A short sad history of ME/CFS

Trialia

sunnyone wrote: »

Lucky?

How do you work that out?

...Lucky isnt a word that anyone uses about be.

Well, now it is; if your HMS was not that bad before you got yourself smashed up, you were lucky with it, because mine is and I haven't had that happen to me. Mine is that nasty all by itself; I'm told I'll probably be in a wheelchair before I'm 40 because my joint instability is so bad - and this is without your additional injury. I don't think that you're lucky for having that, but with the HMS being as it was originally for you? That was.

sunnyone

Trialia wrote: »

Well, now it is; if your HMS was not that bad before you got yourself smashed up, you were lucky with it, because mine is and I haven't had that happen to me. Mine is that nasty all by itself; I'm told I'll probably be in a wheelchair before I'm 40 because my joint instability is so bad - and this is without your additional injury. I don't think that you're lucky for having that, but with the HMS being as it was originally for you? That was.

So you have a crystal ball that can tell you how my health would have been without the crash than?

Thats some talent, you could make a fortune with it:rotfl::rotfl::rotfl::rotfl::rotfl:

Trialia

sunnyone wrote: »

So you have a crystal ball that can tell you how my health would have been without the crash than?

Thats some talent, you could make a fortune with it:rotfl::rotfl::rotfl::rotfl::rotfl:

Now you're just being facetious. I said how your health was, not how it would have been.

Welshwoofs

I have to say that I didn't encounter the old 'are you depressed?' issue when I had ME.

I got it off the back of an ear infection (labyrinthitis) and initially it confounded the GPs as more and more symptoms started to surface - muscle pain, fatigue, insomnia, light/noise sensitivity, disequilibrium, sudden allergic reaction to foods I'd previously been fine with, headaches, vertigo, sudden nausea etc etc.

I saw a neurologist, endocrinologist and a rheumatologist and none could identify what it was, all they could do was state what it wasn't. I was in a high-flying job and exhibited none of the indicators of depression, quite the opposite in fact - I was extremely motivated to get rid of whatever it was. Eventually ME was diagnosed when everything else had been ruled out - the only thing they did find was that I had extremely low Magnesium levels and I didn't seem to 'hold' it well.

I got ME into a managed state in a year by regular visits to a private ME specialist, giving up work, moving out of the city to a non-polluted rural area and eating entirely organic food. I also had Magnesium/B12 intra-muscular injections weekly.

It's now very rare I have a flair-up, but when it happens it's because I've over-done things or I've been in a polluted environment for some time (I start getting headaches, muscle pains within 3 days of being in a city).

My experience of diagnosis and treatment of ME was very positive, but I'm guessing like most things in health now, it's a real postcode lottery on the NHS. I was lucky, I had substantial private health funding and they made no assumptions about my mental health.

mardatha

Absolutely spot on clouty - superb post ! :T:T:T I have been on this road and through all the hoops and obstacles as well. I will not let my gp suggest I'm depressed because I'm not. He keeps asking if I feel down or suicidal and when I asked him if maybe HE was, because he talks about it so much, then he stopped
I woke up one morning tired out. And it never went away. No illness no warning, no nothing. And like SingleSue, I had scoffed at yuppy flu. I can mind once saying "if they had to get out and work a 12 hr shift like I do, just to pay the rent, then they wouldnt have time for yuppy bloody flu" . Well. Karma exists eh !
ME is a hell of a lot more than tiredness. It's total exhaustion; its living your life in a fog of half deadness; its hating noise which includes your grandchildren; its being unable to GO anywhere.
I am a bit nastier than most of you though, when I had a consultant or locum say to me that they didnt believe in ME, I stared them right in the eye and said - and MEANT- "well I honestly wish, hope, and pray that you get it ". And I still do.
I know. I'm bad. But I enjoy it so much :D

Trialia

mardatha - fibromyalgia is very similar to ME in a lot of ways, one of which includes reactive fatigue, and back when I was first starting to get physically ill I remember doing two eight-hour shifts in two days, and needing a whole week to recover from them. Horrible feeling. Now, of course, I can't even do that. Drives me nuts because I know I used to be able to.

Also, I can't argue the depression thing with my GP because I was already diagnosed with depression before I became ill - which is not a surprise when you're a teenager and your mother and best friend has just died, no? The problem I have is getting them to listen to the difference - my fibromyalgia is secondary to my HEDS, not to my bipolar depression. Sigh! =P

vivatifosi

I've found this thread interesting and sad at the same time.

I was really lucky. I was diagnosed with ME in the early 1990s. I'd had bouts of varying severity over a number of years, triggered by an infection in 1984 (I caught amoebic dysentry which was not correctly treated and led to amoebiasis). Typical bouts would leave me able to work 4 days per week if I submitted myself to rest the other three, though my worst bout ever was also the most scary. I woke up one day totally unable to move any part of my body except my eyeballs and I couldn't speak. Thank God that's only happened the once. I laid in bed for hours and had to force myself not to stress as it wasn't until I could get my stress levels down that I could get the feeling back in my body and reach the phone literally a stretch of the arm away. For years I had trouble with stairs. Both walking up and down was a real challenge.

Now though I am practically symptomless unless I push myself too far.

For this I must thank my sadly now passed physician Dr Franklin, from Chelmsford. In the early 1990s I was able to get treatment on my private medical insurance, underwent a treatment regime (it still took a few years) but now I'm more or less fine. Its so depressing to read that it is so hard to access treatment now. I was very lucky and its so depressing to hear from others that they are not taken seriously. Both my GP and my consultant were both very supportive.

I've found this thread very enlightening. I don't tend to hang out around ME threads because I like to keep it in my past, however reading Welshwoof's post (which I wish I could thank 3 times) was such an eye opener because if I made a ticklist for my own diagnosis it would be practically identical. I've become severely allergic to foodstuffs that I could previously eat, very unable to retain magnesium and I still get light sensitivity that makes some wonder whether I'm epileptic.

clouty

Thank you for telling your story, Vivatifosi. I'm glad to hear you were able to access the advice and treatment you needed to get you to a functioning level.

IMHO it's appalling that these days the NHS does not offer more than CBT and Graded Exercise Therapy, which is pretty much sure to make CCC ME people worse, when there are treatment regimes (nutritional supplements, LDN, herbal anti-virals, antibiotic therapies etc) that can help control the disease (not a cure, but a management system) especially in the early stages. Unfortunately, you can only access these (with a doctor's supervision) if you have the money to go private, and can find one of the the few doctors that understand this disease.

One of these private doctors, Sarah Myhill, has recently had her licence to prescribe recinded by the General Medical Council, on the back of a single anonymous email. Mind you, they have been gunning for her for years. Her website is a source of information for us, but it is not to be swallowed whole. Some of her recommendations are not suitable for following without supervision. However I know (online) several PWME who have benefitted from her advice.

The crazy thing is that effective symptom management has to be cheaper than supporting a quarter of a million PWME in their disability.

The other mad thing is the amount of control Simon Wessely and his cohort, who wish to stifle research into the cause and cures for this disease, have over the media.

Welshwoofs

clouty wrote: »

One of these private doctors, Sarah Myhill, has recently had her licence to prescribe recinded by the General Medical Council, on the back of a single anonymous email. Mind you, they have been gunning for her for years. Her website is a source of information for us, but it is not to be swallowed whole. Some of her recommendations are not suitable for following without supervision. However I know (online) several PWME who have benefitted from her advice.

Sarah Myhill was the doctor who I was under for treatment. I was absolutely astounded and dismayed when she was struck off for what appears to be a witch hunt by people who refuse to think 'outside the box'.

Myhill looked at my problem holistically instead of throwing endless drugs at me to patch symptoms or writing the entire thing off to depression. She was the one who did the bloods which exposed my low Magnesium levels and my poor ability to retain it.

Today my life is massively better. I'm back at the career level I was (higher, in fact), yet with a far better lifestyle and work/life balance. I feel healthy and my knowledge of my limits is such that I can almost always avoid reoccurances of the ME. There is no doubt in my mind that I have Sarah Myhill to thank for that.

vivatifosi

clouty wrote: »

The crazy thing is that effective symptom management has to be cheaper than supporting a quarter of a million PWME in their disability.

I've been mulling over this point for several hours. Since my treatment in the early 90s, paid for by the private sector and undoubtedly costing several thousand pounds, I've been lucky enough to work. I've therefore earned several hundred thousand pounds in the 20 years since, but equally have not had any need for state funding in terms of say, DLA, IB or other benefits. You're right. The savings are huge. It is so shortsighted.