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Old 2 Apr 20, 09:08 PM  
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MargaretMouse
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Cfs/me

Does anyone have chronic fatigue syndrome or another word is ME. I have just been diagnosed with this today and wondered what your experiences are and if you had any help , the doctor I spoke to today said he was referring me to rehabilitation, I wondered what this meant. Hope I might hear from someone who has this condition as it all new to me.
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Old 2 Apr 20, 10:52 PM  
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Fenland girl
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Hi MargaretMouse,

Sorry to hear about your diagnosis, but just to say you are not alone. I’ve had ME since 2002 - I’m very happy to help with any questions or queries you may have. Feel free to PM me if you would prefer.

When I was first diagnosed I was off work for five months and was unable to walk/talk for much of this. Now I am back to work full time, and whilst I have relapses I have learnt how to manage the condition.

As you have just been diagnosed, the best advice I can give you for now is to keep a diary, as best as your condition will allow you to do (if you are too tired to do it, don’t push yourself). If you can, write down everything you eat and do (including the times). You will start to notice patterns and cause/effect.

The ME Association has some really good advice and techniques to try, as well as having specialists that you can have access to. One of the annoying things about ME is that, other than the over whelming sense of exhaustion, symptoms differ person to person (I personally constantly feel like I am coming down flu, and can’t cope with noisey places like pubs, parties, busy meetings, etc and when my ME is bad I ache too much to get out of bed and get “brain fog” and struggle to string together a coherent sentence), therefore what works for one person may not work for everyone.

However, one technique that does seem to have a greater level of success for a wider number of sufferers is the pacing technique. The ME Association website can give you lots of advice on this and give you some tips to try. It works on the basic principle that you are a battery with so much energy and you have to decide how to use that energy each day - this is where keeping the afore mentioned dairy is helpful as it helps you work out what you find most draining.

Diet can play a big factor too. Not long after I was diagnosed I went to see a nutritionist. I was put on a very strict diet and had to take supplements. High dose age vitamin B and high doseage Co-Q10 are recommended (be warned the Co-Q10 is expensive) and are readily available in health food shops are large well known online retailers.

One word about ME and the current Coronavirus situation. Your immune system is likely to be weakened - recent studies have show that people with ME have weak but over active immune systems. Therefore, you maybe more susceptible to getting the virus, but your body will likely put up an abnormally strong fight against it. This fight would likely exacerbate any ME related tiredness/aches/brain fog. Therefore, although people with ME are not currently listed as vulnerable, the ME Association is advising ME sufferers to stay home and is lobbying the government to add sufferers to the list of vulnerable persons.

I hope the above helps. Please feel free to PM me if you’d like to chat more about this condition,

Karla
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Old 2 Apr 20, 11:46 PM  
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scottish mama
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I also have ME, as well as fibromyalgia. Was diagnosed in 1997 after 2 years of symptoms, but please don't be worried that this a life ever after diagnosis,as I have also had long periods of remission within this time.
I'd agree with everything Fenland Girl has said, and am also happy for you to pm me. As well as pacing I'd recommend the spoons theory- you start with a given number of spoons and take one away for each activity you do, helping you visualise the need to ration your energy. I also use coins and know if I overdo things I'm bankrupt so need to rest to replenish my stocks.
There is a big mind shift required to stop yourself from thinking you are lazy, when you are actually completely exhausted, and be aware that trying to look and appear well to others is also really exhausting.
Take care
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Old 3 Apr 20, 09:28 AM  
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Jennywren
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Hi MargaretMouse
I echo everything that Fenland Girl and Scottish Mama have said, I have been living with ME/CFS since the 1980's, but was only officially diagnosed in 2005. One of the most helpful things that I found was something my GP said - you will need to forget what you used to do and become a new version of yourself MargaretMouse 2, as you learn to adjust to what you are now able to do without over taxing yourself.
You will have good and bad days but you need to keep something in reserve and not overdo things on your good days (believe me the temptation will be very strong to do this).
As well as the ME Association, Action for ME are also very good and both organisations publish regular newsletters which I find very helpful. Good luck with you information finding and adjustments, but most of all please, please be kind to yourself and take care.
I too would be very happy if you want to personal message me about anything. Good luck.
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Old 3 Apr 20, 09:46 AM  
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JudeB
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Hope you don’t mind me jumping in to your thread. I’m in the process of being diagnosed too. The Neurologist said he thought it was CF and recommended the pacing method. I’ve since had an MRI and was due to see a cardiologist at the end of April just to rule out any heart issues (this will be postponed now due to COVID). All the advice above is very helpful, thank you. A new normal is something I have to get used to.
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Old 3 Apr 20, 11:13 AM  
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I won’t repeat all that has been said, just the thing that has helped me most, and it was a physio that got me on a great path after 10 years of struggling, having been diagnosed in the 1986 with “Yuppie Flu!”

I lost my career in Banking and I was a mess. Then I discovered Pacing.

It changed my life. Initially 10 minutes of something, followed by 50 minutes of nothing. At that time nothing really was nothing, no TV nothing.

For my self esteem those 80 minutes of “something” changed my outlook on life.

Gradually increasing that activity time got me back to be a fully functioning(almost) human.

I took accountancy exams, now run my own small business, took over the running of our family business after my Father died, Plus work in a school exams office.

I still have it, aware of Fibro on a daily basis, and recognise the signs at the start of an M.E. Downward spiral. Immediately back on the pacing to help me keep a grip on normality.

It’s not easy to live with all of the time, but you can get a grip on it and not let it ruin your life. I did think that for 10 years, and didn’t see a future ahead of me that I would have been happy with. I was wrong.

Remember Bad days do pass.
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Old 3 Apr 20, 09:52 PM  
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MargaretMouse
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Thanks so very much, for all the replies, I have been so tired and drained today and really don’t have the energy For much at all. I think the hardest thing is trying to explain, to my husband and family as I don’t think they understand.
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Old 3 Apr 20, 10:33 PM  
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pinkbelle
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Originally Posted by MargaretMouse View Post
Thanks so very much, for all the replies, I have been so tired and drained today and really don’t have the energy For much at all. I think the hardest thing is trying to explain, to my husband and family as I don’t think they understand.
I totally understand your feelings on this, the spoons theory, mentioned above, is what made my husband “get it” I will see if I can find the information I had from many years ago.
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Old 3 Apr 20, 11:14 PM  
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MargaretMouse
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Thanks so much, that will really help.
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Old 8 Feb 22, 07:18 AM  
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Alien
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Old topic but I wonder if anyone have tips to add? After over year and half of debating if I have long covid or not I was diagnosed with CFS

Still learning but I like the 10 minutes on 50 off tip
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