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  3. Polymyalgia Rheumatica and GCA

wondering

Posted , 12 users are following.

kup47
kup47

This website was suggessed to me for information to find coping skills after I prgoressed rapidly to GCA. I wanted to know about how people coped and learn from their personal experience. I admit I am more frustated now, simply due to what I am perceiving as others seem to related to finding something to accept blame over, something they might have done that has lead up to the horrible medical condition. This is something that even my own GP has used in discounting my explaining what I am feeling, rather than helping me. However, having said that, I do appreciate input, answers and shared experiences. In an attempt to find something that might personally help me with coping. But I am not a believer in somthing i personally have done wrong. Yes, at my age of 67, I do believe I have some well earned aches just from living. But nothing to the level that is so physically debiliatating as GCA. I am now in a three day flaire-up. I am feeling very defeated and tired from no sleep due to the horrific pain. My goodness, the word comfort is so darn elusive, and something I crave...thank you for allowing my vent.

Sheila

1 like, 68 replies

68 Replies

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  • kup47
    kup47

    Posted

    Lost ground to the pain again today...going to emergency...I really really dislike this
    • Anhaga
      Anhaga kup47

      Posted

      sad

      Hope you got some good, relevant treatment at emergency.  

    • kup47
      kup47

      Posted

      Just to let ev1 know, I was released from hospital yesterday, horribly fatigue and weak. So much done to me hard to explain. Feeling better, hope my steriods are now at a level I will not experience those horrible flairs.
    • EileenH
      EileenH kup47

      Posted

      Do tell us what happened when you feel able to - I wondered where you had been.
    • Anhaga
      Anhaga kup47

      Posted

      Glad to hear from you.  I, too, had been wondering about you.  ❤
  • kup47
    kup47

    Posted

    Updating: Well, this is certianly been a whirlwind of a medical journey. I was admitted to the hospital. So much blood work it made me feel like a pin cushion. I had a MRI with contrast of my head, I had a CT scan of my entire adnominal area, and now this coming Friday I am scheduled for a PET scan. They have finally increased my pred to 40 mgs a day until under control. Since they have done that my flairs are less, but I am still taking strong pain med occasionally. I was sent to Onocology because something was abnormal within my bones and liver  which was found on the CT scan. My Onocolgy Dr wants a tissue sample and the PET scan will give them a area to target. I will see him again on the same day as my PET scan. He is highly suspicious on me having bone cancer, since breast cancer typically comes back in bones.  My right arm remains useless, and now my left leg is also becoming unfuctional. Hard to get up and down. I am using a TENS electronic stimulator on my back on bad flair days which seems to help, along with many ice packs. My flair days seem to last 2-3 days at a time, in which I do not get any sleep, so I am quite exhausted all the time. Out of desperation due to the lackof sleep I finally took two Benadrylto help me go to sleep.  I am a mixture of feeling, naturally scared to death and frustrated. Wish me luck if you will I think I am going to need it. Thank you for your support. 
    • EileenH
      EileenH kup47

      Posted

      I will wish you "get better soon".

      That all sounds rather horrible and very scary. I will say though that PMR and all that goes with it is a diagnosis of exclusion - and cancers are amongst the exclusion diagnoses I'm afraid. At least they are on a track of some sort now - and I do hope they can make you feel better, above all, in less pain.

      Hugs

    • kup47
      kup47 EileenH

      Posted

      It was confirmed Friday I have stage 4 bone cancer, no cure, treatment is and will be all about pain mangement. My question: how does one go from being told you are cancer free to stage 4 bone cancer? What part of my healthcare failed me? 

      So thank you to all the support and the questions I had. This is a awesome site with so much information and wonderful people. Keep on keeping on, be joyful and kind to one another.

    • EileenH
      EileenH kup47

      Posted

      I am so sorry - there is nothing I can say that means anything better than that is there? My SIL was diagnosed last year with pancreatic cancer - exactly the same situation as you are now in, no cure, and I have nothing I can say there either. 

      Is it a case of your healthcare failing you? I suppose it is. With your history of breast cancer, when you had the symptoms of PMR/GCA perhaps they should have been a lot more proactive much sooner though it probably would not have altered the outcome. How long is it since you were cleared of the breast cancer originally? But that is all pointless really.

      I can only wish you good palliative care from a compassionate team who make sure your pain is well controlled and that you have good support to live well for as long as you can. 

      Hugs xxxx

    • Anhaga
      Anhaga kup47

      Posted

      Eileen says it all, that there is nothing we can say.  You are embarking on the journey which someday we all face and I wish you love, peace and joy.  ❤
    • linda17563
      linda17563 kup47

      Posted

      What a horrible shock for you!

      ​I wish you calmness and peace in your horrible situation........but keep strong with the times ahead,  keep us posted if you can manage it, we are all thinking of you..... Blessings....

    • EileenH
      EileenH kup47

      Posted

      Yes - I should have said and Linda has reminded me. Just because your illness isn't PMR or GCA doesn't mean you can't come here and have a scream or whatever you need. Our ears and arms are open anytime.

      xxxxxxxxxxxx

  • masonc
    masonc kup47

    Posted

    GCA pain is not the same as PMR and is stopped by correct prednisione schedule.

    I have only experienced very slight ephemeral pains on my temple and they vanish when rubbed slightly. Other pains are reported but prednisone should stop them.

    My own "exciting experience" would be instructive. Google can find it.

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