So fed up and angry!

bailey27
bailey27 Member Posts: 689
edited 7. Apr 2010, 02:59 in Living with Arthritis archive
Hi
Well thought I'd have a rant. I have been having a bad fews weeks with hip and lower back pain getting gradually worse. This has been since I have been cutting back on the pred. I phoned the rheumy hotline 3 times and it took them 4 days to call me back. To cut a long story short she finally called me back 6pm last friday and said nothing she cold do until she say the dr and she would call me back monday tuesday at the latest. Monday and tuesday went by, with my hip in absolute agony and to a point where I cant actually straighten my leg at the moment (not sure if it s my knee or hip - both painful!) I had physio at the hospital wendesday and as I was passing I called into the rheumy place as I still hadnt had a return phone call. I asked a nurse who was stood there if i could speak to someone, the look on her face, as if I was asking her to do back flips for me - that or i had something revolting stuck to my head!! She asked the other nurse to go check who looked and rolled her eyes at me as if i was holding her up. Baring in mind I am stood there in absolute agony and at my wits end becasue i had been suffering with this for well over a week and this was 9 days after i first phoned the helpline! I was told to have a seat adn to wait "but it might be while becasue they are busy" she said as I heard several memebrs of staff all giggling in the staff room together. a few minutes later someone came out and told me that she hadnt spoken to the doctor yet and that she would try to get hold of him adn ring me tomorow (today). well well surprise surprise NO PHONE CALL!!! how on earth can people in the medical profession treat people like this. i was tempted to get an emergancy appointment with my GP this morning I was in agony and didnt want to wait any longer but trusted in her that I would get a call back they could do something. I am now dreading not being able to see anyone before the weekend. I can barely walk, my hips or on fire, my back is as stiff as a board yet they dont care!!
I feel I am getting fobbed off.
Surely they cant treat people like this. If i'd had the energy, any other time i would have told them straight but to be honest I feel so exhausted I really havent got the energy for it.
I know this is because the pred has come down and didnt really want to up the dose as it has taken a while for me to reduce from 20mg to 15mg. since 4 o clock i have since taken a 5 mg pred tablet, 2 tramadols and 3 paracetamols. which will effect my stomach tomorow no doubt but didnt know what else to do. i was in agony and knew that the extra 5 mg of pred will pretty much sort out the pain hope fully by tomorow morning / the weekend.
How can people treat you like this, I am sure if it was their relative going thrugh it they would have bent over backwards to help them - I suppose I am just a number and they really dont care!!!!
«1

Comments

  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    well they do my head in you always hear how over worked they r then you see loads of them stood talking and you think what going on my rhummy dept not like that thankgoodness but some of the other ones r and it makes my blood boil if they can not even do the job they get paid for. they must know how much pain you r in get in touch with your gp do not wait any more is there another rhummy you can see???????
    val
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi valval, thanks for your response. Up until now they have been absolutely fantastic. but the last couple of weeks has felt like they really dont care. I have started physio and the they are wonderful, I spent part of my physio appoinmtment laid on a bed yesterday with a heat pack on, I was dreading doing any exercise as it was my first proper one after assessment but she completely understood and could see the pain I ws in. I felt a lot better coming out and she actually suggested to pop in on way out on off chance. Tey are absolutely fab and all the treatment I have had so far I have been happy with, although it hasn't ever been under control 100%, although from the sounds on other people it never really is.
    I know the department are very busy but to stan around talking to each other and treat me the way they did was horrible and I quite feel like never going back, but that wont do me any good.
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Bailey, how horrendous. When you are feeling better - contact PALS and make a complaint. Log all calls - time, who spoke to etc. Being in such pain is so terrible. Could anyone else start badgering the rheumy dept on your behalf?

    Please be careful with the paracetomol - you said you have had 3 since 4 o'clock and it was only 6 15 ... did you mean since 4 a.m.? Paracetomol can cause liver damage and all sorts if you take more than 2x500mg every 4 hours (and not more than 8 in 24 hours.) This is one of the meds that can do you harm if you take too many. Pharmacists are good at knowing which other drugs you can add to the mix ...

    Take care, be safe,

    Speedalong
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Bailey

    It sounds like a horror story. :shock: You have been in great pain for what seems like months.

    I hope you are making notes of all the sequences of events, dates, times of calls, names of people who answered the phone and promised to call back etc. Sounds like you have a case here of negligence. Medics do not like to hear that word mentioned.

    Have you the strength tomorrow to go and wait in the rheumy department until you are seen with a list of facts in your hand of the total lack of support you have been getting.

    What about a trip to casualty if you are able, again with the list of facts of non help you have received.

    An emergency appointment with your gp detailing the lack of support you are experiencing at this time.

    When you feel more up to it, as has been mentioned, contact PALS as this kind of treatment is cruel.

    I wish you all the very best and hope someone helps you before the weekend.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi both thanks for replying.

    Yes I have taken too many but to be honest the pain has reduced a lot and at the time I didn't know what to do. I needed to be out of pain as I felt washed out. It has taken the edge off and am just left with deep tooth ache in the joints now rather than the intense stabbing sensations. Hoepfully my stomach won't give me any hassle over the next couple days. I did take with a pint of milk so hopefully that will line it a bit.

    Yes to be hones the last 6 months have been my worst ever, just when I think I am getting somewhere I get brought back down to earth. I just can't control it at the moment. I am in constant pain although some days it is tolerable and can get by day to day and just get fatigued very quickly. This last 2 weeks has been unbearable. Everyday I have been reduced to tears from it.
    I am definately going to see my gp in the morning even if I have to sit and wait (or stand in $y case!). I cannot face a weekend of it again. Monday will be 2 weeks since I first asked for help and am definately not going tpo wait until then. I feel exhausted now from it all. Sorry to keep wingeing.

    If I can't get seen tomorow then I will definately go up to a+e. I have written down the 2 weeks of problems I have been having. Thanks god for the rheummy physios and you guys!
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    I truly wish you well tomorrow, Bailey and good for you for keeping a "diary" of events. I am sure that will come in useful at some point or other. I am relieved to read that you will go to your surgery and wait until you are seen. 6 months is a very long time to have been in such pain and it is not as if you have not been asking for medical assistance. I remember your postings from last year so that goes to show the impression they had on me. Sometimes it seems that the "oldies" are not given the care they should be entitled to, but you are YOUNG. I very much hope that you get listened to and something is done to ease your pain.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    bailey27 wrote:
    Hi valval, thanks for your response. Up until now they have been absolutely fantastic. but the last couple of weeks has felt like they really dont care. I have started physio and the they are wonderful, I spent part of my physio appoinmtment laid on a bed yesterday with a heat pack on, I was dreading doing any exercise as it was my first proper one after assessment but she completely understood and could see the pain I ws in. I felt a lot better coming out and she actually suggested to pop in on way out on off chance. Tey are absolutely fab and all the treatment I have had so far I have been happy with, although it hasn't ever been under control 100%, although from the sounds on other people it never really is.
    I know the department are very busy but to stan around talking to each other and treat me the way they did was horrible and I quite feel like never going back, but that wont do me any good.


    Exactly the same happened to me with physio department. They actually sent me upstairs to see the rheummy straight away and they did see me and help me. I know they are busy....we all know that but it is no excuse to leave people in such pain,

    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Thanks for that. I went to my GP this morning and he has given me some tablets to take. He said it was nerve pain which arises because of the constat chronic pain which can damage nerve endings?!?!?! Something like that anyway.

    I'm just glad i got seen and I was given something because even as of now I havent had my call back!!!!!
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    What did he give you? And more importantly are they working? Would the GP ring / write to the rheumy dept on your behalf too?

    Speedalong
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    bailey27 wrote:
    I'm just glad i got seen and I was given something because even as of now I havent had my call back!!!!!

    So am I relieved that you were seen today. Hope this weekend treats you more gently. Remember to keep writing all the sequences down. When you feel stronger, make some waves via PALS. Someone will be for the bullet!!

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    Bailey my heart goes out to you you've been having such an awful time. I'd ring your Helpline again and leave a message saying that a complaint is going in and you'd like some help please. It's totally out of order to have to wait so long and get no help even when you called in.
    It sounds like your GP has given you something to help and I do so very much hope it works for you. If you're not a good bit better by next week then don't hesitate to go back to her/him. They will assume things are ok if you don't.
    Best of luck, hang in there.
    rita
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hi Bailey
    Sorry I have only just seen your thread, I am so sorry you have been in so much pain, and been treated so badly, the nerve pain is awful it took me months to be told what it was, the good thing is that it dose come and go, if it didn't I couldn't have stood it any longer.
    Have you got ra or oa, i was told it is the bony growth on your spine touching the nerves and sending the pain down your legs.I find since I started taking amitryptaline it has eased (fingers crossed) I do hope things improve very soon, and you get the right treatment.
    You take care
    Barbara x
    Love
    Barbara
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi, thanks both. I am hoping these tabs will kick in soon, the are pregablin / lyrica. I have never felt anything like this pain, my gp told me it is because the nerve endings become damage due to chronic pain.
    I am looking forward to feeling better.

    I have what they called spondyloarthropathy often been referred to it as ankylosing spondilitis by physio and gp. When I went to gp today I got results of my scan which he said shows shermans disease in thoracic spine. Haven't a clue what this is as haven't had a chance to research it but from he told me is where there iit ois something to do with the shape of the vertebrae. If any knows any info that be great.
    I am certainly going to let them know they have let me down it is just that at the moment I feel too tired and exhausted from it all I don't feel I have the enrgy unless I burst out crying.

    Thank you so much for your support.
    X
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hello,
    I'm so very sorry you've been treated this way, its shameful. Does your hospital have PALS office, they can help with problems like the way you'r treated. Ours is a walk in office, no appointments needed. Or, if you can't face that, could you talk to your GP? I'm glad that you have some more pain relief, now anyway.

    Hope you soon get the help you need from rheumatology. Nerve pain can be so bad, I know from experience.
    Love Sue
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Thanks I will consider it if I dont get any help.
    Cant believe a second week went by with no call back at all after she promised several times.
    I have started the tablets and as yet no relief but he did say it might take a few days to kick in, I am taking 2 x 75mg Pregabalin. He said if no change enxt week then he will up the dose.

    I am very angry and hurt at the way I have been treated and really hope I get some answers,
    thanks god for GPs and Physios as they are the ones who are trying to help. It must be hard for them to try and help you when the rheumy people are not doing their job.

    As you can tell I am still very angry!!! :?

    Thanks x
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi Bailey

    How are you feeling now? You should write the rheumy directly and complain - it is not fair that they should promise to get back to you and don't. It's no wonder you are upset.

    Take care.
    Sharmaine

    bailey27 wrote:
    Hi
    Well thought I'd have a rant. I have been having a bad fews weeks with hip and lower back pain getting gradually worse. This has been since I have been cutting back on the pred. I phoned the rheumy hotline 3 times and it took them 4 days to call me back. To cut a long story short she finally called me back 6pm last friday and said nothing she cold do until she say the dr and she would call me back monday tuesday at the latest. Monday and tuesday went by, with my hip in absolute agony and to a point where I cant actually straighten my leg at the moment (not sure if it s my knee or hip - both painful!) I had physio at the hospital wendesday and as I was passing I called into the rheumy place as I still hadnt had a return phone call. I asked a nurse who was stood there if i could speak to someone, the look on her face, as if I was asking her to do back flips for me - that or i had something revolting stuck to my head!! She asked the other nurse to go check who looked and rolled her eyes at me as if i was holding her up. Baring in mind I am stood there in absolute agony and at my wits end becasue i had been suffering with this for well over a week and this was 9 days after i first phoned the helpline! I was told to have a seat adn to wait "but it might be while becasue they are busy" she said as I heard several memebrs of staff all giggling in the staff room together. a few minutes later someone came out and told me that she hadnt spoken to the doctor yet and that she would try to get hold of him adn ring me tomorow (today). well well surprise surprise NO PHONE CALL!!! how on earth can people in the medical profession treat people like this. i was tempted to get an emergancy appointment with my GP this morning I was in agony and didnt want to wait any longer but trusted in her that I would get a call back they could do something. I am now dreading not being able to see anyone before the weekend. I can barely walk, my hips or on fire, my back is as stiff as a board yet they dont care!!
    I feel I am getting fobbed off.
    Surely they cant treat people like this. If i'd had the energy, any other time i would have told them straight but to be honest I feel so exhausted I really havent got the energy for it.
    I know this is because the pred has come down and didnt really want to up the dose as it has taken a while for me to reduce from 20mg to 15mg. since 4 o clock i have since taken a 5 mg pred tablet, 2 tramadols and 3 paracetamols. which will effect my stomach tomorow no doubt but didnt know what else to do. i was in agony and knew that the extra 5 mg of pred will pretty much sort out the pain hope fully by tomorow morning / the weekend.
    How can people treat you like this, I am sure if it was their relative going thrugh it they would have bent over backwards to help them - I suppose I am just a number and they really dont care!!!!
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi sharmaine , still in a lot of pain today. This evening I have found easing off a little and so hoping the improvement will come tomorow too.
    I haven't had this pain before so am worried about it.
    I am constantly ina dull pain right up my back and the last couple weeks have been so intense I can barely move.
    I have also noticed that I have lumps come up in the glands in my groin and neck. Is this typical in a flare up
    ??
    .
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi bailey,

    you sound really miserable with the pain and I am so sorry you're still suffering so. :(

    I'm really worried about you having those swollen glands as this may be a sign of some infection somewhere :?: maybe you should be phoning NHS direct for advice?

    Iris x
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Hi, I mentioned this to my physio when I saw her and she suggested I tell the rheumy / dr but when I saw him yesterday my main concern was the pain and then forgot to mention it. I have had them there for years but when I get a flare up they tend to get bigger. Is it a common thing in arthritis?
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Hi Bailey

    I am worried too about you having those swollen glands along with everything else. I would truly seek further advice as soon as you feel able to do so. I so feel for you as it has all been going on for such a long time. I can quite understand that you forgot as all you wished for at the time was relief from the horrenduous pain you have been/are enduring.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    Thanks Elna, I will mention when I go next.

    I had the best night sleep last night in a long time, I slept right through.

    I ma wondering if this pain in my back is the arthritis though beause I woke up and hour ago and felt fine and just a bit stiff and achey but now I have been sat at the computer 10 minutes and the deep intense achey pain has come back with a vengeance, if I sit up staright and pull my shoulders back the bones inside all crack and pop and I feel an urge to slouch over. Is this normal??
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Good morning, Bailey, well I hope the day stays good for you or heaps better than they have been. I am so pleased to hear that you had a good night. What you describe does not sound normal. I wish I had medical knowledge to be able to help you. I hope you are able to have more sleep today too and movement will not be too painful for you either.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    I feel a lot better today. Very achey but dont have the pains shooting down my legs anymore which is WWWOONNDDEERRFFULL!!!! wwoooo hoooo.
    Just wish this was shorted out 2 weeks ago but hey oh, cant grumble beacsue in the process I lost half a stone!!!

    Isn't is crazy how just a small tablet can do so much good!.

    Ouch, I am aching but nothing compred to how I was.

    Thanks you so much for your support peeps!

    (I will be having a winge to the rheumy when I do get to see hium next as I think this has been handled terribly considering I still havent had the call back they promised me severeal times over the last 2 weeks!!!))
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi Bailey :D

    so pleased you had a better night :mrgreen: not so sure about the popping shoulders etc. though :shock:

    make a list for that rheummy so's you remember EVERYTHING this time. :roll: :roll: (please ask about the swollen glands)

    you take care and rest up.....even if you had a good night last night your body is coping with a lot...so don't overdo it. :wink:

    have a good day...sun is shining here and I'm going to dare sitting in the garden (with me hat and coat on!)

    Iris x
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi Bailey

    I'm glad you had a brief relief from the pain - you poor thing.
    Can I suggest you see your GP? She can then contact the rheumy straight away to get you an urgent appointment. There's no messing about then and to be frank you've been messed about a great deal.
    My OH has severe eczema and when he has a bad flare the GP is always his first point of call.

    I don't know what to suggest regarding the lumps in your groin and neck. I wonder if you have an infection????

    Let us know how you get on. In the meantime rest and don't lift a finger until you feel better.

    With warm regards.

    Sharmaine
    bailey27 wrote:
    Hi sharmaine , still in a lot of pain today. This evening I have found easing off a little and so hoping the improvement will come tomorow too.
    I haven't had this pain before so am worried about it.
    I am constantly ina dull pain right up my back and the last couple weeks have been so intense I can barely move.
    I have also noticed that I have lumps come up in the glands in my groin and neck. Is this typical in a flare up
    ??
    .