1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

UPDATE from Dea .... SCAN ON SPINE

Posted , 5 users are following.

dea13
dea13

Hi all, so my CT Lumbar spine scan was not as bad as we thought it would be, so Happy Dance soon I hope smile  Thank you all for your wonderful support and help :

Update

My scan CT showed I have 

LUMBAR FACET JOINT ARTHRITIS ) on my lower spine, that's the reason I can't stand or walk for more than 10 mins at a time without chronic spasm pain and have to sit 5 minutes before I can continue again. I already knew I had Osteoarthritis in my body else where, but didn't know about the spine, was not sure if it was the Prednisone or the PMR : GOOD NEWS : no nerve damage, none showing, or bone spurs. It's all muscle pain, also on both sides of my gluts, So I blame it on the steroids : Also since being DX with PMR in April and being put on Prednisone I have put on a lot of weight with them hate those tablets but there is no other cure for PMR yet. I am tapering down to a lower dose on 24 mg now from 40mg, and eating better now... So the good news is I can get this helped with Physio, some dry needling and massage to start  smile With this and the blood clot behind right knee, things should start to pick up soon, on blood thinners.

I just want my quality of life back now. As I know we all do.

So here is hoping the Physiotherapy works, I don't expect it to over night. 

I hope everyone is having a pain free day : Dea 

0 likes, 15 replies

15 Replies

  • FlipDover_Aust
    FlipDover_Aust dea13

    Posted

    All round that's pretty good news!

    I've recently started with a physion, and doing hydro therapy - I can't recommend it highly enough!! It's worked wonders on my sore back, torn glutes and bilateral hip bursitis. I can walk again!! I started with weekly massages too.

    I put on a LOT of weight from pred, inactivity and comfort eating, so I know where you are coming from. Take one step at a time. Success builds on success.

     

    • EileenH
      EileenH FlipDover_Aust

      Posted

      On another forum there is a man who developed PMR in his early 50s while he was still working as a fire officer and training for a marathon. He was so bad he was in a wheelchair. The Fire Brigade healthcare policy paid for hydro for him from the start. Fifteen months later he was back to running! We at the charity are sure that the approach taken for him would be helpful for us all - but getting hydrotherapy is next to impossible! Hospital pools are always oversubscribed for stroke rehab, RA and the like - use of one that was funded by an arthritis charity in the NE was denied to PMR patients "because it isn't arthritis".

    • linda17563
      linda17563 EileenH

      Posted

      Hello again,  Having been put up to 15mg (to start again!) I am having about 10% relief, nothing like when I started at this amount 5 years ago....but one has to do what these rheumies want us to...(my husband says I must, because he has the letters after his name!) how naive is he!....bless.....

      ​My question is....do you think going into a warm pool would help any of us anyway, I know I wouldn`t be able to move too much......or would we be worse a few days later.....can`t take anymore pain!

      ​Thanks again Eileen for any info.....

    • EileenH
      EileenH linda17563

      Posted

      Use of a hospital hydrotherapy pool would probably be very useful for you I would have thought - is there any chance?

      But if you have a WARM pool at a leisure centre nearby (often the one for mums and babies) just standing in the warmth and doing gentle stretches and walking in the water can be very helpful. Don't do an aquafit class perhaps  - I did but was very low key at first and simply didn't do as much as the others, Those pools tend to have steps down (and for getting out, even more important!).

      That's interesting - maybe he'll see that as confirmation there is something else going on. 10% isn't a good enough response for PMR - unless of course you really need more now which is possible.

    • linda17563
      linda17563 EileenH

      Posted

      I`m sure you`re right about needing more pred, but it dosen`t make sense to me...I`m frightened about going higher because of all the side affects...(those episodes!)  I could have managed at about 10mg previously, but the episodes, where I nearly faint etc were terryfying....no warning...this is why it puzzled me, that rheumie put me even higher.....he said lets start at beginning again as if you were my patient from the start, this is what you must follow, in 2 weeks time (taken 15mg for 2 weeks now)drop to 12, then 11  monthly until 6mg then slower....He has sent me a letter (copied to doctor) to state this, and added I`m not sure what`s wrong with this patient, because her blood tests are normal and she is still in pain!........oh joy......

      ​Thanks Eileen.....

    • EileenH
      EileenH linda17563

      Posted

      "I`m not sure what`s wrong with this patient, because her blood tests are normal and she is still in pain" - oh bless, is he having to treat a patient and not the numbers? He may have to think a bit!

    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      I'm paying for it as a private patient - Lucky that I can still work so I can afford to do so.

      The trap of being disabled enough so that you can't work, and not being able to afford treatment to get better is too real for too many people.

      I'm not sure I'll ever run again, but I'm starting to think I can swim and ride a bike.... and of course, walking would be nice. lol

    • FlipDover_Aust
      FlipDover_Aust linda17563

      Posted

      I'm POSITIVE that a warm pool/spa will make you feel much better. Besides starting hydrotherapy recently I actually have a swim/spa (very large hot tub) at home and I use it ALL the time. It has helped me so much, particularly when I could barely walk. I can't recommend it enough.

    • dea13
      dea13 EileenH

      Posted

      Thanks Eilen H : I will look into the hydro here, I also have Osteroarthritis : So maybe that may make a difference : 
    • dea13
      dea13 FlipDover_Aust

      Posted

      Hi, Thanks for that information on the Hydro,  I will look into the hydro here..  I'm willing to tey everything to get my walking back.

    • EileenH
      EileenH FlipDover_Aust

      Posted

      The gym I joined after PMR started up had a warm pool (too warm to swim, even for me!) with a spa - so I did my aquafit class and then had some time in the steam room (it was better than the sauna I found). I didn't use the hot tub a lot. But they did seem to make a big difference to PMR even without pred.

      The guy I told you about has a profile and story on the NE PMRGCAUK charity site - John Robson. He's back climbing mountains too:

      "John was a very fit and active 51 year old when he was diagnosed with PMR in May 2013. He completed a 21 month steroid reduction programme and has returned to running and climbing, and in October 2015 returned to high altitude mountaineering with an expedition to the unclimbed and remote Mukot Peak in the Dolpo region of the Nepal Himalayas."

    • FlipDover_Aust
      FlipDover_Aust EileenH

      Posted

      What a positive story! It's my head that needs the most work these days. Since getting PMR I have discovered that I have some faulty ways of thinking when it comes to my body, food and illness. My coping strategies are not what they should be.

       

  • amkoffee
    amkoffee dea13

    Posted

    I have been dealing with lower back pain for 13 years I have arthritis in my facet joints as well as my SI joints. There is a treatment they can do that involves an injection in your facet joints that help with the pain. This is different than the dry needling. I personally have never had the dry needling and I actually did not have any success with the injections into the facet joints but that doesn't mean it wouldn't work for you. But like you I have suffer from the spasms horribly bad. I'm to the point where I can't stand for more than two maybe three minutes before I have to sit down and eventually I have to lay down. Physical Therapy helped me a great deal the first time I did it. But I did it for a year and I was a lot younger a lot thinner and I didn't have any other problems other than my lower back. I have since then had a lot of changes to my body and I have not kept up with my exercises and I am in very bad shape. So I don't really expect the kind of success I had the first time. I am just hoping I'll be able to stand longer then two or three minutes. I wish I could give you better hope but I can't. Not even muscle relaxers have really help me much. Although I do take them all day long. During the day I take Baclofen which doesn't make me tired and then before bed I take something called Tizanidine which makes me very tired dizzy and like I'm almost drunk so obviously I couldn't function on it which is why I take it at bedtime. I would love to be able to take it during the day because it works the best. But when I'm having a really bad day I will use it during the day and then just not go anywhere. One thing I found with PMR is that when my PMR is flaring the pain in my back is excruciating. I can certainly tell the difference. I tried to tell my rheumatologist this and she denied that. She just makes me so angry sometimes. Good luck on your back problems. You have any more questions don't hesitate to ask.

    • dea13
      dea13 amkoffee

      Posted

      Hi, so sorry to hear you have had that back pain for so long. Thanks for the information :

      I'll try all the therapy, and hope it helps... We can only Hope : 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.