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AVN + Polymyalgia Rheumatica

Posted , 4 users are following.

gail2910-US-MI
gail2910-US-MI

Does anyone who has had a hip replaced also have PMR? (Polymyalgia Rheumatica--autoimmune muscle disorder that causes pain and stiffness) Somedays I  am hopeful but also scared to death going into this necessary surgery that I will still have pain on the other side. Today -- two weeks pre op-- is very bad. Can't walk without crying. I am feeling very low.

0 likes, 8 replies

8 Replies

  • renee01952
    renee01952 gail2910-US-MI

    Posted

    hi Gail,

    I am so sorry that you're are in so many pain. ..

    are you diagnosed with PMR?

    If so, what were you told by your doctor. ...

    thinking of you and sending light and healing rays,

    warm hug,

    renee ❤

    • gail2910-US-MI
      gail2910-US-MI renee01952

      Posted

      yes, dx'ed with PMR 2 years ago and was doing well on fairly low dose of Prednisone til May when the bottom fell out. Or rather, my right femoral head collapsed. We don't know if it is caused by Pred. or not. Thank you for your healing wishes and good thots. It helps more than you'd think!
  • lyn1951
    lyn1951 gail2910-US-MI

    Posted

    Gail - I have psoratic arthritis, also auto immune based. Makes my joints very stiff and swollen, I cannot grip things, tightly, cannot make a fist, and I feared it was going to cause me real problems, with crutches, instead I was given elbow crutches which worked for me. Instead I improved almost immediatley after surgery, within a few days alot of the swelling had settled and I had a period of real relief. As you are only too aware with auto immune you do have flares. Chin up dear lady, and yes it is perfectly natural that you would be very low. Its all just sooo scarey. having been there twice over, it does get better. I won't lie the first few days are a nightmare, the hospital and doctors will help you with pain relief, then the getting home, after that you improve just a tiny bit each day, and all of us hippies are here to help you, a few months down the road you will be glad you had it done.
    • gail2910-US-MI
      gail2910-US-MI lyn1951

      Posted

      thank you for this note, Lyn. i really appreciate it. I am surrounded by people who love and care for me but I still feel rather isolated. Pain sort of gets and holds your attention. I feel like I'm looking at the world thru a very narrow lense. Your story reminds me that things do change; I could tolerate the pain better if it was moving toward healing instead of a sign of how screwed up things are! I am trying to cultivate patience. Thank you for sharing your story. It holds hope.
  • sue59299
    sue59299 gail2910-US-MI

    Posted

    Dear Gail,

       I really feel for you.  I have Lupus, also auto-immune and the type which affects my joints and all connective tissue.  I had so much trouble and pain before my THR 6 months ago, but I sailed through it Thank God and am now pain free.  As a nurse, I did everything my own way!  No Teds because of my hot legs, minimum physio and most importantly, I slept on my good side from day one.  This was advised by a clued up Physio, bless him!

       Everyone has bad days, I was so worried pre-op, but it was a doddle.  I had an epidural and was sedated and did,nt know a thing.  I also asked for a catheter, which they fitted when I was asleep and I was soooooo glad I did,nt have to be padded out in bed. It makes life so much easier not to worry about peeing!   I was up and walking the same night, went home in 48 hours and was walking crutch free in a few days.  I,m not showing off, just pointing out that sometimes all that worry is for nothing!  The lupus is much better, could be a coincidence, i,m not sure!

    i,m sending you my love and a big hug xxxxxxxxxxxxx

    • gail2910-US-MI
      gail2910-US-MI sue59299

      Posted

      This is so much what I want to believe but the pain makes me think differently. And yet, feelings and thoughts are not facts. I cling to that. Thanks for sharing your experience. 

      It would not occur to me (non nurse) to ask for catheter. What was your thinking there?

  • lyn1951
    lyn1951 gail2910-US-MI

    Posted

    I think they put a cathether in with any surgery, as they don't want you weeing all over everything, that you don't have one when you wake up, just means they have taken it out before you are fully awake. I know for some very scarey, but really doesn't hurt if you get someone who is gentle with you, I was faully awake when they put mine in, and have had a number of times for various procedures, lastest one was for urine sample after three samples contanimated.
  • lyn1951
    lyn1951 gail2910-US-MI

    Posted

    The one catherther you don't want done when you are fully awake is a nasal gastic tubing. UGHHHH and soooo painful, imagine pulling your eyes out through the back of your head, In my case obstructed liver being treated as gastic bug for a week by local GP. Lucky I survived, so sick I couldn't even be operated on for a week, it was just a matter of getting me to survive. If anybody who was thinking of taking an overdose of drugs knew what was going to happen they would not do it because of that tube. I still have nightmares about it.
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