Updated: Jul 12
I've seen a-lot of posts and articles about people getting mild covid-19 and months later still having symptoms. It may not be ME/CFS but I think a-lot of pwme can understand what they are going through. I thought I would just make a little post about things that have helped me with my fatigue and muscle aches, which people with post viral fatigue may find helpful as well as people with ME/CFS.
I got ill after getting chicken pox 7years ago, I just never got better and two years later I was diagnosed with mild ME/CFS. I was told when I first got diagnosed I would have to greave for the life I had, at first that was hard to hear but now I think I get to start a new life and see where it goes, so far i've gone very creative.
They are rolling out support and treatment for 'long-haulers' and I hope they may cross over help and support for people with ME/CFS which was caused by a virus.
"You don't need to see the whole staircase, just take the first step" Martin Luther King jr
What I use Daily/Weekly (remember only do what you can and I am no doctor these are just things that I have found helpful in improving my health).
Do 80% of what you can do, (DR Sarah Myhill).Pacing is the main thing people are told, even if that means just sitting up in bed for 1min a day or walking for 30mins instead of 1hr. Everyone is different and you need to adapt to you.
Epsom Salts Baths, if you can add muscle relax bubble bath go for it. (see picture)
Digestive Enzymes, this might not be for everyone but if your body is having problems digesting these will help and save energy. (see picture) I also take a multi vitamin every morning.
Magnets, instead of acupuncture I have these pointed magnets with plasters to put on the pressure points and can be worn all day. (see picture)
Meditation- ME/CFS and PVF are not anxiety or 'all in your head' but meditation helps calm your nervous system. I only do 5mins every other day, believe it or not but doing it for too long can actual be tiring. I've also started mindfulness and it helps ground me when I do get anxious about my symptoms.
Stretching/Movements- slow small basic movements and stretching helps but you have to go with what you feel you can do. I started by practising getting get out bed and that's it. I would just sit at the end of my bed and stand up then lie down again etc. I would just gently stretch my body in bed, really slowly and not over do it.
Diet/Sensitivity, again this might not be for everyone but I have seen improvement in eating better (but them I did have a rubbish diet so there is no great surprise) I did have a test done to see what food I may be sensitive too which also helped.
Breathing exercise, this is new to me and something I have started with my physio and have learnt I don't really breathe right.
Sleep Hygiene - Going to bed and getting up at the same time everyday, no screens an hour or so before bed, blue light glasses (see picture). I went to a sleep therapist which helped look at my sleep and how much I should be sleeping, it was really hard at first but it has really improved my sleep. I eat kiwis before I go to sleep. I am not sure if this really works, but it's meant to help with getting you to sleep.
Do one thing you love, mine is being creative, being ill can be hard some times and I felt like I lost a-lot of things but I started making cards for friends and family and now I have my little business. (It wasn't easy, I wanted to give up many times as my body didn't like it).
Rest, Restore, Recover (CFS Health is an online programme run by Toby who had CFS, they have loads of youtube videos with lots of information and definitely worth a look.
Also listen to your body, the most important thing!! LISTIN TO YOUR BODY.
"I am allowed to do one thing at a time, Step by step"
I am currently working with a physio looking at my symptoms and working out how to improve. Before lockdown I started acupuncture but during lockdown I've been using magnets to place on the pressure points, they are little pointed magnets attached to plasters, it's still early days but when I have them on I don't feel so sluggish. We are also focusing on my lungs and breathing. Im using a power-breathe to strengthen my lungs, again this is early days so will keep you up dated.
I know the Covid-19 Long Haulers don't have ME/CFS but they could develop it and now that people are looking into what happens to the body after a virus, it could help find treatments for people with ME/CFS and doctors might take it more seriously. I hope Long Haulers get the help they need and recover. Someone on twitter said they couldn't believe you could be healthy and fit, get a virus and never recover. Well for some people with ME/CFS that is what happens. Most people would have had an active life with a full time career before getting ill.
If you are newly diagnosed with ME/CFS please visit Action For ME, ME Association and look up CFS Health. Also Instagram has been amazing, so many people with ME are on there and share information, some great ones are @chronicfatigue_me_kate @alexhoward.tv @cfshealth @chronic_fatigue_and_me @spoonie_village there are so many more......
I hope this is helpful, like I said at the start these are just little things I have found helpful. if anyone has other things that have helped add them in the comments or on my instagram post.