How do I control the stress/anxiety caused by PMR

Posted , 14 users are following.

it seems the more I learn about PMR the more anxious I become.

i am sure most of you have felt this way especially at the onset.

How do you deal with this  on top of all the other discomfort?

about two weeks ago I had a couple of great days like nothing was ever wrong with me.  I felt so good I made reservations for a cruise and then after I decreased my pred from 11 to 10 it went down hill.

Although I am back up to 20 and the pain has mostly subsided the fatigue has not.  Is this how it will always be or can I hope for more good days then bad?

also, the mild headache is stressing me out.  Am I suddenly going to go blind while I'm waiting to see a neurologist to rule out anything else.  

I used to to hate the spots on my arms but they have become the least of my problems.  

Off ft to my GP today.  Sooner or later when they see me coming they are going to lock the doors😃. I am their only patient with PMR.  I also have a good rheumy now who fully understands the condition.  

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24 Replies

  • Posted

    Hi Audrey, sorry to hear you are not feeling the best.  I found what worked for me was acceptance.  I took control of my body and my mind and did my own reduction contrary to what one dr. suggested, but that's me.  I think everything depends on reduction and by how much.  

    If I have something (stressful) coming up and I was suppose to reduce, I don't, I stay on the dose for the time that I think I need.

    You can try cutting down by a half mg.  Also you need to pace yourself and rest, rest and more rest.  All the best.  Pat

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  • Posted

    Discuss this with your doctor - pred can cause anxiety in some people but it can be managed.

    For most of us it is the knowledge that saves us the anxiety. Arm yourself with knowledge and then you know what is going on.

    The fatigue is something you will have to manage yourself - the pred manages the aches, pains and stiffness but you must learn to pace yourself and rest to manage the fatigue. It may mean planning a nap time during the day so that the later part of the day is also OK. We often suggest googling the spoons theory by Christina Miseriando - very relevant. Or I suggest reading a blog called Despite Lupus by Sara Gorman - not the same disease but a similar problem and she writes very well about it.

    No it won't always be like this unless you are VERY unlucky - I've had PMR for 10 years, 5 years on pred and am down to 5mg. I'm off to China tomorrow. There are things I don't do but mostly I can do anything provided I'm not silly. PMR often burns out after a few years and you are back pretty much to normal.

    If you have a flare there isn't really any need to go right back to 20mg, for most people adding 5mg to the dose you had the flare at for a few weeks is enough and you can also usually go back to just above the flare dose quite quickly as a result. Once you know more about the disease you will manage it better.

    if you didn't have PMR and had a headache you wouldn't panic while waiting to see a neurologist - in terms of anything else that isn't any different. A mild headache isn't what most people say, they describe it as "the worst headache of my life" or "a headache like no other". You are most likely to have other symptoms and feel quite ill. If you have any visual symptoms then go straight to your rheumatologist or the ER but otherwise - maybe it is just the anxiety that is causing the headache? 

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    • Posted

      This is not a question about our PMR but about the site

      Is anyone else experiencing difficulties reading posts. The names at the top of the posts on the site seem to be merged with the heading colours and I can't read them. I have only experienced this problem this week. Has this happened to anyone else or is it just a problem with my phone and iPad.

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  • Posted

    there is nothing wrong with asking for an antidepressant. this disease (and GCA which I have) is just awful and it helps that I'm taking low doses of fluoxetine. Chronic diseases like this can lead to mild depression and more. And the mood swings caused by prednisone don't help matters much. Do discuss it with your GP. Good luck.
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  • Posted

    I've had PMR for at least 4 yrs. I've treated it for 2 yrs. it took a while to determine what was wrong. I dropped my Pred last year to 0, it came back in a week. I was put back on 15 and now I am stabilizing at 5mg. Every time I dropped from ex: 7 to 6mg I did notice it took a couple days to adjust. I'd get hip pain but eventually I adjusted. I am very active, I cycled 41 miles on Sat and another 20 miles last night. I see a lot of people on here complain of a lot of issues, but I don't seem to have a lot. I had months of not being able to move off the couch, get out of my car easily etc.

    PMR affects people over the age of 50. Are all your complaints from PMR and Pred or could some be just your age and lack of exercise? I understand I will get blasted for this but seriously, I have other problems, female issues and Plantar Faschitis that I know aren't PMR related. When I was off the Pred last summer my foot was worse basically because the Pred was relieving my pain. I use to be a runner. 😙. I read lots of complaints, but for me the Pred is a lifesaver, with it I'm my old self. Again, realize we are more active than our parents and grandparents, we're going to feel it!

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  • Posted

    Went by ambulance to hospital this morning.

    am being admitted.  Suddenly can't walk, extremely weal and lighthearted 

    nauseated. Still slight headache.  

    Dont know the problem but it all took place about 45 min after taking prednisone.

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    • Posted

      Thinking of you Audrey, and hopefully while you are in hospital they can give you a reason for the slight headache, so they can either treat it or put your mind at rest. (I am in the same boat - headache wise)). The more I read, the more confident I feel  about Pred and Poly tho. Knowledge is power. I'm not confident that my lovely Dr, or Pharmacist have much knowledge of my problems, so I have worked out a strategy to get myself referred to a Specialist. If you take charge it cuts the anxiety. We are all "old" and wise - so we just have to get canny about how we make them listen, or get the tests we need to put our mind at rest.


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  • Posted

    Good luck, Audrey.  I hope your condition resolves quickly.

    When you are well and able to respond, I was wondering if this was your usual dose of pred, and if it was from the same batch that you have been using for a while(?).

    A bad response to medication might be a faulty product.

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  • Posted

    not good.

    The problem with feeling anxious is its hard to tell if what we are anxious about is real or not. Difficult to know what will go away and what needs a trip to the doctor. And the pred robbed me of some objectivity so it became harder.

    I found simply that time, getting used to how my body reacts differently with PMR/Pred, and knowledge about the condition and medication. I've found managing the pred side effects as hard as the PMR.

    As time went by I became more confident about what was happening, After 18 months it all now feels reasonably predictable. I also found a sense that the PMR is retreating, I could reduce the pred, and feel my energy levels increasing,

    Its taken a bit of effort to stay positive. That seems to be important. Laugh at it, think positive thoughts. Don't stop doing things, just pace oneself. Manage oneself around it, don't let it take over.

    Being mindful that things can go wrong of course. I hope you are not long in hospital.

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  • Posted

    Thank you so much for your support.

    i will be leaving the hospital today.

    because of a bunch of misinformation being passed around to doctors by doctors things got very complicated until I could get it straightened out with my GP.  Since my rheumy isn't on the staff at thins place he was getting third hand information.  Besides most of the hospital saff haven't a clue what 

    PMR  is.  It's frustrating!

    i did not let them increase my press until I saw the vascular surgeon who is very familiar with GCA.  He advised against the biopsy at this time feeling it was not necessary after his examination and consultation.  But he and the rheumy will stay on top of it.  You only get one good chance for that biopsy and if it is negative there is no chance of having a good one it done again if necessary.   

    Why hey the weakness in my legs yesterday, no one knows but I was able to walk last night.   I think I let my stress get the best of me as before this I was extremely healthy and active working daily with contractors overseeing their work and restoring houses.  That in itself is a stress and the PMR on top of it causes me to have Panic Attacks.

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    • Posted

      Audrey, so relieved to hear you have been checked over and nothing too untoward found, with the weakness in your legs also easing.  Amazing what stress and anxiety can do!  You may benefit from a gentle yoga or Tai Chi class.  I can't speak highly enough of the benefits that I experienced from Tai Chi and also Nordic walking during my PMR/GCA/steroid days.  It sounds as though you are going to be well monitored by both the vascular surgeon and the rheumy so that must be very reassuring.  I hope you have a better day today with even better ones just around the corner!.  
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    • Posted

      Hi Audrey, Now give yourself a pat on the back for going through all that - and finally getting checked out and finding you're OK. I know I've become overwhelmed by anxiety on occasions, and it's horrible. MrsOs suggestion about TaiChi is a great one. Even before that, look up emergency breathing techniques - which work straight away . . .I found they helped and gave a great sense of control. Happily now I've settled down. Kind regards and thoughts. J
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