I’m lost

I finished my pred burst over a week ago and I can’t really explain how good it was to go 2 weeks with hardly any pain. I have had chronic bursitis in my hip for 2 years, and this is the first time in 2 years that it hasn’t hurt at all, even when I prod it. Of course the pred is starting to wear off and the usual aches and pains are coming back which is disappointing because I was hoping that I could get longer… I have had bad joints for the best part of a decade, and this is the first time since then that something has touched the pain… It is hard to explain how good it feels when you are used to an average of 2-3 hours of morning stiffness that suddenly with the help of 8 tiny tablets that you only get 15 minutes… That is less than 10% of what I am used to.

The pred started to wear off earlier this week, and my morning stiffness now lasts between 1.5 and 2 hours, which is still an improvement but after seeing that I could only have 15 minutes of morning stiffness, I’m not that impressed. The question is, what should I do now? I don’t have any active inflammation, but my joints are getting sorer, and they are getting stiffer… I don’t know whether I should try and see my GP and see what he says because I don’t want to let my joints get to where they were before. But there isn’t an awful lot that my GP can do in all honesty because, 1, I am refusing to take pred again unless I really need it and 2, he seems unwilling to prescribe any other NSAID except from Ibuprofen despite the fact I am supposed to be taking Indometacin long term… He even tried to tell my that Ibuprofen was EXACTLY the same time as Indometacin, which I find is quite patronising. They are in the same drug class, and they work with the same aim, but they are NOT the same medication.

So I wondered whether I should phone my Rheumy, who believes there is something going on but neither has the motivation or time to try and find out what that is… She told me to phone for an appointment when I am flaring, which I am not but then is pred helps maybe she should know that? Could that give us a clue to what is going on?

I would phone my Physio, but since I was 18 last month I am not actually under the care of any physiotherapist anymore… Which makes the whole hydrotherapy situation significantly more difficult because I don’t have anyone trying to sort it out for me. To sum up what has happened with hydrotherapy… I was referred in January 2014, I was approved in May 2014 and nothing has happened since despite many phone calls and one visit. The receptionists have tried their best but it seems like there is nothing anyone can/is willing to do and so it looks like I won’t be getting hydrotherapy. Or even if I was suddenly offered a place for hydrotherapy, I won’t be able to go now because I don’t have 6 weeks clear in my timetable for my 6 sessions… I’m not too upset about hydro because I had a feeling right from the start that I wouldn’t get it, what I am upset about is that I have been repeatedly told that I will get hydro which is a flat out lie, because no one can be bothered to do anything. It would have made my life significantly easier if they had told me that I couldn’t get hydro right from the start so I wouldn’t have spent literally hours on the phone trying to sort it all out.

So now I am lost. Actually scratch that… I have always been lost in this NHS system, that’s why it takes me 6 months to get blood test results and the results of my scans, and that is why it took me 17 months to get an appointment with my Rheumy which are supposed to take place every 6 months, and that is why I don’t know who to go to now… because I am totally lost in this fricken system. And if I do actually get into University to do Physiotherapy, I swear that my patients will be treated better than what I have been treated, and I shall make sure that they are not lost.

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3 thoughts on “I’m lost

  1. Of all the NSAIDs I have ever taken indomethacin was the worst. I went from having sore joints and massive fatigue before I took it to sore joints, fatigue and nausea and stomach pain.

    It is the most harsh NSAID of all and from my reading it seems now to be used mainly for gout. My UK friend takes Voltarol and is happy with it, as I am.

    Being stiff for so long in the morning must be awful and is not normal. If you have RA my own Dr in Canada feels that it is a medical emergency. In many people it does not show in the bloodwork.
    The fact that the pred works makes it sound like you have inflammation. Can you try to find a good rheum? Can the arthritis society there help, or a patients group? Maybe look for a major UK research study and see who the research Drs were?
    http://www.nhs.uk/conditions/rheumatoid-arthritis/Pages/Introduction.aspx
    http://www.guysandstthomas.nhs.uk/our-services/rheumatology/specialties/early-arthritis/referrals.aspx

    My friends in the UK seem to got very low key treatment for their RA. One needs surgery which has been put off for months

    1. Hey Annetta, I had issues with Indometacin too! It gave me horrendous headaches, and I had a massive flare whilst taking it which meant I couldn’t straighten my knee for about 8 months…
      If you don’t mind my asking, do you have RA?
      My bloods are clear except from a positive ANA… So apparently I have been diagnosed with ANF (what ever that is) positivity… But nothing has been done about that.
      I am hopefully going to University in September so I will hopefully get to see a new Rheumy then… And I think there is a research centre up there… As far as I can tell, RA isn’t taken that seriously over here

      1. Yes, I’ve had RA for 30 years and I was given the indomethacin before I got diagnosed. I had a very high ESR (sed rate) so at least when they finally did a test it was obvious. But I am sero-negative so that would have led some Drs not to treat for RA. My diagnosis came from an orthopedic surgeon who I saw as a last resort because my feet were so sore.
        By all means try the research center. There must be some rheumatologists where you are who treat aggressively. You are too young to settle for less

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