Good Morning All
How many of you out there keep a diary of re occurring symptoms to talk over with your consultant or GP when visiting again?
Did you find your consultant or GP took notice of your logged information ?
My notes in diary started a month ago 😔
May I wish you all a lovely forthcoming weekend
No rush for replies 😁😁😁
Love
Trish x
I’ve not done it for a while now, but yes it was a useful exercise, I did it about 4 years ago and gave it to my consultant as a list of symptoms, to tick off any that were PBC related.
She looked at it , was thoughtful for a minute and said none of them... She did however, send me to rheumatology for further immune testing her thinking was lupus, or some other autoimmune disorder however, all the tests were clear at that time.
The rheumatologist read the same list and went over every symptom with me and decided it was all related to poor sleep quality, apparently I don’t get the deep restorative sleep. ( can’t remember the last time I slept through the night, normally three hours at a time , maximum) so it’s a possible diagnosis. . My GP wasn’t interested though, he’s a one symptom at a time man. Ha Ha, my list would of been a week of appointments there were so many.
Hi Candy
Cheers for sparing the time to respond which I do appreciate very much.
I'm able to reply so quickly as I'm currently at the gym biking and running an hour and half behind my usual time! 😣
I like you dont normally sleep for long periods of time unless one of my symptoms kicks in and then no matter what sleep is required!
I know I'm an active person most of the time which you could say is to blame, but we all know our own bodies especially when other symptoms have recurred too! Hence now keeping a diary!
It's funny you mentioned the rheumatologist as I'm going to be highlighting to my GP on next visit that my centre finger on my right hand I cannot straighten fully and that my knuckles seem to be increasing slightly in size!
However I do not have any discomfort so I've just been living with it for a few years. 🤣
Are you still not able to sleep through the night? I'm guessing you've tried all the sleep remedies on the market? Unfortunately I wont take meds unless it's a priority that I do as I'm allergic to so many! Sensitive Tum! 😣
Take care Candy! Here's a 'hug'
Have a nice weekend
Trish
I was given given amatriptaline, but like you I don’t like taking medication unless I really have to. , so never took it. I don’t want that sluggish morning feeling either, it’s the only time of day I feel normal. Fatigue hits in the afternoon it’s like hitting a brick wall and I’am done for the rest of the day.
I get about five hours sleep now on a good night, so it’s a step forward and a lot of the aches and pains have indeed got better.( But that could be the vitamin D I take rheumatology tested me and I was found to be deficient).
I do meditation before sleeping and I think that helps calm the mind.
Enjoy the rest of your day 🤗.
Hi Candy
Lucky for me I wake up even after a few our sleep full of energy and with a smile after hitting the shower or bath😁
I'm the world worst at not taking medication🤣🤣 but I'm the greatest at telling others off for missing there's! 😁 !!! I think that the ex nurse side of me coming out! However I only did 2 years nursing back in the 70's at the QE Hospital in Birmingham then got married and moved to an area in Scotland which was to far away from a major hospital to work!😣
Oh well it's time for brunch then a suitcase to pack as I'm away at my daughters until Tuesday! It's a girlie hen do 3 year reunion anniversary !!!! Yep you guessed it, the girls these days make up any excuse for a get together 😁😁!
Bye for now Candy! Xxx
Good morning my lovely, I kept a diary since Feb being diagnosed.
My fingers and joint are agony every morning to the point my fingers look like wee sausages. And I have both middle and ring fingers which hardly close too.
I have difficulty opening jars and bottles. Which frustrates me so much, I’ve been beaten by a milk carton a few times 🤦♀️.
I had a visit with GP Yesterday and he did go through my list with me, he didn’t have an answer for all symptoms but did try.
My consultant appointment should be this month, however I found out she is running 4 months behind.
Hope your feeling well today.
Jane xx
Good Morning my Sweetpea
Milk cartons and sausage like fingers , you really know how to cheer me up! 😅Joking ! You know I love our PM jokes!
However on the serious side of things it's not funny what I said above! I'm now keep that diary and hopefully when I do see my doc onnthe 1st of July he'll take my notes on board!
On the fibgers/hands side of things, I was never blessed with pretty hands like my sister who has beautiful hands with long fingers and long legs too! Unfortunately I'm on the short side at 5.4! However I do believe nice things come in small parcels! 😁😁
Oh well my lovely ! Brunch must be cooked and case packed!
I will PM you over the weekend !
Love Trish x
Hi Trish,
My husband doesn't write down much except tracking his blood pressure.
I, on the other hand, have a notebook for his doctor's appointments and sometimes will write symptoms or issues he is having that I want to make sure we ask about. No matter which doctor we see - we do get them answered. We also live in the US - I don't know if that makes a difference - or if any difference is more due to the individual doctor.
I learned to have a notebook when dealing with my parents illnesses and doctor appts.
Best wishes,
Mary
p.s. I also keep in that little notebook a current list of his meds and the dates of other major issues he has had ie - neck disc fusion -2012, liver failure - Nov 2015, broken foot, broken hand, broken foot <sigh> so we don't have to try and remember if asked by someone if he's had other major issues [why do they think you can remember what year something happened once you pass the age of 30?:?? We just hit our 70's and I sometimes have to think hard to remember when my 2 kids were born LOL
Good Morning Mary
Its 5 .15am here in the UK and I've just woke to find your message which I thank you also for.
I think keeping a note book is a good idea as your correct in saying we cannot always remember everything that's happened that the doc should know.
For the last 25 years or more I've kept a typed up medical history of myself highlighting dates of operations/procedures, x Ray's, scan's and broken bones etc going back as far as I can remember which I try to remember to take with me when seeing a new consultant.
I also write my list of medications I'm allergic to on it as there are lots😁. This has part has been extremely handy.
Well again thank you!, may I wish you a lovely weekend.
Trish x
I didn't do a daily one but did do a list which I updated from time to time. It was very useful to have. It was really handy when being considered for transplant especially, but having something like that is a good idea, even for clinics. I've found that the docs like it too.
Hi
Yes, I too make a list of anything, also write all my meds down too. I can't remember when I last had a good night's sleep!! I have about an hour's sleep per night re pain. Dr offered sleeping tablets but I said I don't have any problem getting to sleep it's the pain that wakes me up!! You all take care Lynne
Hi Lynne
I'm really sorry to read your suffering so much with pain this keeping you awake!
Like I've said to Athurthegreat and Pilomilo and others that no one on this blummin planet should suffer with pain like you all do !
Heres my invisable hug Lynne, maybe it will give you some comfort to know I care.
Nighty nite as it's very late now 00.31am.
Love Trish
Sorry for only just replying but had left my phone on silent!! Thank you so much for your support and kind words. Love and hugs Lynne xxxx
Back and walking with caution.
My first trip back from kings 
Happy Bank Hols to one and all !
