FAO Fibromyalgia/ME/CFS folk

Former Member

Over the past 2 years, I have tried virtually every treatment (convensional and otherwise) to see what will make me better, how ever slight that is. So far I've found very little that has actually made a difference, but there are a few things which sometimes make it bearable. Plus I've got a long list of things that I'm going to be trying. As it seems that theres a few people on the boards with Fibromyalgia/ME/Chronic Fatigue I thought it might me useful for us to all share what does and doesn't work it might be useful. I know the same things don't work for everyone and obviously you need to get medical advice when changing medication or making any big changes to your lifestyle, but I thought it might be worth giving a go.

So -

Things that do work for me-

heated TENS machine
heat & cold packs alternately
codeine (a bit but not much)
Massage
Eating lots of fruit and veg
Hydrotherapy
Physio - if its tailored to me and I can keep up with it
Aromatherapy (the smells not just the massage)

Things that don't work for me-

Venlafaxine
Duloxetine
NHS TENS machine
Diazapam
CBT

Things I want to try -

Capsaicum/cinnamon/turmeric supplements
low dose naltrexone
better routine
mindfulness
Omega 3/6/9s
Hypnosis

What about everyone else? (I hope this doesn't contraviene any forum rules, I did look but I wasn't sure)

Former Member

things that help me:
Pacing
Regular rest throughout the day
Not drinking too much coffee and alcohol
Cocodamol (over the counter strength)
Sertraline
Hot water bottles

Stuff that doesn't help:
Stress/ mood swings
Pollution particularly from buses
Busy places, such as shops and buses
Loud noises and bright lights
Amitriptyline
Duloxetine
Fluoxetine
Most antipsychotics
Pizotifen
Omega 3
Walking for more than 20 minutes
Group therapy
CBT

What I'd like to try:
Ampligen
Gabapentin
Pregablin
Massage (Perrin's technique)
Reflexology

Former Member

How do you pace things? I find it really really hard - especially because I have to stop all the sodding time cos I tire so quickly. Pacing shopping (especially supermarkets) seems so hard! Any tips?

Former Member

Miss_Riot wrote: »

How do you pace things? I find it really really hard - especially because I have to stop all the sodding time cos I tire so quickly. Pacing shopping (especially supermarkets) seems so hard! Any tips?

I don't have ME/ fibro / etc but I do have problems with fatigue quite severely for other reasons. I get my food delivered every three weeks online as it saves me so much energy that I can use to do things I enjoy more than trawling around a supermarket. Online shopping for as much as possible is my top tip.

Former Member

Thing is I love shopping! Even if its supermarket shopping! Using a wheelchair around sainsburys the other day was helpful but my ma found it really difficult to push me around (shes got ME, but its fairly mild atm).

On the pain management course that I went on they were talking about pacing all the time but never actually went into detail. I find getting ready and dressed to go out so tireing at times. It seems to take me forever and I often need help. They did suggest breaking things down into individual tasks and then taking a break between - but how can you do that with getting ready to go out without it taking alllllllllll day?

Former Member

Quick update-

GP has agreed to try me out on Low dose naltrexone. I've got to have a washout period from the duloxetine of a month (which is not fun as 48 hours without medication makes me feel like I have awful food poisoning), but I'm tapering down slowly so we'll see how it goes.

Former Member

good luck!