Feel guilty for asking for help

Rosycheeks
Rosycheeks Member Posts: 84
Hi :)
I have psoriatic arthritis and have had it for about 6 years. For the last few years I have suffered with a very stiff painful neck (amongst all the other joints. For the last 9 months ish everytime I lay down one or both of my hands go completly numb. I saw the rheumatology physio for this and she confirmed the cause is almost certainly my neck. However over the last few weeks the pain in my neck increased and I have a permanent half numb, tingly feeling in my right hand, and when I touch anything its like Im getting electric shocks in my fingers. The worst thing is the headaches its giving me, blinding headaches I wake up with every single day that make me sick to my stomach. I have alot of pain relief at my disposal from anti inflams to morphine but its not touching the neck pain/headaches even if I triple the prescribed dose. So out of desperation I phoned the rheumatology helpine who told me to ask my GP for a refferal to the orthopeadic service. So today I did.. and was met with a really grumpy response. The GP told me he will refer me but dosnt understand why he has to and that he will also be writing to the rheumatologist because he is 'game playing'. I feel absolutely terrible about this. If I hadnt asked for help none of this would of happened. I dont feel like I should even ask for any more prescriptions for Leflunomide etc because im just a drain on their finances. I do work full time which is so so hard at the moment, but I never take time off sick, I just take more morphine when the pain is too much. There are times I drive home from work in tears because the pain is so bad after a 10 hour day. Right now I can truly understand why people turn to sevices like dignitas. I feel like thr rheumatology service dont want to help me and my GP Practice are angry about the rhematologist requesting my treatment. I feel like giving up, stopping all meds and crawling into my bed and staying there.

Comments

  • maria09
    maria09 Member Posts: 1,905
    edited 30. Nov -1, 00:00
    Hi
    My you are having a tough time
    Your GP sounds an uncaring baboon (couldn't think of anything other than swearing)
    All GPs have a duty of care so the fact you need medications for a condition you can not help or want should not be an issue yes we cost the NHS a lot of money but none of it is self inflicted, so no matter what he thinks s** him
    Have you thought of complaining to the practice manager regarding how you were treated? How about changing your GP practice or is there a more understanding one in the practice?
    I am so lucky I have a great GP practice who are caring and understanding showing great empathy towards me and my daughter who also has a long term condition requiring expensive medication we are never made to feel we are wasting their time or costing the practice money I just wish all GP practices were like mine but judging on here quite a few are just like yours
    As for Rheumy dept they have a protocol to follow and don't seem now to be able to refer you to a another speciality there fore it goes through the GP
    I think you are a very strong person working full time with severe pain maybe its time to be kind to yourself and take a little time off work giving your body a well deserved rest
    It's taken me many years to realise this until it was too late and my body said enough is enough so I'm march this year I retired due to ill health after working 30 years
    Best wishes
    Maria
  • helpline_team
    helpline_team Posts: 2,772
    edited 30. Nov -1, 00:00
    Dear Rosycheeks,

    Thanks for your post to Helplines. I am sorry to hear about all this pain you are experiencing and the questions that must be concerning you. Sometimes if you start getting severe pain somewhere you may need the reassurance that your arthritis is properly controlled. I wonder how long ago it was that rheumatology did some images to see how things are on that front?

    You didn't mention your blood results - but you might want them to discuss those with you also.

    You mentioned talking to rheumatology via the nurse helpline, but I wonder how long ago was it that you had a proper chat with your rheumatologist?

    If you don't feel happy about how things are generally I want you to know that you can always ring us for some informal support. We are here to listen and reflect what your concerns are.

    If your pain is not at all controlled it would only be natural that your mood might be very low. Am I right that your GP is wanting to raise some concerns with rheumatology? If that's worrying you, do let the GP know - because the most important thing is that things are done in a way that you feel is sensitive to your needs.

    Do come to us for some support if you'd like to.

    Kind regards

    Guy
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    Rosycheeks, you are depressed and you have much to be depressed about – the arthritis itself, the pain and now your GP and rheumatologist squabbling over your treatment. This is not your fault and you mustn't blame yourself. Incessant pain clouds our judgement.

    Your GP is angry with your rheumatologist, not with you. They are both on a tight rein due to cuts so neither wants to bear the expense of a referral if they can pass the buck. You are not the problem, only the catalyst.

    Please don't even think of stopping the lef. We are all a drain on finances. Apart from my usual meds I've cost the NHS two hips and three knees. So I've done my bit by ensuring I did everything to make them work and then look after them. Stopping the meds will only result in you getting much worse and other things going wrong that will take more money to put right than lef would cost.

    Please don't give up. If you really feel like ' giving up, stopping all meds and crawling into my bed and staying there' then please go back to your GP – or another, more congenial, one – and explain how depressed you are. If you don't even feel able to do that right now then ring Samaritans. They will provide a kind, non-judgemental ear and as much time as you need.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am amazed that you are still working - that shows courage and determination which I am sure you have in spades but for the time being you have lost sight of them.

    Are we a drain on resources? NO. Far from it, if it wasn't for the likes of us GPs and rheumatologists etc wouldn't have a job to go to every day (whether they want to or not :wink: ) We are not responsible for our poorly bodies but they are in their chosen line of work, they are there to help us and to make us as good as we can be. I reckon you could benefit from a) ringing the helpine on here, b) taking a little time off work (if possible), c) coming and talking to us and d) sorting out an appointnment with a new GP - can any of your friends recommend any one?

    Sometimes we do face an uphill struggle with life and ourselves and that is precisely the time we need to be seeking out help even though every fibre of our being is telling us to crawl into bed and hide under the covers. I am thinking of you, Rosycheeks, you will get through this, OK? DD
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    Rosycheeks please do not feel guilty.You are suffering very real, debilitating and worrying symptoms, and it is perfectly reasonable to expect the medics to help you. If the GP thinks rheumatology is 'game-playing' that is not your problem and it was not only thoughtless but unprofessional to voice that opinion to you.
    Keep posting(try the Living with Arthritis slot, you'll get lots of support and encouragement) and have the Samaritans number to hand for those dark, 'out of office hours' times when the Helplines phone team isn't available. You don't need to be suicidal, I found just the chance to talk to someone whose purpose is to listen, so you can get out of the endless circling in your head, can help prevent sinking further into the despair.
    I second DD's comments - the medics are (well) paid to deal with your condition and also, by continuing to work you are contributing to their pay packets, so it is reasonable to expect them to do their bit.
    Hoping that things start to improve for you before too long.
  • Rosycheeks
    Rosycheeks Member Posts: 84
    edited 30. Nov -1, 00:00
    I just want to say a massive thank you to you all for replying. It really has made me feel better about things.
    I have been told many times by my GP how much each prescription is costing the nhs when i need them. I feel ashamed when I have to see my GP. I feel so embarrassed if I see him when I go for my bloods, so I dont get them done nearly as often as I should. I guess the serious lack of sleep and pain just got to me when he told me the rheumy was game playing, and I took it to heart more than I normally would.
    Anyway apart from the neck pain and hand numbness I have now been 2 days without the sickening headache which has made a big difference to the way I feel. I can cope with it as long as the headache stays away :)
    For now I am just waiting for my refferal to come through.
    Oh and I am continuing with the Leflunomide. Your all right of course.. I would only end up in a far worse situation.
    So thank you all again xxx
  • stickywicket
    stickywicket Member Posts: 27,092
    edited 30. Nov -1, 00:00
    I'm so pleased that things have eased up a bit for you Rosycheeks and thank you for letting u s know.

    You are so right about pain and lack of sleep playing havoc with our moods and outlooks. The headaches lifting must have been a big plus for you.

    I don't think it's either helpful or professional of your GP to talk of your prescriptions being a drain on the NHS. I wonder if he says this to all his patients.

    Please have your blood tests as regularly as requested. They are so very important for those of us on DMARDS. Maybe you could have them at your local hospital. I know I can. Why not ask your GP's receptionist?

    I do hope things continue to improve for you bur, if not, you know where we are :wink:
  • Stigger
    Stigger Member Posts: 72
    edited 30. Nov -1, 00:00
    Rosycheeks, please don't feel guilty. I have had similar comments 'gosh, you're an expensive patient' etc when they discovered how much my prosthetic leg cost the NHS and 'good job we don't charge you for all your pills' and finally 'better make sure you look after that leg, we can't afford another one of those and the THR'. All delivered with a smile, but there's an 'edge' there.
    I used to worry about it, so very much, but in the end I rationalised it. I couldn't help losing a leg, getting osteoarthritis and needing these things. Like you, I work full time. I pay for the things though my NI contributions and with the daily pain.
    Please don't judge yourself by other peoples shortcomings. You're doing brilliantly.
  • helpline_team
    helpline_team Posts: 2,772
    edited 30. Nov -1, 00:00
    Dear Rosycheeks,

    Thank you for letting us know how things are going. If you ever would like to go over your concerns, we are always happy to chat here or on the phone. You are entitled to treatment and should not have to feel apologetic. And I hope we can be of use as things go along for you.

    I wonder whether you might find our self management groups helpful?
    here's a link about them.
    http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Workshopscourses/Courselist

    If you did ever want a confidental chat about your feelings to do with arthritis and your tests/checkups - do just pick up the phone.

    Kind regards

    Guy

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