Some guidance

HI h3nr1, this is my first time on a forum so bear with me. I am sorry to hear you’re feeling low at the moment. I can relate to some of what you have said. I used to be reasonably fit (playing racketball twice a week) and I have a hard working husband (long hours) and 2 primary school aged children….so I gotta keep going! I have had ME/CFS and fibromyalgia for over 4 years and diagnosed last summer. Too many tests to mention!….all normal except low Vit.D and Calcium that I take tabs for now.

I started with lower leg symptoms, getting bad fatigue after doing little things….it got worse over a few months, then the pains in my legs started, like really tight muscles and deep aching pains….got so bad I was in a wheelchair a few times as couldn’t walk more than a few steps. Weird sensations in legs like being supersensitive one minute then kinda thick/numb the next…..now just lots of thickness sensations, like having 10 pairs tight socks on and not quite in control of them sometimes! I also have weird sensations in my hands sometimes…as if they’re swollen but they’re not. Now I have the joy of lots of other symptoms…bad memory, headaches, word finding probs, nasty aches all over etc etc etc!

What helps me, is lots of hot baths, occasional sports massage (deep tissue), trying to get rest periods between chores that have been broken up into more manageable chunks (now I sit to do the ironing!) and trying to keep a good sense of humour and looking forward to the smiles on my children’s faces. I’m also part way through Graded Exercise Therapy with a specialist physio but it’s still early days.

I hope this helps a bit? Like you said…….It feels good to rant!  K

Thanks k, for replying it was also my first time in posting,

What is this graded ex cerise thing? I'm back at pain clinic Thursday so think I'll ask then.

My legs go so weak I can't support myself but nobody seems to find out what's wrong, if I'm honest I want to be left alone to get used to it, I'm also going to start taking multi vit tablets see how that goes

And thanks again xx

My experience of Graded Exercise is done with a qualified physio that looks at your lifestyle and tries to look at ways in which to balance your activities with rest periods, while also giving you measured stretches and gradually increasing the amount of exercise you do. Eg. I started with only doing agreed stretches for a few seconds then built up the duration of them and then introduced walking each day for 30 seconds for a week. Gradually I've increased the walking to 2 minutes a day now, on top of my usual chores. It's a therapy that you have to be carefully monitored by a qualified physio while doing it so you don't overdo things or you get a setback.

With regards to your neuro symptoms, have you had an upper back MRI?

Just as an extra thing, it might be worth getting your blood levels checked for magnesium and vit b12. I'd be interested to hear how you get on at the pain clinic. Good luck! K

I will let you know how I get on, I am going to request my levels be tested again whilst at doctors on Monday.

I have had full head to waist mri's all come back clear, it's just a waiting game.

Thanks xx

Your symptoms suggest very mild form of CFS - particularly because your MRI has come clear -

Vitamin B12 injection is the best treatment for you -

h3nri

Sounds as if you have severe M.E. I have mild M.E. and I can keep going as long as I rest in the afternoon and go to bed early and if i over do things which I have to do sometimes when on holiday or have a day out or i have been giving a talk or a worksho or both i really suffer afterwards and have to rest more.

Alison

Thanks Alison for ur reply, xx