 a bit improved. But now I'm definitely going to try LDN I will try and share a lecture on it you should watch its 45 mins but well worth the watch. I'm going to get back on mediterranean diet, I taking omega 3 4grams a day and adding LDN. I'm also on vit d 8000 units. I feel chronic fatigue is most definitely a vicious cycle of autoimmunity

I recovered too after 2 years and now do regular spin classes, can walk for hours, have a full on teaching job etc

I have fibromyalgia although do wonder if it's cfs because my exhaustion is worse than my pain. I believe they are quite similar

I'm 33 & feel very frustrated too. I've been working part time but struggled & now on long term sick.

I'm currently taking LDN. Started a couple of months ago & slowly but surely increasing. I have found I have pain in new areas but my brain fog & exhaustion has improved greatly. I'd rather being able to think straight with pain than the other way about.

I currently follow dairy/egg/soya/gluten free & it really does help but do think I need to try a low inflammation diet or a paelo diet to maximise the benefits.

My next step is to focus on gradual exercise. I wouldn't have even been able to consider this before LDN so it really had made a difference to my life.

@backawayfatty1 So glad things are slowly improving for you. Can I ask (can PM if easier?) how you accessed LDN?

A friend was put on some coaching course where she was actively encouraged to eat regularly and exercise in a way that really helped. Mostly very simple things. However she let it all slide when the coaching stopped. But she had been loads better at the time.
I always nag her to make sure she eats and keeps fluids up but can't encourage her beyond that.

My sister was in bed for 4 years, could barely function. Trawled the country going from medic to medic privately, looking for a rare disease to account for her symptoms. Previously very active and healthy if rather anxious. Full recovery after 4 years, what helped was consulting a Dr Myhill and adopting her methods. Dr Myhill is a controversial character in traditional medicine, she advocates a Stone age diet and prescribed vit B and magnesium injections.

I had ME/CFS in my teens (age 14 onwards). I'd say I was mostly recovered by 18/19 - went to Uni & have lived a normal life. I'd say I get more tired than some people but not to the degree that I can't do late nights every so often.
I will admit the early months with a baby, when DC were little was hellish - but I got through. I'm early 40s now.
I took Propalis when I was I'll - no idea if it helped but back in the 90s very little was known about ME if you even had a dr who believed it was real!

@savebuckbeak you can get it via telephone consultation from dixsons pharmacy

Sorry dicksons