Fibromyalgia

Unity

bigzippy wrote: »

They threatened to take my tonsils off me, but as I was already gonna lose my job and they couldn't actually tell me whether the tonsils were the source of the problem, I was rather reluctant to let go of them :rolleyes: I may also have a slight aversion to hospitals and ops

I suddenly felt like I'd broken my foot last week - like the bone to my little toe had been impaled or something. It was hideous, but I just put it down to fibro and it wore off with time. I dont' even think about mentioning symptoms most of the time cos I put everything down to ME/Fibro! It's only when you guys pop up with something that I think about it really...

I hate hospitals like the plague, so something has to be 'dropping off' before I venture anywhere near . I have to see my GP for the repeat scripts, and the pain clinic consultant who does my facet joint injections - but I've said "No" to referrals to other 'specialists' because I don't think they are productive. Frankly I got a bit sick of being told "You are a very challenging case". I feel a lot better for having taken this stand because it feels like I have some control. Not that I'm advocating it for others - if something's nagging then by all means have it looked at - this just works for me .

It's really surprising just how many symptoms are common to fibro and M.E., well, either that or else the medical professionals just put it down to this because they can't be bothered to look any further :rotfl:. Any symptom on it's own can be troublesome - but when they all arrive together it's like 'Invasion of the Bodysnatchers' - quite literally :rotfl:.

Have a good one

ailz95

The complete range of 'silly' symptoms fibro/me sufferers have is crazy. So many bitty things that on their own mean nothing, but which add up to mega problems for us.

It's - I don't know what I was going to put - (sigh)

Ailz

bigzippy

ailz95 wrote: »

The complete range of 'silly' symptoms fibro/me sufferers have is crazy. So many bitty things that on their own mean nothing, but which add up to mega problems for us.

It's - I don't know what I was going to put - (sigh)

Ailz

Oh, how well I know that problem! :rolleyes:

bigzippy

Unity wrote: »

I hate hospitals like the plague, so something has to be 'dropping off' before I venture anywhere near . I have to see my GP for the repeat scripts, and the pain clinic consultant who does my facet joint injections - but I've said "No" to referrals to other 'specialists' because I don't think they are productive. Frankly I got a bit sick of being told "You are a very challenging case". I feel a lot better for having taken this stand because it feels like I have some control. Not that I'm advocating it for others - if something's nagging then by all means have it looked at - this just works for me .

It's really surprising just how many symptoms are common to fibro and M.E., well, either that or else the medical professionals just put it down to this because they can't be bothered to look any further :rotfl:. Any symptom on it's own can be troublesome - but when they all arrive together it's like 'Invasion of the Bodysnatchers' - quite literally :rotfl:.

Have a good one

I don't blame you at all. I spent an hour this morn waiting to see a specialist I didn't even want to see, just because I'd asked him last time I saw him (at the beginning of the year) to refer me to an allergen specialist as he'd "run out of ideas" - when I found out he hadn't done the referal I asked the gp to chase it up... which of course just resulted in another appt for the specialist that had "run out of ideas" and was therefore useless anyway! I told the nurse this (you know, when they always weigh you etc before you see the specialist.... why oh why?!) , who told the sister (who hovers around while you're with the specialist), who then called me in after an hour of waiting and said that the specialist hadn't referred me because I had normal blood tests the last time I saw him.... as if that answered any questions!!! :mad:

As for the similarities between ME and fibro - some docs I've seen have made out like fibro is a symptom of ME!

Unity

bigzippy wrote: »

I don't blame you at all. I spent an hour this morn waiting to see a specialist I didn't even want to see, just because I'd asked him last time I saw him (at the beginning of the year) to refer me to an allergen specialist as he'd "run out of ideas" - when I found out he hadn't done the referal I asked the gp to chase it up... which of course just resulted in another appt for the specialist that had "run out of ideas" and was therefore useless anyway! I told the nurse this (you know, when they always weigh you etc before you see the specialist.... why oh why?!) , who told the sister (who hovers around while you're with the specialist), who then called me in after an hour of waiting and said that the specialist hadn't referred me because I had normal blood tests the last time I saw him.... as if that answered any questions!!! :mad:

As for the similarities between ME and fibro - some docs I've seen have made out like fibro is a symptom of ME!

OMG - you are my twin! Were we separated at birth?:rotfl:

The reason they weigh you is to try and blame it on your weight, after which of course they'll ask if you smoke, drink, use recreational drugs, drink caffeine? When they have exhausted this list and you've replied "No" to every question, they'll tell you: "You have fibromyalgia!" so there you go :T.

If any of them are reading this, they'll add cynicism as another symptom .

One of the docs on our panel doesn't believe in the existence of FMS (yawn) so I told him I'd have to take the word of the World Health Organisation who must obtain their evidence from highly qualified experts in this field . I haven't seen him since .

I got really sick of the 'specialists' (I'm sure you've come across them) who are interested at first - then lose interest quicker than a toddler with a teething ring when they find out you don't fit the criteria for their specialism.

aliandy

Unity, I think a lot of docs don't believe in the existence of FMS, one cardiac specialist said to my Mum, " oh it says here you have Fibromyalgia, I only thought that was for people with mental problems"!!! :mad: Lovely woman, I would have loved to have been there to ask exactly what she meant by that awful remark!

somebody_else

Unity wrote: »

I hate hospitals like the plague, so something has to be 'dropping off' before I venture anywhere near . I have to see my GP for the repeat scripts, and the pain clinic consultant who does my facet joint injections - but I've said "No" to referrals to other 'specialists' because I don't think they are productive. Frankly I got a bit sick of being told "You are a very challenging case". I feel a lot better for having taken this stand because it feels like I have some control. Not that I'm advocating it for others - if something's nagging then by all means have it looked at - this just works for me)

Oh yes! (Again!). When I was finally referred to my current Rheumatologist, she did pretty much every test she could think of - and when she hadn't got to the bottom of things, referred me to some colleagues (I can't decide if my lowest spot was the bone marrow biopsy, or going for what I thought was going to be a hearing test and finding out that he actually wanted to stick a camera down my throat and look at my vocal chords - sorry, forgotten what it's called). It all got a bit much in the end, and I had to ask for it all to stop.

Whilst I'm grateful to her for wanting to find out what is actually wrong (instead of what the other Rheumatologists had done which was send me for x-rays first and as there was no visible joint damage didn't bother seeing me), and I'm grateful that she continues to see and monitor me every 6 months or so, the poking and prodding and having bits removed for biopsy was all just too much in the end.

I'm not just an interesting collection of symptoms, and like you I'm fed up with being seen as a 'challenging case'. But it seems churlish to say so when folk are only trying to help.

bigzippy

Unity wrote: »

OMG - you are my twin! Were we separated at birth?:rotfl:

The reason they weigh you is to try and blame it on your weight, after which of course they'll ask if you smoke, drink, use recreational drugs, drink caffeine? When they have exhausted this list and you've replied "No" to every question, they'll tell you: "You have fibromyalgia!" so there you go :T.

If any of them are reading this, they'll add cynicism as another symptom .

One of the docs on our panel doesn't believe in the existence of FMS (yawn) so I told him I'd have to take the word of the World Health Organisation who must obtain their evidence from highly qualified experts in this field . I haven't seen him since .

I got really sick of the 'specialists' (I'm sure you've come across them) who are interested at first - then lose interest quicker than a toddler with a teething ring when they find out you don't fit the criteria for their specialism.

The weight thing really bugs me...esp as it's rather obvious that when a fairly active person gets ill enough to be told they can't even go to a night class (2hrs a week) nevermind anything else they're going to put on weight! It bugs me even more when I've repeatedly asked my selection of docs how I can tackle the problem and they're nothing but useless :mad:

My blood pressure is always fine. The blood test results are always fine. The biopsys are always fine. My pulse is always (apart from when they drug me full of stuff to make me breathe ) fine! I wonder whether they just like feeding us to the nurses who need to learn how to stab people some more...? :eek:

My particular favourite(!) was when she stabbed me, looked very worried, accussed me of being rude for not talking to her (having already told her I don't like needles and can deal if I don't watch/pay attention), made several jabs at me, looked even more worried, then said that she'd "gone straight through" :eek: and had to get back-up from t'other nurse who then (graphically and reeeeeeally not necessary for my delicate ears ) described how she should do it.... I'm not a wimp but it enough to turn the hardiest patient green!!

Fibromyalgia was the option *after* ME - which was the same time as my GP was telling me that they may as well've called it "Mystery Illness X" for all they knew about it!

I like your WHO come back. Nice style. :T

I especially love the "specialists" who don't know why you're there, because you were originally referred to someone else, who's now retired and their cases get kicked to someone else, who kick them to someone else.... very helpful(!) :rolleyes:

somebody_else

bigzippy wrote: »

My particular favourite(!) was when she stabbed me, looked very worried, accussed me of being rude for not talking to her (having already told her I don't like needles and can deal if I don't watch/pay attention), made several jabs at me, looked even more worried, then said that she'd "gone straight through" :eek: and had to get back-up from t'other nurse who then (graphically and reeeeeeally not necessary for my delicate ears ) described how she should do it.... I'm not a wimp but it enough to turn the hardiest patient green!!

I'm not particularly keen on having needles stuck into me, but 2 incidents stick in my mind. The 1st one was when I was sent for a glucose tolerance test - she made such a job of getting blood out of my 'good' arm (I've got rather small veins and only 1 of them is close enough to the surface to be seen with the naked eye, and if they don't get it right the blood just won't flow) that it was too painful for her to take the 2nd lot of blood from it an hour later. So she then proceeded to mangle the vein in the other arm. I coudn't believe the pain she left me in. Bearing in mind that I'm in almost contant pain, and I've never had to take painkillers because of blood tests before. The 3rd time she wanted to take blood from me I asked her (very nicely) if she's adjust her technique a bit - she got into a right strop over it and boogered up me vein again

Then another time, I went in for my contraceptive jab - now, sometimes this stings a bit, but this time the nurse in question took aim from what felt like 6 feet away. I jumped and said ouch! And she accused me of jumping before she touched me. So how come she didn't need to take a second shot at it? I jumped so hard there was no way she'd have succeed if she hadn't got the needle in before I jumped.

There are now 2 nurses at my surgery who I won't let near me with a needle.

I will, however, let the new nurses and doctors get a bit of practice on my arms - but only if they're prepared to do it my way.

raeh

hello all, im going to have to start coming in to read more often if you are all going to talk this much as im exhausted from reading :rotfl:

i cannot believe how much we have in common from what iv read today, the first time they started to pay attention to something being wrong with me was when i had what was thought to be tonsillitus that went on for weeks and then they said it was mumps and then glandular fever. I never really recovered and went thorugh a year or so when i couldnt do hardly anything. Since then i get tonsillitus about 3 times a year where my throat almost closes up within a day of the first pain. I often have swollen glands too.
I also have a TM jaw but never really associated that with the fms, i cant open my mouth wide enough to even bite sandwiches and the noise makes people jump if i forget and yawn, its actually really painful at the moment as myjaw sticks open and i have to really snap it to close.
oh and yes i get cold sores too!!

unity i didnt really enjoy the film i found it very confusing but that was probably due as well to me dozing off constantly. I will watch it again when we buy the dvd

im sure i will remember something else i wanted to say to one [or more] of you

thank you all for being here and making me feel im not alone with this list of complaints :rotfl: