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Postby emg » Sat Apr 26, 2014 12:11 am

Hello everyone, been a bit apprehensive about joining here as I'm not diagnosed but being treated currently for fibromyalgia, however feel like I need to talk to other people as noone else quite gets it so if it means I can share some experiences on here it will definitely help me.

I have suffered with ill health following an illness a few years ago which caused me to have asthma attacks and basically I never recovered and have progressively gotten worse since. My main area is the pain I'm in as opposed to fatigue. Kept being persistant with my doctors who sent me to physio (to no avail) and decided I just hadn't gotten over my illness. I was getting worse all the time but couldn't convey to the doctors well enough, then one day last year I woke up feeling like someone was sat on my chest and I was in agony, I called nhs direct(rip) and they called me an ambulance... had ecg and went back in to the doctors still with no luck. I finally found a doctor in the surgery who didnt just brush me aside and ordered extensive blood tests, they came back with a positive ana and raised inflammation markers, then he referred me to a rhuematologist. My first appointment was filled with high hopes and expectations which I have now realised was a very big :nono: and since that first appointment I have been looked at for.....Spondyloarthritis, RA, OA, Lupus and the list goes on. Ever since the ambulance was called last June I still have no explanation for the chest pain that I still to this day suffer with intermittently. I have been sent to ENT to check my chest as I had a croaky throat for a year, the Eye Infirmary to make sure they couldn't see anything (no pun intended!) and now we are at a point where they are looking at FM. I didn't have all the trigger points, I suffer with a lot of the symptoms but they can't explain everything and have called me a difficult case (my diagnosis not me! - although my persistance I'm sure if difficult to them but not me!) I was put on amitriptyline to no avail, and for the last few months I have been on gabapentin which has made me feel so poorly and again has not worked in the slightest (if anything I have been getting worse the past 6 weeks) and next week I believe I start Pregabalin.

Whether this is FM or not who knows, I am trying very hard not to fully go down that road until it comes to it as there are many roads I could still be sent down at this stage. My Grandmother had MS, my mother shows signs of lupus (most notably the butterfly rash although she has never been given a diagnosis).

I'm definitely struggling physically and now emotionally due to the frustration in all of this. The only time in the past few years I have felt like I have had an improved quality of life was when I started taking the anti-inflammatory Etodolac- this lasted for about 6 weeks before having little to no effect. I find the lack of research and concrete information on FM outstanding and it angers me so little is known about such a prevalent illness. I need to keep an open mind and 'remain positive' but it's a very long and frustrating road.

I'm based nr Plymouth and attend the hospital there so would be very interested to hear the experiences of other in the local area but also the experiences of you all generally.I have been reading this forum for a number of months now and it's definitely been helping me learn a lot more.

If any of you have reached the end of this post, well done 8-) ...........and thankyou
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