Fibromyalgia Action UK
40,247 members52,360 posts

worst year yet

well where do i begin the past year has been horrendous for me, all started nov 2011 and jan 2012 when i had a terrible fibro flare up which seemed to go on forever and at the same time i ended up losin a stone in weight tho gastritis/duodenditis n a week! n to top that off i had a bartholins csyt that grew so big i thought i had a bollock! lol... n whilst this happenin and thro the pain, sickness, tiredness depression n everything else thats been happenin i ended up with shingles! so havin a mix of this for 6 months i thought things couldnt get worse but as the months went on i had really severe headaches and started leakin breast milk n boobs where extremely lumpy! had a load of bloods run ( which she didnt want to do! i requested bloods etc after researchin my symtoms online) n it came back i had a really high prolactin level! docs panicked then n thought i had a pituiarty tumor n couldnt be more helpful ( after months of tellin me its fibro, stress n depression or better still VIRAL infection causin my symptoms). so from there i waited for a referal to neurologist and a mri head scan which i finally got come thro in nov/dec! but in the mean time waitin i done lots of research and readin up on SIDE AFFECTS from my fibro meds and realised that it could be from that. so n oct 2012 i came off al my tablets as most of them could have caused my levels to raise but what hell that was... i felt like someone goin thro detox! my body ached hurt and the restlessness from it was a joke i could have seriously ripped my arms and legs off they was that bad! still after a month or so bein of my meds i had more blood to check my levels which seemed to have gone down found out that it was th domperidone i took for anti sickness that had caused it.! still when i seen neuro doc he basically said that my headaches was bein caused by fibro and tension! yet when the mri came back (31st dec 2012) it showed i have extensive imflammatory sinus disease with sphenoid involvement n the pituiarty had slight convexity but no mass and the lipoma n the left cpa hadnt grown from from last scan.( was so annoyed at the neuro as why do every doc blame fibro as it not always caused thro that.. as at the time i did tell my gp and neuro doc that i thought it had something tp do with my ears/sinus from the pressure and pain i had in my head and ears! but he said it was unlikely ...still thats by the by WHAT DO I KNOW...... ITS ONLY MY BODY lol ).

i then was refered to ENT and because i was still gettin pain in my right breast after the prolactin level went back to norm n i had thickin in my boob i was refered to breast clinic too.... all is well tho i had cysts and a fibroadenoma (beign tumor) thank god but was really stressful and worryin and as for the ENT i have been given steriod spray etc and got go back in 2 months to see em again for CT scan! i have just started back on my tablets now too and have to be monitored as i seem to keep gettin really bad n rare side effect too so slowly n surely i goin back on em one by one thank god as the stress of the past year as really taken its toll specially havin 3 deaths 1 close family member, my best friends mum and a family friend on top of all of that.

i can honesly say that the last 13/15 months of my life has been the worst yet... fibro, tumor scares, deaths etc n all the proddin, pokin, tests n hosp apps n visits to the docs has finally hit me hard... am havin a massive flare up now from fibro again n gastritis etc! but i do thank my lucky stars that i dont have cancer or brain tumor etc n hopefully i can relax more now all the worry has gone! just gotta find a way to get this bloody fibro under control now if i can crack that i will be one happy lady lol.... but hey this is fibro we talkin bout! =D so gl me on that one havent managed it yet since i been diagnosed years ago lol

anyway just want to say never give up when ya know things aint right as you know you body better than anyone so dont be fobbed off like i was for months n bein told i cause my headaches thro worry bout havin a headache!!!... lol WHAT! or everything is blamed on fibro/stress or infection lol...if ya know something is new and unuasl to normal fibro pains n aches etc hang in there and keep pushin ya docs to run tests..

sendin ya all big soft hugs n hopefull y see ya soon.... havent been on since last march time so am hopin i will visit more often now my head is out my backside lol x

4 Replies

You indeed have been through the mill, thank goodness you are here to tell the tale. I can totally sympathise as I have the same rare reactions to most meds and am again going through med change over ... Lovely to see you can still be so cheerful and optimistic

Best wishes for a better 2013

VG x


thank you n i hope so... couldnt get no more stressful than last lol x gl with your meds hope ya find ones that suit you as i am still lookin lol some are ok but i have to suffer certain side effects still as if i dont take em the pain is so much worse specailly the hypersensitivty of the skin ( like shingle pain all the time!). still got mineral hossy next week so hopefully see what plan of action they got for me then n what new and so say wonderful drugs they got for me to try this time lol x

still ya gotta keep smilin when ya can otherwise i wouldnt be here if it wasnt for my 6 yr old son i dont know where i would be. he my ikkle ray of sunshine that keeps me a fighter =D. i will not let fibro beat me ( even tho there are times it does n i get so low n cry all the time) i will just keep on fightin thro it... all ya can do make the best of a crappy situaition lol x not about to disappear so ya either get up and get on with it or ya become a hermit and live a life of hell! n for my son i chose to fight it =) i just thank my lucky stars i am here to watch my son grow things could be alot worse.

thanks again hope you have a great year


Just goes to show that doctors shouldn't blame everything on fibro.

If anyone has pains or any symptoms not usual for them, then they should insist on having the appropriate tests!

Moffy x


Back in November 2011 I was still trying to come to terms with being told I have lung disease.Still not come to terms with it really. But your body really has been giving you the runaraound of late. I really hope things settle down and soon. Rest and stay safe xxxxx


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