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Author Topic: Overwhelmed newbie  (Read 651 times)
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Embole
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« on: June 11, 2017, 08:17:19 PM »

Hi
I'm new to the forum, I'm feeling quite overwhelmed by all of the information on here and elsewhere on the internet, have others felt the same and how did you get through it?
I've been feeling pretty rubbish for a fair few years now, I'm 37 and feel about 30 or 40 years older than that. I feel exhausted and achy all the time. Having been told by the doctors on numerous occasions that "everyone gets tired and achy" I thought I was just not as strong as everyone else. About 4 years ago I had unexplained occasional numbness in my arms and had an MRI on my brain which showed lesions and the neurologist said the lesions and numbness was caused by migraines. Since Christmas I have been suffering from facial nerve pain and trouble concentrating, getting words out and generally forming thoughts. My doctor referred me to the neurologist again, both of us wondering if it could be MS. I have seen the neurologist who says he thinks I have CFS/ME rather than MS (I had an MRI on Tuesday to rule out MS but yet to get results), he wrote a letter to my doctor explaining this 'diagnosis' (not even sure if it is classed as a diagnosis) and told me about graded exercise therapy but I haven't been given any other information or support, I don't know what I'm supposed to do now?
I'm feeling really awful today and really down, I came on here to look for advice but my brain isn't up to the task, it doesn't seem able to process any information. I'm hoping someone can give me some advice as to where I can go for help?
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roger
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« Reply #1 on: June 12, 2017, 05:47:53 AM »

Hi Embole, and welcome to the forum.

Yes, it IS confusing, and it can be overwhelming. It sounds as though you've been through all the relevant NHS tests, and if that's so, and if they're talking CFS/ME, it means they've ruled out other possibilities and don't really know what's wrong - I'd be wary about the graded exercise therapy because most people find it counter productive.

To try and get your head around what's going on, I'd suggest this book as a starting point - https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Syndrome-Encephalitis/dp/1781610797/ref=sr_1_1?s=books&ie=UTF8&qid=1497246304&sr=1-1&keywords=dr+sarah+myhill - and if you have trouble getting through all the posts on this forum, try asking questions. Everyone here has been what you're going through and they want to help as much as they can.

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Embole
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« Reply #2 on: June 12, 2017, 05:49:16 PM »

Thank you for the recommendation, I'll take a look. I'm not feeling as bad today so I might have another go at looking at the posts on here. The first question that springs to mind is whether the NHS offer any support? I'm finding it a bit odd to be given a diagnosis and then left to it!
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neptuno
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« Reply #3 on: June 12, 2017, 07:02:03 PM »

There are a scattering of NHS clinics offering support.....actionforme or the me association websites will probably list your nearest.  Hopefully your GP will support you. Treatment is a bit trial and error finding supplements and treatments to help your worst symptoms.
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Embole
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« Reply #4 on: June 13, 2017, 05:26:09 AM »

Thank you for replying. I'll speak to my GP and see what support might be available in my area.
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adambeyoncelowe
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« Reply #5 on: July 19, 2017, 02:49:00 PM »

NHS support is very patchy, and usually results in CBT and GET. I'd be wary of both of these treatments, as they're not actually proven to work with most patients, and cause many to deteriorate. If you find that you can usually exercise two days in a row without problems, GET might work. But, if like most of us, you feel worse after exertion, then it's likely to be quite dangerous. CBT is a mixed bag and sometimes seems to focus on 'challenging your illness beliefs' (which basically means telling you that if only you think positively and ignore your symptoms, you'll feel much better).

The Myhill book is a godsend. Some of the useful info in it is also available on her website for free: http://www.drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers. (Take a look around and use the search function.)

The reality is, as Roger says, that most of us have to engage in a process of trial-and-error to figure out which things will work for us. Dr Myhill's approach is basically to address everything that could possibly be going wrong, which isn't a bad idea if you can't afford expensive diagnostic tests privately (which can yield mixed results anyway). I know Dr Myhill does have some tests which she has developed, which look at mitochondrial dysfunction, and give an indication as to which parts of the energy producing mechanisms of the body have broken down. I couldn't afford those tests, though, so just did everything, and it's working.
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roger
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« Reply #6 on: July 19, 2017, 03:12:33 PM »

Well put, Adam - the points you make need repeating often as new members and visitors come to the forum.
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adambeyoncelowe
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« Reply #7 on: July 19, 2017, 05:15:00 PM »

With NICE up for review, we'll see if we still get fobbed off with CBT and GET.
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roger
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« Reply #8 on: July 19, 2017, 05:31:28 PM »

I'll be amazed if we don't, but whatever, there's nothing else the NHS has to offer.

After twelve years I consider myself to be recovered, having had several false starts, and at the start, I was considered too elderly to expect much in the way of recovery. We're considering a new board outlining what I did, much of which is controversial, but much depends on whether there's any interest from people who are prepared to look beyond the conventional approach. We'll see.
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CeeDee
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« Reply #9 on: July 20, 2017, 07:32:50 PM »

We're considering a new board outlining what I did, much of which is controversial, but much depends on whether there's any interest from people who are prepared to look beyond the conventional approach. We'll see.

I would be very interested in reading the outline of what you did. It's very generous of you to give so much of your time and energy to help and give advice to others even after your own recovery. Thanks for all your input.
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roger
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« Reply #10 on: July 21, 2017, 05:33:59 AM »

Thanks, CeeDee, that's very kind of you.

Whether or not it goes ahead will depend on how much interest there is. I now know we have at least one vote  smile
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neptuno
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« Reply #11 on: July 21, 2017, 11:07:35 AM »

Two votes
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roger
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« Reply #12 on: July 21, 2017, 01:08:39 PM »

Thanks, nep, youíre a hero.
 
Tell you what, if three more members/visitors add their names, Iíll start planning. If ten or more (in total) do, Iíll start typing!
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neptuno
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« Reply #13 on: July 21, 2017, 01:39:21 PM »

I'm sure members and guests new and old will be interested to learn about your experience controversial or not.

 sign0085  sign0085 C'mon ! Add your name ! I wanna know what Roger did !
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agapanthus
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« Reply #14 on: July 21, 2017, 07:17:36 PM »

Add another name to the list please  smile
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roger
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« Reply #15 on: July 22, 2017, 05:57:39 AM »

Thanks, Aggie  Kiss Kiss
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neptuno
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« Reply #16 on: July 22, 2017, 10:57:43 AM »

Add Lesley (see her post in Physical symptoms)

I'm sure more will add their names....we're all intrigued to know what you did.
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roger
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« Reply #17 on: July 22, 2017, 11:01:03 AM »

Thanks for adding Lesley, nep  Kiss
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Talen
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« Reply #18 on: July 22, 2017, 02:03:36 PM »

Add me Roger.

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roger
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« Reply #19 on: July 22, 2017, 02:19:45 PM »

Thanks, Talen  smile

Right, that's five, so we'll start a feasibility study  smile
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neptuno
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« Reply #20 on: July 22, 2017, 04:37:37 PM »

Yeh.  clap clap clap clap clap clap clap clap
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roger
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« Reply #21 on: July 22, 2017, 05:30:43 PM »

 Smiley Thanks, nep  Kiss
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roger
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« Reply #22 on: July 30, 2017, 04:47:07 PM »

A quick heads-up to anyone who might be interested, the new board and the introduction thread are now up - just below the 'general section'.

Thanks to those who've shown an interest so far
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