It feels a little unreal sometimes, being on a forum for ME/CFS sufferers. Almost as if I shouldn't really be here at all.
I don't have any discernible cognitive problems, and I can't pin down a specific virus that would be the key time when my symptoms started. It was more of a gradual realisation that something wasn't right, and that it was getting worse.
I did have helicobacter pylori though, which seems to have a very similar bunch of symptoms. After having treatment everything seemed OK, but it came back and had to be treated a second time.
And, although I feel OK most of the time, that's because I'm taking it really easy. If the fortnightly shop (someone else driving) and a walk to the doctor in the space of four days wear you out, something's wrong. Add the bug (or just reaction to something) that starts four days of nausea and not eating, losing over half a stone, after already losing 2 in the last year or so, and there are some pointers to ME (or something) still knocking around.
Since then, it's been a gradual process. I was made redundant anyway, so I don't know at what point in the last year or so I'd have had to give up, but I know I couldn't go out and work now, so it was definitely when rather than if.
Anyway, to the point.
I saw a specialist a few months ago, and he said he had no doubt it was ME that I had. I'm in the UK, so for me this was a validation of what was happening, though I knew there was something all along. It was my set of three suspects (ME, Lupus, Fibro), and badgering the doctor that got me that far.
A couple of days ago though, I asked while at the doctor's (GP), what was actually on the letter, and it was Chronic Fatigue Syndrome. Which combined with the GP rolling his eyes when I asked him about possibly having POTS pretty much nailed the lid on any NHS help I'm likely to get (or trust). I called the hospital about opting in to CBT/GET late (not that I'd have gone), but they never got back to me.
So I'm taking a step back, having a think, and then planning my own way to a healthier future. Hopefully.
I'm going to do some more research first, but a rough plan from what I know so far would be:
1 - Look into private SPECT scan testing, and who offers it. Make sure they know about ME and what they should be looking for.
2 - Keep track of everything I eat, and find the thread here that has a huge first post all about the gut (should have bookmarked it).
Make sure diet is healthy, and anything that gives signs of possibly triggering symptoms goes on a black list.
3 - Depends on 1, but maybe XMRV test.
(Not exactly comprehensive, but it is a work in progress)
As part of another thread I was discussing the names of ME/CFS/CFIDS, and what a mess it is. In the UK, CFS may as well be MCL* for the good it does you getting treatment, benefits, or any help of any kind.
These points are likely to change, but the SPECT scan is based on the diagnosis info on the Hummingbirds site (Dr. Hyde's reasoning that without a SPECT he won't give a diagnosis of ME), and the food thing is pretty self explanatory.
So any opinions on these ideas would be appreciated.
*Monkey Chipmunk Llama
I don't have any discernible cognitive problems, and I can't pin down a specific virus that would be the key time when my symptoms started. It was more of a gradual realisation that something wasn't right, and that it was getting worse.
I did have helicobacter pylori though, which seems to have a very similar bunch of symptoms. After having treatment everything seemed OK, but it came back and had to be treated a second time.
And, although I feel OK most of the time, that's because I'm taking it really easy. If the fortnightly shop (someone else driving) and a walk to the doctor in the space of four days wear you out, something's wrong. Add the bug (or just reaction to something) that starts four days of nausea and not eating, losing over half a stone, after already losing 2 in the last year or so, and there are some pointers to ME (or something) still knocking around.
Since then, it's been a gradual process. I was made redundant anyway, so I don't know at what point in the last year or so I'd have had to give up, but I know I couldn't go out and work now, so it was definitely when rather than if.
Anyway, to the point.
I saw a specialist a few months ago, and he said he had no doubt it was ME that I had. I'm in the UK, so for me this was a validation of what was happening, though I knew there was something all along. It was my set of three suspects (ME, Lupus, Fibro), and badgering the doctor that got me that far.
A couple of days ago though, I asked while at the doctor's (GP), what was actually on the letter, and it was Chronic Fatigue Syndrome. Which combined with the GP rolling his eyes when I asked him about possibly having POTS pretty much nailed the lid on any NHS help I'm likely to get (or trust). I called the hospital about opting in to CBT/GET late (not that I'd have gone), but they never got back to me.
So I'm taking a step back, having a think, and then planning my own way to a healthier future. Hopefully.
I'm going to do some more research first, but a rough plan from what I know so far would be:
1 - Look into private SPECT scan testing, and who offers it. Make sure they know about ME and what they should be looking for.
2 - Keep track of everything I eat, and find the thread here that has a huge first post all about the gut (should have bookmarked it).
Make sure diet is healthy, and anything that gives signs of possibly triggering symptoms goes on a black list.
3 - Depends on 1, but maybe XMRV test.
(Not exactly comprehensive, but it is a work in progress)
As part of another thread I was discussing the names of ME/CFS/CFIDS, and what a mess it is. In the UK, CFS may as well be MCL* for the good it does you getting treatment, benefits, or any help of any kind.
These points are likely to change, but the SPECT scan is based on the diagnosis info on the Hummingbirds site (Dr. Hyde's reasoning that without a SPECT he won't give a diagnosis of ME), and the food thing is pretty self explanatory.
So any opinions on these ideas would be appreciated.
*Monkey Chipmunk Llama
