Update, I Need a Break....

silverfoxxxx
silverfoxxxx Member Posts: 125
edited 14. Feb 2020, 13:12 in Living with arthritis
Well my arthroscopy unfortunately didn’t help, although they said structurally my knees are in good shape, the inflammation has gone back into overdrive even after having some synovial lining cut out.

I have less movement and massively more pain than ever, physically struggle to walk at more than snails pace and eyes literally water getting dressed for work some mornings. Physio can’t seem to currently move this forward due to the swelling being a hindrance yet again.

Started my Leflunomide a few days back and currently no side effects so that seems good, to early for benefits but I’m going with an it won’t work again attitude so I’m mentally prepared for the worse, to many times now I’ve been told the next thing is the answer and can’t keep getting knocked back, it’s to hard work.

Now on Morphine for the pain as I haven’t slept in what feels like an age but tbh after two days it’s not as strong as I’d hoped, still wanting that non disturbed sleep. Fingers crossed things will change at some point in the future, I don’t know how some of you keep upbeat, I tip my hat to you all.


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Comments

  • Mike1
    Mike1 Member Posts: 1,759
    edited 30. Nov -1, 00:00
    Greetings, I have been on Morphine for years after going through the whole gamut of OA drugs, none of which worked properly and many of which gave me severe side effects. In my experience even Morphine will not counter the pain effectively, it just knocks the edge off, and sleepless nights are merely part and parcel of the perils of OA. I asked my GP for help with the disturbed nights and he merely said that as I am unable to work it didn't matter if I fell asleep during the day! Anyway, enough of my problems. Just remember that everyone is different and that everyone responds differently to the drugs available. Hopefully with the help and support of a decent GP/Pain Clinic a suitable solution will be found for you.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    How do we keep cheerful? In my case easily because I experienced what you are experiencing eighteen years ago: been there, done that, read the book, starred in the film, refused to do a sequel. I think I told you I had an operation which I thought would help (depsite no-one medical knowing what was wrong with me) and it didn't. It didn't help again when it was repeated eighteen months later, although by then I was taking sulphasalazine and probably something else. Operations help OA but, in my experience, don't do owt for an auto-immune because they do not affect the over-active immune system.

    There is no doubt that pain is frightening. It's the body alarm that something is amiss and needs sorting but, in the case of arthritis, the alarm cannot be silenced by anything for any length of time. Using the big guns of pain relief now is understandable but leaves you with nowhere to go should it be necessary. I tried morphine back in my early days and found it took me away from the pain, leaving me unable to function as a coherent, cogent human. It was similar to the gorgeous pre-op stuff or sedation for nasty procedures: the pain was muffled but still there, the difference was I didn't care. I've taught myself to conciously not care, it's there, it will always be there, but sensible pain duller usage and distraction is enough to help me deal with it.

    There's more I could say but I've said it all before, numerous times. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I'm sorry the arthroscopy didn't help. I think it's one of those ops that works for some but not others. I've read that some surgeons won't bother with it. On the other hand I know at least one person who had a perfect result.

    I cope with pain by ignoring it as much as possible, doing physio as much as possible and generally trying to fit in enough good stuff. If your knee is very swollen that will be difficult. I hope the lef kicks in soon.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Oh well here we go, got a formal warning today for my absence from work due to the time off for the failed arthroscopy and 1 1/2 day while being prescribed morphine to allow me to be able to work, the support of any sort has now finished and the slippery slope to my sacking from work has begun. [emoji22]


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  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Would it be worth talking to CAB? Or even our own Helpline people? They might be able to see a way forward.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Maybe, I’ll look into it after my occupational health referral goes through, had another meeting today and been told I’m not capable of delivery my job role fully anymore, which I contest as I still do a better job than my colleagues and on paper at reviews still out perform their grades. Apparently limping around the place is more of an issue for them than actual figures.


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  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Forgive me if I've asked this before but are you a member of a union?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Hi,

    Yes I’m in a union although these days that doesn’t mean much and support from them is minimal unfortunately.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Are you using any walking aids to ease the strain on your affected joints and thus improve your gait? Correct use also slows the spread to other joints. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Yes I have been using a single crutch since before Christmas, I stopped for about 2 weeks after the physio started to see improvement but my arthritis has flared again so back on it to aid the pressure, yet again I’m on Dmards and it gets worse, lol.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    That's good but maybe it would be of benefit to use two: I found that my walking immediately improved when using two, I was more upright which was better for my spine. I used them alternately, right leg and left crutch forward, then left leg right crutch. My walking speed also increased which helped morale and self-esteem as I was more able to keep up with a group.

    I was given crutches after my first synovectomy back in 2002 and had a good physio who taught me how to use them. I managed to get to one stick then it all came back so I've never truly ditched them. I like the ones with shaped handles as my hands are not too good - I remember padding the straight handles of my NHS gifts with yards of crepe bandages, not pretty but effective enough at the time. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Sorry state of affairs today, got a message from GP saying bloods came back with issue and they were going to call me, I phoned rheumy nurse told inflammatory markers had risen massively and to double my Leflunomide dosage to 20mg.
    GP called, bloods came back with increased inflammatory markers, I said I’d spoken to rheumatologist and told to increase dosage, GP not happy and told me to ring rheumy again, I told them I wouldn’t as not long come off the iPhone and told to double tablets, also asked GP to prescribe some more as obviously now using twice as fast and not many left.

    GP answer we will not prescribe Leflunomide while bloods are not correct, I said well only inflammatory markers are incorrect and Leflunomide obviously combats this, answer, we will not help you until bloods are back to normal, me banging head against wall, that’s why I’m on the new meds......

    The NHS is a mess, now not enough medication to get to Wednesday next week and Rheumatologist doesn’t take calls over weekend and they are always slow to get through answer machine messages, what is the world coming to.


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  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I am so sorry, what a Catch22 that is. My GPs have never been involved in my athritis prescriptions and I suspect no GP would increase a medication on a patient's say-so for very good reasons. I would hope the hospital would do an emergency letter to confirm the required increase medication but left hands don't talk to right hands let alone the hands of others.

    Did you speak directly to the rheumatologist or did the rheumy nurse consult and pass on the decision? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Direct from Rheumatologist, they have the prescription at the GP’s at 10mg and the new 20mg but it’s flagged as wont prescribe until bloods are correct, daft. They’ve always done my meds previously, first one from hospital then straight from GP’s after that. Makes the mind boggle, what with emails and phones these days and a linked NHS service my notes should be on the system for all who log in to see.


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  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I'm wondering.......

    It's not long since your arthroscopies, is it? Now, bear in mind this is pure speculation on my part but I wonder if your rheumatologist is feeling that the inflammation is due to the arthritis but your GP anxious that it might be an infection from the arthroscopies, in which case DMARDS wouldn't be advisable.

    There are still different opinions on the use of DMARDS pre and post op. My orthopaedic surgeon has, over the years, gone from very cautious to "It probably doesn't make much difference" whereas the surgeon who removed half my twisted bowel insisted on no DMARDS for 2-3 months. ("They're all poison" he smiled :lol: )

    Not that this helps you but it just might explain the differences of opinions and that both are, in this inexact medical world, valid.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Maybe, and a valid point, but I show no signs of infection other than swelling, which has pretty much been the exact same swelling for the past 3 years now.

    Hopefully they’ll decide between them, but it’s always us that are the messengers as they don’t actually speak to each other to air their opinions, and funnily enough they always seem to think the other is talking bs as they know best, lol.


    Also getting a bit worried as over time my knees are now bigger than my thigh muscles, can’t exercise them enough to prevent the wastage anymore which I’m sure is causing unnecessary stress on the joints.

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  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00

    Hopefully they’ll decide between them, but it’s always us that are the messengers as they don’t actually speak to each other to air their opinions, and funnily enough they always seem to think the other is talking bs as they know best, lol.


    Maybe you've just been unlucky with your practiitioners. I think mine have always communicated reasonably well both here and, where I used to live, about 160 miles away. Can you change one or another? I've certainly never heard one dis another though it was a bit of a disagreement that got me my first TKRs.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    My GP used to work in the same hospital as my Rheumy and they seem to know each other but definitely no love loss between them, not sure what happened in the past.....


    I may look at changing Rheumy some how as after 3 1/2 years of flare up I’m still no further forward than Dmards of different strengths.

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  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, how are things? As we haven't heard from you I'm hoping that means an improvement has occured . . . . . DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Unfortunately I wish that was the case, managed to sort out my prescription but other than that I’m a bit of a mess, wondering if the Leflunomide is actually causing issues, since doubling the dose I’m in more pain and now from head to ankles, toes are fine, lol. I’ve got bloods on Thursday and then an appointment with GP on Friday to discuss results.

    I no longer expect good news at this stage but I’m hopeful after this I can get into biologicals and get the ball rolling with something that will at least do something.

    Thanks for asking, this forum has been a god send as well as a messaging app with arthritis sufferers I’ve been using when I can’t sleep at night, it’s good to talk.


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  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    You seem to be a bit of a medical mystery. Great fun for eager medical students but none at all for the patient. I wish you all the best for the coming week. Please let us know how it goes.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    Well had in impromptu phone call to come into the injection clinic today, thought it was for a catch up regarding the non improvement, they actually stuck needles in to get out some gunk to see if either knee was infected, nothing came out of either knee, odd as they are swollen, and then put steroids in, which hasn’t solved anything in years.

    Now I’m not a Dr but the fact my knees are painful to touch and excruciating to walk on you’d guess that putting a needle in is a bad idea.....

    I’ve never shouted, screamed, sworn so much in my life, I bit my hand so hard I’ve still got teeth marks hours later, don’t think the nurse was prepped, she’d should have got the earplugs out, I did warn them, lol. Never felt anything like it in my life.


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  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I'm sorry it was so painful. Unfortunately, sticking needles in to test for infection is quite important given all your problems. I had to have my hip aspirated to test for infection a couple of years ago when I was in the worst pain of my life. Fortunately, like you, there was none.

    I've had steroid injections that worked and steroid injections that didn't. Worth a try when you're in so much pain already. Any joy?
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • silverfoxxxx
    silverfoxxxx Member Posts: 125
    edited 30. Nov -1, 00:00
    I’ll find out in a couple of days, just feels all sore and messed around with today, which is normal for me, worse after injection before it all kicks in. I’ve had plenty before but honestly never felt anything like the one yesterday, put me off ever having one again.


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  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I have had a number of knee steroidings and all were vile experiences until one nurse gave me a medical dose of oramorph, I floated through that one. None of them provided any kind of lasting relief despite my following their post-procedure instructions to the letter. Sometimes synovial fluid was there to be removed first, sometimes there wasn't and I soon learned that the size and heat of my knee was meaningless as an indication of what was happening inside the actual joint. The only steroid that achieved anything was in to my right ankle to 'treat' the OA in that. Three blissful months for one joint ensued then life returned to normal. The depth of disappointment far outweighed the short-lived benefit.

    Being called in to an injection clinic does suggest a procedure is due to take place but one is never prepared for the actual event. I count myself very fortunate that, despite all the injections and surgeries, my synovial fluid was never infected, I do feel I got away with something there! I know that synovial fluid oils the joints but whether it is also that which causes joints to balloon for protection I have no idea.

    I hope some benefit comes your way, it is not a nice procedure and, once the anaesthetic wears off, it hurts in a different way to the arthritis pain, I can still conjure up the sore feeling it causes. Ouch. :cry: Rest your joint tonight, thst will help the steroid sink in and get to work (if it so chooses). Good luck. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben