h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I have not been diagnosed with CFS, but I seem to be showing all the symptoms. My doctor has been good about getting blood tests done to eliminate diabetes, thyroid etc. etc. and all the tests have come back negative i.e. there's nothing wrong with me.

But I am SO tired. All the time. A few years ago people would say things like "I don't know how you keep going so long, you have the energy of someone half your age" and similar remarks - that has all gone now. All I want to do is sleep. But I don't. Not I don't sleep, I don't want to sleep. I can sleep alright, I can sleep through a whole party going on around me but I do not want to sleep that much. I want to be up and doing - but I can't and I am at the end of my tether. I still work, night shifts, but that is all I do, work until 0600 and sleep through until about 1800, get up and eat and back to work at 2200 - 6 days a week, and on Sunday I just sleep the day away before returning to work at 2200 that night.

My daughters are concerned for me, and one of them came up with a piece off the internet about CFS, so I turned to H2G2 to see what they come up with and the one or two articles I have found have both seemed to link CFS with ME. If that is the case - I am scared.

I don't want my life to be over yet - is there light at the end of the tunnel, or is this is from now on?

Universal Granny

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I'm just someone with ME/CFS, not a professional or anything so I can't help too much with the diagnosis. It sounds like you are getting good help from your doctor doing the tests for you. One thing with the thyroid, my mother was getting very tired and she was beginning to think she was getting ME too, but it turned out to be thyroid that didn't show up on the normal blood test. I'll ask her about that in the morning to clarify (and check I remember it right).

Even if you are getting ME there is light at the end of the tunnel. There is more and more research being done about the illness, and even now people get better from it. I have been very severely effected by it, but since starting with Raymond Perrin and Andrew Wright I have been gradually getting better and have had improved still more just lately.

If you can't find out what you have then you could always give Andrew Wright a ring and get a phone consultation, he's an incredibly knowledgeable guy and may well be able to help.

John

Hi John

Thank you so much for replying, I was beginning to give up!

I was interested in your comments about your Mum's thyroid. I live with an under-active thyroid sufferer, and my symptoms are exactly the same as hers were 5 years ago. Apart from the tiredness, she used to get "elephant skin" on her feet and so do I, and other smaller symptoms of thyroid. How did they diagnose your Mum then, if it did not show up on the blood test?

How do they diagnose ME in the first place. I don't think there is a blood test for it, is there? My doctor IS very good, but even he is beginning to draw a blank and I feel he is naming ME as a possible because he can't think of anything else!

I went to your space and had a look through some of your writings there, and they are very helpful, especially the relaxation techniques. Someone has already seeded the idea of Tai Chi in my mind, and our local adult education brochure has just come out, so I was going to look for a class to go to.

I am 56 and have had to bring up two daughters on my own since they were 3 and 5 (they are now 31 and 29 and have both made me a grandmother!). I often worked 24/7 to make the ends meet, but although I would be tired some of the time, I could go from 0600 until 0100 with no problem, and just 5 hours sleep before getting up and doing it all again. See previous posting for my current lifestyle! A bit different eh?

I understand what you say about "counting your blessings" but my mindset is this: I did not want to have to bring up two children singlehanded and it altered my life drastically to have to do it (don't get me wrong, I wouldn't have done it any other way, but the situation was rather thrust on me when their Dad just upped and walked out). It has meant that I have had to work for the whole of my life, and to some extent harder than most who have a 9-5 job, and I was looking forward to an active retirement enjoying my grandchildren and catching up on all the things I couldn't do in the hard years. But now I can barely get out of bed, and one visit from only one grandchild is a joy, but lays me out for hours.

I'll stop now. But if you could find out the answer to the thyroid question, and how ME is diagnosed I would be most grateful and will stop pestering you after that.

Thank you very much, John

Take care Universal Granny

I was diagnosed first by a process of elimination, my GP knew the symptoms of ME and they matched mine, then she ruled out anything else it could be and was just left with ME. Ray Perrin had a physical diagnosis, pressure on certain points on the body was painful to me, showing that I had blocked lymph there. I also had a slightly pigeon chest, which put pressure on my lymph pump, and rounded shoulders which put pressure on my sympathetic nerves.

I have just talked to mom, she was saying that blood tests are very dodgy for diagnosing thyroid problems, even her GP said that. She was diagnosed on symptoms, one big one being a low resting temperature, she was cold even on warm days. There is a very good book about this called: "Solved: the Riddle of Illness" http://www.amazon.co.uk/exec/obidos/ASIN/0658002937/ref=sr_aps_books_1_1/026-8280408-9195611

I hope this helps, and feel free to ask anything else.

John

Thanks John, you've been a real help.

I am on a week's leave from tonight, and intend to try and get to the bottom of all this during that week (not sure if it can be done in the time, but no harm in trying).

Hence I will not be on line for a week or so because I use the works computer, so don't think I'm ignoring you (or, depending on your point of view, enjoy the rest!), and I will let you know what happens when I get back.

Thank your Mum for me, and I will be attempting to find the book you recommended.

Take care, John Universal Granny

If you have aeven a slightly subnormal thryoid, for goodness sake get it sorted out before allowing any doctor to write you off as having ME/CFS. Too many people are wrongly diagnosed just because a GP or consultant couldn't be bothered to rule out the most obvious conditions. I've known people diagnosed with ME/CFS, who later discovered (after seeing yet another doctor) that they actually had carbon monoxide poisoning, Lyme disease, mycoplasma infection, coeliac disease, brucellosis, MS......

Some doctors (including sympathetic & competent GPs and rheumatologists) sometimes consider Chronic Fatigue (may be written up as Tired All The Time), Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME)to be more or less the same condition.

However, this is a big mistake. Yes, all 3 conditions do have tiredness in common, but they're different sorts of tiredness, not the main synmptom of ME/CFS, and it's on a par with calling cancer "chronic wasting disease".

A lot of people with CFS and/or ME would describe pain (frequently from muscle spasm or nerve pain) as being a bigger problem than the fatigue. Understandable when the pain they live with can be equal to that of somebody with cancer or full blown AIDS.