who actually is helping us: has anybody... - Fibromyalgia Acti...

Fibromyalgia Action UK

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who actually is helping us

marydoll profile image
6 Replies

has anybody with fibro been sent to see a neurologist my gp understands how much pain i`m in he has sent me for every test possible and the latest is going to see the neurologist tomorrow. He has also changed all my med dosages ie 3 ampytriptiline at night mertazapine up to 45mgs 3 naproxen a day and 2 cocodamol strongest ones when required. Now i`m not a specialist or doctor but it seems to me that a lot of our doctors don`t seem to know what to do with us or what meds to treat us with does anybody else feel like this :-( x

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marydoll
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6 Replies

Hey marydoll, Gentle hugs,

I do!

I had a brilliant doctor for years who knew me well and knew who the best specialist was to send me to, for diagnosis. I moved to where I am now and not one GP in the huge surgery, about 20 or so of them - have even bothered to listen to me properly, or even check through my notes. My first visit there, had one GP reduce my only Fibro med (Co-Codamol 30/500mg) from 250 caplets per month - down to just 100! I'm no on - after one appointment with a regular "locum" - 180 Co-codamols a month - PLUS Pregabalin (Lyrica) - 50mg morning and night. And together they just take the edge off the pain.

Love,

Carol xx

kymkat profile image
kymkat

Hi there, You are right, they dont know what to do with us and maybe the reason is that a lot of gp"s use the term Fibromyalgia as a throwaway term, because there are so many conditions with the same symptoms and they dont test the things that can lead to a conclusion, half the tests have false negatives or we are told they are too expensive.

Back to your question, my neuro told me my memory probs were due to all the drugs my gp had me on,( I dont even think the Lyrica had any effect) the tramadol were very hard to get off and as for anti d"s,dont even get me started on that rubbish,anyway I was sent for brain testing and they found lesions they couldnt explain so that explained my probs.

It wasnt till I dx myself with hashi"s and started meds that I began to feel really well, I also started on a few other hormones which are really helping.

I wouldnt wait for medics to help because they dont have the expertise, they werent trained at medical school for these "new" conditions.kym x

getactive profile image
getactive

I too have an excellent GP who has sent me for lots of tests-not because he doesnt care but because he wants to get to the bottom of what really is wrong with me. Iam going back to the neurologist for more tests as MS has very similar symptoms. I really feel for all of you who dont have understanding GP's

Take care x

renrobin profile image
renrobin

Yes I agree. My GP was very sympathetic and reassured me that we would get to the bottom of what is wrong with me.

I had a full blood count - every test going and everything came back normal!

He has now lost interest and I'm back to square one - I suppose put up and shut up!!!!!!!...xxx

saluki25 profile image
saluki25

I was sent to a neurologist and had several scans as well as a MRI scan on my back and my head.

He discovered I had cardiovascular disease and confirmed the fibro. He wrote a long letter to my GP detailing what should be done and so far things have been OK. I am beginning to think it is a post code lottery as to how you are diagnosed and treated.

x x

marydoll profile image
marydoll in reply tosaluki25

thanks everybody been to see neurologist and now waiting to go foe scan.consultant at hospital told me to increase ampitriptilyne to 50mg already on 75mgs and naproxen to 2 a day actually on 3 a day he asked how my memory was i would say his was worst than mine if he couldnt remember what meds i was on and he had the refferal letter in front sent by my gp lol xxx

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