A little hello..

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A little hello..

Postby Shakenache » Mon Oct 13, 2014 4:23 pm

From me!

I've been researching Fibromyalgia quite a lot since getting a diagnosis a few months ago, along with a few other conditions that can seem similar. I was concerned that my local health partnership didn't seem to discount all other possibles before making this diagnosis. For this reason I went private to get every conceivable test done before accepting it... Celiac screen, full thyroid function and antibody test, adrenal system, vitamin and hormone levels... you name it - I've had it done. Sadly no luck, nothing more easily remedied can be found.

So now I'm on phase two. I think my Fibro is linked to my having PTSD. Perhaps I would be better to consider both now I've reached the 'What's the best way to treat this?' stage. My GP is still stuck in the old days and is convinced that Fibro is an rheumatoid/inflammatory condition which is no help to me because it's pretty well know these days that it's a neurological condition. Interestingly it can affect some of the same neurological functions as PTSD so I'm even more convinced.

Today I saw a consultant neurologist who seems as though he might be quite helpful. To put it his way his initial examination elicited the response that ' There's nothing wrong with the hardware so we need to look at the programming.' I liked that analogy! My request to him is to to make sure I get the most suitable medication first time around to suit my particular circumstances, and to tactfully educate my GP in his communications with him.

My GP gave me the ubiquitous Amitriptyline before I became more savvy. It was disasterous! I do not want to allow him to randomly prescribe anything from now on, particularly as he's convinced I have a rheumatic condition - in spite of the fact I have no inflammatory markers apart from some osteoarthritis which I was already aware of.

All this time I've been taking an SSRI for the PTSD, when I recently mentioned to my GP the possibility of switching to an SNRI because they are reputed to be particularly helpful for Fibro symptoms he openly admitted that he really had no idea about that! Hence the need for a Neurologist!

Anyway, that's me so far. I'm always keen to learn more and I've been on the excellent Facebook group 'Fibromites with Hope' for a while which has some lovely members. I realise that for some people Fibro has been so much more destructive than I have so far experienced. It's very humbling and has galvanised me to learn as much as I can about the condition, as it seems far too common that many don't get the most suitable help for one reason or another. I believe that knowledge is power, I plan to use it to corner my GP and drag him up to date if it kills him.

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Re: A little hello..

Postby Helhit » Mon Oct 13, 2014 6:25 pm

Hi and welcome.

I'm glad to see you finally got a diagnosis, but boy you've had to fight for it. That makes me cross to think doctors are still so misinformed.

My fibro came on after a long period of constant stress, although I'd had slight symptoms since having Scarlet Fever 5 years ago.

I too couldn't take ami; it turned me into a zombie. I'm on gabapentin, co codemal and vit d now and they are helping as long as I pace myself.

Good to meet you and I hope you find something and maybe a Dr that will help
Fibro is like the wind. You can't see it and when it flares up it knocks you off your feet!
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Re: A little hello..

Postby carolad » Mon Oct 13, 2014 9:59 pm

Hi Alison :) You have a brilliant attitude - you are doing everything you can to try and help yourself and I think that is exactly the right thing to do. I have very little faith in GPs (well, doctors generally!) and think that you need to take control of your own health as much as possible. I didn't have all those tests before I got my diagnosis. I pushed for some of them but then just lost the will and gave up! So the result is I'm not really sure if I do have fibromyalgia, or if something else is causing my symptoms.

Your theory about PTSD sounds quite plausible. There is definitely a connection between emotional/mental issues and physical pain. This is not to say it is 'all in your head' but just that your emotional state will always have an effect on your physical health. Good luck with educating that GP of yours! :-)
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Re: A little hello..

Postby Shakenache » Tue Oct 14, 2014 5:01 am

Thanks for the welcome!

My PTSD came about from a traumatic life event concerning fraud, theft, entrapment, forced labour (essentially) and harassment. It took four years to escape but I still have a problem with a stalker just entering it's sixth year now. I look at PTSD as the raging, furious and demonic cousin to depression. Over time it alters the ways certain things function in your brain and central nervous system.

Sadly, as long as the stalker issue is ongoing, it isn't possible to work on sorting the PTSD out once and for all, so with the help of some pills and a good measure of determination I've been just keeping it in a holding pattern. The effort of this has kind of grown into Fibromyalgia I think.

I have a tiny hope that one day, if I ever get to work on the PTSD, the Fibro might resolve itself too. Meanwhile I have a concern about what damage could be done by the time that happens.
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