Im new here... Trying to find my way

i am 55. I was diagnosed with PMR after a very rapid onset of excruciating pain in my HANDS. They put me on prednisone and It improved, but not like I've read about others experiences... The inflammation moved all around, like, choosing a joint or joints de jour, if you will. When I finally got into see the rheum. He said I didn't metabolize prednisone properly and changed me to presnilosone, or Medrol at 20 mg. my inflammatory markers responded immediately. I asked about how it presented and he said he had seen that before, that it was not as odd as it seemed to me (hand pain first, the traveling if lammation and pain, etc.) Onset was the first week of Jan. After that, I had a lot of issues that were more the side effects from the steroids than the PMR itself... Primarily sleep disturbance etc. Now I'm at 10 mgs., have been for about a month now... Sleeping much better... Have had almost no pain since starting he Medrol. Tonite sharp pain started in 3 toes of my left foot. Position of foot does not affect it but pain is intense... And then just stops. I've never had a "flare" other than the onset, so I'm unsure of what to be looking for. I felt crappy today, very tired and emotional... This entire experience has been so difficult. I am a registered nurse and held a corporate level position that involved a great deal,of travel and high activity all the time. I feel like I'm being kept in a glass room and I can't see the walls until I hit one and realized I overdid. And I'm not even back to work yet. The fatigue is so intense...and I don't know ANYONE else who has this condition....how do I "learn" limits? What does a flare look like? Is the heightened emotions part of this mess??

17 Replies

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  • Hi, and welcome. I too am 55. Have been diagnosed 1 1/2 years ago after complaining of pain in my thumbs. Others will chime in with more accurate and specific answers--but yes, I too had the traveling inflammation which was weird-one day hips, then next bottom, then knees then ankles, etc. Sleep disturbances were my key problem for awhile; later (and again recently) the debilitating fatigue was my biggest issue, and yes heightened emotions also come into play. I didn't start to get better until I cut way back on my activities and expectations-wish I had done it sooner. Again, welcome.

  • Talk to me more about how you cope. What activities did you cut back on? How did you determine what you could and could not do? I often feel like the barriers around me are invisible and I keep,walking right into them, and then it's too late!!!

  • Hi. And, Sorry for the delayed reply. PMR came on slowly for me. Probably had it a year before diagnosis. Then started prednisone. I had a part time accounting job I did from home-about 15 hours a week. With the brutal fatigue, brain fog, stiffness, sleep issues and also managing all my new meds for asthma and allergies, I was barely functioning. Many days was like I had the flu, where you are ok laying on the couch and not moving but can't get up and do anything. Nothing was getting done around the house, just trying to make my husband dinner was exhausting. The part time job duties were taking every last ounce of energy I had. I realized I had to stop. So I asked for a year off from the job. That was in September. I realized I also had to say no to all requests from others for my time or energy. I basically eliminated almost everything I could from my daily activities.

    Now I try to think of 1-2 things that are a priority for the next day. These are usually very basic items like go to a doctors appointment, call the repairman, clean off the kitchen counter of papers, do laundry, make a hair appointment, send a birthday card,etc. I focus on getting just those few small things done and then don't worry if I don't have energy to do anything else. If after a rest I'm still feeling good. I pick one more small thing to do, then REST for 15 minutes or more (usually with my feet up, sometimes laying down). If I still feel good, I repeat the process by doing one more thing then resting.

    I give myself permission to quit in the middle of any task whenever the first sign of tiredness strikes-which for me is a slight shaky feeling.

    Keep in mind that just getting up and showering and getting dressed, takes an enormous amount of our very limited energy supply. I always rest for a bit to recharge my batteries before attempting anything.

    I do try to be there for my 89 year old mom when she needs me, and I make time for get togethers with friends which help me enjoy life and feel more normal. Otherwise, I just try to stay as healthy as possible and take care of keeping my house reasonably clean and getting my husband a cooked dinner.

    A lot of it is accepting that you can't do what you use to do, that even small tasks take a great deal of energy, that you have to be the tortoise not the hare (if you remember that story), set your expectations for each day low, eliminate stress wherever possible, listen to your body for clues, and plan in lots of rest into each day.

    Wishing you the best of luck. It is easier to deal with once you accept that you will have significant limitations until the PMR decides it's ready to leave, which is likely a couple of years.

  • I am not an expert but 10mg seems a low dose.

  • I am not an expert but 10mg seems a low dose.

  • Hi

    Sorry to hear you are struggling so - but I think with this condition it is inevitable and acceptance is difficult. I was diagnosed PMR/gca June last year - like you I work for a large corporate and other than a week off here and there struggled on. So a year on yet another flare (3rd) so back up to 30mgs although reducing now. I have just taken 3 months off work and doubt I will return to this job - it's stressful and I do not wish to have another relapse if I return feeling better.

    Life has changed enormously and I have really had to learn to listen to my body, rest when needed, say no when needed ~ rather than fight on which is what I was doing. The fatigue for me, is relentless - I cannot comfortably get below - 16mgs of pred - and suffer with moon face and weight gain - puffy and blurry eyes which also destroyed my confidence when working - I was also diagnosed at 56 but had had the condition several years before this

    Be kind to your self - best wishes

  • How do you know you had it years before this? My job also is very stressful and is why my doc would not release me to return. Now there is no job to go back to.

  • I had elevated inflammation levels 5 years prior (aged 50 following double bereavement), and initially they thought it was rheumatoid arthritis, then just sent me on my way with Naproxen for pain relief. several more visits over the next couple of years, put down to age, then menopause so I just got on with it with increasing pain and sleeping problems and fatigue. Then face and jaw pain which was treated as temporomandibula joint disorder. (given plastic gurard to wear an night etc).

    Eventually when I could hardly get out of bed or lift my arms or walk any distance, more bloods and then referral to a Rheumy who diagnosed me with PMR/TA, 48 hours of preds and pain 80% better - Rheumy said I would have three 'crap' years, (which I didn't understand at the time), he was correct - just starting my second and still struggle and feel ill and exhausted most of the time, although pain better but still intermittent.

    Although in theory they are keeping my role open, they have advertised for a temporary fixed term replacement, I do not want to go back. If I am better, I would be reluctant to put myself in that position again and cause a relapse, I so want to get well and get my life back which is far more important than work. I have struggled for a year and made little progress so trying to look after myself now.

    I will need to work, financially, but will hopefully get something less stressful. However, I look too ill for anyone to want to employ me at the moment and could not cope either.

    Sorry for long answer, we each have our own stories - most equally frustrating with this condition, which most of us have not even heard of until we are diagnosed with it.

    Its a long journey and this forum provide support and advice - which I use - sometime too much - people must get fed up with me!!

    Best wishes

  • You are trying your Best. Doing good😊

  • I always find your posts interesting. 💕🌷🌞

  • Hi

    I was diagnosed in Aug 2015 but sure I had it long before as al I ever got from GP was you have CFS .

    Work full time I had 4 months off work and was so fatigued everything was a effort .I made myself go out once a day for a walk even if it was only into town for coffee .Always had to get Bus back home and lost a lot of my confidence as I did not feel safe on my own .

    I did return to work and job is stressful but most of the time I am sitting down advising people in their own homes.

    I plan my day and find some days worse than others , I find I am worse on days off due to doing other things such as housework .

    We are all different you know your body best so listen to it .

    In the ideal world not working would be the best option for managing this illness, but unfortunately due to the rise in State Retirement age and the benefits system some of us would have no income .

    Take Care

    it does get better but takes a long time

  • I'm not working now. I get a max of 4 good hours a day and that is not always the same. I have trouble seeing what will be a problem for me until I've hit the wall, so to speak. I am on disability pay but it runs out soon. I am blessed that I am married and we can get by without me working although it will be a dramatic change for us. There is just no way I could go back to a full work day - or even half days as how I feel still seems so unpredictable. The fatigue is relentless... And many days I simply feel unwell.

  • I have to say that your description of your symptoms doesn't really fulfil the criteria for a diagnosis of PMR and what you say sounds much more like palindromic rheumatism, which can be a prelude to RA, and flares can typically lasts as little as hours, moving from joint to joint around the body. PMR is much more typically muscles and shoulder/hip stiffness, which is one of the criteria. I'm not disputing the not metabolising prednisone well in terms of the poorer response - but it may be that that was also a sign it wasn't only (or even) PMR.

    The heightened emotions - that can be due to pred (very likely) but can also be part of PMR. I found I developed a very short fuse which is still there at time - I never did suffer fools gladly, I don't even suffer them ungladly now!

    As for the fatigue and learning limits - this may be of some help:

    healthunlocked.com/pmrgcauk...

    PMR is a learning experience - if you learn nothing else you will learn patience!

    Here are some useful links if you are interested:

    patient.info/forums/discuss...

    They are on another forum in the UK - where there are a lot of US contributors too. Am I right in thinking you are in the US?

  • I am in the U.S. But find very little in support groups here. Most info I've found has been in Europe. I asked my rheumy why and he said that European studies are much easier to combine and search out bc there are shared databases there while US is still often hunt and pick, so to say. I have a lot of faith in this doc, he has an excellent reputation and listens to me. I did ask if my symptoms didn't seem unusual for PMR and he said that my labs and response to Medrol really did indicate PMR... I certainly would prefer a condition that is self limiting and is likely to eventually run its course! ( just in case my preference counts). 🙋 I feel better just talking to others that understand... I am a RN and I didn't even know what PMR was before I got it!

  • Ah well - that's not entirely the reason! There are support groups in the UK because of 5 women who met about 10 or 11 years ago on the patient.info forum, decided there wasn't anything out there to help them other than the patient.info forum and set out to form a charity in England. The Scottish one was already there and there was a single support group in the east of England. That has all changed since. The doctors and research groups didn't really have a lot to do with it although they do act as patrons and medical advisors.

    If you don't do the hard work, then you can't have support groups - although there was a rather iffy one in the USA about 7 years ago and there had been a Canadian one but they both disappeared about then.

  • Like PMRpro, I also questioned whether or not you have PMR, mainly because your description so closely matches the autoimmune condition my sister suffers from, particularly the traveling inflammation, overwhelming fatigue and somewhat younger onset. Hers is called "reactive arthritis" (formerly "Reiter's syndrome"). You might want to research it a bit and if it seems like a closer fit, then ask your doctor about it.

    Best wishes for you in dealing with this.

  • Hi zacsmimi

    Sorry to hear you are having a tough time, but you're not on your own. You asked about coping. This may or may not be helpful - just a few thoughts. Although it says GCA I'd say it's similar for PMR:

    healthunlocked.com/pmrgcauk...

    Good luck and please let us know how you get on

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