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How to approach a doctor about something that is potentially a big thing? Very Long.

13 replies

confusedpixie · 14/01/2012 11:07

I feel that I have something that is dragging me down in all senses. I've been dismissed for years and told the connections are all in my head and that each thing is it's own problem if I am not imagining it. I was offered physion as a child and had surgery in my teens (arthroscopy on right knee) but apart from that have never been offered any other kind of help.

I am desperate to work out what is wrong with me. I saw a physio who was fantastic (privately and only one session but she gave me more of an idea as to what was wrong with me than years of GPs and a consultant) for some exercises a few years ago but haven't had anything since apart from doctors dismissing me.

I have various problems.
My joints are bad, it started with my knees being painful when I was 10/11 and in the past year or so my other joints, particularily my wrists but also my elbows, shoulders and hips are becoming painful. All of my joints seem to click or grind a lot, especially when in use (knees click when using stairs, when unfolding them, elbows and wrists click when at PC, shoulders grind when I'm reaching for something or hula hooping, DP often comments on the shoulder grinding as it's that loud, etc). The pain is normally a dull, achy pain that goes on for ages as opposed to a sharp or sudden pain (though it does come on suddenly sometimes and will stay for the rest of the day). Painkillers can bring it down to a manageable level or to non-existence, but I prefer not to use them as a) the pain is manageable most of the time anyway and b) it just masks the pain but doesn't stop the joint feeling weak, and I don't feel comfortable going up and down stairs when it's like that. Over the past few months the muscles around my knees have started pulling in a way that makes me feel physically sick with every step as I walk up hills (I live at the top of a long hill!), it's disgusting and I have to stop and breath deeply to control it before carrying on in a weird limping type motion to stop it.

I also have a bladder problem, something that started when I was about 13, I think back then it was spurred on by a nervous habit and all I really remember is that I went to the toilet more frequently. It got to the point where earlier this year I found it difficult to leave the house as I'd get panic attacks. I know part of it is in my head, but not all of it. I got help from a hypnotist who made it much much easier to manage and control within four sessions, now it's just the physical side of it left.

I've started getting bad headaches with migraine symptoms (but the pain is usually bearable to a point where it starts at lunchtime and I will be able to wait until I finish work at 5/6pm before having to take pain killers) and the very rare migraine in the past year or so too.

I'm constantly tired, I know I'm low on iron and have seen an improvement within a week of being on iron supplements. It's a very bone-weary tired, my mind gets foggy and I just find it difficult to think or do anything.

I was also diagnosed with 'Tietzes Syndrome' a couple of years ago and my chest still bugs me. Sometimes, when breathing deeply and especially when I'm feeling a bit down or emotional it feels as though my lungs are 'catching' at the end of the breath on something and it feels uncomfortable, as if they're being pulled towards the sternum and twisted.

I became dependant on pain killers in my teens due to my knees so try to avoid them as much as possible.

I feel as if this is all linked. I am finally settled somewhere and would like to get down to the bottom of this with a whole new start. My diet has been gradually improving over the past four months, which is making a little bit of difference to the tiredness and helping me stay alert for longer. My boss gave me a bunch of supplements which I'm taking (they seem to be doing something, again I feel less tired!) and now I'm ready to face the doctor again and get help instead of being dismissed this time.

But how to I voice all of this in the very limited time I have with the doctor and get them to be constructive? Should I go for each problem individually? I feel it's all linked but they may see it differently (or see me as a hypochondriac!) How can I push for physio and tests?

Thank you if you read any of this! I know it's long and I have written on here before about the problems, but now I'm finally in a position where I can seek help as I'm finally settled somewhere! And I can't find my old thread Blush

OP posts:
orangeflutie · 14/01/2012 14:04

Sorry you're suffering so much:(

You could try booking a double appointment at your doctor's surgery and mention to the receptionist that there are a lot of symptoms to discuss.

There are clearly things wrong, I'm no expert but could it be something like M.E? You definitely need to have a proper chat about it all because I'm sure it must all be very worrying.

Good luck.

danceswithyarn · 14/01/2012 14:16

There's a lot there.

Book a double appointment so you're not too stretched for time.

Print your post here and go through it again with a pen. Rank each thing in order of importance to you. Start with the most important one, but tell the doc at the start that there's a few things to discuss.

Stick to raising a maximum of 3 issues in the first appointment, but take your list with you and let the doc have a quick read of it if they can. Of the things you mention, I'd work the low iron into the first one, purely so that any blood test the doc might want can be back by appointment 2, and the pain control, so you can report back after any changes.

Anything you don't fit in to the first appointment, make another with the same doc a couple of weeks down the line.

It may take a while to sort you out, but I'm sure it's doable. Just don't expect a magic potion after the first appointment. You'll be a work-in-progress for a while.

confusedpixie · 14/01/2012 14:22

Thank you. To be honest, I'm so used to it that it doesn't bother me too much, but the way it's gotten so much worse in such a short amount of time (the past 18 months at most) scares the shit out of me, especially as the physio I saw made it clear that I should be doing something if I want to stay mobile past the age of 40 and that was before this started getting worse.

I never knew they could do double slots at surgeries, I'll definitely try that.

I'm also under the impression that it's something like ME or even Fibromyalgia, I also know that these things take ages to diagnose so I'll be pushing for as many tests as possible to try rule them out. It's not as bad as the symptoms for both state it should be but I know a few people with fibro who all say that they were similar at my age which worries me.

OP posts:
confusedpixie · 14/01/2012 14:31

dances: thanks :) I never thought of prioritising it. Knees I can live with, I have for ten plus years and they aren't deteriorating too badly considering everything else. I'll have a think on the other bits though. I think it's got to the point where I have to get help for my joints, and I should get tests for my bladder sorted as well as blood tests.

I know it'll take a long time to sort. It's been ignored and put off for a long time, by both the doctors and me, because I didn't want to face up to it. I don't even expect a diagnosis any time before mid-2013 being honest, as I know that even if I go private with some things it'll take a long time to see all of the right people. I just want to get the ball rolling.

OP posts:
Rosa · 14/01/2012 14:33

I agree I would do a list in points listing the worse first. I would try to give a fuller picture as you can so then the doc can go forward with things. SOme of your symptoms might be linked others not but the doc would know where to start. Good luck and don't give up.

Pancakeflipper · 14/01/2012 14:33

You could write it all down. Hand it to them. Let them read it. You'll not get upset/emotional and miss stuff out when trying to explain it all. And it can go on your file for reference.

Good luck. I hope they help.

Pancakeflipper · 14/01/2012 14:33

You could write it all down. Hand it to them. Let them read it. You'll not get upset/emotional and miss stuff out when trying to explain it all. And it can go on your file for reference.

Good luck. I hope they help.

Pancakeflipper · 14/01/2012 14:34

Oops sorry double posting

3littlefrogs · 14/01/2012 14:40

Two things come to mind straight away. Sjogrens syndrome and antiphospholipid syndrome.

These would fit with many of your symptoms. Difficult to diagnose, and often mistaken for other things.

If you can afford a private consultation, Professor Graham Hughes (Hughes Syndrome)is now retired from the NHS but still runs a clinic at London Bridge.

No-one can diagnose over the internet, but you should not be fobbed off.

Have you been referred to a Rheumatologist? That would be a start.

TheProvincialLady · 14/01/2012 14:43

When I have had a list of symptoms I have written them down and presented to my GP - he always thanks me as it saves time and he doesn't have to drag it out of me with prolonged questioning. Your GP should take you seriously. I'm sorry you're feeling so low, it's awful. The fact that iron and supplement make an improvement to how you feel is a good sign and you should try to look after yourself as much as possible with diet and lifestyle.

Julialyne · 22/01/2012 13:05

Hi just wondering how you are now? Did you go to the Drs? Have you got a diagnosis?

confusedpixie · 21/03/2012 12:51

Hi again! I just wanted to thank you all for the advice! (very late, sorry!) I actually ended up moving shortly after that so didn't see a doc but am going to pick up the forms for my new local doc tomorrow after work to sign up and try make an appointment for Friday afternoon to finally get the ball rolling on this! I had an awful day yesterday with it all so it's motivated me (again) to actually get out and try sort it out :)

I have my list written out and ready, my main topics are yet to be chosen but I'll do that tonight or tomorrow and I'm going to push for whatever tests I can get and ask about physio.

OP posts:
demolitionduo · 21/03/2012 13:02

My friend has Ehlers Danlos Syndrome & has many of the symptoms you mention. It might be worth you reading up on it to see if you think it fits.

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