Living with PMR and the side effects of the only known treatment for almost a year now. Many of you have watched me go from panic/denial/anger/depression/fear to where I am finally in acceptance, I think.... or at least a lot closer to it.
I broke my foot a month ago. So, symptoms now are all over the place and its really impossible to tell the PMR from aches and pains of crutches and scooters and a boot the size of a small boulder attached to the end of my leg.... (which came first? the ache or the break?)
And I have come to realize (again) this week, that it really doesn't matter. No matter what happens to my body, the sun will still rise every morning. With or without me. I cannot change what is happening to me, I do not have control. It is what it is. Resistance takes so much effort, and yields nothing.
Today, I accept. Its so much easier.
Written by
Zacsmimi
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When I was about twenty my future father-in-law gave me a copy of this famous prayer (obviously I needed the lesson it contained, but don't think I've learned it yet, after nearly fifty years) :
The Serenity Prayer is the common name for a prayer authored by the American theologian Reinhold Niebuhr (1892–1971). The best-known form is:
God, grant me the serenity to accept the things I cannot change,
Good Morning Zacsmimi..your post makes such interesting reading and what you say is so true as 13years on with PMR I am still learning to accept it..I have had an awful year through flare-ups and Negativity of some of my medical team ,but I am very lucky to be with a Brilliant Rheumatologist who is very patient with me .I stayed away from my Medical Practice this year because I usually came out of there in tears after being made to feel belittled because I just can't get down to 12mg on steroids and stay there for a while until trying to get down to 10mg. I try every way but which way on the reduction plan and know what I am doing but unfortunately other health issues occur..Luckily my Daughter-in-law stepped in and suggested we went to my GP Practice together to try and see a different GP and we were lucky to find a lovely Lady GP who understood what PMR is and straight away ordered Blood tests which I haven't had this year ..also I am waiting on a Dexa Scan..but unfortunately I was also suffering a horrible viral infection that was causing me about 3 times my usual pain so last Friday I ended up back at the surgery to see another New GP and he was sympathetic re PMR and has put me up to 17mg Steroids for 1 week , from 13.05 originally but I put myself up to 15.05 before I saw him.. As you say Zacsmimi the panic and everyday worry doesn't help us and in the last few weeks the depression hit in hard and I have spent many hours crying with the pain .I managed to get to my lovely Bowen Therapist for a light massage to my upper arms,shoulders and kneck last week because I couldn't even lift a cup to my mouth and on Friday this week I am having another treatment to help relax me..This is the 1st morning that I feel better and don't want other sufferer's to stay away from their medical teams ,we have to just keep fighting this condition and we are all different. I have to have some more Blood tests done next week.Unfortunately my lovely lady GP has gone on Maternity Leave but will be coming back to the practice and I feel happier knowing that PMR has been more recognised at my GPs surgery .. Good Luck re the Boot on your foot and I hope that comes off soon . trish29
I had that problem to some extent at the GP practice I went to - the girl who knew about PMR was on maty leave at least twice in the 5 years I was trailing there asking what was wrong so I never saw her and when she was there she was part-time and you waited weeks for an appointment (which probably tells you she was good).
Sorry you've had another rough time but so glad you have finally found a couple of decent GPs - and good for your DIL going with you. It does make a difference - even though it shouldn't.
Hello PMRpro ..hope you are getting on ok? Yes I did thank the nice GP for her support on our first meeting and we discussed the long time that I have had with PMR and she asked me why I hadn't been before this year .I explained it's like Banging my head against a brick wall and only getting told off by my main 2 GPs for not getting down on my steroids..once I get to 14.05 or below is when more trouble begins re flare-ups or inflamed legs..i then had reassurance from her and the GP I saw last week that it's Quality of life which my Daughter-in-law agreed with as well .So we will see where I go from here..i feel better on the 17 mg steroid ..my other dilemma is that my Rheumatologist doesn't usually advise the flu jab but my surgery advised me to have it and as I'm still fighting this virus I'm not sure what to do,so I've got another week to think about that one as I have to make another appointment. Lots of Best wishes to you ..i missed the last PMR of Surrey meeting but hoping to make next week's ..( wish you were there ) Best wishes Trish xx
Here they won't give you a flu jab if you have any sign of an infection - the reason my husband missed his a few years ago. The result was he forgot to go back and caught flu, followed by developing pneumonia!
Oh what a lovely couple of GPs - had such a lively discussion with rheumies about QOL. It isn't what happens in 10 years time - it's whether I can live now. if I can't live in reasonable comfort now I don't want to be here in 10 years time...
My sentiments entirely PMRpro ..being mainly housebound isn't any fun but i have to make the most of it for my Families sake. I will give some thought to the flu jab and ask a few of my PMR friends at next weeks meeting ..Best wishes to youxx and your Hubby ..keep well . Trish
I'm not having the flu jab. I understood that we shouldn't have it with our compromised immune system. I've had flu a couple of times and been really ill.
No - with a compromised immune system we mustn't have LIVE vaccines, so that means not the nasal spray version. But the jab is killed vaccine - it lets your body have a glimpse of the design of the overcoats the flu is expected to wear this year so your immune system is at least slightly prepared to recognise them again. Even if it only protects you from a third to half of what actually turns up it is a help.
I've had real flu once - I never want it again. OH got it a few years ago - when he didn't get the flu jab as he had bronchitis at the time and forgot to go back. He had nearly 2 weeks in bed and then developed pneumonia - which took 6 months to clear fully and repeated abx and a couple of CT-scans to boot.
Absolutely. You may feel a little achy and get a small fever for a day or so after the shot, but you'll recognize that as a little thing compared to a full-blown episone of the flu.
Also ask about a pneumonia shot, which is also a killed virus vaccine.
Acceptance and "going with the flow" seems to be the subject of some of these posts today. Easy to say, hard to do. Well done Zacsmimi !!! You'll get there in the end!!
Acceptance simply means there are things we cannot change. Then our thoughts and energies can focus on what we can do. I try and stop the hamster wheel in my head that goes round and round about PMR before it even starts, once started it is hard to stop.
I would say that its most important to have the flu ja particulary with our compromised immune system.The flu jab is not a live vaccine so you cannot get flu from having it.Any symptoms that may occur after having the vaccine are due to side effects of the vaccine not the infection
Great attitude.
When my brain starts to go off onto the blues crying I shout "shut up and sit down" to those thoughts and funny thing they do. It does make me feel I am in charge of something. Sometimes I have to say "hey I said sit down". It did take awhile for it to become a habit.
Then I started using the Gratitude Attitude where I list all the things I am grateful for including hot showers and clear drinking water etc. it really has helped my emotional thinking. The impetuous of this Gratitude Attitude was this forum and all the lovely people here. It is my main addiction now to visit read and hopefully pass on some hugs!!!
My journey this month is decreasing on the slow method from 17.5 to 16. Did try for 15 but not good so went to 16 instead.
We seem to proceed through the stages of grief as we learn to accept this life changing disorder. Be confident that you will make the journey in your own time, and will survive! No doubts❣️
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