Just been to Drs :(

[Itigo]

I have just returned from my GPs where the appt took oooh about 4 minutes.

I explained that I just had my 2nd surgery on my knee in a year and how I originally dislocated it. I said that my physio had told me to look at hypermobility on the internet and that having done so I would like to get it investigated further.

He said yes I probably am hypermobile but there's no point getting it investigated as he could give me the advice - take it easy - keep fit without impact exercise and be mindful of where your joints are. Then he said get it investigated all you like but even if you do get a diagnosis it won't make any difference. The problems come when you are in a data input type job where your workstation set up is rubbish and said that in my case as a teacher it's probably better as I move around lots.

Then I felt absolutely stupid and didn't talk about my history, other things I've found that are linked and relevant etc. He wiggled my hand and wrist and said yes you are really bendy aren't you? I asked about pregnancy and the fact that that's when my knee started up after 16 years and he said would you be more likely to put your back out - yes I guess so. You'll need to be more aware of what you're doing. The Relaxin is transient so it goes once you're not pregnant so it should only be temporary effect.

He didn't want to ask anything, I certainly wasn't going to start on the woe is my pain, tiredness etc. as he has treated me for depression before (after Mum died - hardly surprising!) and just knew he'd fling a load of anti-d's at me which I don't need.

Going to leave it all for now and see how I get on. If my daughter has any troubles later in life at least I'll have a heads up.

Had a cry on the way home and may have another one in a minute - this board is a great distraction.

Sorry it's so long.

Itigo xx

[dorimossop]

hi itigo,

these drs have some funny ideas dont they?
(see my physio post)

please dont give up just yet, a dx does make a difference, for me it was a huge relief to know it was a real condition.

huge for you

dori.

[sallyinlancs]

I would push for a referral to rheumatology Itigo. It's important to get a diagnosis so that you can get the best treatment that's available - even if you can only get some decent help with pain management. It's also important to get in touch with others who know what you're going through and there may be a group in your area that you could join if you had a proper diagnosis.

It's a struggle I know, but it could possibly mean the difference in future between being able to stay on at work or having to give up just because you've gone for so long without ANY treatment. An ounce of prevention is worth a pound of cure - and since in this case there is no cure, better to seek out some help sooner rather than later when you might not have the strength to fight for it.

Sorry to sound so negative, but I wish I had done something much sooner as I am really struggling now to fight for the things I need. If I had done it before I had got so bad, I believe I would have been able to cope better and fight harder.

[sallyinlancs]

I just read your other post and saw that you were thinking about pregnancy. My own experience was that with my first pregnancy/birth I had no problems at all.

Second time around I had problems with my Pubis Symphysis (pubic bone). Excruciating pain in the bone right above my genitals meant that I couldn't walk - was housebound at 5months pregnant and bedbound for the last few weeks and about 2 weeks after the birth.

Third pregnancy was even worse - I was hospitalised for my final month as I couldn't even get to the toilet and during the birth my Symphysis split (this is the worst pain imaginable).

These problems are caused by the softening of the ligaments during pregnancy. In a hypermobile person the ligaments soften too much and where the pelvis is joined at the front by a ligament, the two parts of the pelvic bone can rub together. Trust me it hurts like hell!

I was advised that because of this, I would be offered a caesarian if I ever decided to have any more. But to be honest, the pain I suffered during my third pregnancy has TOTALLY put me off that idea.

I would DEFINITELY push for a diagnosis if you're thinking of having another baby as things have probably moved on since I had my last baby (13 yrs ago) and you may need specific advice or help on how to avoid the kind of problems I had.

[Rachel1985]

Hey i'm really sorry to hear that your appointment went so badly.

I'd echo the other user's comments & say you often really really have to push to get an official diagnosis.

Even after I eventually saw Prof G, when I went to my GP in a bad flare up - she asked me what I wanted her to do & whether they'd done me any favours by being actually diagnosed with something! Which of course they have because i've pushed to see the physio at UCLH, the pain clinic locally, acupunture on the NHS, phsyio from the pain clinic & seen a clinical psychologist.

Trust your gut instinct. Perhaps it's worth seeing another doctor, or taking someone along with you. Could you maybe take along some of the info about HMS & highlight the bits you suffer with & any other problems that may/may not be related. I think on this site there's a page you can print off with contact details of the hospitals that speciailise in it - I think, but may be wrong that it's intended for you to give to GPs so they know where to send you, or at least it might help. Try to link in about the fatigue. I think Prof G or Prof B have an article on this site about pain & HMS & how emotional problems/stresses don't cause pain - if you're worried your GP will insist it's linked to your depression perhaps that would be a useful thing to print off?

The problems i've found don't just come from having a desk based job, I;ve had plenty of flare ups before working.

Good luck.
Rach

[kit]

Ah these doctors . You need to go back (I'm afraid) and explain very calmly, very gently that you need a diagnosis in order to be able to do appropriate physio and maybe pain management. Ask for referral to a rheumatologist and explain that you see a diagnosis as a positive step forward to become in control of your pain rather than it controlling you. Or shall I just come and shake him till he rattles?

[Itigo]

Thanks for the replies. My husband is being very supportive and is now cross too! I felt he was humouring me but I think the drip feed of "..and this you always tell me I'm doing - that's on the criteria list" has made him realise that it isn't just me being fussy.

I don't think it helped today that I have had bad niggly achy back pain all day from a)sitting at the computer more than I normally do and b)sitting in an awkward chair chatting to a friend yesterday for 2 hours+!!! It's just another reminder that there is a good reason why I feel so rubbish sometimes so why won't anyone listen?

There is another GP that sent me to physio once when I went with back pain but am concerned that she will look at what the Dr wrote today (probably "worried well - ignore") and not take me seriously either.

I am hoping to move abroad in the not so distant future and am starting to wonder whether a diagnosis might hinder my medical which I'll need to get a spouse visa. On the flip side, without the diagnosis I know they are even less interested where we are going so will get no help there! Oooohhhhhh why is life so complicated?!!!!

Nice glass of wine I think and my comfy recliner chair (a chair from my early childhood memories but boy is it comfy!!).

Will sleep on it and try to make another appointment tomorrow.

Thanks again - you are all great!

Itigo xx

[KiraEswen]

Diagnosis helped me believe I wasn't going mad, imagining all this pain. Since I've figured out what's really been causing it all these years, I am in much more control of it, than it is of me. Or I at least have a good idea what I did wrong, if I get it wrong. I now believe I am entitled to some help rather than endlessly adapting and coping with the next wave of joint pain.

I try to never go to a doctor's appointment without what I want to say all written down in front of me. I just got so fed up with being dismissed and going home to thing about how mad I must be. As without it written down I just get upset and start crying.

If I'd figured it out before everything hurt and I had to quit working, I might have stayed working with some extra support and a wheelchair. Or perhaps I just needed to really rest for a bit rather than just endlessly plodding on.