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UPDATE ON ME :

Posted , 12 users are following.

dea13
dea13

 

 

Hi everyone, some of you may remember me. I have just finished my 5 weeks of radiation for breast cancer 2 weeks ago, All went well, it was very exhausting every day, but had to be done: Oncologist gave me the all clear on my skin last week, it was burnt a little, which is to be expected on the breast. So good news. He did tell me the 1st few weeks after are even worse, chronic fatigue etc, but all getting better now. 

I thought GREAT!! now I can focus on the PMR and tapering : Down from 40mg to 25mg now: But she sent me for a scan on my knee, it had been aching down the leg and up and behind the knee. They found a large blood clot : WHAT?? So straight on blood thinners for 3 to 6 months. I now call myself "  The Never Ending Story smile 

I will still taper off the Preds, just makes it a little harder, I will go slow.

I am still getting chronic lower back pain and in the Gluts both sides, so off for a CT scanning of the spine this week: It's been going on to long and getting worse: I kept blaming the Preds :

?Well that's me smile I hope you are all feeling better with your PMR and GCA journey : Cheers Dea 

1 like, 20 replies

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  • jean39702
    jean39702 dea13

    Posted

    You've certainly been through a heck of a lot in the last little while. What a great attitude you have to all the trauma.  I wish you a speedy recovery on all fronts.

    Wanted to mention that I too have lower back and bilateral glute issues.  As much as I would like to blame it on PMR I know it's likely myofascial pain syndrome as described by Eileen.  It only flares if I don't do regular exercises to prevent it from happening.  If I do exercises prescibed by my Bowen therapist and a few others I've researched on the internet on a reoutine basis I can keep things under control.

    I had a CT scan of the lower back just after being diagnosed with PMR and it showed "normal age degeneration".  An Xray taken following a debilitating back injury just 5 months ago showed degenerative discs in the lower back.  So, for me, appropriate exercise seems to be the key.

    • dea13
      dea13 jean39702

      Posted

      Thanks for the information: I was thinking of doing Bowen.

      My lower back and bilateral glute issues are there now all the time...  so it may be  myofascial pain syndrome, nothing more serious : need to excercise more, catch22 :  Cheers

       

  • pam1793
    pam1793 dea13

    Posted

    Hi Dea.  I just wanted to chime in a wish you well.  Have you received the results of your CT scan? I hope it's negative and that the pain can be attributed to pmr or GCA. 

    So many of us are dealing with multiple health issues; it sounds as if you still have a smile on your face and a cheery attitude.  Keep up the good vibes! 

    I've learned to take life a day at a time...some days I take life by the hour instead.  The pain levels can change so quickly.

    Keep us us posted about your CT scan.  The blood thinners script is only temporary, so hopefully that will help resolve the clot quickly and prevent any others from forming. 

    As as I was recently told...chin up because we will win this battle!

    • dea13
      dea13 pam1793

      Posted

      Hi Pam, thank you for your kind thoughts. Yes it's a battle some days, been 8 months since dx with PMR and so much seems to have popped up health wise. 

      Scan tomorrow, so I will post when I know results, also I am hoping it's just PMR or Preds :

      We have to keep a sense of humor to some degree smile  to keep those good vibes.

      BIG GIRL PANTS smile  

    • amkoffee
      amkoffee dea13

      Posted

      It sounds like the CT will be the thing for you to have. And I just want to offer one thing. If it ends up that you have to have an MRI please email me and I will tell you how I got through an MRI as an extremely claustrophobic person myself. I have figured out a system to get through them without totally freaking out. In fact recently I surprised myself when I had a TIA they wanted to do an MRI of my head and I had to have my head encased in a box to do the MRI. Let me tell you I think that would freak out anyone. I even managed to get through that without freaking out. I was so proud of myself. LOL

      So good luck on the CT. It should not cause you any problems. I had problems when they did my head. But they're only doing your lower back so you should be okay. But if you have any problem whatsoever ask for a cloth to put over your face so that you don't see what's going on. Everybody's going to tell you that the CT is open and they're right it's just like a big donut and you go through the hole. But it bothered me and I figured out how to manage it.

      Good luck tomorrow. I'm sure everything will turn out good.

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