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Waiting And Miserable

Posted , 13 users are following.

pmarie
pmarie

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.

0 likes, 55 replies

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  • Kdemers
    Kdemers pmarie

    Posted

    I think the pain can be anywhere--especially a place that was painful  before.  I did not lose weight at all.

    Beg the Doctor to put you on Prednisone for a short time.  YOu will know within 4 to 6 hours after you take it..that's what my Dr. said and he was so correct.

     

    • pmarie
      pmarie Kdemers

      Posted

      Thanks.  I will beg if she doesn't put me on them... unless she is sure it's something else.  I just have a gut feeling after reading for weeks that it is PMR so definitely hoping for Predisone!

  • EileenH
    EileenH pmarie

    Posted

    Foot and ankle pain can be typical of PMR - even if she hasn't asked her patients before. I'm waiting to hear the results of a study from a group in the UK: the lead research says her impression over years of work with PMR patients is that yes, feet and hands can well be part of PMR so she has looked but hasn't evaluated the numbers yet!. But as Dan says, it is well accepted that RS3PE is often found alongiside PMR.

    Weight gain with longer term unmanaged PMR is also likely - you are moving far less, eating just as much if not more because you are depressed and seeking comfort - you gain weight. I did over a period of 5 years - general weight gain despite working hard with diet and had been losing weight before. When I went on pred it then rearragned itself to the usual places rearranged  (midriff, face and back of neck) but I didn't gain more (I could move again and stopped eating as much).

    Your ASS is an ass! There is one cause of PMR-like symptoms which is entirely hormone-related - and if he's a gynae he should know that. PMR is the name given the constellation of symptoms - with a range of underlying causes. Which brings me to another point: if motrin helps it DOES reduce the likelihood of PMR. Motrin might help ankylosing spondylitis or another inflammatory arthritis however - and the PMR-like symptoms of that can appear without the x-ray/MRI evidence being present yet. Your lower back pain could be muscular - and it could be related to sacroiliitis which is often a starting point with ankylosing spondylitis. Do you have back pain in the early part of the night? That is also typical. 

    And REALLY: 5lbs can cause that sort of problem? There are people whose weight fluctuates day to day but that much! Where do they come up with these ideas...

    • pmarie
      pmarie EileenH

      Posted

      Eileen, thanks.  That's a lot of good information.

      About the weight gain, that's what I told my son -- that I used to be so active I could eat anything and not gain weight.  Now I'm sitting or laying down all the time and everything I eat puts weight on me.  I think being  post-hysterectomy also has a tendency to gain weight.  Since September I have gained about 25 lbs.  

      I am adding the ankylosing spondylitis etc. to my list for my appointment on Thursday.  The lower back pain is pretty much all the time.  I'm not 100% sure about the Motrin 800 -- I was alternating per the dentist's orders between that and Vicodin so I just assumed it was the Motrin that helped bc it's anti-inflammatory.  For all I know it may have just been that my tooth felt so much better I felt relieved. rolleyes  

      I am actually hoping that it is PMR because it sounds like relief would be in sight!

      As far as the two doctors go, it makes me mad every time I think about it.  I mean how narrow-minded.  If I could research and come across PMR then they certainly could too.  They should've already known about it and considered it!  The rheumatologist mentioned it before I did so at least there's that.  The other two... yes, ass 1 and ass 2.  Ugh.

      Thanks again.  I'll be back on Thursday.

  • andre68439
    andre68439 pmarie

    Posted

    Yes pmarie. My PMR relapse was diagnosed when it went to my wrists and caused pitting adema in my ankles. A few months before that my right calf got painful and swollen, and was hard as a rock. So much so that the doc sent me for a test to make sure it was not DVT. My left calf was only slightly swollen.
    • pmarie
      pmarie andre68439

      Posted

      Thanks.  I also have some wrist pain but not as bad as other areas.  I'm glad you didn't have a DVT.  This is no fun either though.  Hope you feel better.  I hope EVERYone feels better!

  • kate50809
    kate50809 pmarie

    Posted

    Hi pmarie, no wonder you are miserable.  I am 10 years older than you but even taking that into account I am not sure I would be able to do as much as you are doing. Of course you haven't wasted 9 months of your life trying to feel better - you have spent 9 months of your life being ill, and trying to carry on as if you are not!!

    I hope you get a diagnosis on Thursday and are put on an effective course of treatment.

    I was diagnosed a few weeks ago and my medication is not quite right yet, but I understand that this is quite normal.  I have less pain but am still very tired and inclined to be a bit weepy - which is not my character at all.  I usually keep my feelings inside!!.

    I have neither gained nor lost weight. I haven't had any pains in my feet , although others have, but my hands were bad before I got any prednisolone and I had to soak them in hot water when I got up in the morning to get them moving again.  Now I am taking prednisolone the pain is almost gone bu the skin on the fronts of my hands is a very vivid red and the skin on the palms thin and sore. PMR seems to affect us all in similar ways as well as different. 

    Try to be kind to yourself , you have a lot to deal with.

    Best wishes

    Kate

    • pmarie
      pmarie kate50809

      Posted

      Thanks Kate.  I hope they get your meds settled and you feel better.

      I ended up calling in sick yesterday and today; I just could not get moving.  Yesterday I soaked in the tub for about an hour and a half.  Felt like it helped a little while I was in there, but climbing out pretty much ruined it. rolleyes  

      I am really hoping and praying that Thursday's appointment will start to solve the problem.  

      When I try to explain this to people they just don't get it so I am very glad I found this forum.

      Thanks to everyone again and I'll post Thursday after I see what the doctor says/does.

      I

       

  • pmarie
    pmarie

    Posted

    I had my appt with the rheumatologist and she definitely thinks it's PMR.  She put me on prednisone -- prescribed 5mg tablets that I'm supposed to take 3 of each morning.  Blood tests for inflammation were in normal range but she said that doesn't mean I don't have it.  She also said it could be fibromyalgia and I guess we'll see.  There is one blood test result that hasn't come back yet, which makes no sense to me since it's been two weeks since they did the blood work.

    The fact that these are 5mg tablets makes me think she is going to reduce me by 5mg when I have to taper down.  Does this seem like too much?  I go back in 2 weeks.

    Because I've been so miserable, she gave me a note for work for this entire week.  When I got home I realized she wrote "arthritis" on it.  I can't tell the people I work for I was out an entire week for arthritis!?!  So I guess I'm going to attempt to go in tomorrow... I just truly doubt I'm going to make it.

    At this point I guess it's still wait and see but at least I have the steroids to try.  

    I'll keep you posted after I start them.

    • ptolemy
      ptolemy pmarie

      Posted

      Hi pmarie, good luck with the pred. It is a good starting point. You should really stay on that for around four weeks or so and ensure you are comfortable. The rule of thumb is not to reduce more than 10% at a time, so 5mg would really be too high, although a friend of mine managed it. I have been waiting for the results of a couple of blood tests and checked today and discovered they had not asked for them when I had the others done. Apparently my GP had messed up the computer system. 
    • Danrower
      Danrower pmarie

      Posted

      If you took 15 mg when you posted, and if you have PMR, You will be feeling the miracle just about now. I hope so.

      You can split the 5 mg in half or quarters to taper, until you get the script for 1 mg.

      HOPE the best! 

    • EileenH
      EileenH pmarie

      Posted

      Originally when I was put on pred it was 2 weeks each of 15/10/5mg - I had no problem at all with each of those drops until I dropped from 5mg to zero - and within 6 hours of missing that last tablet I was in a worse state than I had been before. I never managed to get under about 10mg again for 4 years - and I believe that it was due to the flare that happened then. As the others have said - you probably need more than 2 weeks at 15mg, and you would be better with much smaller steps down.

      If you stay off work you will find you improve much more quickly - but even on pred you may find work too much for some time.

      Don't underestimate the diagnosis of arthritis, even if it isn't what she said. Rheumatoid and other forms of inflammatory arthritis do actually make PMR look quite a pleasant alternative! Doesn't say much for her knowledge of PMR though - it is a VASCULITIS, not an arthritis!

    • pmarie
      pmarie Danrower

      Posted

      Hi Dan.  I took it this morning, about 2.5 hrs ago so yes definitely hoping!!  Thanks.

       

    • pmarie
      pmarie EileenH

      Posted

      Hi EileenH.  If she tries to reduce at 2 weeks I'll try to talk her into a month... from everything I've read, a month is definitely better.

      Ended up staying home today.  They won't be happy at work, but what can I do.

      Believe me, I have a friend with RA and my mother had terrible OA.  It's just that when the HR people at work see "arthritis", they're going to think I'm out a whole week with a sore elbow or something.  rolleyes

      I'm seriously thinking about calling the dr's office and asking for a corrected note.  The last thing I want to deal with right now is trouble with work.  When I had my surgery they made me come back earlier than the doctor wanted me to.  My bosses are understanding but the HR group is just "different."

      Thanks for info.

    • pmarie
      pmarie ptolemy

      Posted

      Hi ptolemy.  Well that's just annoying that they didn't ask for the tests.  

      I'm going to try to stay on for a month -- will question it if she tries to reduce it after 2 weeks.  Thanks!

    • ptolemy
      ptolemy pmarie

      Posted

      It means I have bruises on both arms!
    • ptolemy
      ptolemy EileenH

      Posted

      I have a theory that if you manage pred reductions properly right from the start the whole thing goes much more smoothly. I had a rheumie who insisted I dropped 5mg in the first three weeks then 5mg the next week. I was in enormous pain which he totally ignored, saying you must expect some flares. I am sure if I had taken it easier at the beginning things would have been a lot easier.
    • pmarie
      pmarie ptolemy

      Posted

      That's what I'm afraid of.  I really do not want to do that.  I'm so glad I have the benefit of everyone's experiences... I would never know any of this, and the best way to taper etc.  I'm so sorry everyone's having to go through all this.

    • Anhaga
      Anhaga pmarie

      Posted

      Ask for 1 mg tablets.  I had 5 mg originally, but my doctor, and every day I thank the gods that be she came into my life when she did (three years ago after 14 months undiagnosed), had me reducing by 1 mg per week, so I also had a prescription for 1 mg tablets.  Because it was only 1 mg at a time, although rather fast I later realized, it was easy to know when I'd galloped past my best dose, 10 mg, and able to go back there for about three weeks, then started the dead slow nearly stop taper (short version for a few months).  Only one minor flare at a very low dose, caused by my doctor's optimism and my stupidity, but have been below 5 mg for nearly all of the past two years.  So in most respects I'm a poster child for the success of dead slow taper.  I did show the taper to my doctor and she was agreeable, but I'd have used it anyway. 

      https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439 ;

    • pmarie
      pmarie Anhaga

      Posted

      The dead slow taper sounds like the way to go!  Thanks Anhaga!
    • EileenH
      EileenH pmarie

      Posted

      HR should refer you to the Occupational Health service if your company has one - they are medical experts so have a very different view on the matter and they mediate with your bosses.
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