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Rose-Rose-Rose- profile image
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Hi Angela, I had laryngitis last September and never picked up.I could do nothing at first and just survived. lots of pain, very heavy weak limbs and just enough energy to go to the toilet. My doctor gave me nortriptyline to sleep at night and to help stop the spasms, Codeine for the pain,, Advised me to rest as much as I possibly could and said that the more rest you get in the beginning the better your prognosis she told me.I was given baclofen for spasms during the day but that didn't agree with me. As I started to pick up a bit she advised me to pace and rest. I soak my arms in hot water and use heated pads to ease the pain and spasms. I also use ibuprofen 10% rub on gel as advised by my doctor. I have researched and read as many things as I can to help myself and I now use mindfulness, meditation, try to build my energy and not use it all. My energy is still very low, but I can potter for four minutes every hour, and my pain is decreasing. I have spent the last four weeks being busy (Reading/Internet/anything where my mind is working and using energy) and then laying and trying to have a still

inactive body and mind for at least half an hour.doing this has decreased by pain and I feel as if I have more energy (can't get above my four minute time though)I too think that you need to be very cautious about the GETas you really don't want to make yourself worse. Sorry this is been so long. I got a bit carried away. Hope some of this helps, good luck. X Rose

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Angiejenz profile image
Angiejenz

Hi rose

Oh yes how horrible for you I know what it's like, I have had it for years and really didn't know what it was I had many many trips and my ferritin was low so I had a iron infusion last December but feel no different it's difficult to know when I actually got it because I would get low energy for a few months and then it would pick up I have pushed through all the fatigue for years and worked such long hours I won't to a Rumetoligist )cannot spell it)

In 2015 he said it was probably cfs so advised me to get a referral to see a doctor who specialise in cfs at the London hospital for integrated medicine, so was diagnosed last Aug but as I say have it at least 7 plus years

Graded excercise and dietitian I will try any how my appointment is in August.

I am still working, part of me cannot accept this horrible disease, and I still push through it tiredness joint and mussel pains headaches insomnia I take a sleeping over the counter one I really don't like meds and the side affects, I think meds can make one feel worse. I have tried meditation it's pretty good. I will be reducing my hours at work as from next week. Oh anxiety due to my chest and struggle to get my breath. I worry financially as I'm a single mum although my children are older I have l still have bills.

What part of uk are you??

Well my message real long lol

Angiejenz profile image
Angiejenz

Oh and not forgetting my sensitivity to light although I have an eye condition called phepjaritis and causes same symptoms

cwill profile image
cwill

Hi Rose. You sound as if you are making a good job of it! Horrible diagnosis and feels like a total assault on all systems doesn't it? For now I would try to accept the gains you have made and prepare for the next round. Sometimes our bodies simply need us to allow them a bit more time and this is what we are hard time accepting.

I would advise a diary of symptoms with numbers out of ten at set times in the day. I changed so much in the last two years that I find it hard to remember just what staying in bed absolutely all day and doing nothing with all those symptoms was like. This way you can track the changes and spot trends. It makes it easier to see if you are pushing too hard or if you feel a bit settled to try something else. I think a few minutes of activity each hour is a great place to start. Well done!

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