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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

20 Replies

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  • Mrs_Hobbles
    Mrs_Hobbles dea13

    Posted

    Wow Dea, you've been on some roller coaster for the last number of months! To find a clot after all the radiation must have been shocking after all you'd been through! I just hope that you get a break now and everything goes smoothly for you on the future, including your taper. Please mind yourself!

    • dea13
      dea13 Mrs_Hobbles

      Posted

      Thank you : They think it may have been a old clot, whatever that means, so here is hoping it will disolve with the tablets : 

      I didn't see that Black Cat  lol 

    • Mrs_Hobbles
      Mrs_Hobbles dea13

      Posted

      Ha, must have crossed your path when you weren't looking!! That's kind of scary to think it's an old clothes but you didn't know about it and it stayed put!! Yes tablets will work on it now and it'll be one less thing to worry about. You're great that you're so positive and upbeat, that will get you through so much, take care xx

  • kathy67492
    kathy67492 dea13

    Posted

    So sorry to hear of all you are going through in addition to PMR!! How remarkable that you can stay positive and soldier on😊 Good reminder for me that it could always be worse. Best wishes in your recovery from the breast treatment and on your journey with PMR...this forum will be invaluable💐

  • anne57814
    anne57814 dea13

    Posted

    Congratulations Dea on getting through the radiation.  But I'm sorry about the blood clot.  I hope it will resolve.  Was thinking about you and glad you have updated us.  Hope things will get better.  

  • Jennymay
    Jennymay dea13

    Posted

    Wow!   All my good wishes for the future. Take care. Jen
  • Loulie
    Loulie dea13

    Posted

    Hi Dea, did we talk before your radiation ... I forget now. Just wanted to offer you my full support as I know exactly how you are feeling as it was a journey I had to undertake too. I was diagnosed with PMR and breast cancer at the same time in late 2013. I did radiation too, and know how exhausting that is, but it is a journey that once you are on, you have no option other than completing. I got a little 'pink' (medium rare if I was a meat eater!!) but didn't burn. I found that from that point on, I too developed just about everything that could be thrown at a person (other than a clot in my case!) and still find myself developing things where my friends do not. It is very depressing and I really know how you feel. You cannot help but think 'WT** is going on NOW?' I maintain if you stand still you can hear the sound of clunking as more bits drop off onto the floor around you!!

    Good luck with the scan on the spine and hope that is nothing too untoward. I have the same - spine, right hip, glutes - mine is spinal stenosis, and arthritis of hip and lower spine which trap a nerve, and you may well be the same. The glutes and leg pain is what really gets to me, so I understand how you feel. I see a physio who does dry needling in the glutes and leg and I do find that helps.

    If there is any help I can offer, please let me know. Very best of luck and keep smiling. You will get to the end of all this mayhem, just take it one step at a time. Sarah x

    • dea13
      dea13 Loulie

      Posted

      Hi Loulie, Yes I think we had spoken before, I hope you are feeling better.

      I have heard about dry needling, I will ask my physio, was thinking of Accupuncture or Bowen, but will get the scan results 1st.

      I do have Ostero arthritis so it could be a trapped nerve.

      Thank you for your kind offer: Cheers

  • amkoffee
    amkoffee dea13

    Posted

    Everything sounds wonderful with the breast cancer and the blood clot it's good that they found it when they did because it could have been a lot worse off. But I have one concern about the back pain situation. I don't understand why they're only doing a CT. I've dealt with back pain my whole life and they always do an MRI. Is there some reason you can't have an MRI done? If not I would insist on an MRI rather than messing with a cat-scan. It will tell you a whole lot more and I suspect what will happen is you'll have the CAT scan and they will end up wanting to do an MRI after that.

    • dea13
      dea13 amkoffee

      Posted

      Hi amkoffee,   She didn't really say why the scan, she does know I get high anxiety and Claustrophobia, can they give you something for that with an MRI?  I would find it very hard. But if I had to I would, no choice.

      I'll wait and see what the scan says : Cheers and Thanks

  • EileenH
    EileenH dea13

    Posted

    I missed the bit about the low back and glutes pain and a CT before - something called myofascial pain syndrome is commonly found alongside PMR. It is purely muscular and doesn't show up on CT or MRI.

    I imagine they are doing a CT to be sure there isn't anyhting unpleasant causing it but when they don't find anything mechanical, perhaps a discussion with a good sports physiotherapist or sports massage therapist might bear fruit. MPS causes knots of inflamed muscle fibres in shoulders, about rib level and in the low back. The low back ones can irritate the sacriliac joints and the sciatic nerve and cause the sort of pain you describe. Piriformis syndrome also goes for the gluteal muscle and is often aggravated in PMR. They are relatively easy to solve with the right treatment - but many doctors seem blissfully unaware of either of them in association with PMR.

    • EileenH
      EileenH

      Posted

      I also forgot to say that I was told by an orthopod that all my low back pain was due to degeneration of the spine and I'd have to live with it! I couldn't stand or walk for more than 10-15 mins. Just a relatively short time later the doctor at the Pain Clinic told me she could see and FEEL it was muscular - my back muscles were like floorboards - and that was what she treated it as, Very successfully. I get niggles in muscles - almost always it starts in the shoulders - and if I deal with that immediately it doesn't progress.

    • dea13
      dea13 EileenH

      Posted

      Thanks EileenH, I will mention to my physio about those two myofascial pain syndrome, Piriformis syndrome, and do some research myself. I'm so over the chroic pain I get daily. Silly thing is if I am sitting or lying down I don't get it, only when I stand or walk, then sit for 5 minutes and up again, it's crazy.

      (  knots of inflamed muscle fibres in shoulders, about rib level and in the low back. ) this sounds like me.

      Scan tomorrow so I should have info by Tuesdat when I see my Dr >

      Many thanks again, Cheers 

  • macas02
    macas02 dea13

    Posted

    Hi Dea, Just to wish you well and to keep positive which is not always easy.

    Like Eileen I also take anticoagulants for Afib and had no problems taking them along side pred.

    Hope you feel better very soon

    Maryx

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