As I sit here contemplating my navel....and thinking about / reflecting on my first ever pain management appointment at local hospital last week, I am both amused ( actually chuckled aloud) but also totally bemused!!! Am I simply losing the plot or going mad?????
On arrival I had to complete the most ludicrous questionnaire ever. To the various questions I had to make a judgement on a scale of 0-10 based on how I had felt over the past 24 hours.
I found this REALLY difficult (says the woman who when asked in the maternity unit by midwife why are you crying stated, ' because I just had my first contraction! ‘ Yes the midwife was in for a really long haul!). I know my threshold is really, really low but today (last 24 hours) hasn't been too bad has it? So if I complete it based on today why am I here? Should I ignore the 24 hour reference and base my responses on my worst day to make the appointment worthwhile and address the issue. Do I scribble I DON'T KNOW ANYMORE WHAT IS A GOOD DAY FOR ME? Or shout I CAN'T REMEMBER THELAST HOUR LET ALONE THE LAST 24! Do I work out all the scores for each hour of the 24 hours then divide score by 24 to find an average, since symptoms can change minute by minute let alone hour by hour or day by day??? Someone please HELP me complete this damn thing!
Strangely the question about anxiety was soooooo much easier to grade, since the simple task of completing the questionnaire meant my anxiety levels were sky high by the time this question appeared. Interestingly the consultant was concerned about my higher anxiety levels recorded. It was the only question I found straight forward!!!
When I was younger the newspaper my mum subscribed to daily used to have a daily 'love is caption'. Love is sharing your last rolo .....Love is never having to say you are sorry....etc.
I wonder ..... could we have a ‘Pain is .... ‘ thread / collection that I might use as a common criteria / prompt, against which I can measure my pain levels next time?
Cheers!
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Marilyn1959
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Just a (not so quick, as usual for me) reply and my slightly jumbled thoughts since it's late and I'm a bit shredded after a busy week. But your Topic is close to my Heart, so here goes:
1. No, you're most probably NOT losing the Plot or going 'Mad' since you have the presence of mind to Post and share your experiences and thoughts here - and very lucidly (if that's the correct term). Well done!
Yep: for many of us, even thoughts / anxieties around any kind of 'examination / test' - medical or psychological - can induce what's known as 'The White Coat Syndrome', where the Subject's fears and / or expectations around such can 'Skew' the results either way +/-due to possible Anxiety levels - which also influence physiological and / or psychological responses during such tests.
2. As for the increasingly popular trend in the Medical (and other Professions) for Patients or Clients / Users to encourage them give some kind of arbitrarily determined 'Score / Rating' - for Pain or any other experience: the vast majority of such 'rating' mechanisms have little or no methodological / statistical robustness nor any evidence to support their published (and often overly-publicised - usually for commercial and marketing purposes) 'Results'. Ok, Rant over... or I'll be here all night on my Soap Box.
3. In my opinion, your Consultant has Absolutely the right Humanistic approach: in other words, to Listen to you and interpret what you say / how you describe things and make a reasoned judgement in context: And.. in consultation with, and agreement or by negotiation with you, personally. No artificial 'Ratings', Stats or meaningless Data - just a 'proper' chat and conclusion. And again, in Your personal context.
4. Your comment: "I DON'T KNOW ANYMORE WHAT IS A GOOD DAY FOR ME!" isn't as Daft as it sounds! How many of Us Lot (with PMR / GCA or not) have also experienced the same Dilemma at times in our Lives (or every day) ?! So, you are not alone....
Hope this helps - and try to keep smiling on the Journey
Sorry for this further reply being 5 months late (Ohhh...!). I try to keep-up with everyone's comments on the many and diverse Posts here: but sometimes they get ahead of even me. Dugghhhh...
Yep: I officially pronounce you an honorary member of the PMR/GCA CBC (Completely Bonkers Club). Wear the badge with pride
Best wishes for New Year 2019 a healthy (er) year ahead.
What was the outcome Marilyn? I would have had the same difficulty as you, with the questionnaire, I know.
Pain is a strange thing to live with all the time. I think that I have even befriended PMR pain like an old, very annoying friend. I worry that it has become a kind of crutch, or a way to avoid doing things, or be judged and found wanting. Pred no longer gives me the total relief it used to, I seem to be swopping pain and stiffness for exhaustion and general malaise. Fighting it all just makes it worse, I have become very stoically, patient.
I know you don’t want to but I would try a bit of Pred first - the devil you know etc. It must be so lowering. I had dreadful neck and back of the skull pain ( cervical Spondylosis) when I took early retirement from a job that involved a lot of computer work. The only option offered was a dangerous operation. It wore off after a couple of years to be replaced by PMR.
I have time to try increase of pred since this makes sense as I have a bit of recurring stiffness of thighs which is symptomatic of initial symptoms at the very beginning of my journey. Perhaps all I am having is a bit of a flare????? Never mind the b****y questionnaire, it is all a bit of a guessing game really. Your decision not to have op, but to work through it was obviously a good one, so I think I should take a leaf out of your book and look at other options before having the 'block'. Thanks Jane.
My first symptom of PMR was groin pain that made it difficult to walk, impossible to get in and out of a bath and hard to get out of bed without being pulled. This symptom was the first to leave with Prednisalone. I think I forget how bad it was. Ought to be more grateful really.
I forgot to mention that I removed the cause of the neck and head pain by retiring. I couldn’t even look at a PC without it starting up. I have to be careful with the iPad use too.
Brilliant poetic justice and such an apt description Angie.
On my last visit to rheumy I saw a notice pointing to Pain Management. I felt a stab of fear, does this mean that if they can't control the pain then you are taught to manage it like deep breathing when in labour? Thanks to your post Marilyn it's another thing I will not be subscribing to!
PMR tells you if you can/cannot weed the garden.
PS does anyone else find it annoying that there are no apostrophes on the tablet keyboard?
I've had my Nexus for 6 years and have just discovered there are three pages of hieroglyphics and there is the missing apostrophe and pound sign, happy now
Apostrophes are on the 123 page, bottom row on right.
Pain......I manage it with Mindfullness. Until 2 days ago when GP persuaded me to take ALL THE TIME co- codamol and Neurontin instead of just as a response to pain. I am suffering osteoarthritis on top of PMR. Right Hip op in May, but now need a second!
Never say never Chris! Can so relate to weeding garden. I love my gardening. Two years ago I was able to dig to landscape garden. Glad I did it as Like you these days it is simple tasks such as to weed or not to weed? Must take advantage of the better days eh?
I have a similar problem at the rheumy here now - they have a similar questionnaire which is aimed at inflammatory arthritis patients and is pointless for me. Especially as it relates to the last week - and I don't allow my dose to govern my ability to do (or not do) things.
I was very relieved to find that our Pain Clinic is thoroughly based on identifying the CAUSE first of all - the "deep breathing" approach is kept for a long way down the line!
Know where you’re coming from. On my visit to physio this week - follow up from knee op, the questionnaire I was given had no relevance whatsoever - it was obviously not for post-op patients.
Didn’t even ask what parts of the body hurt? What a waste of time, paper, energy!
I always annoy them by not circling anything and writing 'depends'. Then they have to talk to me which is far more time consuming that entering data. Nyahaha said the red pred head wicked witch of down under 😈
I like the pictorial representation to express feelings, but would need a selection of expressions. Even still I would have dilemma though of which 'moment in time' to reflect in smileys or frowns. (Now thinking of song Leona Lewis sings so beautifully)
It is just below some posts, headed “ How did this post make you feel” If you tap on it you get the smiley face, the neutral face and the sad face. Please tell me everyone else can see it! 😉
No! I could feel sad that I have been advised that I can’t suddenly stop Prednisalone, but it’s life saving advice. I don’t see what use the data would be. If the charity is involved it would be nice to know the thinking.
I don't really "feel" anything about a post - other than fury when it is something about a stupid comment/action from a healthcare provider. But the feeling has to be taken in context - so a silly quesion like that is rather pointless.
My whole point DL. What indeed is my five compared to yours? When I was a teenager and into art I often wondered annd debated with anyone who would listen whether what I saw as green, might be seen as purple by someone else but they too had learnt to call it green. Mind boggling!
Someone on the Lupus forum wanted to do a PhD on the use of imaging in explaining chronic illness problems to medics (or something like that). Unfortunately she didn't get funding.
I hate those numbered questions too.i never answer for 24 hours but for the week. It's not just the pain level but does it come and go so you get relief. Before pmr diagnosis I would say my pain level was 4 but it never left for a minute and was very wearing. My life was slowly being taken over. Now I am mostly stiff but stretching gives me quick relief
... 'but never left me and was very wearing'...... So is this having a constant pain level actually worth less points on the scale or more points than higher level occasional spasmodic pain? I rest my case - absolutely ludicrous!
I hate these 'on a scale of 1-10' questions they don't seem to make any sense in any context but especially that of pain. Someone's 10 could well be my fifteen and 'I can't stand this ****** pain any more'. Like you I have a 'low' pain threshold and you have my deepest sympathy. I really don't think there can be a scientifically quantifiable measure of pain. I suppose it's something we just learn to suppress as we grow up - think how children cry at the tiniest bump- and some of us are better at it than others.
I agree it is not scientifically quantifiable since it isn't humanly quantifiable so why ask us to complete a form on anything unquantifiable in the first place. I rest my case! X
Well said Marilyn. But, as (I think) PMRpro said, the medics have to start somewhere. And in a curious way, it does get the patient talking about their pain...
Each visit to the rheumatologist I get the one which you are to check off the body parts that hurt, other symptoms you've experienced and do the 1-10 pain scale. They also ask how long it lasts. I commented the last time that I didn't know how to answer because it depended on the day/time/ activities the day before etc and after three years my scale wasn't accurate any more. Was I comparing my pain to last week, last month, last year, or before PMR hit! Nurse just sympathized and said it was to give the doctor a starting place to talk with me, not to make myself crazy.
In the hunt for a diagnosis I saw a physiatrist. I did the vitals with the nurse and was sitting in a decent chair when the doctor came in. She asked where I was in pain. I remember the surprise on her face when I said at the moment nowhere. She nodded when I added, as long as I sit perfectly still and don't move.
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How many of Us Lot (with PMR / GCA or not) have also experienced the same Dilemma at times in our Lives (or every day) ?! So, you are not alone....
Not sure if this is a flare
Is it polymyalgia or the steroids that are making me feel so ill?
How much pain is reasonable?
Blood Test and Pred
Further update on flare or muscle pain
