New needing advice

Options
palo
palo Member Posts: 240
edited 2. Mar 2017, 12:41 in Say Hello Archive
Hi,

I have had painful hands for a few years which has got worse since last year. Anyway had blood test for RA which came back normal and xray of hands on Sunday which today confirmed mild to moderate wear and tear oesteo-arthritis.

Surgery rang and informed me of xray results and to take ibuprofen gel and paracetemol for the pain.

I feel a little abandoned, fine it confirms what I suspected but is that it, do i just get on with it, is there no further medical support.

I feel raises it a lot of questions and few answers. I would like to know the extent of the arthritis, I experience pain in other joints too, should these too be xrayed? Do I go back to the GP and ask for another appointment for this, I have been complaining about this pain since last year and it has taken till now before I feel I am getting anywhere but still it seems down to me to do all the management Feeling Frustrated.

Any advice please on next steps? Do I need to see a rheumatologist for a full and proper review?

I should explain I also suffer from myasthenia gravis and have a lot to deal with with that, and generally it is well managed but stress and another issue on top it tends to send it crazy, so it is important for me to remain as well as possible. Believe me it took years to stabilise so anything rocking the boat is terrifying.

I need to get ahead of this if I can as quickly as possible. December and January were very difficult to work and function as my hands were so painful and barely useable.

Thank you for listening.

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Options
    Hello

    Welcome to the forum, I am sure you will find support, advice, light relief and friendship here. There are lots of people on here with OA and I am sure they will be able to offer you some advice.

    If you would like to talk to someone other than your GP, perhaps you would like to ring the Arthritis Care help line which is a free phone no. 08088004050 (10-4 weekdays), where one of the helpline personell can give you some advice and support.

    I am one of the moderation team, we all have one or more of the arthritis 'hanger ons' or look after family with the same.

    If you need any help with the technicallities of the forum just get in touch via a personal message.

    Best wishes

    ChrisK
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Hello, I have psoriatic arthritis (which is dealt with by my rheumatologist) and OA which is dealt with by my GP. The former led to the latter but the latter can happen all by itself.

    OA is very common, affecting around ten million people in the UK and there is not much to be done; treatment involves the use of pain relief, maybe an anti-inflammatory medication, physiotherapy exercises and rest (though it's very hard to rest one's hands). Surgery may eventually become an option with replacement joints such as knuckles being available if suitable. The cold and damp aggravates OA so these winter months can be very tough. Some people have found temporary relief by soaking their hands in warm water laced with Epsom salts so this might be worth a go. I can appreciate that you feel abandoned by the medical profession, especially if all this is relatively new to you. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
    Options
    Hello palo.

    You'd be surprised how many people come on here saying exactly the same as you ie they've been diagnosed and is that it?

    The answer is, to some extent, yes. GPs can prescribe anti-inflammatories and / or pain relief and maybe physio but, to a large extent, OA is in our own hands. We need to keep mobile without stressing our joints and generally live healthily. Things will deteriorate over time but we can slow down the deterioration by our lifestyle choices. Have a look here for some very good tips https://www.arthritiscare.org.uk/living-with-arthritis

    I'm not sure how helpful further x-rays would be. Until joints reach replacement stage there's nothing more a GP can do. However, as you have myasthenia gravis which is, I believe, an autoimmune disease, it might just be worth checking with your GP. The routine blood test for an auto-immune arthritis doesn't always give a positive result even when it is present. Further tests can be needed.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Speculatrix
    Speculatrix Member Posts: 5
    edited 30. Nov -1, 00:00
    Options
    My GP and I have a routine. Every three months I go to her for a renewal of my prescription (low-level painkillers). She says, "How is it?". I say "A little worse, especially in the hands when I type." She says, "Stop typing". I say, "But I'm a journalist."

    We both give a gallic shrug. (She's French, so she has an excuse.)

    Basically, it's a matter of managing it as best you can. I think my GP is being cautious – she doesn't want to start me up the chain of ever-stronger painkillers until absolutely necessary, and I think that's right.

    But ultimately the doctor is there to help you. So it doesn't hurt to have a frank and open talk with your doctor about how you feel and what would be best.

    It's been a few years since I had X-rays, even thought I tell my GP that things are worse every 3 months. That's because what's happening is exactly what we both expect. But if (when) it gets to the point where I don't feel I can cope without something stronger I'll have no hesitation in telling my GP so.

    Pain is subjective. No-one can tell how much pain you're in from an X-ray. Doctors will make some assumptions, but ultimately you need to make it clear to them. They can only work on the information they're given.
  • palo
    palo Member Posts: 240
    edited 30. Nov -1, 00:00
    Options
    thank you for your responses, sorry I have not replied sooner, I am not getting notifications by email, obviously I have not set this up properly yet!

    I guess because of my past history, I assumed they would be more pro-active with me. I guess it is because I have only seen any doctor available in the surgery so there has been no continuity of care.

    I am about to have a minor eye procedure on Friday (laser correction of previous laser surgery for steriod induced cataracts), and seeing a consultant about my partial deafness (this begans in Nov 2015 - 1 month after shingles).

    I have had a history of joint pain over approx 10 years.

    I believe I have a high pain threshold, I kinda tell myself i dont believe in it so ignore it for as long as I possibly can. I used to have really bad period pain for many years and was on the max dose for paracetemol which was ineffective (eventually had to have an emergency hysterectomy due to severe fibriods - was half a stone lighter after surgery!), so am very loathe to go down the painkiller route and am currently only taking 1 when I have to work a lot with my hands, which is approx 2-3 days a week.

    I take steriods for the MG already and know they should be helping the inflammation and have found they do reduce pain for me, (cured my migraines!) but will not be increasing them any time soon.

    So I guess because I am used to having close monitoring because of the MG (which took 6 years to stablise and a a great deal of drugs and treatments as well as lifestyle changes) I did assume they would be more concerned about this rocking the applecart I am probably just too unduly concerned and inflating my importance...

    I have seen a GP now and do feel reassured that i can continue in my current job, which was a major worry, and he has referred me for physiotherapy.
  • Speculatrix
    Speculatrix Member Posts: 5
    edited 30. Nov -1, 00:00
    Options
    I don't think you're inflating your own importance at all. It's just that, while most medical professionals will do everything they can to help, sometimes the only person who understands what you're going through is you. So it helps to push a little... ;)
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
    Options
    I don't think you're inflating your own importance either. You already have a serious health problem and of course you are concerned about acquiring another – one which, in addition to its own woes, might impact also on your MG.

    I wonder if you've asked the docs about the likelihood of this. It might be that it wouldn't whatever meds you take.

    I do think the casual attitude of the docs is probably nothing to do with your seeing different ones and everything to do with it being OA. As I said, there isn't much they can do other than prescribe pain relief and physio.

    I'm not big on taking pain relief but they don't all work in the same way so just because paracetamol didn't cut the mustard for you doesn't mean to say nothing else will. I do hope you can continue virtually without any but, if not, do check out the possibilities with your GP or MG consultant – or both :wink:
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • palo
    palo Member Posts: 240
    edited 30. Nov -1, 00:00
    Options
    ..
    I wonder if you've asked the docs about the likelihood of this. It might be that it wouldn't whatever meds you take.

    .
    I'm not big on taking pain relief but they don't all work in the same way so just because paracetamol didn't cut the mustard for you doesn't mean to say nothing else will. I do hope you can continue virtually without any but, if not, do check out the possibilities with your GP or MG consultant – or both :wink:


    I haven't yet as only recently diagnosed i.e. yesterday was first chat with GP about it, but not due to see neuro for about 7 months.

    I have found that they operate as silos and when I have had issues requiring different specialties they do not co-ordinate at all well and the prioritisation has been down to me to work out what is worst at a point in time and get that treated. They are pretty clueless about MG and it has been a learning curve for both my neuros and me really (the last 18 years) gpt both symptoms and treatments.

    My own experience tells me what anything on top of the MG always worsens the MG, but I am hopeful of managing the situation as I have been stable for over 5 years now (which is fab in itself)

    You are right there are so many pain options these days, some of which I cant take and others I can, so I know I still have a number of options but need/want to stretch them out as long as possible (no ibprufen or opiod based), no muscles relaxants etc etc...

    Thank you for your input and support - which obviously applies to everyone who has replied to me.