I have been on pred for over a year started on 20 mg. reduced down to 5 then alt of family problems it's flared up again. Got down to 2.5 mg and feeling great then the cold weather and getting my business prepped meaning a lot of outside inside cleaning in the cold weather plus getting over a cold and broken nights from a new puppy! But what triggered it yesterday was a very bitter jealous grumpy 80 old member of the family turning up and being negative to me straight away, got me down and last night I was in agony, could barely move. Stress is definitely a trigger. I am not seeng her anymore she is not good for me so today I am upping my dose to 5 mg and will see what happens. It's so annoying and my husband has been a rock! This all originally started when I went no contact with my mother! The crap I had to put up with the smear campaign all took its toll so I think / know STRESS is a trigger. CHILL :-)
Yes Jane stress is definitely a trigger for me too and now you recognise it you are doing the right thing by eliminating the problem .
Best wishes Molly
Hello Jane, I totally agree with you over the 'Stress' issue!! My PMR was triggered by a major family crisis in 2013/14! Also when I have stressful times my condition worsens! At the moment DWP have stopped my sick pay because I'm not ill enough in their eyes to claim it, I've only had it for 5 months because my employers sick pay has come to an end, so now I can hardly work and very stiff as a result of 'stress' again!., thinking of you too
Andrea xx
Thanks Molly, I am such a fit and healthy person but it seems every time something negative or toxic happens I ache, time to eliminate certainn people out of my life now, don't owe them anything or need their sad input. :-)
Oh sorry to hear that but I think when the weather warms up and we can all get our bones saturated in sunshine it might help. I hate feeling like this, I must admit alcohol does numb the feeling! Trying to be a good girlie though. Let's hope we all have a better 2016 I am only 51! Upped the pred. Today from 2.5 to 7.5 now to wait and see :-)
If your ESA has stopped you should go to Citizens Advice for help if you are too ill to work. I know links don't work on here so the website address is citizensadvice dot org dot UK. I volunteer at Cit A and we are there to help people in your situation.
Stress is one of the major negative contributor to our health ( with or without PMR). I know pred changes how we react to external events and makes are more emotional... but at the end we cannot control other people, but what we can is control how we react (or ignore) them. This is what I try to do. Little trick... Ask yourself if what is happening will be important to you in, say 5 years. If the answer is no, then it should not be imprtant today either.
Very well said :-) Thank you
I am on a very low pension and can only work very ocassionally due to my PMR/Arthritis. My husband is very seriously disabled with Primary Progressive Multiple Schlerosis..which as the name implies only gets worse!
Last year all my extra benefits suddenly stopped and I went to CAB. eventually they were re-adjusted and put back again...then they stopped again. This happened three times leaving me completely broke for 2 months each time. We had 3 means tests involving strangers coming to our home going through everything we had.
In the end apparently my husband had forgotten about a really tiny endowment policy that had matured ten years back and the small payment each year had been assigned to my daughters account to help her pay her mortgage. It was so small that my husband had completely forgotten it. I was then ordered to pay £11. a week for many years and made a debtor to the DWP even though they saw we had never ever recieved that annuity. (it was a very old thing my husband took out with my daughter before our houe and business was repossesed. At that time they made it a paid up policy so very little in it) I have one of my own but does not mature until I am 75. However they are very unlikely to allow me to keep any of that! I protested that they nade me the sole debtor when it is nothing to do with me but they said it was because of some of the DWP benefit being paid into my account. My husband is not very compus mentus re bank accounts and only his attendance allowance is paid into his account.
At the end of the month I always have to borrow money to make ends meet...the DWP could see that but these people are like robots...they pretend to be kind but are actually quite viscious. After the first means test when you feel you can trust them when they say they are helping the following test become really frightening when you know they ignore the obvious and look for things they can twist. I have three cases of records and papers that go back 20 years and cannot get rid of them for fear they may turn up again. No one should go through this and certainly not three times a year. Now that is stress !
That is an awful situation to be in and trying to cope with your own illness and your husband as well is more than enough, without having the financial worry. Have you tried your local social service? You are entitled to a carer's assessment and I wonder if the MS society may be able to help. You may, of course, have tried them already. I hope someone at CAB can sort it out for you.
Yes I have tried practically everything but the main help comes from my husbands therapy assesment nurse who comes every six months. We have had a stair lift installed because of her and are hoping for a wet room shower to come soon as my husband can no longer bathe normally...it takes time though..nearly a year after funding agreement! I am finding it more and more difficult to manage my husband and although we have a lightweight wheelchair I am getting less able to manage it in and out of the car and pushing it up slopes. Luckily most times someone will come and help but it's rather embarrasing.
You have the right attitude you just need to adopt a new motto .. you can borrow mine .. "I'm not going to let someone so petty, stress me out, upset me or kill me" I've learned to feel pity for someone that unhappy .. but I still avoid them cuz they arn't worth my time or thoughts ..
Never, never feel embarrassed! I, very occasionally, resort to a wheelchair and whether I am with my daughter or my husband there is always someone to help. I am never embarrassed, I am grateful! Really, people WANT to help in general and a big smile and hearty "Thanks" always meets with a smile and a greeting.
I swear stress was a major trigger in bring on pmr however any stress aches my muscles. It could be a comment or just driving in crazy Toronto heavy traffic, so I avoid at all costs. As for disabily income I have been fighting with my work one and am in appeals. I wanted to retire and was close but nit yet ready so it is a bit of a burden and instead of helping they make it worse.
I have enough problems explaining the fatigue, brain fog and the list goes on to my sps. and my stubbornness to do things so I'm not a burden but I crash and he can't understand when I may have done it earlier in the day.
We need at all cost be stress free, at least for me. Good luck to all of us with insurance companies and unsupportive family, hang in there.
Thank you Jane for being willing to post this!! I had asked others before what might have caused flare ups. So far, no flares (knock on wood).
PMR has really, really helped me to change my life. I've always been more sensitive than others, I thought it was good because I was more compassionate and aware. But, then learned the hard way that all my fears, my trying to solve problems that seem so heart renching, letting people push me around, trying to control them, I figure if one is friendly and happy to someone they will or should be the same way back, seems it never or rarely happens. I just can't be responsible for their unhappy ways.
Fortunely my Bowen gal is very intuitive and has opened my eyes to how I could be causing more pain for myself. I can finally meditate and deal better with physical pains and emotional. I'm finding what's MORE important in life are truly the simple things, because with PMR, doing some things has been very, very difficult and I felt like a failure. I was learning to be an artist, but can not and FINALLY figured out its because healing is what is in my heart. Healing my body. Releasing the tension. It's taken me a long time to learn how and I still struggle sometimes, but as long as I return to my new thinking, "chose joy", "all things will pass", "nothing is permanent", open my heart, and yes... I must avoid some people because I'm not yet strong enough to be stress free around them, but in small doses I'm learning "it's NOT worth being upset about ... ". I'm trying to learn about the good energy, healing energy. If you've ever had Bowen technique and tuned in to your body you will have felt that total relaxed, joyous energy feeling.
So, hate to say it, ha, but PMR is helping to change my life for better. THOUGH I DO want to gain my muscles back and HOPE my stomach heals after or before I'm done with Prednisone!
Hi Jane , with you on this one STRESS defo makes my PMR worse ,I am going through hell with my wonderful dad at the moment ,neglect medically fron his nursing home ,resulted in amputation so I am going through lots and lots of stress helping the hospital with my dad find a quality nurse home ......I fell I am back to square one,lots of pain ,sleepless nights ,tummy upsets ,so like you Jane I am trying to chill xx
Oh gosh Karen, that is aweful. My original PMR came on due to my father too, though he is the one making bad decisions. I'm so sorry your father is not getting good care. TRY, TRY to take care of the situation, but do not let it eat you. Try extra hard to know you can help without stressing you self. Ha, easier said I know. But in between do things that are beautiful, or find something to laugh at, now days when I do something stupid or something not working right, I giggle. I never want to have those sleepless nights or worry and trying to solve things beyond my control and wishing bad people would go away. It just eats us alive.
Bless you and take care.
Links do work - if you ask the moderator or they are within patient.info.
That's why I quote a link to another post so often:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
which is a list of pre-approved links. If you go to it you can contact the moderator to add your link for CAB to the lest so that you know where it is.
After my husband had cancer we visited a colleague in Rochester, NY, who gave me a book - darned if I could remember the title or author now but it was Peace, Love and Healing by Bernie Siegel MD (isn't google a wonderful thing!).
I can't remember it all but in it he spoke about how people could be poisonous to the stage of causing illness in someone else, I was a bit sceptical and my husband refused to read it at all, but one day I realised that my husband started to recover from the cancer the day his mother died. She was totally self-centred, thinking only how other people's problems would impinge on her, and her other son detested her to his core - as I was to find a few years later. David, as the younger son and only 8 at the time, had obviously missed something in the relationship when his beloved father had also died of cancer that his brother was all too aware of. In retrospect I think she had been the root cause of both husbands' deaths and was heading that way with her son. Her other son didn't escape - because the bitterness he felt, that David didn't, seemed to continue to eat away at him. She dragged me down too but not so badly - and I said no to her, the first person to do so since her first husband I suspect.
Bad people can be so bad for us - and it is often close family who are the most poisonous.
I agree with Constance. When I was able I would always offer to help push a wheelchair as would my OH when he was able. Nobody knows when they may find themselves in the same position. I realise that funding takes forever and the need is nearly always immediate. I hope they are able to start the wet room very soon.