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Author Topic: Hello from Padma  (Read 458 times)
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orm-irian
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« on: June 25, 2018, 05:58:17 PM »

Hi, I'm Padma. I live in Devon, I'm 55, and I've had intermittent CFS for 39 years now. At last, a GP who knows about such things has taken me seriously and is referring me to a team in Exeter for "formal diagnosis" (since she's certain this is what I have).

Mainly how I experience CFS is feeling like a phone with a really old battery in it. It takes a while, but I can charge it up - but it only holds about 40% charge, and then as soon as I actually use it, it runs down very fast. As soon as I get at all tired, my brain's clutch pedal goes down and doesn't work properly. General anaesthetic seems to make the CFS come on really strong - I had a very minor op in March last year and my brain still hasn't recovered, I had to drop a maths course I was doing really well at before.

Being taken seriously by my GP has really helped me relax into the reality of how little energy I have to play with. I've started using a stick for walking, and that really helps, as much as anything else because it slows me down so I don't walk too fast (my natural walking pace when I'm feeling well is pretty speedy). My legs feel like an alloy of rubber and lead at the moment, so the stick just helps me stay upright. Lots of sleep needed on bad days, or sometimes just lying with my eyes shut but unable to sleep, just not using power I don't have.

Anyway, I'm fairly chill with what I'm dealing with, especially now that it's being taken more seriously by the NHS). Mainly right now I've come here to ask whether anyone else here has been to the ME/CFS Centre in Exeter recently, and to find out what to expect of an assessment.
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roger
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« Reply #1 on: June 26, 2018, 05:03:23 AM »

Hi Padma, and welcome.

I hope someone from Devon can answer your questions  fingerscrossed
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chill
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« Reply #2 on: June 26, 2018, 01:12:45 PM »

Hi Padma

Just wanted to say welcome, i had an assessment at a specialist centre in wrexham and they basically just talked through what my symptoms were, how i felt on a good day, how i felt on a bad day, what triggered me etc.  But obviously Devon may be different.

I think you are right about General Anaesthetic, i have had 2 in the last 18 months and i am sure it is what triggered me, i have been in remission for about 7 years so relapsing has been a blow to say the least.

I love your phone analogy, very good! 

Its great you are now being taken seriously, and that you are getting an assessment, good luck.
chill
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orm-irian
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« Reply #3 on: June 27, 2018, 11:40:10 AM »

Thanks. I don't know how long it'll be before my assessment - I've got blood tests first next week before my GP refers me, and then the clinic will let me know the waiting time (for some reason, they wouldn't just tell me roughly over the phone).
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roger
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« Reply #4 on: June 27, 2018, 12:33:12 PM »

I hope the blood tests reveal something useful -  fingerscrossed
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agapanthus
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« Reply #5 on: June 28, 2018, 07:43:21 AM »

Hello Padma and welcome to the forum!

I am glad that you have at last found a supportive GP. I am 65 and have had ME/CFS for over 10 years, and live in Cornwall, so not so far from you.

I don't know the assessment centre in Exeter, but I did just google it and I see that it has a group approach so you will get to meet other people. I guess that the group approach is about management, but it can also be interesting to relate to others locally with ME if you don't already know some.
https://northeast.devonformularyguidance.nhs.uk/referral-guidance/eastern-locality/pain-management/chronic-fatigue-service-rd-e

As for me, well I did attend for assessment in Cornwall many years ago when it was led by Prof Pinching, who I believe did also have some input in parts of Devon also. Although in some ways he was excellent, in that his support letters kept me from the clutches of the DWP on several occasions, I was pretty appalled in retrospect at the lack of biomedical tests that I had done. My GP did no blood tests and neither did he at the ME centre, even though he was an immunologist! He was happy to diagnose me on the history and symptoms but I think that this would not happen there now but not doing this I feel was unhelpful. In fact I do have some markers on other tests like immunoglobulins and sometimes on the Full Blood Count that show my immune system is struggling.

The diagnosis may have been right, or maybe not. At any rate over the years I have improved my symptoms somewhat with pacing and my own research and use of supplements etc. Also I was already diagnosed with an underactive thyroid and the thyroid world is another can of worms that is not treated optimally by giving everyone the cheap Thyroxine drug and expecting them all to get better. I found that it didn't work for me, and have been able to use a more expensive variant which improves things, but it's not a cure.

My immune system is definitely dysfunctional and continual viruses lay me low and reduce my function. The same is true of operations as you point out in your own case - I recently had 3 ops in 18 months, and quite apart from the anaesthetics, the stress affected me a lot. Actually I didn't have a GA but it is still a big stress for the body.

I am now retired and manage to belong to a community dance/theatre group (many with disabilities in the group) and to volunteer at Oxfam behind the scenes for a couple of hours, so things are not too bad for me.

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