Dr appt tomorrow, need referral

ouchpotato
ouchpotato Member Posts: 453
edited 7. May 2013, 10:56 in Living with Arthritis archive
Hello everyone. I have a doctors apt tomorrow, and need him to refer me to a rheumatologist as my (as yet undiagnosed) condition is getting steadily worse.

I have had low back trouble for years, since I was late teens really. It has steadily got worse, and now the pain wakes me in the early hours almost every night. If I try and turn over in bed I have to use my partner to lever myself into position. Getting out of bed is almost impossible, the stiffness and pain is horrendous and it takes at least an hour for me to regain some mobility. I can't put on socks/tights, and I have to avoid going to the loo for an hour or so as I can't...er...manoeuvre myself into place to...um...use the tissue shall we say.

I went into town today and after about half an hour of strolling around I was almost in tears with the pain on my back and hips. I am now getting pain further up my spine.

When the pain is really bad it spreads to my hip and down the front of my thigh, not a sharp pain...a dull, sickening aching pain.

After searching for answers (the gp's have never given me any) I am fairly sure I have AS. I was sent for blood tests about 2 years ago, all came back fine. I asked about the HLA B27 and was told that was included in the routine tests (I know it's not). The dr at the time then said I had fibromyalgia, which has later been disputed by another gp, and in fact the original one didn't even put it down on my records so I am convinced it was just to fob me off.

So, do I go in and say I think I may have AS? Do I say I think I may have an inflammatory arthritis? or do I just give him a list of my symptoms and ask for a referral? (The last GP said she was baffled and would refer me if there was no improvement but it is impossible to get an apt with her).

I so need to get this under control now.

Thanks for reading.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello ouchpotato, I do like the name. :wink: I too had a very 'reluctant to acknowledge my troubles' GP in my early days of inflammatory arthritis but I fear that to trot in and tell him/her what you suspect is up with you may not be the best way way to go for you (or them). GPs know a little about a lot so it may be better to gently suggest that, on doing some research, you feel that a rheumatologist may be better placed to advise you about your current troubles (because they know a lot about a little). I work as a private tutor for dyslexics and know how difficult it is when someone who doesn't do what I do (and doesn't know the stuff I know) tells me where I am going wrong and what I should be doing. :wink:

    I am going through a rough patch at the moment myself so am not around as much as usual but I hope you are able to get somewhere tomorrow - I'll look in again then and see what happened, OK? I wish you well. Good luck. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • constable
    constable Member Posts: 2,115
    edited 30. Nov -1, 00:00
    Just wanted to say Good luck with your appointment today. I agree with DD, you should make suggestions to them. That's what we do with our doctor. They are more likely to listen then. But at the end of the day it is your choice.

    Let us know how you get on wont you.
    Karen xx
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Good luck tomorrow with your appt, I hope you can get across to your Dr that you really want this referral. If you have a good relationship with them you should have no problem. Let us know what happens.
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Thanks for the replies. My apt is at 4.20 so I will let you know how it goes. DD, I know what you mean about not going in and telling them how to do their job, it would drive me mad too in my work, I'm just so fed up with not being taken seriously. I went to one GP with my wrist and thumb and he told me to lose weight....I told him I don't sit on my hand!

    The problem is I never see the same dr twice, our surgery seems to go through doctors at a ridiculous rate.

    The fatigue is killing me. I had about 8 hours sleep last night (bar waking up with pain) and I've just woken up now after sleeping on the settee (my youngest is off school today sick), it is literally crippling me, and that is without taking any meds...if I take cocodamol it makes me almost comatose.

    After being in town yesterday I could barely walk, it felt as if I had broken glass and stones in my shoes - and despite me using a pumice stone and moisturiser regularly my feet are cracked and sore underneath, and on one foot only the skin is really thick and dry underneath. I have also got one toenail that is so thick I have to file the surface down as it looks so ugly. It is split all the way from tip to cuticle and keeps crumbling. Do I mention these to the dr too or is that something entirely unrelated do you think?

    Thanks
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I wish I'd seen this earlier - I hope you have mentioned this skin and nail trouble. I too have trouble with my skin (and latterly my toe nails) but I know why - in my case it is definitely connected to my arthritis but in your case all things are relevant as they may help with diagnosis. I hope we hear from you later. DD

    PS I know what you mean about not seeing the same doctor twice in a row, I wait until I can see the one I want and I now have a choice of two, lucky me!
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Hi DD, I didn't even get around to mentioning the foot problems. As I went in I dropped my phone which came apart, so I was a bit flustered (I drop things a lot from my left hand I've noticed). Anyway, when I told him the main symptoms he straight away said I didn't need a rheumatologist and that I needed an osteopath, as I have classic sacroiliitis - he said it was text book, the pain off centre of my spine and spreading into my hip and the neuropathic pain down the front of my thigh. He wouldn't entertain referring me, but prescribed me diazepam and naproxen. I asked him why was I so fatigued - he said that pain can cause us to be tired. I said it's not just tiredness, it's crippling debilitating fatigue and he said if I still feel 'run down' after the tablets to go back and he will order bloods.

    Now, I have read that sacroiliitis is synonymous with ankylosing spondylitis, and other inflammatory arthritis, and it worries me that with such a red flag I am still not being referred and therefore possibly not getting the treatment I need to prevent further damage. I am now looking forward to 5 days of being slightly spaced out!

    Any thoughts?
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Yup, lots, but as I've had a very rough day what with one thing and another I won't post 'em. :wink:

    I think your GP is being over-cautious: my Pa loved his osteopath but, as he only had to cope with the occasional slipped disc, to me that's no wonder. Lucky man. :roll: Extreme and draining levels of tiredness are par for the course with an inflammatory form of arthritis but attaching an exact label is not that easy.

    The interweb is a useful source of information but only if one uses it wisely which I hope you are. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    If you're not happy with how the appointment went, ouchpotato, you're perfectly entitled to get another opinion from a different GP in the practice. Even if it means waiting it would probably be better to know whether or not they agree. (Waiting and arthritis go together 'like a horse and carriage' anyway :roll: ) Would it be useful to have a chat with our helpline people, though they, like us, can't do diagnoses?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    ok well sacroilitis is a feature of AS. im surprised he didnt refer you if you;ve had it for such a long time. have you made it clear youv had this since teenage years? as that its classic of AS.
    however saying this, naproxen (antiinflammatories are the usual first step in seronegative arthropathie which i have a type of too). i tried several antiinflammatories before being refered as they didnt make the blink bit of difference. but when your in so much pain and cant walk sounds like steroids would be better. its up to you, you can either give what you have a couple of weeks. or go and see someone else and ask for a referal to rheummatology because its so bad. or you could always write the doc you saw a note/leave message saying could they refer you, as theyv already seen you. im always writing my doc notes, haha, got one now saying can she refer me to someone. you have to say what you want these days.
    good luck, sounds like you need stuff doing, and i dont have AS i have enteropathic but my hips are pretty bad, and know its agony not being able to walk and limping about, not fun.
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Hi everyone and thanks for the replies. DD I'm sorry you're having a rough time at the moment.

    Lizzie, yes I told him I'd had it for years and years - it pre dates having children and my oldest is 19 this year! I asked him if it was 'just' sacroiliitis would it last this long and he said yes, if it hasn't been dealt with properly. the thing is, and I forgot to tell him this, my old GP in my 20s was also a qualified osteo, and he used to treat me regularly. This never got rid of the problem and it's slowly got worse. I am now feeling it further up my back too, and lately a nagging feeling in my neck. I get a lot of rib pain also. It just feels like it is slowly creeping up my body if that makes sense?

    The naproxen and valium seemed to be helping for the first couple of days, but I woke up this morning with the familiar stiffness at the end of my back, and sore hip and thigh, so any relief the naproxen gave was very shortlived.

    I can't sit back in the settee for long, certainly can't 'slump' in it. After 10 minutes or so I have to sit straight on the edge of the settee which is so not relaxing, and kind of makes everyone else slightly nervous as I constantly look like I am about to leave the room! Does any of this sound familiar? But then when I am sitting like that the bottoms of my feet burn. it's all very peculiar.
  • lizzy100
    lizzy100 Member Posts: 235
    edited 30. Nov -1, 00:00
    mmm AS would only affect your lower back. What are you going to do then? go back and see someone else?
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Really? I thought it could affect more places - the neck for instance, and sometimes other joints as well as further up your spine?

    Anyway, quite by accident I found out tonight that my sister, who lives in Oz, has been diagnosed with arthritis in her neck, no idea what type. I also know that my mother has suffered for years with her neck - sometimes having to have the dr out on a home visit to give her anti inflammatories and pain killers (she loathes doctors and hospitals so will never go for tests etc), and my brother had surgery on his spine a couple of years ago, so there does seem to be a pattern within the family.

    I think I will finish the tablets I was given (5 - 7 days) and then go back and again ask for a referral.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    For what it's worth I think you're right on the AS front, ouchpotato, from reading various threads on here about it appears that people can be affected anywhere on the spine. You certainly seem to have a familial link and it's surely time for a referral to a rheumatologist. Your GP needs to brush up on some things, methinks. :wink: AC produce a range of information booklets, it may be worth ringing the Helpline and asking for some to be sent so you can arm yourself with reliable information.

    Naproxen (an anti-inflammatory) may help matters but why the valium? Is it being used in a similar fashion to amytryptiline? (That is an anti-depressant but, in lower doses, it can help people with arthritis sleep better.) There are other anti-inflammatory meds available - naproxen didn't do much for me but my new one, diclofenac, does. If your GP decides to keep you on the nap please ask for a stomach protector; that is essential as anti-inflam meds can lead to stomach ulcers etc. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    Hi DD, hope you're feeling a little better now?

    The valium...I'm not exactly sure but I remember being put on it before, years ago, because my back had gone into such a spasm that it was the only thing which would 'unlock it' (according to the dr at the time). It wasn't prescribed in the way amitryptiline is, for sleep, of that I am sure. My daughter takes it to help her sleep as she has joint problems also and is under the care of a rheumatologist already.

    I was already on diclofenac, have been for a couple of years now along with omeprazole, but the gp I saw last week said that naproxen was more 'heavy duty' than diclofenac (I got on fine with that) and that cocodamol (which I was also on already) was the work of the devil and should be banned, hence the valium? He didn't however give me any omeprazole or similar stomach protectors.

    The tablets seem to be keeping it at bay somewhat, but I can feel it nagging there in the background all the same. This is a horrible treadmill to be on isn't it?

    x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    So your daughter is seeing a rheumatologist and you're not? That makes it all the more silly to me. It may be that your GP regards nap as more powerful than diclo but he's not the one taking them, is he? Given the choice between co-codamol and valium I'd opt for the first every time. Surely prescribing has to be about what's best for you, not him. Stand your ground, girl, make sure you are getting what YOU want because you are the one who is struggling.

    I've been on a number of medications over the years and not one has ever relieved the pain or the arthritis - they blunt the edge of the worst symptoms but that's all. I guess I'm one of the unlucky ones on that front. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • ouchpotato
    ouchpotato Member Posts: 453
    edited 30. Nov -1, 00:00
    That must be rough DD, I'm sorry to hear that.

    Yes, my daughter has suffered for a few years with painful joints; back, hips and wrists. She is double jointed so they put it down to hypermobility syndrome without doing any scans/xrays etc. Bloods all normal. She sees a rheumatologist regularly, has occupational therapy for her wrists, wears 2 different types of splints and has physio for her back.

    Well, no doubt I will now pay the price for overdoing it today. I have been asking for stuff to be moved in the house for weeks now, and today I took a bit of a temper tantrum on me because none of the jobs had been done, so I stupidly moved a double mattress down 2 flights of stairs, and a gigantic old style tv and brought them all down into the cellar. I can feel myself stiffening up already. Oh well. looks like takeaway tonight :D