Hi there. This is the first time I've posted on here - I've been visiting the Thyroid site for quite some time now, and have ignored the fact that I had a diagnosis of what the doctors called ME/CFS in 2007 when my health totally collapsed after being bullied for years. I have treated it as dismissively as the doctors - a kind of side issue. My eye was caught by the ME week banners - and I'm now thoroughly perplexed.
The fact that I have ME is totally ignored by my doctor - and I mean totally. As far as I'm concerned, it's a bucket diagnosis to her. She offers absolutely no help or advice other than painkillers - which either don't work or don't suit me, and I've been left to find my own way through, which is why I've been all the way down the thyroid toute ( although with good reason: I had a total thyroidectomy in '84 and have never really been on top doh since).
In fact, my OH and I have spent all of our small savings on trying to get me better. I've seen a thyroid doctor who withdrew from the register out of sheer disgust and treats privately, a Belgian functional medicine doctor who cost a fortune and with whom I got much better but when the money ran out it was ta tah, and a series of endocrinologists who were either NHS or private again with whom i have fought over my treatment of my thyroid (I take natural dessicated thyroxine) but not one, not one ever over the years, has even alluded to ME.
To say I am defeated is an understatement and I seem now to be right back at square one. Feeling weak, exhausted at the slightest stress or over minimal activity, in pain all the time although the intensity varies, mentally tired - I watch TV during the day because I get too tired to read ... is this it? Is this my life?
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Schenks
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Just to add that I was sent to a ME/CFS group in 2007 - it was useless. The only thing recommended was graded exercise - which I can't fathom since any activity can cause collapse and I can't tell which activity tips the balance, it's so variable, and pacing - ditto. It was a group format for 7 sessions and it no longer exists.
Hi Schenks, have you come across Hyperbaric Oxygen Therapy? I run a Multiple Sclerosis Therapy Centre. One of 50 independent MS Therapy charities around the UK. Most of them do Hyperbaric Oxygen Therapy and the doors are open not just for people with MS but for a wide range of conditions. Ours is in Letchworth, Hertfordshire. We treat people with MS/CFS/Fibromyalgia - it often - but not always - increases energy levels. If you are interested to find out a bit more you are welcome to contact me at markboscher@hmstc.net or 01462 684 214. If you tell me which town you are near I can tell you where there is one of these MS Therapy Centres that do Hyperbaric Oxygen Therapy in your part of the country.
Brilliant - though scarey! Thanks Mark, will do. I live near Fleetwood in Lancashire - they do training for the men who work on the platforms at sea, so I wonder if there is one nearby. And can you get treatment on the NHS? I will call you, though, thanks.
Sadly this is not available on the NHS. You are very welcome to call me. Just in case anyone else is interested, people can search online for their nearest MS Therapy Centre at this link msntc.org.uk/centresearch.php That way other people can find out if there is Hyperbaric Oxygen Therapy near them too.
I am somehow not surprised that doctors have ignored your m.e diagnosis and you are correct in that it is often seen as a dustbin diagnosis. It is a very real illness though and symptoms are often misdiagnosed as other illnesses.
I had m.e diagnosed before I was found to have Hashimoto's and it took me 10 years to find I wasn't on enough thyroxine and start on T3 and adequate T4. Whilst I am now more stable I am not well although can do more than I used to be able to do if impact myself.
Watching TV will drain you as much as reading possibly, at least lots of m.e sufferers find this. Total rest is the only way to restore some energy.
I suppose you have looked into vitamin levels and iron levels? Have you tried a gluten free diet which often helps? Do you think your thyroid levels are at an optimum? Do you think pacing is sufficient?
Like lots of sufferers of m.e, we tend to be left alone to find our own way through this horrible illness. Is there a local support group you could go to to get further help and support?
Hope this reply helps a little. I am sorry you are feeling so bad - I know how bad it can be.
Hi, K, thanks for the reply. I've gone down the thyroid route, like you, and the latest iteration of endocrinologist has been prescribing natural dessicated thyroxine after my having been on Levothyroxine for years and years. I feel somewhat better, but I think it is just dawning on me that this is a disorder all of its own and needs to be tackled as such; thyroxine alone ain't going to cut it! What's worse, she wants to reduce the dose - but that's a whole different LONG story.
So I'm new to the ME route, despite being diagnosed with it and to find that watching TV is as tiring as reading is a surprise; I thought vegging out in front of the box was the closest to resting I could get without lying on my bed with my eyes shut feeling anxiety! How do you totally rest and what kind of things impact you, if you don't mind my asking?
I'm gluten free, for the most part (occasionally if we go out for lunch I might have a sandwich), have optimised my vitamin levels and there is no blooming local support group, according to the newly-doiscovered ME site I found.
I'm going to have to try this pacing lark - I'll have to read it up and try to apply it. It's a bummer though. And your reply has helped - I'm not so unusual, nor am i a malingerer. So thank you.
Everything impacts on me although not as much as it used to do fortunately. If resting I may watch some TV but too much is just as tiring as reading or anything physical. You could try listening to music or a talking book, meditating, and definitely try to find out what is causing your anxiety. I know feeling ill can make you feel anxious and/or being over or under medicated. Alternating between doing something physical and something mental is good but try to stop before you feel too exhausted.
M.E is a seriously debilitating illness which doctors don't tend to take seriously so it's really up to you. Could you advertise through one of the m.e charities for anyone else in a similar situation in your area? I moved to where I live now 5 years ago and set up a support group. We don't have many come with classic M.E but it still helps to talk to others with similar health problems, even if that is fibromylgia or something else.
Good luck and if you want to know anything else please get in touch again.
thanks again - never thought of talking books! Brilliant idea. Not sure what M.E. charities are out there but will look. i've been diagnosed with fibromyalgia too! Never rains, eh?
Action for M.E., M.E. Association, Invest in M.E., M.E Support (Online), and local groups to your area possibly. Also, 25% M.E. Group and ones on Facebook. There are Fibromylgia groups out there too and online.
I'm sure the last thing you want is the expense of another Dr but Dr William Weir, (Harley St ka-ching) 02074678478 is meant to be fantastic he's over the web and people here have seen him and think he understands CFS well.
Mind you I have called and emailed a few weeks ago and am still awaiting a reply!
On the plus side your Dr will prescribe pain drugs mine wont, (even with several damaged disks in my back!!!!)
Hi, Raffs - thanks for this. Can'[t afford a doctor who could help but is a kerchinger, sadly. Still, since we have recently aspired to being and England that is now fully committed to destroying the NHS I won't be alone in this boat! Sorry to hear about your GP. Sounds as ignorant and stupid as the rest of them i have read about (a bit cheesed-off and angry about it all, this morning!)
Hi I have suffered with m.e for around 13 years. It took around 3 years for them to diagnose me. They sent me for intense hydrotherapy and physiotherapy for 1 week which made me a lot worse for a long while. I had to have a lot of time off collage and had to finish in the end as it was too much. I have been on Lyrica (pregablin) for about 7 years and this has really helped me to sleep at night and it relaxes the nerves which eases the pain. I am also on 20mg of citalopram which slightly helps me cope/helps with mood swings. Many dr's don't really take notice when I mention it and nothing new is suggested. I also have vitamin b12 deficiency which also has a tiring effect as my body cannot intake b12 from my diet. I recently went to my new doctor and asked for my injection (3 monthly) and she advised that doctors at this surgery felt it was a "waste of time appointment" and I had to go elsewhere (around 10 miles away) which is not the end of the world but I have a 3 year old and work aswell so finding time and energy to go is a struggle. I told my doctor this but she stuck to her original statement and I had to leave. I am thinking of putting in a complaint but I am not sure.
Hi, l-j; that' shocking that you have to go 10 miles. Aren't there any nurses at the practice where you go? And the practice sounds not too good - are there no better practices or doctors in your area?
There are no practise nurses just the ones that check blood pressure etc, yes I am thinking of changing but my husband still would like to make a complaint (he works for the nhs so it would sound better coming from him). I just feel they don't understand how hard work it is when you have m.e and a 3 year old its so much effort to get ready and get in the car with him etc
i suggest you find a new doctor and make a formal complaint or nothing will change with lazy or ignorant doctors always putting budgets before patients.
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What was your experience at the doctor on diagnosis?
ME research of note: Contrasting ME versus CFS or 'CFS/ME' by Leonard A. Jason et al