Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Anyone suffer from CFS/ME

5 replies

ladybird69 · 15/10/2019 00:00

Putting on here for traffic. I’m so tired all the time that I could cry all of the time. I had bloods done which showed I had low b12 so I had a course of injections and the nurses said that I’d be skipping around. Nope I feel worse than ever. What do I do to feel better? Does it sound like CFS/ME? and how do you get people to take you seriously? I tell everyone how I feel and they just say Awh yeah I feel knackered too! I sleep all day and all night I don’t go out i don’t see any body, I’m just too tired. My mum has been in hospital I’ve literally dragged myself in to see her every day for an hour but I’ve been taking taxis as I don’t trust myself to drive, then I go straight back to bed. I just want my old life back. How does everyone else cope?

OP posts:
EnidButton · 15/10/2019 04:36

B12 deficiency symptoms are very very similar to CFS/ME symptoms. I don't know enough about b12 anaemia but I know there are groups out there who say the injections given by the nhs aren't strong enough. Maybe someone on here will know more.

I'm too cotton wool headed (I have cfs/me) at the moment to reply properly so I hope others can reply to your post in the morning. Just couldn't not answer and wanted to let you know you are not alone and I completely understand how you feel. It's a cruel awful illness made worse by having to constantly explain and justify yourself because it's invisible and people can't seem to grasp illnesses and pain that they can't see. If they could feel how you feel for just 10 minutes they'd be shocked. I'm very sorry you're dealing with this. Flowers

Just off the top of my head, and please research any advice as it depends on the individual, but things that have helped me are

Vitamin D supplements (high strength gel capsules)
Q10 (200mg)
Magnesium at night.

A teaspoon of D-Ribose powder in water each day. (Get it from body building/runners websites. I like My Protein)

Sour cherry juice (concentrated kind from Holland & Barrett. 30ml (ish) Must be the sour kind) in a large glass of water or whatever you need.

Weirdly it's the cherry juice that has helped the most although it sounds like complete nonsense. I was very surprised. It helps my brain fog and muscle/joint pain immensely. May not do anything for you but well worth a try. There's been proper studies that suggest it's good for inflammation (in arthritis type conditions). Do give that a go, there's no harm done if it doesn't doesn't help.

Sorry I can't give any advice on how to make it completely better. I wish I could. If I ever meet a genie I intend to use all three of my wishes on making this awful condition go away for all of us.

Flowers
Lumisade · 15/10/2019 04:58

Hi ladybird. I'm sorry you're going through such a tough time, I hope you have energy once your B12 levels increase. CFS is horrendous, it makes pregnancy fatigue seem like a breeze. I'm also sorry to hear about your mother, I hope she is out of hospital soon.

Have you looked on the Phoenix Rising CFS ME website and forum? It's very informative, lots of scientists on there and good advice available. I also found Dr Sarah Myhill's advice good, she has info on her website, sorry I don't know how to do links from my phone.

I would echo what the previous poster has said about D-ribose.

You can get through this. Good luck friend. Feel free to message me if you need someone to talk to.

Jamesella83 · 15/10/2019 05:07

I don’t have M.E but my daughter does, not heard about the cherry juice So will be trying that!
It breaks my heart hearing people ask how to be believed/taken seriously. Having watched my 10 year old who had no idea what it is (nor me) be taken down by the symptoms one by one to a place where she is now is horrible. Yet because it cannot be seen or ‘proven’ people struggle to understand/appreciate how very real and serious it is.

Interested in this thread?

Then you might like threads about this subject:

Thegracefuloctopus · 15/10/2019 06:12

It drives me so mad when people say "yea me too" about the tiredness/pain that I've stopped telling people what I have. I've stopped saying I'm tired or in pain. Then when I'm off sick from work for weeks because of a flare up they get a right shock and start saying "why didn't you say anything" and when I explain that there's no point because people have nothing to compare it to so think it's just being tired or a bit achey they actually show interest as to what it is, what it's like and how it effects me. The flu analogy seems to work best but some poor woman at work now thinks I constantly HAVE flu and offers to make all my drinks for me bless her. I hope you feel OK soon op and you arnt subject to these awful diseases

InMySpareTime · 15/10/2019 14:26

I have ME/CFS, on a good day I can walk into town a mile away, but on a bad day I just sit on the sofa all day. I can't even concentrate enough to read on bad days.
Mine started with anaemia, I hoped the iron tablets would restore my energy levels but I'm still fatigued a year and a half later.
Diagnosis is a long road as ME is a "dustbin diagnosis" once everything else possible is ruled out.

New posts on this thread. Refresh page