PMRpro asked me to repost a response to another member in a new thread accessible to everyone.
This is long, but I hope it helps someone.
I used to work as a legal secretary where I became skilled at taking a jumble of materials and distilling them into a summary for Court.
I treat my doctors appointment as a Very Important Meeting that I must prepare for with the diligence as if it is the biggest meeting I will ever attend. I start a week or so before my appointment keeping a diary. I record every ache and pain, the level of distress, duration, trigger (or possible trigger), did it make me vocalize (yelp, moan, cry out) if it is new or ongoing. I am a self confessed stationery addict but this diary gets written on whatever is handy, slips of paper, napkins, grocery receipts, my appointment journal, whatever is near when I hurt.
I then draft a bullet point document. Using how I feel that day and my trusty crumpled notes, I start by listing every symptom I have, when it pops up, duration, frequency, triggers and pain levels, if it is new or has been ongoing, etc.
I must point out that it helps to be clinical at this point, pretend you are working on a project for someone else, it can be very distressing to see it all written down when it is about you, but try to carry on and be honest. I assess my points and start crossing things off, oh that painful toe? The one that has been broken more times than I can remember? Unless it is newly numb I strike it off. We have to remember that the natural pain of day to day living and ageing can likely be left off or bumped to the bottom of the list. If it is an old symptom and unchanged I might leave it off (fatigue for instance - I have chronic fatigue syndrome and don’t list it unless it has drastically changed or is relevant to other symptoms). I then take the top five symptoms and list them as a priority. The rest are just part of the list.
Spending the day on the bed, preparing my summary feels so productive, I often have a few drafts before I am confident that I am presenting things clearly.
My doctors get used to me showing up with my summary (two copies, one for them, one for me and we review it together with the doctor taking the lead and asking questions). In Canada our doctors are limited by the Provincial health plans to one or two issues per visit. So we talk about the top two and see what we can do about those right away. I leave her with my list and an agreement to see her in two weeks, I make the next appointment before I leave. At the second appointment, she will have read my list and she comes prepared with her solutions to the remaining three. The rest of the list, the lower priority items allow her to look at me as a whole and she can decide if things are intersecting and how they affect my overall life.
For example, “I get heavy legs and they hurt” is not easy for a doctor to assess and treat. l had noted that I was feeling excruciating pain and cement legs, how and when it happened, that it was very sudden onset, intermittent and that oddly, going for a short walk outside sometimes helped. After an examination and review of my meds, she concluded that it wasn’t a PMR symptom but a fibromyalgia problem, which wouldn’t have occurred to me because I thought I knew everything about my fibromyalgia being 30 years in. She tweaked my meds and I am back to being good. I will stress that I never propose a diagnosis, that isn’t my job, presenting the information is my job. It is gratifying though when your doctor asks you what you think it is!
If your doctor says let’s watch this for a bit, start your diary about that symptom as soon as you get home, We once figured out that the symptom of suddenly swaying backwards only happened when I had over exerted myself. I worked on pacing and trying to avoid the push crash situations and resolved the problem.
Unless I am “really sick” (crying, unable to cope) I go in prepared. This works especially well for me, because although I can write what is happening, having to remember or deliver information in a useful manner by talking to the doc is hard and I get flustered. Coming out of an appointment thinking, “aaargh, I should have said, xxx” is so disheartening.
Think of the last medical show you watched, the interns gather round, “patient is a 62 year old female, presenting with painful legs, …..” doctors are trained as scientists, a well presented, concise document may well help you both.
I have had a great response from doctors with this approach and experienced great results, indeed my PMR was diagnosed in one appointment by my GP and now that I have tapered to 8 mg, my doctor had time at the last appointment to talk to me about adrenal insufficiency and what to expect. She also advised that I need to ask myself, “is this the same pain that I had in the beginning?” We have decided that I now need a rheumy to join my team because some of the pain is not presenting as PMR even though I had assumed it was.
I know we are all different and this may be a challenge for you, but writing things down really helps, even if it just dates and dosages.
e.g.
X times in the past week I have experienced (insert the symptom). It was (insert pain level) and I had just finished (insert your last activity), came on (suddenly or slowly), went away (immediately or over time). It was (new or old) (stronger or weaker than usual). Where exactly on my body (headache, right side halfway between my crown and my hairline and my usual headache is on the left side). To alleviate the pain I took these steps (insert what steps you took to help yourself, i.e. painkiller for breakthrough pain, a rest, a walk, hydrated yourself, or did nothing). *
* I am clear when we speak to let the doctor know that I took a painkiller and went to bed so I don’t know which thing was the one that helped.
Hugs from the chilly Bay of Fundy in New Brunswick Canada
I'm new here
A mystery to the medical team
Not PMR? Not sure what to do next
I think my mum might have PMR how can we get it diagnosed?
Up the creek without a paddle...
