knees really hurt!

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bridesmum
bridesmum Member Posts: 181
edited 18. Mar 2015, 18:31 in Living with Arthritis archive
I have OA in my knees and hips and various other places as well as fibromyalgia. My fibro has been particularly horrendous for the last few months and I have had very little appetite also.I saw my gp 3 months ago who said lets check your thyroid and diabetes, to cut a long story short it turned out that I had been taking insufficient thyroxine for at least 6 months which explains the weight gain despite not eating much. I had the bllod tests repeated this week and the nurse made me an appointment to see the gp for the results. Needless to say when I went for the results they weren't there. I joined this practice in november last year when we moved house, I have been 3 times and seen a different doctor each time. This weeks doctor was about 12 and very pleasant, did a lot of ummming but didn't really listen to what I was saying. I explained that I don't really take painkillers during the day but every 4 hours through the night, he agreed this was a good idea but when I told him how very occasionally when I am in absolute agony I really want to get a gp out to give me an injection of morphine . He said we only give morphine to terminally ill patients as it's addictive...really! I never knew that. Just read this post back and realised that I am regularly in absolute agony, but could do with some help when I'm in screaming, unbearable agony! He seemed to put all the pain down to the fibro, I said that my knees were so painful that I sometimes can barely walk. He just said thats the problem with fibro a lot of people end up in wheelchairs, he gave me a prescription for pregabalin and sent me on my way. I also mentioned polymyalgia rhumatica as the symptoms are similar to fibro but can be treated with steroids, but again this was ignored. One of the symptoms of PMR is raised inflammatory markers which I have had on every blood test for the last 14 years which no gp has investigated further.

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    I empathise. I suspect things are worse at night because you are not taking the pain relief during the day so it all builds to a lovely crescendo of pain come the dark time.

    Getting ahead of the pain is a good strategy, I do so by taking my first two cocos between 5 and 7 am, then a further couple between 1 and 3pm, then the last two between 8 and 10pm when I go to bed. Once I am coping better with the pain I can then cut out the lunchtime ones which then gives me further room to manoeuvre with the dosage.

    I've learned over my arthritic years, as more and more joints joined the party, that pain-free is a pipedream. I have had to adapt my life to cope with its demands, I cannot pretend it doesn't exist because it does and I ignore it to my detriment, and when times of upheaval approach I have to rest more and work a little less. The docs are limited in what they can offer, much of the responsibility for maintaining our health as best we can falls upon us, discovering our personal coping strategies takes time and experimentation. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
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    Oh Lovey you are suffering...have you been referred to a pain clinic, has for injections there are steroid one and I have once had this at a walk in center if you could try that...its rotten when your GP doesn't listen to you, they are busy and see so many patients in pain, you need to make yourself heard..it took me a few years and happened after I changed GPs..Like DD says you need to keep on top of the pain, I try not take all my meds but have learned what I can get away with, because the day will come when they stop working and then there is nowhere to go..hope you get some relief very soon ((()))
    Love
    Barbara
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
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    Are there other G.P practices close by to you or is this one the only? I moved to two different practices before I moved to the one I'm at now because I felt I wasn't being heard or treated correctly. Now I'm extremely happy and see the same Dr who has listened and I have a great relationship with and she started from scratch with me and got me to where I am now. It's best to find a G.P who listens & understands you rather than a G.P that you feel like speaks a completely different language than you! It's your health and that's one of the important things you need to take care of.
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
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    I am seriously considering moving to a new practice, the only thing putting me off is having to do all the messing about with organising repeat prescriptions. We only joined our current practice in november last year and the prescription saga was ridiculous :x I think that I'll have to take the bull by the horns and do it though.
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
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    It must be so very frustrating when your GP doesn`t listen, and you feel as if you are being dismissed without a second thought. We have a very small single doctor practice, so can always see the same doctor, who is really very good.

    DD made a good point about getting ahead of the pain - our GP calls it the ` analgesic ladder,` where you take a base level painkiller, like paracetamol, regularly throughout the day, then top it up at night with stronger ones as necessary. Mostly this works reasonably well for me, but we are all different, so what suits one won`t necessarily suit another.

    When things are really bad I resort to slow-release tramadol. I hope you can get some relief soon.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    Starting with a new practice can often produce teething problems but, if you were to change again, there's no saying you'd have the same amount of prescription problems next time.

    I would guess you'd be able to see the same doc each time provided you were willing to wait. Some are invariably more popular than others. I'm lucky in that I like all 5 or 6 in our practice.

    Your bloods will have been sent off to a lab and sometimes results get back more quickly than others. My practice always suggests ringing to check they've got results before making an appointment to discuss them as it saves wasted time all round.

    Barbara's quite right that a steroid jab might be an option. I hope the pregabalin helps. I understand your pain and frustration but I think many GPs would hear alarm bells ringing if a patient (especially a relatively new one) implied they wanted morphine – with or without a doc to come out at night and administer it :o
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
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    It was the nurse who took my bloods who said that she would make me an appointment for the next day as they would definitely be back.I have only visited the practice 4 times and each time I have had to explain my condition, the only reason that I would like to see the same doctor more than once is to save time out a very short appointment to get them to understand what I need their help with. I suppose it could look suspicious a 55 year old grandma coming in to a new surgery asking for morphine but it didn't really cross my mind as I'd previously been offered morphine patches at my last surgery. My sister who has migraine has a special pen/syringe to use when it is unbearable and I thought there might be something similar or a single dose of oramorph that I could use when things get unbearable fibromyalgia or arthritis wise. I wouldn't call out a doctor but neither could I get to A and E when things are in such a state that I need help so I just have to endure it. A friend of mine who also has fibromyalgia has a gp who will come out to her when she has severe muscle spasms and give her an injection but I wouldn't expect my gp to do the same.
  • stickywicket
    stickywicket Member Posts: 27,731
    edited 30. Nov -1, 00:00
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    It can be hard, in appointments, trying to be as brief as possible while still giving any essential info. I think we tend to learn on the job but I'm sure, with all the patients they see daily, docs can't remember who said what anyway and a quick recap is usually needed.

    I think it was Barbara who suggested a Pain Clinic and this might be a way forward for you. Dealing with pain can be a matter of finding the right meds for a person rather than always heading for the bigger guns.

    How are you getting on with the pregabalin? I hope it is helping.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    We know we are individuals but to the medics we see we are yet another face in a long line of faces all demanding demanding demanding - it cannot be easy for them. I rarely see the same GP twice (my practice has many) but I don't often go because I am used to dealing with things. I think you are still some way from acceptance and coping, and that is difficult. The GP who, a few years ago, offered me oromorph had previously worked in a Hospice so had a better understanding of pain. I took it occasionally but surprise surprise, the pain always resurfaced so I couldn't see the point.

    This is the plain fact with all manner of pain relief - any relief is temporary. We have to learn to live with the pain rather than fight against it. Of course none of us want to be in continual pain but all of us on here are, be it in one joint or many. It affects all areas of our lives, it affects those around us but most of all it affects us. It's far from easy, it gives us daily challenges which are both demanding and unreasonable but it's how it is. Maybe you should ask for a referral to your local Pain Clinic, they may offer you the same drugs but hopefully they will be able to suggest other ways to contain the pain. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
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    I haven't been to a pain clinic, but when I attended a 10 week fibromyalgia course which was run by a psychologist and a nurse one of the speakers was a pain clinic consultant/anaestatist. He was quite against taking regular pain relief especially anti inflammatory and anything containing codeine. The only thing he really recommended was amitriptyline which i have been taking for about 14 years and pregabalin. He said that too many people are over medicated which makes them even more drowsy. I must admit on his advice I stopped taking naproxen as I have had previous stomach ulcers. The doct4i saw this week recommended that I don't take dihydracodeine or any other pain relief during the day and only use it at night to help me sleep.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Oh my word, isn't that a gem? There is a world of difference between theory and reality - in my arthritic years I have met one rheumatology nurse who has RA but she takes around two hours to psych herself up to do her injection. (She would happily stab her patients without a second thought, and gave me one of the worst injections in my life because she didn't have her specs to hand.) As far as I know my consultant, my GPs and my physios are well but . . . . . they spout theory, we have to deal with reality. It's easy to preach to others when not much is wrong with oneself.

    If you've been taking amytryp for so long then I am not sure where else you can go - the options are limited. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bridesmum
    bridesmum Member Posts: 181
    edited 30. Nov -1, 00:00
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    The first doctor I saw at the new practice recommended that I double up my amitriptyline dose but bcause it gives me such I dry mouth on 25mg I can't take a higher dose as it makes me feel as though my throat is almost closed up :? I have been for a knee x-ray this morning and go for my complete blood tests tomorrow, smear test next week and diabetic eye exam the week after. Good lord I'm draining the nhs single handedly!
  • GraceB
    GraceB Member Posts: 1,595
    edited 30. Nov -1, 00:00
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    The only person at my GP's who knows everything about me is the computer.

    When asked who my GP is I've once or twice said "Dr Computer" -you should see the look on the person's face who is asking! It's a picture. :shock:

    We never get to see the same GP twice in a row and yes it is frustrating.

    I was told by pain clinic to always keep the pain under control or it takes longer to then settle. I used to tell my late Dad (he had very bad OA) to imagine the pain was a battalion of solders going up a hill. The meds were a barricade. Stop the meds and the barricade is breached and some of the soldiers get through. To turn the soldiers back you have to wait for the meds to fill in that breach in the barricade and that takes time. Being ex Army (he was in WW2), he remembered this and it helped.

    If I was in your position I'd be asking for urgent referral to pain clinic.

    I do hope you get this all sorted soon and you get your pain better under control.

    Take care,
    GraceB
    Turn a negative into a positive!