Support chat for people with ME

[DK123]

posting in chat as it always gets a lot more traffic than health.

I thought there must be quite a few other MNetters with ME, which can be very a lonely illness, especially if you don't know anyone who completely understands.

I've had ME for about 20 years and whilst it's varied over the years, it's always dominated my life. I've varied between being able to work PT and being bedbound for months at a time. I'm going through a bad patch at the moment so things like self care and food preparation have been difficult lately for me.

I thought it might be good to have a thread where people can share support, anything about what makes symptoms more manageable for them and say if there's anything they've had tested or tried that's helped.

Bump - anyone?

Hi, good idea! I have CFS and fibro, fun combo.

@ElsaMars oh no, I'm so sorry to hear that. Is there anything you've found, however small, that helps with everyday life?

Wish I could say yes but not really as I have 2 DC aged 3 and 8! My DH is great though, does more than his fair share. How about you?

Hello!

ME, Fibro, Arthritis & a couple of ongoing other things.
This may turn into a competitive ailments thread!

Currently struggling to work very part time after having several, not too bad, months where I had been able to do yoga (30 odd mins) a couple of times a week as well as work. Now I’m struggling to walk to the kitchen and back after 4 hours in work a couple of times a week so yoga is impossible at the moment. Married with teen but I’m in bed earlier and earlier because I don’t even have the energy to sit upright on the sofa in the evening.

Hats off to you Elsa, I couldn’t cope with looking after young ones feeling like this.

DK food prep is so hard when feeling like this, but you need to eat well to feel well. It’s such a viscous circle.

I did manage to persuade my Dr to let me have B12 injections as my levels were low end of normal.
I know low vitamin D is common in ME sufferers but there is question as to whether suffers have low Vit D because they are tired so don’t do a lot outdoors, or are tired because they have low Vit D. I managed to get mine up to 90 but still feel tired so 🤷🏼‍♀️
My ferritin is low end of normal so I’m desperately trying to increase that also.

A few years ago I went paleo for a couple of years. DH thinks I was better then, I do still eat gluten free as the physio (?!) I saw on the chronic fatigue team told me it can help in some people and I’m desperately clinging to that. I am now veggie though so paleo wouldn’t exactly suit.

I’m done for the day but will be eagerly popping back tomorrow to see if anyone else has tips that may help.

I have ME too 👋. Unfortunately too tired to write tons of detail at the moment as I'm currently caring for my mum who's come out of hospital after surgery, which is kind of zapping my energy! Nothing has really helped me significantly except rest and lots of it!! I've taken D Ribose for around 5 years which at first made a huge difference to my energy levels. I feel like the effect has worn off over the years but am scared to stop taking it in case coming off it has a really negative effect. As well as fatigue my main symptom is headaches. Feel like I've definitely improved slightly over time (been ill for 8 yrs approx) but couldn't pinpoint anything in particular that's made a difference. Interesting to read others' views.

@MEFibroHell @SocraticJunkieWannabe hello! Thank you for sharing! I think you're both coping incredibly well considering!

Re vitamin D, mine recently showed up as 23, which is very low. I've been taking the supplements for a few weeks but certainly not noticed any difference yet. Possibly slightly less anxiety but no difference in fatigue yet.

I hadn't heard of taking D Ribose before, I'll read up on it.

I don't know about everyone else, but I always feel my sleep is of a very poor quality and quite light and disturbed - does anyone else find the same?

How did you get your vitamin D levels tested? I take a vit D tablet daily but honestly couldn't say whether it makes much difference.
Sleep quality varies. I have phases where I feel like I don't sleep well, and my sleep is quite light, but sometimes sleep very deeply. I have to get the balance right between resting/sleeping enough in the day but not so much that it means I can't sleep at night.

I have also had ME/CFS for 20 years and was also diagnosed with Fibro 5 years ago.

I have tried and tested many things over the years but the things that have make a big difference to me is a daily liquid B-12 supplement and Bio-Quinone Q10 capsules.

My B-12 is on the low side but and I’ve previously had B-12 injections which really helped but my old GP left and new GP wouldn’t give them to me as they didn’t believe in ME/CFS.

@SocraticJunkieWannabe my gp did a blood test for vit D. It's strange because on a previous test it wasn't low and the fatigue levels aren't really any different.

I definitely think I have poor quality sleep. On very very rare occasions, like maybe once a year, I seem to sleep well and I wake up and think is this what normal people feel like most of the time?!

Has anyone got any suggestions of what things they might have to eat when just getting to the kitchen and back is already a challenge in itself?

@DK123 your vitamin D is very low. I was prescribed 2 X desunin 800 to take daily and this is increased to 4 X per day in winter so 40 micrograms in summer 80 in winter & my levels were mid 30’s. Over 50 is ‘normal’ but over 75 (I think) is optimal for bone health to reduce the risk of osteoporosis.
www.medicines.org.uk/emc/medicine/27007#gref

I tried D Ribose but don’t think it made much difference, maybe I will give it another go.
I have also tried:
Sea buckthorn powder
5 HTP
LCarnitine
Collagen protein powder
Amino 1500
Magnesium
And every vitamin known to man. I’m basically willing to try any snake oil suggested in the hope of feeling better.

Yes I have very poor quality sleep. I never feel rested, ever.

@Radiosilent I have read threads where people buy B12 ampoules from Germany, where it is sold over the counter, and had them shipped to the U.K. and they self inject. Would that be an option?

@SocraticJunkieWannabe I had a vitamin D blood test but I think the guidelines have changed. It isn’t a routine test and it is, I believe, expensive so only done based on symptoms or if monitoring after known deficiency. Would a private test be an option if your Dr won’t do it? I hope DM has a speedy recovery, looking after someone is energy zapping without having limited energy in the first place!

Has anyone got any suggestions of what things they might have to eat when just getting to the kitchen and back is already a challenge in itself?

I batch cook when I’m not too bad. That way I have a healthy bol/lasagne/curry or whatever to just be able to zap when not well enough. Once they run out I tend to just have a sandwich which isn’t idea. Would a meal delivered from a local place be an option for a few days? I know cafes/pubs near me are doing home cooked meal delivery.

Oh and graded exercise therapy made me worse! I read a fantastic article on why once but I now can’t find it. Will keep looking & post a link if I come across it.

Some info the CFS team emailed me
www.dchs.nhs.uk/assets/public/dchs/services_we_provide/service-directory/our-services/health-psychology/Fibromyalgia/Self-help_guide_to_recovery_-_chronic_fatigue_and_fibromyalgia.pdf

Handy for anyone struggling in work

www.jiscmail.ac.uk/cgi-bin/webadmin?A3=ind1112&L=OCC-HEALTH&E=base64&P=16256033&B=------%3D_NextPart_000_00AF_01CCC093.0ADA83C0&T=application%2Fpdf;%20name=%22Employers%20guide%20to%20ME.pdf%22&N=Employers%20guide%20to%20ME.pdf&attachment=q