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Waiting And Miserable

Hi Everyone.  I am waiting for my follow-up appointment with a rheumatologist on Thursday.  She thinks I have PMR but wanted to rule out a couple of other things.  They did bloodwork and I went and had x-rays.

My story is that last September I had a total abdominal hysterectomy.  Weeks later my hips and legs hurt so bad... I told the ob/gyn and his response was "Well it's nothing we did."  So at first I thought all of the aching was due to being taken off estrogen (Prempro) but fast forward to 9 months later and here I am still hurting, my hips, thighs, ankles and feet and also shoulders to a lesser extent, unless I try to move them in certain directions. @@

I work full time which entails riding a bus and train, and sitting all day getting stiffer and stiffer.  When I get up in the morning I have to go down the stairs sideways and flat footed.  My weekends are spent trying to recuperate from the work week.  Meanwhile my house is a mess and I'm struggling to get things done.

I am 61 and before this I was literally running up and down stairs taking care of my Mom.  Now I couldn't run if I had to.  

The rheumatologist said that the foot and ankle pain isn't very typical of PMR.  Also, instead of losing weight, I have gained.  Has anyone else had the foot and ankle pain?  Or gained weight instead of lost?  Also it feels like this awful aching is traveling to my calves and other areas.  

I woke up this morning feeling really down.  It's beautiful outside and I feel like I can't move enough to do anything.  I feel like I've wasted 9 months of my life trying to feel better.

Thanks for listening.  I guess on Thursday I'll find out if she's making this diagnosis or not.

55 Replies

  • pmarie

    Absolutely yes to the foot and ankle pain for PMR or RS3PE. Do you have any swelling?

    • Danrower

      My calves swell.  By the time I get home from work, they look so much bigger than in the mornings.  As far as other swelling, I have a hard time telling what's swelling and what's weight gain or water retention.  The rheumatologist thinks my toes were a little swollen.

      While I'm at it, I forgot to mention my lower back which is awful.  It pretty much feels like there's pain everywhere.

      I also forgot to mention my regular doctor's theory.  This was probably 2-3 months after it started -- "Well you've put on some weight, it's probably affecting your legs."  At that time it was about 5 lbs.  rolleyes

      Thanks for your reply.  The ankles and feet are as bad as the hips, thighs and lower back.

    • pmarie

      There will be lots of help here. I had hands and feet involvement, and most rheumys will try to exclude PMR. I am convinced I had/have RS3PE, a PMR similar, but a bit different. RS3PE means Remitting Seronegative   Symmetrical Synovitis with Pitting Edema. Google RS3PE. 

      Good news is treatment and outcome is are similar, low dose prednisone, with good and quick response to minimize some of the symptoms . 

      Good luck

  • pmarie

    Before I was diagnosed with PMR I could hardly get dressed. I was able to work from home but was desperately tired and had pain picking up the mouse. I lost quite a lot of weight as I felt so rough. Have you had blood tests? Can you ask your doctor what they think it is if it is not PMR? You could ask to try steroids on a week’s trial and see if they work. Do you take other painkillers? Do they work? 

    • ptolemy

      Thanks ptolemy.  I had blood tests last week and also xrays of my hips and feet.  I go back to the rheumatologist on Thursday to see what she thinks.  She did talk about putting me on steroids but said she didn't want to do that before she got the blood and xray results back, which makes sense to me.

      I had some dental problems (still do and have to have them fixed) and had a horrible painful tooth about a month ago.  The dentist gave me Motrin 800 and it not only helped the tooth pain, it helped all the other pain.  Not completely, but improvement.

  • pmarie

    You had pretty serious surgery.  Have they checked to make sure you are not suffering some sort of residual low grade infection?  I must say the ob/gyns's cavalier response to your obvious pain and discomfort is shocking.

    • Anhaga

      I've had so much bloodwork it's ridiculous... I don't know if bloodwork shows that....?  I will ask when I go on Thursday.  The rheumatologist asked if I had any infection after the surgery (I was hoping she could tell ME)... I told her as far as I know, I haven't had one, no fevers, etc.

    • pmarie

      I suppose it depends what they're looking for but I imagine they do a generalized test which shows if anything needs follow up, so it sounds like things are good that way.  I do hope you can get some answers soon, though. 

      It's quite common for PMR to start after some sort of trauma, like accident or surgery, or in some cases mental or psychological stress, so it's possible this is what has happened to you.  Good that the rheumatologist is ruling out other things first.

  • pmarie

    I'm so sorry you're going through all of this especially after such a serious surgery! I do think though that your surgeon should have investigated your pain, especially as it came on just after your hysterectomy, sounds like a bit of an ass. Your bloods may be up but also may not be, if you have something going on with the aftermath if the surgery it could also raise your blood work. The only real way if telling if you have PMR is to take a course of steroids and if it is PMR there is that miracle recovery after a few hours, usually! Hopefully you'll get some relief very soon! Btw your doctor sounds like mine, what a lame thing to say, your legs are affected because you've put on 5 lbs??? PLEASE!!!!

    • Mrs Hobbles

      Thanks Mrs. Hobbles.  He IS an ass.  The gyn who did the surgery was awesome, but he retired and the ASS took over.  Don't like him and not going back.  Same with my primary care/GP.  I'm going to switch to another doctor in that group.  She is an ass too. Lol but if I don't laugh I'll cry.

      I really hope the rheumatologist gives me steroids.  She did mention it.  I guess I'll know on Thursday.  I'll come back and post after that.  


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