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Looking back it was the 'flu jab that started it in November 2016. I was given the jab when I was suffering illness. In February 2017 I began to feel very unwell with no energy, no motivation, burning stomach, night sweats and a pounding amplified heartbeat in my head. I spent most of my time in bed and had my 70th birthday in a hotel in Las Vegas with no prospect of a gamble !
Since then, my unwellness has continued and the roaring in my head continues unabated. Some days I can cope with the symptoms but other days I am totally debilitated and retreat to my bed. I am a keen amateur musician but after a couple of songs I'm back to being almost an invalid. In my life I have always been energetic and retirement has not stopped that, treating my life with zest and extreme happiness but now this has come to an end.
I have seen various specialists, had every test known to the medical world and the conclusion is an all encompassing "M.E." Further, like most patients, I guess, I have extensively researched this condition including the latest from Australia, read medical papers from research done 30 years ago and ,of course, the internet, and the overwhelming conclusion is that very little is known and advice is scanty.
I think now that relaxation, yoga and positive thinking is a way forward....will yourself better. I would welcome any advice on this type of therapy and my heart goes out to fellow sufferers.
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You've not been ill for very long, and people with a short length of illness are those with the best prognosis for natural improvement. Hopefully you will just naturally improve, as most of those who have only been ill for this length of time seem to.
?Prioritising relaxing and trying to have a nice time sounds like a wise response to the difficulties of ill-health. There is a lot of junk science promoting 'positive thinking' as a 'treatment' for health problems. While I think that there are legitimate reasons for intellectually honest positivity in your situation, I'd be wary of seeing pragmatic 'positive thinking' as something which should be pursued. The New York Times recently ran a piece called 'Getting It Wrong on Chronic Fatigue Syndrome?', which might be a useful introduction to the problems with research in this area. Best wishes for everything.
Thank you for your response, Fidd. Whilst I agree that caution should apply to "positive thinking", since there is such a diversity of symptoms and health problems associated with this disease, it would be foolish to rule out any approach. I have spoken to a guy in Inverness who has suffered 2 bouts of CFS and he found meditation and yoga became his platform of "positivity" and this pulled him through.
I have found that sharing info and talking through problems with others is a positive thing.
Hi, Rob--I'm so sorry you have this illness. I think your way forward is a good one. Anything that can keep you relaxed and in a positive frame of mind can only help, especially in terms of coping and reducing stress. I'm your age, and have tried so many supplements and medications. The thing that has helped me most is meditation and mindfulness. Like yoga, these techniques are great for coping an relaxation. One very good thing in your favor is that you've been so recently diagnosed. People can get better, especially in the first few years of ME/CFS. It's especially important to pace yourself and stay within your energy envelope. A lot of research is now being done on ME/CFS, so there is hope for a treatment. I'm especially interested in the work being done by Dr. Jose Montoya, at Stanford.
Thanks for your reply. I get very confused by this illness !! ( who doesn't ! ).
I can never decide whether it is my unwell feeling or tiredness that dominates the symptoms.
When I feel unwell, I feel on the verge of collapse and completely debilitated. I have tremours and often feel my whole body is shaking. High pulse rate especlally in bed gives me a feeling of impending dread and I have to try and relax to bring down my pulse rate. But there aredays when I feel half OK and it is then that the tiredness becomes apparent. Sleep patterns are irregular and night sweats are frequent.
Do any of these symptoms strike a chord with you ?
Yeah, Rob. Those symptoms are very familiar. Regarding high pulse rate--for me, that correlated with rapid heartbeat. My specialist put me on a beta blocker (50 mg metropolol/day), which totally did away with that symptom. A feeling of impending dread can be caused by anxiety, which is totally understandable given all these scary symptoms. Relaxation techniques can help with this. Sleep is a problem for so many of us. I've tried so many meds and supplements. Either they didn't work, or I got terrible side effects. But you may want to explore some of the "gentler" supplements, like Valerian root. When I can't sleep, I just get up and read. Again, pace yourself and stay within your energy envelope. People can get better, and a lot of research is going on. Oh, and a movie is coming out about ME/CFS, called "Unrest." It was put together by a Harvard Ph.D. student--Jennifer Brea. You can Google her very moving TED talk on Youtube.
I've found yoga and guided relaxation to be two of the most helpful things I've tried along with pacing and healthy diet. I have a friend with M.E. who also developed it after having the flu jab. Focus on what you can do rather than what you can't and never give up hope!!!
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