FM AND ME

[Chelseaab]

Hi, I have recently joined this forum as I was diagnosed 2 years ago with ME and FM. I am the ripe old age of 20 and have been struggiling with the symptoms for most of my life. I am writing this thread in hope of finding some new things to try out that may help with my symptoms. So my symptoms are:
Memory loss - everything, dates, times, activities, places, etc
Tiredness - i can sleep for 16hrs a day at my worst times and I will still feel tired
Pain - I am in constant pain, it never goes away, all over body pain I never have any breaks from it
Frustration - I become easily frustrated and worn out, I get angry at myself for feeling this way and I'm unable to change it.

If anyone has any advice or just fancy a chat about what we all go through please give me a message or reply to this post. I really appreciate your time. Many thanks.

Chelsea

 

[sunkacola]

Hi Chelsea, and welcome to the forum. I wrote a post that includes a lot of advice for things you can do that may help your symptoms a lot. It doesn't expressly include memory loss simply because I have not had that to any significant degree, and I only want to advise people to do things I myself have done. Take a look at it, and start trying some things. It's very likely that at least something there will help.
And come back here if you have questions about anything I wrote.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[TJB]

Hi Chelsea,
I have the same diagnosi’s as you (plus a couple of other things that nobody seems to know if are relevant). My physical abilities are considerable and I’ve had to accept not being able to work, make changes to my home, car etc.
Its tough, not helped by the fact that some , actually most Dr’s, will only acknowledge Fibromyalgia, not the ME and of course medically they say a cross over. I don’t agree, the CFS/ME is very separate and should be acknowledged as so. Its all in the NICE guidelines (which Dr’s should be abiding by).
So I found one hurdle was not allowing dr’s to stress me out by not acknowledging my full diagnosis. Many do not have the expertise anyway.
Another was accepting your diagnosis. Fighting yourself over it probably isn’t helping you. Accept, then start working with it.
I also was quite paranoid about friends and family not understanding what was going on with me medically. Support is so important, make sure you don’t cut yourself of from people. Even 10 minutes chatting is support. Sometimes I can’t manage more .
Self pacing I found helpful. Tiny steps. Example, at one point I could not empty a carrier of food due to pain and total fatigue. I had to learn to do a little, not the full bag, not give in and do nothing as nothing can cause other medical issues. On better days still pace yourself to try and avoid relapse either small or major. This I find the hardest as I want to everything lol..but I’d pay for it after.
Your GP should of referred you to CFS/ME specialist too. I went but due to my overlapping issues they couldn’t help, though tbh self help is a major part.
Welcome to chat anytime x

 

[VPugh]

I'm sorry to hear this, especially when you are young. There is some very good advice on here regarding managing the symptoms and getting by day-to-day. The only assurance I can give you - and I feel hypocritical saying this today as I feel like my body has been broken up by a road-drill - is that you do get to understand the patterns after a while. It doesn't make things go away, but I would suggest keeping a diary to just check when things are at their worst and what the trigger might have been. It's also true that you will get better at managing things so, though the symptoms don't always disappear, they don't become quite so surprising (which is oddly reassuring).
If you don't fancy the diary option, I would suggest the dairy option which involves eating cream cakes - I'm pretty sure that this isn't an official recommendation, but when I'm having a bad day, a raspberry and cream turnover sure feels good!

 

[TJB]

Ooh..loving your advice as love cake . Every bit of happiness counts !x