The Fibro Myalgia Advocate - Thoughts, Rhuematology or Neurology?

[tulips123]

Cant remember who posted this as worth a read. Money being tight cant afford the luxury of buying books, so I googled this and linked to Amazon where I got a free peek. Very interesting. Explained the difference between FM and Myofacial pain, different conditions & different causes although higher incidents of Myo in FM patients than in general population. FM is systemic. Neuro transmitters to the brain affecting biochemistry causing Sensitivity Amplification Syndrome/sensitized nerve endings (PAIN) Once I got around the long words and what they actually mean, the wide variety of symptoms experienced suddenly made sense. Hightened sensitivity to noise, light, sound, thermal fluctuations I have had since I cant remember when whilst at the same time low body temperature. Now I understand what my (unusually clued up) gp meant. Neurological, not rheumatoid, so does anyone know why FM sufferers are referred to Rheumatologist, not Neurologist? Also explained Fibro-fog.

I could only access some so may have missed crucial bits that would fill in the gaps.

[justlilme]

Hi there

Currently I am under both consultants crazy I know. I don't get it either. Been up all night again you? Or earLy riser x

[tulips123 in reply to justlilme]

Sleep hard to come by at the moment. I have such a long list of diagnoses and under so many consultants from endocrinology to rhuematology to dermatology to lungs and anything else you might think of. Open a medical dictionary and stick a pin in it - that's me! It just drives me up the wall sometimes. I just want to understand. What? Why? When? How? But I have never seen a neurologist, although my gp was the one who mentioned the neurological link, but I cant remember in what context. I think I'll ask her to come see me some time next week. She's pretty good! x

[Hidden]

I was refered to a rhematologist to rule out or include osteo and rhematoid arthritis, I actually wore out 3 rheumatologists as they couldn't decide ... Finally 5 years ago I got the additional bonus of osteo arthritis on top oh fibro and as usual reacted badly to the ususal meds so my rheumy got me reffered to orthotics for special moulded to fit insoles and he also contacted social services to who got me some aids for the house.. Then he discharged me to my GP cos his medications were just making me worse, fortunately my GP is fantastic and is still trying to find meds I can tolerate, my GP has me on great meds for my fibro,

VG x

[tulips123]

My gp's the best. Rheumy did her best, have osteo, +rhuemy +occasional bouts of gout, The journey to outpatients (ambulances feel every bump, never mind huge great pot holes!) was sheer torture. Last time I saw her (lovely woman) I asked her if there was any point in coming to see her, could she actually help? Sadly not! Have regular blood tests anyway, gp will refer again if necessary. I actually feel very well cared for. It's just that sometimes, i dont know. I get so frustrated. Feel I have so much to offer, physically a dead loss. Mentally, foggy an awful lot of the time. Then in times of clarity, I could really help people. I've been through so much in my life, If I could just make use of my experiences, the type of things that give you an insight into things you couldn't possibly understand otherwise.

Sorry, have no idea where that lot came from. All better now lol Onwards and upwards as they say! xx Keep smil;ing. xx

[Hidden]

hi all yep baffles me too! i was told and treated for RA for past 12yrs but not conclusive. i too have a fab gp who sent me for 2nd opinion with top rheum cons in exeter. 2months and lots of tests she diag fibro, me.plus arthr in my feet. i also have ibs, skin conditions and react to near on every blimming thing they give me! was really ill on the duloxetine she presc first nearly ended up in hospital. then went onto gabapentin, and finally pregabalin which aided 2stone weight gain. i also tk tramadol baclofen hrt as i had to have a full hysterectomy at 33! now for some reason my Bp is through the roof. they dont know why and keep uping pills to get it dwn quickly! hd really bad episode a wk ago hich i thought was a migraine or one of the cluster headaches i get now! but pain was so bad felt lk something had burst in my head and the migraine pill didnt touch it. also hd tingling in hands etc. so now after daily checks and bp meds up to 200mg and still wont come down. gp is sending me off to neurologist for brain scan and further tests!

not sure theyll find much brain lol! think hes worried i may hve hd mini bleed as bp was so high and not migraine after all.

more fun and games. still will b good to see if they pk anything up in relation to the fibro from the scan.

tk care all xx

[tulips123 in reply to Hidden]

Do you get the feeling, this is never going to end? Started when I was 12 (now51). I'm not saying my whole life has been a complete mess, hugely proud of my daughters/grandsons. But, but, but, dont know where to go next. Head is speeding (not 'recreational' drugs lol). All I get in my head at the moment is but, but, but! The clips from that book certainly joined a few things together, and i'm still positive the immune system and mental/emotional stress all tie in as well.

I also understand your frustration re. reaction to medication. You get an answer, this is what is happening take this tablet. Wont cure you, just help with the symptoms. Fair enough. That'll do. Ummm... Maybe not. Either this magic pill is going to react badly, or it will cause more problems than you started with. Like you said. More fun and games.. Surely, there must be a purpose to it all? Or perhaps it's just one huge cosmic joke; really, NOT funny!! Can we play something else?

Ok. Rant over. Lovely sunny day. Have a good one, everyone. xx