Me "I want referral back to Rheummy", Doc "Not a chance"

cally6008

Brief summary of doctors appointment I just had. Not in any order as such.

Me - My stomach flare up has settled down now, havent had tablets for couple weeks so still got some left but had to take one this morning cos it was starting up again
Doc - Thats good, you dont need to take them everyday though, just when needed
Me - Yep, thats all I do anyway

Me - I'd like some more codeine tablets
Doc - Well, when did you last have them (Me-April) ? Ok well I will give you them again but use them sparingly as they can aggravate your stomach (meaning dont take them cos I bet thats what caused your IBS)

(100 tablets in april 2010-sept 2010 = 5 months = 20 per month ... yep I'm necking them down 4 times a day like the box says to .. NOT!!!)

Me - I want to be referred back to Rheummy cos he said to go back if I felt I was getting worse

Doc - You were sent to Rheummy before to be checked for Anklosingspondylitis and Rheumatoid Arthritus due to your gran. Your recent tests were all fine and normal, there's no inflammation showing so no point referring you back to him.

Me - But I've got hypermobility, fibro and now the ibs which are all indications of hypermobility syndrome

Doc - Who said you've got fibro what was it again ?
Me - Err ... you did

Doc - Ahh well, that isnt a label as such, you might have it, we don't know for sure. You might have a mild case of it. Who knows ? Do you have any pain ?
Me - Yes all over, mainly legs but top half when tired.
Doc - Can you do the bending your thumb backwards ?
Me - No but I can do other tricks (knelt down on all fours, palms on floor to face knees, explained bout clapping feet, showed fingers 4+5 bending forwards to past wrist, did the prayers behind the back)
Doc - Very good tricks but you can do the thumb one ?
Me - No, my thumbs dont bend that way

Doc - What about pressure points ?
Me (stands up, loses balance moment as he starts pressing top spots that dont hurt) - They dont hurt
Doc - What about there ? (presses on sacroillic joint so my legs go to buckle) (presses elbows, yep that hurts)

Doc - Fibro and chronic fatigue are where you have pain allover and you have trouble getting out of bed, are housebound and you cant work or do anything. Your tests were fine with no inflammation showing so there'd be no point sending you up there as there'd be nothing they can do for you.

Doc - Do you still take Amtriptyline ?
Me - No, I came off it, fed up of feeling like a zombie in the morning
Doc - I gave that to you so that you could get a better nights sleep and wake up feeling refreshed
Me - I'd rather wake up tired then wake up feeling ddduuurrrrr and groggy

Doc - There is a fibro group that we could send you to but there'd be no point as there's nothing that they'd be able to do for you.
Me - (keeps quiet about attending local fibro support group for the past 2months)

Doc - Do you work ?
Me - Yep (explains where)
Doc - So you're still quite active, fit and get around about then
Me - Suppose so
Doc - (on summing up) Well you're still able to get out and about so keep up the good run
Me - (stands up n walks out) Yeah right, whatever


To do list
Buy a printer
Print off various HMS bit, highlight relevant bits to me
Print off various Fibro bits, highlight revelant bits to me

Visit docs again (preferably after no tablets for a week so I'm having an extremely bad day), sit down and go .. I've got this, this, this and this and just because I cant do the bending thumb backwards doesnt mean I havent got that and I want a definite answer this time so stop fobbing me off and send me to Rheummy .. please

Gawd, it took me 3 years in pain to get the Hypermobile diagnosis from Rheummy the first time round (started in 2004)

Ding .. ding .. round 2

Indie_Kid

Can you see another GP?

Mupette

sh1305 wrote: »

Can you see another GP?

Yes this is what i am thinking.

OP your GP can not dx you as fibro, only a rhummy as you know, i would see another doctor and ask again. Good Luck

hannahO_2

sh1305 wrote: »

Can you see another GP?

This was my thought too. Another GP in the same practice or change surgery for last resort? I'm sorry you had a frustrating time with your doc. :wall:

Trialia

Good grief. I am diagnosed with hypermobility EDS as nearly all my joints dislocate fully or partially, but my thumbs don't bend back either. They're the only joints I have that are not hyperflexible. I feel for you on that part!

Seriously, I am with the general consensus here: try to get to see another GP if you can. This one sounds useless.

LittleTinker

He is right though. Even if he does give you a referral to a specialist....there is very little that they will do other than repeat tests youve just had and thats about it..

What is it you are wanting a rhuemmy to do for you?

cally6008

I want a definite "yes you have (x)" diagnosis. I know I've got it, my friends know I've got it but it's just getting an "official" confirmation that's the problem. I aint going to be fit enough to keep doing normal everyday life without some kind of help forever and I'm going to need proof and medical back ups stating "yes I have (x)" in the future.

Plus it was 3 years ago when I was last seen and had MRI scan on back. My body (joints, ligaments, tendons etc) have all changed since then .... and I've now "got" fibro and had an ibs flare up (unless doc wants to back track on that diagnosis as well, forgot to ask him that!).

If it's not hms with fibro and ibs .. then what the heck have I got ?! Cos it sure aint all in my head

I'll definitely be going back and seeing a different doctor in a month or two.

sunnyone

cally6008 wrote: »

I want a definite "yes you have (x)" diagnosis. I know I've got it, my friends know I've got it but it's just getting an "official" confirmation that's the problem. I aint going to be fit enough to keep doing normal everyday life without some kind of help forever and I'm going to need proof and medical back ups stating "yes I have (x)" in the future.

Plus it was 3 years ago when I was last seen and had MRI scan on back. My body (joints, ligaments, tendons etc) have all changed since then .... and I've now "got" fibro and had an ibs flare up (unless doc wants to back track on that diagnosis as well, forgot to ask him that!).

If it's not hms with fibro and ibs .. then what the heck have I got ?! Cos it sure aint all in my head

I'll definitely be going back and seeing a different doctor in a month or two.

You may have sero negative arthritis and thats why your inflamation levels are normal, that may be one route of seeing a rhummy again or maybe an orthapod can look at your back then they can pass you over to rhummy, theres more than one way to skin a cat;)

VfM4meplse

LittleTinker wrote: »

He is right though. Even if he does give you a referral to a specialist....there is very little that they will do other than repeat tests youve just had and thats about it..

There are huge pressures on GPs to manage referrals appropriately and this GP is just doing their job. Agree completely about the FM gp, a real waste of time but seems to keeps sufferers happy...

LittleTinker

People can visit a Rhuemmy for 15 years and never have a diagnosis simply because tests remain negative and that an awful lot of docs will not give a diagnosis without some test to back it up.

If you have been disagnosed with Hypermobility, that could be the cause of all your problems. Hypermobility can present itself as you describe.

It would seem that you do manage with your hypermobility ok though as you are still at work arent you?
If you are that concerned about it then ask to see another GP but be prepared for the same answer. If you do get to see a rheummy, get prepared to be disappointed as they very rarely come up with all the answers.

jazabelle

Being able to work doesn't mean you are managing fine.

I work a couple of days a week, but it doesn't mean I'm not in constant agonising pain, have terrible fatigue, need help getting out of bed and showering, and have to use a wheelchair if I need to walk more than a minute or so. So I'd still like to see specialists and consultants, in case there is anything out there to help me, as at the moment I'm just barely existing, not living.