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is this a flare up

Posted , 4 users are following.

vanessa66630
vanessa66630

have been on pred for 9 months started at 15 now down to 8, for the last couple of months about 5pm when cooking supper have awful pain in my hip buttock area, told rheumy about it, he did not really comment then on saturday out of the blue pain so bad and this time travelled down to my foot, could not stand on it at all, rested until monday morning no better phoned rheumy, he was completely booked up phoned hip specialist as had have this same thing happen before being diagnosed with PMG, he was puzzled as had not been feeling well had stopped taking statins as felt my joints hurting a lot, he x rayed hips they were fine, I told him I had the same thing happen 2 years before when in Florida had injection and it was goe within 5 hours, this time he really did not know but said it obviously could be PMG, he organised me to have steroid injection immediately as I was in a wheel chair as the pain was unberievable, but if I went in a crouch position and tried to walk the pain was gone but the moment I stood upright it was terrible, after the injection he told me it would take a week or so to reach its peak, it is slightly better today, I am so lucky as I belong to Bupa so get seen quickly, really dont know how I would cope under normal circumstances. Phoned Rheumy sec to ask him if I should upp my dose, she phoned back and said no but to wait a week or so and see how  things go, do you think this was a flare?

0 likes, 12 replies

12 Replies

  • EileenH
    EileenH vanessa66630

    Posted

    No - I've just written about this on another thread too.

    I have similar problems, it is due to myofascial pain syndrome which leads to the formation of trigger points on either side of the spine: in the shoulders, between the bra strap and the neck, at about rib level and inthe lower back where the dimples are on your bum (if you have them). They form hard knots of muscle fibres which are concentrations of cytokines, the same substances that cause PMR. If they get bad they can cause the muscles to go into spasm and pinch nerves, just like a "slipped" disc is said to. If it is in the lower back the pain can radiate into the leg and if the sciatic nerve is the one affected then the pain can go right down to the knee and foot.

    I ended up in hospital - having woken about 4am and gone to the loo (as you do) I got back into bed and then went to adjust my position only to realise I couldn't move! I don't need to tell you what it was like! A maximum dose of ibuprofen got me to the stage where I could inch my way to the car and David took me to A&E! Straight onto a trolley - I couldn't sit. I got infusions of pain killers, steroids and valium - a standard procedure here for the problem but reacted rather badly to the iv valium but by then the initial problem had gone and they handed me over to the pain clinic for the slower version to complete the job.

    She used cortisone shots and manual mobilisation of the trigger points and I had some physio. Its pretty much OK but I have to be careful - some movements will give me a reminder, especially cleaning floors! (So that's alright then ;-)  )

    I have had Bowen therapy since and that also helps a lot - it is what I used in the UK because I've had the problem all the time I've had PMR and it often is found alongside it. I know a few people with similar problems who have also used Bowen very successfully. Do look and see if you can find a local practitioner - you have to pay but it has no side effects and really does help.

    • vanessa66630
      vanessa66630 EileenH

      Posted

      Hi Eileen, thank you for your reply, I had injection on tuesday and although hip feels a bit better the pain has got much worse in my calf area and foot, is this normal? i really have a job walking with crutches and am not taking pain killers as do not know what I can take with steroids, also dont know how long injection is going to take to work, am meant to be going away end of May, but if this gets no better will not be able to go, pain really bad!
    • EileenH
      EileenH vanessa66630

      Posted

      Did they check the calf and foot for any other problem? 

      You can use paracetamol and cocodamol with pred. I also found that a hot water bottle across the painfula rea really helped too.

      Do try and see if you can find a Bowen practitioner locally.

    • vanessa66630
      vanessa66630 EileenH

      Posted

      hi Eileen, had injection last tuesday, still bad am meant to be going on cruise on 20th but could not go as I am as need crutches to walk, pain radiates from my hip to calf, when I go in a crouch position and try and walk pain goes,  If I push when going to toilet pain radiates down my leg. no pain when sitting, cant turn over in bed, still wonder if it because I cut down on steroids to fast, was ok on 10 but in my journey to 8 pain started up in my hip when I was standing, pain did not start until late afternoon, have gone back 2 days ago to 10 pain only slightly inproved, so sorry to bother you again but really dont know what to do. thank you.
    • EileenH
      EileenH vanessa66630

      Posted

      Have you been checked for a prolapsed disc? This could well be nothing to do with the PMR. If you have any other problems with going to the toilet you do need to be checked by an expert - A&E if necessary. After 3 or 4 days if you still can't mobilise it may be something far more than just a flare/spasmed muscle - I was admitted to deal with sacroiliacitis because I couldn't even GET to the loo! A massive dose of muscle relaxant did make a difference. Do consider calling 111 or going to A&E.
    • vanessa66630
      vanessa66630 EileenH

      Posted

      Hi, sorry have not replied sooner, spent 5 hours at private hospital yrsterday to rule out hip problems they now are pretty sure that it comes from the spine and is probably spinal canal stenosis, trying to see a neuro specialist now, can this have any links with PMR, it is just so good to have you , feel really blessed, my husband says ask that lady a thousand miles away!!!
    • EileenH
      EileenH vanessa66630

      Posted

      Do I remember MrsO has a spinal stenosis problem????? Do ask her.

      I don't think there is necessarily a link with PMR as such - just aging! I haven't time to look it up properly just now as I have to meet a plane!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey vanessa66630

      Posted

      Vanessa, Eileen is almost right!wink  I have spondylolisthesis, a slipped vertebrae towards the base of my spine.  When first hit by the severe pain of what we now know was PMR, I, a GP, a physio and a consultant all thought I was now in serious need of spinal fusion.......until the orthopaedic consultant got the results of an MRI scan.  He decided that the severity of the spondylolisthesis was not sufficient to warrant me being in a wheelchair in so much pain, decided against the surgery and said something else was going on.  It took another year for the PMR diagnosis, but thank Heavens for that orthopaedic expert!  Although I had suffered the slipped spine for some years following a severe fall, the PMR arrived hot on the heels of a nasty stumble off a train.  It was an unfamiliar station, dark, and both my friend and I tumbled off due to an unusually steep drop - that platform has now been raised!! 

      Certainly, I found that having a serious spinal problem together with PMR did muddy the waters, sometimes not knowing which pain was which.  In the early days before the PMR was diagnosed, and I was bedbound for months with the pain, I had one scary experience when I got out of bed to go to the loo and my one leg just buckled without any feeling in it whatsoever.  I have also had several bouts of sciatica.

      I apologise for going into some depth, but I thought perhaps something in my experience might help you.  Did you have an MRI yesterday?  I remember that my spinal canal was reported on in the notes following my MRI.  Have you tried upping your steroid dose for a few days to see if your pain resolves?

    • vanessa66630
      vanessa66630 MrsO-UK_Surrey

      Posted

      Dear Mrs O, thank you for that, am waiting for hip specialist to get a copy of my MRI scan that I had done a few months ago, all I want to know is what is wrong, If I have to be in a wheelchair then so be it I have had a really good life and nothing will really change I will still manage to do what I need to do,I do not have any pain when sitting, worse proble cant turn over in bed  and toilet duties a problem!!!! but where there is a wii there s a way. thank you for being kind enough to reply.
    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      When you look up spinal stenosis, spondylolisthesis is given by webmd as one of the causes! I was on the way to the airport this morning and just had time to see that before leaving wink  and spondylolisthesis rang a bell.  

      Thank goodness for copy and paste - quicker than checking I'd spelt it right so I hope you got it right in the first place! And people complain about polywotsit and giant thingumybob...

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      "I hope you got it right in the first place!"

      Oh ye of little faith Eileen!winksmile

      Yes, it's true that spondylolisthesis can lead to spinal stenosis but I wasn't diagnosed with the latter when I had the MRI years ago.  There's possibly something going on in that area now though, as the numbness in my toes is worsening, especially overnight.  Yes, it does seem that I like gathering illnesses with unpronouncable names - remember when both Sjogren's and Mickulitz's syndromes were suggested by my rheumy alongside PMR/GCA a few years ago?!  Even my GP said he needed to look that one up! 

    • MrsO-UK_Surrey
      MrsO-UK_Surrey vanessa66630

      Posted

      Vanessa, being unable to turn over in bed was my very first symptom leading to the diagnosis of Spondylolisthesis - much like those first symptoms of PMR.  If I awoke on my back I was in agony and had to put my arms up to the top of the headboard to get myself off my back.  And I know exactly what you mean about the problems with the toilet!  However, unlike you, when my back goes into spasm, I do have a problem with sitting - the whole motion of getting down into the seated position - but once there it's easier.  When first diagnosed, I was fitted with a surgical corset and that helped.  I now resort to a supportive panti girdle if and when necessary which works a treat in a couple of days - the original no longer fits my original small frame!  I was referred to an osteopath for stomach strengthening exercises to support the problem spine.  I was also advised to go swimming on my back only - aquarobics helped.  I feel sure you won't be facing life in a wheelchair - whatever the MRI reveals, hopefully it can be treated.  I have all my fingers crossed for you.
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