First Steps to recovery.

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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
 

Jody

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blackbird,

I can definitely sympathize with what you've gone through and where you are now.

The only thing I can comment on is the idea of checking out the foods you eat.

I don't think my illness started because of food sensitivities. I never used to have problems there pre-CFS. But since I got sick I have some significant sensitivities now. Getting them mostly under control has a great impact on whether I will feel ill or .... not well maybe but at least better.

So it's certainly something worth your while to check your food.

I have to stay away from grains, and sugar in general. I do well on a low carb, high protein and high fats diet. If I stray from that too long I get physical and cognitive symptoms that are quite severe.

Diet is definitely a good place to start.
 

Jody

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I should add, some supplements might be of help.

I take omega 3 oil, which helps with joint and muscle pain, and cognitive difficulties. It didn't make a quick difference, but I notice regression if I am not taking it for more than a week at a time. Back on it, within days I am improving again.

I take 10,000 IUs of Vit. D3 a day, and it helps with POTS and OI in general, and brain fog.

I'm sure there are others that may be worth looking into.
 

fresh_eyes

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Hi blackbird. Your situation over in the UK is truly horrifying. I thought it was bad in the US! But with you guys it's kind of going over the line from medical negligence to an outright human-rights abuse.

I agree with Jody about diet; mine is much like hers, plus gluten-free. I think the gut thread you're talking about was started by Catseye - maybe that will help you find it. :)
 

Jody

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Fresh eyes,

I'm glad you're having success with the diet. Mine helps me so much. :)

blackbird,

There's another thread you might want to check out, here's a link starting at page 2 http://forums.aboutmecfs.org/showthread.php?t=241&page=2

I think you may find a number of different threads that deal with this subject -- they're pretty much all over the place, so a bit hard to track down. But I think you may find quite a bit on the subject, just will take a bit of hunting. :)
 

flybro

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Hi blackbird

Whats the chances of you being able to go back to your Dr and say you think it MS.

Your Doc will know there is a lot of confusion here in the UK between CFS & MS.

The point being you may well be able to get the scans done if you are sent to a neurologist for possible MS.

You may be able to insist, especially if you hav'nt been diagnosed by a specialist in CFS.

Let them rule MS out first, at least then you'll be able to get the scans.

ppl with MS have also tested positive for XMRV, I can't remem the numbers though.

Jody might remeber.

Hope this is of some use.
 

Jody

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Hi blackbird

Whats the chances of you being able to go back to your Dr and say you think it MS.

Your Doc will know there is a lot of confusion here in the UK between CFS & MS.

The point being you may well be able to get the scans done if you are sent to a neurologist for possible MS.

You may be able to insist, especially if you hav'nt been diagnosed by a specialist in CFS.

Let them rule MS out first, at least then you'll be able to get the scans.

ppl with MS have also tested positive for XMRV, I can't remem the numbers though.

Jody might remeber.

Hope this is of some use.
flybro,

I appreciate your vote of confidence, but I'm afraid I'm not familiar with those particular numbers.

Wish I were though. :)
 
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I think the gut thread you're talking about was started by Catseye - maybe that will help you find it. :)
It should indeed, I thought it was meandthecat, so no wonder I couldn't find it again.


I forgot to say in that first post, I searched the forum for "spect scan", and from the results of that found that:

3 members have had one.
2 members may have had one.
1 member knows someone who's had one.

Not accurate of course, as they are just the ones who've actually mentioned it, but it'd be interesting to know how many here have a solid ME diagnosis via SPECT scan. In fact whether the SPECT scan results are seen as a solid diagnosis would be interesting too.
 

Kati

Patient in training
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Re: Spect Scan

I agree with getting a spect scan done, however is the radiologist able to read it - is the question.

Heck neurologists, endocrinologists, even perhaps infectious disease doctors don`t know what to do with us.
 

Jenny

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Hi Blackbird

I'm getting treatment from a private clinic in the UK. Do email me if you would like details.

Jenny
 

Countrygirl

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Treatment from a UK clinic



Hello Jenny,

I am interested to see that you are receiving treatment from a UK clnic. I also live in the UK and would be very interested to learn more, if you feel happy to give further details.

Thanks Jenny.

To all,

I have been one of this wonderful forum's grateful 'lurkers' for the past few weeks. You have all, unknowingly, helped me through a horrible relapse. Thank you everyone. I have, however, developed a new symptom after fighting this horrible lurgy for 30 years - an obsessive/compulsive addiction to the P.R. Forums. Is it treatable?

Cort.....you are doing a marvellous job. Many, many thanks for all your hard work.

Best wishes to you all

Countrygirl

P.S. I have never posted before.....anywhere! This could end up on the back side of the moon...here goes....
 

Jenny

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PM

Countrygirl

I've just tried to send you a private message. But it doesn't seem to be in my sent folder.

Let me know if you've got it.

Jenny
 

Countrygirl

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Thank you, Fresh Eyes

Many thanks for the welcome. I am thrilled to have found you all. I have especially enjoyed reading your posts, Fresh Eyes. (Now have to work out how you use smilies.)
 

Countrygirl

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U.K. clinic

Hello Jenny,

No, I haven't received any message, but thanks for trying. It is probably taking a long detour......
 
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Whats the chances of you being able to go back to your Dr and say you think it MS.
I'm not sure really.

I've been pretty thorough giving the GP info on my symptoms, but I'm not convinced he'd have noted them.

I'll have to look up what MS symptoms are and see if I think they fit mine enough to give it a go.

Thanks for the suggestion though.
 

Countrygirl

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Message received with thanks

Hello Jenny,

It arrived! Many thanks. I've sent you a reply.

Best wishes,

Countrygirl.
 

Jody

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To all,

I have been one of this wonderful forum's grateful 'lurkers' for the past few weeks. You have all, unknowingly, helped me through a horrible relapse. Thank you everyone. I have, however, developed a new symptom after fighting this horrible lurgy for 30 years - an obsessive/compulsive addiction to the P.R. Forums. Is it treatable?

Cort.....you are doing a marvellous job. Many, many thanks for all your hard work.

Best wishes to you all

Countrygirl

P.S. I have never posted before.....anywhere! This could end up on the back side of the moon...here goes....
Countrygirl,

For a first post anywhere, that was pretty darned funny. Kudos to you. :)

Don't think the forum admins are going to try to help you get over this addiction though, my dear. It serves our purposes... :D So in answer to your question, is it treatable? I will look you right in the eye and say, No, it's not. :p

Welcome to the forums (which sometimes feels like it IS the backside of the moon ... ).

And yes, Cort is pretty wonderful, isn't he. :D
 

Countrygirl

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Message (second attempt) for Jody



Hello Jody,

This is my second attempt to send you a message. I was correcting the first, and it just disappeared????? Where??? That one must be on the back side of the moon! As I was saying before my epistle vanished into the ether, I am sooooo sad that my new-found addiction isn't curable - but I can live with it.....if you can put up with me. I'm so glad I have found you all. Thanks for your kind words, Jody.

Best wishes,

Countrygirl ( I live in the depths of the Devonshire countryside, on the edge of the Blackmoor Vale......(if you have read any of Thomas Hardy's novels....that's where I be.....no, that is not poor grammar....but if I wrote in local dialect, you probably wouldn't understand.)