Stress and possible flare

I wonder what people's thoughts are on my latest experience. I was started on 20 mg of prednisolone in June, successfully reduced one mg a month until I was down to 10 mg and have been doing DSNS to my current 6 mg. Yesterday we had a close family bereavement and although it was expected I had a number of phone calls to make to upset relatives. I was sad for the news but he was very elderly and suffering so not duly upset myself. However within hours I was stiff and in the first pain I have felt since starting prednisolone. I have been one of the very lucky ones who has had complete relief from steroids. By the afternoon my pain was spreading from my legs and buttocks to my arms so I took 1 mg late afternoon. This seemed to resolve the pain in about an hour. I was still a little stiff. This morning I have no pain and only minor stiffness. Do you think I may have had warnings of a flare and have avoided it? Was it stress related or coincidence? Looking forward to advice from this sanity saving forum.

46 Replies

  • My thought would be that it was stress related. I recently had an issue pop up that I was very concerned about, but didn't realize how much stress it was causing me. I totally tanked for a full 24 hours. When I connected the stressor to my condition, and realized I had to just let the situation play out and not worry about it, I immediately went back to doing ok.

    Many say they were under stress when PMR started, and personally, I find the more I can reduce stress, the more I am able to reduce my prednisone. I also allow myself on very rare occasions to increase my Prednisone for a day or two if I know I am going to face a stressful day. Last year I took a couple mg more prednisone when hosting Christmas Dinner. This year we took a cruise over the holidays, and I was on 5 mg, but took 2 mg more on each of the days when I had active shore excursions planned. One day was paddle boarding and snorkeling, the other was zip lining and water slides at an adventure park.

  • Thank you meg1711b for your very speedy reply and similar experience. I am so grateful for your post as I don't want to be too precious about my symptoms and over react. Stress does seem to be my major trigger.

  • Hi Meg1711b

    I was interested to read your reply to Brixhamhampster about upping your dose at certain times. I did the same when my Son got married last year, otherwise I'd never have got through the day!

    Yesterday, we were looking at Tours for our next Cruise, lots of steps seemed to be a feature of many of the tours (along with Fish Markets! Why?) There is a sea day between each Port so time to recover but l plan for a small increase on each Port day as we may never pass that way again! We're going to the Far East on QM2 as part of our 40th Wedding Anniversary Celebrations.

    Although I won't be Zip Lining or Paddle Boarding l'll be happy to get up n down all the steps to see the Temples & Buddha's. I'm taking my fold up stick too for all those steps!

    Best Wishes & Happy Cruising 🚢

    Mrs Nails 💅🏼

  • Brixhamhampster. I am convinced that stress was a major influence on my PMR and have taken note to be more aware. I too am one of the lucky ones painwise. I am sorry for the sadness you must have.

  • Thank you Isabella2015 that is so kind of you to respond. What lovely people on this forum. Happy New Year to you. X

  • Definitely stress is a major factor in causing flares I have both pmr and ra and went straight into flare after the Christmas period when stressed and also

    I'm convinced eating too many rich sweet things didn't help.

  • Hi Brixhamhampster

    I'm sorry for your loss, and think it's very likely that the stress of this has impacted on your PMR

    When I try to explain to other people about PMR/Steroids & the impact of outside factors, especially unexpected ones is

    " I have a certain amount of Prednisolone to last me all day, to deal with the PMR & day to day living but when it's gone, it's gone l have no reserves"

    In very simplistic terms l think that's what's happened to you.

    PMRpro will explain it far better than me, maybe you might have to increase for a day or so but take care of you first as you won't be able to help others if you become unwell.

    Best Wishes 💐

  • MrsNails thank you so much for your reply and your second paragraph covered it beautifully. I was wondering if I was approaching the level where I might get some symptoms as I have reduced fairly quickly compared with other peoples posts and as you say this stress just used up my supply for the day. Wonderful when you can try and make a bit of sense of this illness, it is so capricious. Thank you for your insight.

  • Why do I need to! Your analogy is brilliant! It's like the spoon theory.

  • The stress almost certainly played a role - I used to find even a phone call that wasn't as upsetting as yours must have been subconsciously used to leave me feeling bleugh. You'd used up your spoons - if you have the option of taking a couple more out of the drawer - why not? Particularly as you are now at a dose where you body is a bit slow at topping up the pred with cortisol when required - there's that aspect too.

  • PMRpro you are absolutely right about phone calls, too many in a day and I am really shaky. I have also been thinking about staying on this dose for a couple of months as I think my adrenal glands may be working but only weakly. I was desperately tired between 7.5 and 7 but between 7/6 I have felt amazing. More sleep hardly any shaking and able to stand for longer periods. Until yesterday's episode it was the best I had been. Obviously near my lower limit for the moment though. Thank you so much for your endless patience with all our problems.

  • Hello I've been reducing by Prednisone for the last 6 months I started on 65 milligram I am now down to 12 milligram what has happened since the reducing is I've had for five days of dysentery and it's made it very difficult for me. Do I continue on and stay steady on the 12 mg that I mine or do I up the prednisone having to be in the restroom two three four times a day has made me physically uncomfortable any thoughts any insights please help.

  • If you have PMR symptoms you could try taking a bit more - some doctors tell patients to up their dose when ill to help cope with the stress, especially if it is an infection.

    Are you sure it is dysentery? Are you on antibiotics? While normally it might not be treated you may need some because of the pred suppressing your immune system.

  • , I'm on day 6 I have dysentery every single day for the last 6 days. I went to my Physicians nurse practitioner and because I don't have stomach aches or temperatures she told me to come back after seven days that's a lot of help huh so I'm on shore really what this is. No I'm not on any antibiotic I thought maybe because I reduced to 12 mg from 13 mg it might be the prednisone but now I'm not so sure.

  • Dysentery is not the same as "just" diarrhoea - it is accompanied by blood and mucus in the stool and is highly infectious.

    Are you on any other medications?

  • Hi Brixhamhampster,

    My first thought on reading your post, was "Wow! haven't you done well to get to 6mg from 20mg in about six months". It's taken me two years to get down to six mg, so I can't help wondering if you may have tapered down a bit too quickly, and you are below the level of pred you need to keep the pain under control?

    Having said that, then I most certainly endorse the comments of others in relation to the influence of stress with PMR.i

    I do hope you get matters under control again, and I wish you well.

  • Charlie1boy thank you for your kind comments and I do agree I have reduced fairly fast. I have been guided by my symptoms only as I have seen my doctor only once when he diagnosed me with PMR. Since then I have just had repeat prescriptions, no blood tests checks or advice so you can see how invaluable this forum is. I am certainly going to reduce even more slowly now and do feel better taking the extra 1mg yesterday. Life a bit calmer today so onwards and upwards (or should that be downwards?)

  • Thanks for your reply. Yes, I certainly agree about being guided by your symptoms - I do exactly the same, so perhaps it was Just that I was a bit jealous of you doing so well!!

    Anyway,good luck, and I'm sure you will get it sorted out.

  • I think it is a good idea to have the occassional blood test. I just book them every so often and the nurse and I just decided which ones I should have. No one complained and if there was a problem with the test, which has happened, I was found to have macrocytosis possibly caused by the steroids, one of the GPs phoned me.

  • Hello piglette, that is a very good point about booking my own tests. Because I never went to the doctors for years before getting PMR I don't know my way around the system. Also as I wasn't having any problems (apart from the pesky side effects of course) I took the opportunity to taper at my own pace rather than my doctor's much faster plan. Thank you so much for highlighting that aspect. I have managed without a doctor but couldn't manage without this forum.

  • I was in a similar position. I had never even bought a medication over the counter or had an antibiotic. PMR was a complete shock to my system. I had to ask my GP what to do with the prescription! I saw my GP in 2014 and not again until 2016. Although I do talk to her occassionally over the phone. I did become a nutrition nerd and also started checking my blood tests in a nerdish way too by getting printouts from the surgery. I get quite excited checking them, sad isn't it?

  • Gosh piglette we do have a lot in common! I check my blood pressure every morning, am really strict with my portions and love cooking really healthy meals. It has been so easy not to put on weight as I grow all my own vegetables and after taking PMRpro's advice cut out nearly all carbohydrates. It does seem to have paid off. I also have coloured charts printed for my reductions! Nerd doesn't cover it!

  • My husband drew up graphs to be able to identify what dose he needed to get his INR (clotting index) where it should be when it went off! Even worked out the equation...

  • Yes I have it all on spreadsheets with a fancy colour system based on how I feel that day. I even have blood pressure parties. Friends sit round and we take our blood pressure. My friends actually ask to take their pressure if I forget to offer it. I think once we even did seven goes each! Frightening really. We do have a bottle or two of wine.

  • Hi Brixhamhampster - I do hope that supplementing your dose has calmed down the pain. Stress does seem to make this illness worse. You have helped me too by posting this. I was on 15 mg when first diagnosed a few months ago, then reduced to 12.5 mg then been on 10 mg for a couple of weeks which was working ok. Then I went back to work on Wed this week and bingo - horrible burning and aching pain in shoulders, arms, hips and buttocks returned with a vengeance! Was despairing and not sure what to do until I read your post and the responses. Have just taken 2.5 mg on top of my usual 10 to see if it makes a difference. Am seeing Dr Hughes on Monday and might ask him to give me an injection to top up the 10 until my body gets used to the commute and work again. I don't want to go back up to 12.5 mg daily if I can help it as I was enjoying not having the sweats and shaking on 10 that I did on 12.5. Anyway, enough me me me - I do hope you are feeling better now and can keep your stress levels low enough to keep the pain under control. X

  • Susyte I am so glad that my post has helped you too. Your symptoms sound very familiar. I am in awe of people who can work with PMR I just don't know how it is possible. Thank you for your best wishes today I am feeling so much better.

  • Thank you again, Bh, I wish I didn't have to work, believe me. I have a meeting with HR and Occupational Health on Tuesday to see what they can suggest to help as it is a struggle. I am going to ask if I can at least leave early at 4.30 pm so I am not travelling in rush hour.

    So glad you are feeling better today!

    Big hugs xx

  • If you are intending going back to work I think it would be a really good idea to go back to 12.5 and reduce in smaller steps - If 10mg barely covers the inflammation without work stress it is very unlikely it will do so with it! If you let a flare get away it won't be 12.5mg you go back to but 15mg - or even more.

    PMR is covered by disability legislation so your employer should make reasonable adjustments. But I couldn't have done a "proper" job - I couldn't have got to work, never mind work and then get home again! I staggered out of bed to the computer - no getting dressed properly and struggling on and off trains and busses. If I couldn't park close by - I couldn't go, with or without pred!

  • Thanks, PMRpro - really appreciate the advice. Will see how I feel tomorrow morning and take 12.5 again if needs be. Seeing Dr Hughes on Monday and will also discuss with him. Job-wise, we need my salary so will have to continue. HR are sympathetic but my boss not so much. As his PA he needs me to be on form and relies heavily on me - he can't seem to come to terms with my illness. Also, his brother has MND so PMR pales by comparison in his eyes, which I get as my Mother had it. I have booked 2 weeks off in 10 days' time while he is away so that will do me good. Can't wait!

  • Ah yes, I remember now. However, that is comparing apples and spuds - his brother may have a horrendous disease but he isn't having to work for a fairly insensitive and mannerless slave-driver is he?

  • Very true, PMRpro! He will never see it that way 'though. I was hoping to leave but my husband's job is now in jeopardy (since an unexpected bad review just before Christmas) so am stuck with it for the moment. But I will listen to my body and take time off sick if I have to. Thanks for the support.

  • Oh dear. Fingers crossed - perhaps time to migrate?

  • Hi Brixhamhampster / all here

    I've been desperately searching for the answer to this too and, after extensive research, came up with the following medical explanation:

    According to the late Professor Sir Stanley Unwin, deep stressiness is caused by the brain's jangle lobes being discombobulated by sad feelies and much frazzlement, resulting in a depletion of the essential hormode - Corblimeylone - which usually mangles the jangle lobes into submission. With Polymyaldrama Rheuminaceous, the body's JMS axis (Jangle-Mangle-Submitlode) is upset in a deeply woeful way, and extra Cortlode is often the answer until the system restores its equilibrifulness. This is when brightful, smiley feelies return and you can enjoy a nice cup of tea again.

    Makes sense to me - deep joy ;-)

    MB :-)

  • Does to me as well - oh dear! Don't say we're still on the same wavelength. 〰

  • Looks like it DL!

  • DorsetLady Fraid so!

  • markbenjamin57. That is hilarious! Made me giggle. Who writes this stuff?

  • Resident joker -MB. With a bit of plagerism at times.

  • Don't use those big words on me! ;-)

  • Thanks Brixhamhampster! I have to admit to being guilty of penning a few mischievous posts here. I think it's a kind of antidote to the more serious (but important) stuff that we all have to deal with, and if it makes people giggle, all the better.

    Sir Stanley Unwin (rip) was an eccentric 'Professor' and TV chat show personality in the 1960's-70's who was famous for talking gobbledegook in a 'serious' way and mangling his words with amazing precision. After reading some of the very complex medical-speak around Stress and PMR, I couldn't help seeing the funny side of it all.

    Glad it made you smile, stay positive on the journey.

    MB :-)

  • Love it! That really made me have brightful, smiley feelies - thank you! 😀

  • Thanks SusyTe, you're welcome and all part of the service! :-)

  • My first giggle of the new year! Thanks mark...., 🎉

  • I remember him,he talked a lot of sense! #hilarious

  • Look MB - it'll all be ok if you keep taking the melancholic acid......!

  • Thanks Rokerman, I'll be on the caselode with the melons and cholacic, er, stuff! :-)

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