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Advice please

Posted , 13 users are following.

michelle06123
michelle06123

Good evening, I am 54 and started develop PMR symptoms whilst recovering from surgery on my foot. 8 weeks ago,  at first I thought the terrible pains in all of my joints was due to poor posture from the use of crutches for 5 weeks, then I got the flu on Xmas day and the pains got really unbearable. The stiffness when I wake up is the worst and sitting down and getting up. I dread bed time because it’s so darn painful.  My foot was healing nicely but this joint pain was nothing I had ever experienced except when I had operations on both frozen shoulders 10 years ago. I went to the doctors as I was due to return to work and she said “ it’s the flu” but the flu came and went and my pains stayed. 7 weeks later from when it started  I have finally seen a  rhumatologist who thinks it is PMR but I have to wait 2 weeks to see him for the diagnosis and this is  through BUPA. I am back to work and struggling to manage the pain and stiffness and driving hurts my arms and neck. I am so stiff when I get out of the car too.  I bathe, rub volterol into my joints morning and night and take co cocodomol with parecetomol in a morning and at night but only take patecetomol during the time I’m at work. I used to take ibruprofen but he told me my blood pressure was dangerously high so I stopped that straightaway. Please can you advise what would help to manage the pain until I get confirmation of the diognosis as I’m not coping too well 😞. Really sorry for the length of this but don’t know wear to turn at the moment x

1 like, 77 replies

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  • ptolemy
    ptolemy michelle06123

    Posted

    I am so sorry you may have PMR on top of everything else. The only thing that will help is steroids. I am afraid paracetamol and co codamol really have no effect. If they do it is possible it is not PMR. I really feel for you as I know before I was diagnosed I could hardly get out of bed, being told I had a virus by my GP. Is there any way you can ask your GP to give you a week's trial of steroids, if you have a magical improvement, it is very likely you have PMR. 

    • michelle06123
      michelle06123 ptolemy

      Posted

      Thank you for your reply I’m going to ring the consultants secretary tomorrow morning and ask if I can be seen sooner than the 30th Jan. when I questioned the Consultant about Having to wait 2 weeks he gave me the reason that they were short staffed. ( it’s a BUPA hospital so I pay for this) I wasn’t happy to hear this. Please  can you remember how long you waited for your results to come back on your diagnosis for PMR? 
    • ptolemy
      ptolemy michelle06123

      Posted

      Hi Michelle, I had to wait a couple of weeks to see a rheumatologist privately as he was on holidays, the waiting was awful. My GP said I had a virus, a long term virus. Can you see your GP now rather than going to a rheumatologist? 
  • margot34956
    margot34956 michelle06123

    Posted

    Hi Michelle, I am so sad for you, with your other problems and maybe PMR, sure does sound like that. I have been through the same pain before diagnosis. I was able to take ibrupofen as with you, getting in and out the car was almost impossible.

    I was not going to take steroids but am now on them. I am 55 and like you are quite young to get this.

    Unfortunately I don't have help for your pain relief, others on this site will probably have suggestions.

    I really just wanted to say I feel for you and wish you all the best, and hope you do get the help you need.

    • michelle06123
      michelle06123 margot34956

      Posted

      Thank you Margot, I’d never heard about this condition until the consultant mentioned it.  He just said keep taking the painkillers but I ve tried Codeine, co co domol and parecetomol and combined them and nothing works.  I go through tubes of voltorol. I have another 10 days to wait to see him though I am going to ring tomorrow to see if I can be seen sooner as I don’t want to compromise my job as I’ve only just gone back to work after being off for 6 weeks with a broken foot. I’m just very miserable at the moment. I wonder if my high blood pressure is a result of this awful pain and the stress it causes day to day. 
    • celia14153
      celia14153 michelle06123

      Posted

      Hi Michelle, I had the same symptoms and polymyalgia was suggested. My GP was happy to prescribe a couple of weeks’ supply of prednisolone to see if dealt with the symptoms supporting polymyalgia as

      the correct diagnosis. Steroids are the only thing that reduces symptoms. For some people relief comes within 24 hours, in my case it took a week and I had to up dosage to 25mgs, rapidly reduced to 20mgs. I didn’t see a rheumatologist for six months! Unfortunately a lot of GPS don’t know enough about Polymyalgia and you have to educate them. Good luck! 

  • pauline36422
    pauline36422 michelle06123

    Posted

    yes my dear as the others have said, only steroids will move the pain.  and it will do that within a couple of days.  

    please do not  be afraid  of taking them, lots of people have  side effects  but lots dont,  i for one  have had no side effects  at all.  and i am in my 5th   year.  hopeing now  pmr is burning itself out.  which it does   eventually.  that is a good thing  to know  you wont have i  for ever,  good luck x

     

  • stevep63
    stevep63 michelle06123

    Posted

    There seems to be a lot of people on this forum who have started with PMR symptoms post virally who are in their early 50's! That was the case for me when I started age 53 last year! Only steroids helped with the sympts you have described! I am active and have managed to continue working. The steroids had no impact at 10mg, my starting dose! I went to 20mg then 25mg and eventually 30mg until it had it fully under control. I stayed there for 6 weeks until the bursitis pains/aches in the hits stopped. I am now down to 13mg/day and am dropping to 12mg next monday! You need to shout a bit louder with BUPA! I had the same and when I stood my ground, i saw her within two days!!!! Good luck with it all! 

     

    • michelle06123
      michelle06123 stevep63

      Posted

      Yes I will shout louder tomorrow morning when I call. May I ask you  something, my wrists are affected as are all my joints but this weekend after driving to work each day  last week which is starting prove difficult my wrists were very sore and after preparing a homemade soup and all it entails my wrists became so swollen that I can not even lift the kettle to make a cup of tea. Is the swelling part of the condition?  
    • stevep63
      stevep63 michelle06123

      Posted

      When my dosage is low enough for me to experience symptoms, usually the only ones i get are joint stiffness in the odd finger or thumbs in my hands. If they get really stiff, it is painful if I try to bend them and they become very weak. I usually get some wrist stiffness at the same time, but my wrists are only painful if i try to put any pressure on them. I have never had any swelling, even with the muscles in my legs/shoulders when it was at it's worst pre pred! I'm not sure if swelling is consistent with PMR. From what I see on the forum, it's usually pain and stiffness associated with it. Eileen would be the best to ask about the swelling as I am not well enough informed about the condition.

    • EileenH
      EileenH michelle06123

      Posted

      Something called RS3PE syndrome sometimes happens alongside PMR and that will cause swelling. 

      Mind you - if I tried to prepare homemade soup my hands would kill me afterwards! I stick to soft veggies like leeks. And I have no excuse again now - I got a new food processor for xmas...

  • EileenH
    EileenH michelle06123

    Posted

    I'm sorry - if it is PMR then nothing will really help the pain - ibuprofen is sometimes enough to take the edge off the pain but that is rare and you have been told not to. Purely out of interest - what are they doing about the "dangerously high BP"? I realise the average rheumy doesn't know much about general medicine - but it would be a good idea to look at the whole patient! 

    If he is waiting on blood tests to assist his diagnosis then the ESR/CRP inflammatory markers should be available in 24 hours and many doctors would simply start pred in the meantime if it were to be longer for other rule-outs. The speedy response to 15-20mg/day of pred is also a clue - PMR is characterised by a fast response while a lot of other things that might cause similar symptoms don't. A week of pred is no big deal - you can stop it immediately if it doesn't work, tapering is only required after a few weeks. Your very pricey encounter with an NHS rheumy (there are very few private rheumies who don't work in the NHS) doesn't sound impressive to me! 

    In the meantime, try warmth. I had 5 years of PMR without pred so I learnt how to cope and later we talked a lot about morning stiffness and managing it in the early days on the forums. Using an electric blanket in the morning BEFORE getting out of bed does make getting out of bed slightly less of a trial and then getting into a warm shower where you can do gentle stretches also seems to get the blood flow to the muscles going and allows easier movement - once you are moving a bit you should get less stiff. The pain is another matter - I never found anything that helped that until I got 15mg of pred. Magic!

    If the consultant won't play the game - and you are paying for his services after all - then go back to your GP. In the UK PMR really is generally diagnosed and managed by GPs so if the consultant says "probably PMR" your GP must be able to help.

    What worries me at present though is the possibility that you have more extensive inflammation than "just" PMR - if you have large vessel vasculitis or GCA then that COULD account for your very high BP. Which needs investigation asap anyway.

    • michelle06123
      michelle06123 EileenH

      Posted

      Thanks to all of your helpful responses. The consultant advised me to see my GP about the high blood pressure. So I saw him Friday  and he advised me to buy a BP monitor and monitor my BP twice daily until I see him in a weeks time. I did buy one and It remains high  but with the readings he can work out an average. He booked me an ECG on Tuesday.  I will keep you updated.  Thanks so much for listening.  I will also try and bring the rhumatologist appointment forward if I can. 
    • shirley01187
      shirley01187 michelle06123

      Posted

      Michelle06123, I feel like I need to apologize to you. As was pointed out to me, I should have started a separate post. I was unsure how to start in the forum, so I just kind of started at random and it happened to be a reply to you. I'm sorry, the comments were about me and was not an answer to your question at all. So, for my ignorance of seeming to intrude on your question, I am truly sorry. In no way was I trying to "get an answer " to my questions over or before you got answers for yourself. I would never want to make someone feel that what they have to say  is insignificant. I will be moving on. I wish each of you health and happiness. I'm sorry for my ignorance. Maybe if I decide to join another site I'll use what I learned here and do it correctly.wink

    • Anhaga
      Anhaga shirley01187

      Posted

      Shirley, our longer threads are all like this, with all sorts of people popping in and out and various tangents.  I only thought you might want to make a new post so that your specific questions could be properly addressed.  I'm sorry if you thought I meant anything other than that.

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