I haven’t been on for a while due to wallowing in a deep dark pit of woe is me.
I did go to Southwell for an informal meet up with the ladies and enjoyed their company. It’s hard to stay positive when I can’t get an appointment with the DR to manage my steroids and review my meds and progress. I have been thinking constantly what shall I say to get it all in as my three issues are connected. They can only compute one thing at a time and it’s a DR I haven’t seen before so we have to start at the beginning. That’s your 10 minutes up before you even address what you want to sort out. Will she see as a patient with PMR or an overweight old person who has brought all this on herself due to bad lifestyle choices? Someone who is not willing to change to help themselves? Will this DR know what PMR is or refer to it as Fibromyalgia as the last one did?
However it goes I still have a meeting in Ilkley to look forward too as there is a professional coming to discuss some of the burning questions that we need answers too. There is all so the research and info posted on here by some of the most knowledgeable members that helps me make decisions based on fact. So I’ve pulled my head out of my pit slapped myself about a bit and have got back in to non sulky mode. This was me fit sporty and healthy as a butchers dog in 1987. Where do the years go?
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Estellemac
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True... It is so simple at our GP - no receptionist to fight, one doctor, who spends all the time she needs with you. Working on the assumption that if they are ill enough they will wait, if they leave they weren't that bad...
That's how it used to work when I was a child. As far as i know there weren't appointments, you walked down to the surgery and waited your turn. If you were too ill to do that (and I often was) the doctor would visit, usually around lunchtime
Exactly - one of the things we like about here is that it is sort of 30 years behind the UK in some things - and 15 years ahead in others! Both the right way round...
I like that basic concept. So many people think Doctors can cure everything and never wait long enough to see if goes away or gets worse, and if they are not prescribed antibiotics there’s a hissy fit.
Italians are a bit like that! They arrive up here on holiday and turn up at A&E demanding a full health check. We have a colleague in the deep south, all 3 kids are now doctors too. We were there for xmas/New Year a few years ago and the kids (at medical school) had a cold - mummy was demanding daddy gave them abx immediately. OTOH, my MIL always said she waited 3 days before going to the GP - so I said I hoped she wouldn't do that with a stroke or MI! Her son seems to be taking after her - though he is now admitting he is wrong to keep thinking he's "getting better", when he isn't!
Not on line. They don’t have enough phone lines and if you do get through all the appointments have gone for that day and no prebookable are available as it’s too late. Could though if I could queue up from 7-30am but I will do after this appointment on Friday.
Hi Estelle
I just saw someone suggested a double appointment & if possible the last one of the session.
Make a note of all the pertinent questions & details, then you’ll get the most out of the appointment.
As we’ve moved I’m busy seeing a New GP; New Consultants etc so I’ve been taking copies of everything to each appointment which has been very helpful.
Keep in touch with the Forum again, as it’s always a good help to gain support when not feeling so great.
Lovely to see you back! We’ve missed you. Your experience is horribly familiar. Each visit seems a waste of time except for tests etc. You are the same sporty lady underneath all this. X
Today, not so sassy...but hey, still holding our own.
I hear your issues with docs,
Recently, I went to see an ortho about chronic back pain (previously he did surgery, spinal stenosis).
He walked in the door and said, "you are overweight" (😱 no!! Didnt know that!) ,
next words, "you have arthritis, nothing I can do for you." I said.."i have a broken toe".. he said..".I dont do feet" ..I said, "you do xrays, and I want an xray". He gave me the xray order, and we parted ways.
Grumpy old fart!
Agree with your query, do they see us as people with health issues, or as overweight old people who brought our woes upon ourselves through unhealthy lifestyles!
Oh, I took the xray to podiatrist who confirmed fractured toe, and advised I get rid of the offending cast iron wine rack that had caused the damage. Then he gave me a roll of tape and said "buddy wrap".
Love the solution to your toe get rid of the smashy hazard. One of my other things was getting to year 4 of PMR and not being able to reduce enough to come off the Pred. I saw the video link posted by DL on how long PMR could go on for. You are 3 years longer than me and have coped so far so I can get on with it too. 🙏 Cheers
It’s hard applying it to myself though. You’d think by now I could stop living in the past and look to the future. With all these lovely responses I think I am ready to start again. Take thing as they are and move on. Thank you.
You would find much support here during your black moods. Perhaps no need for stiff upper lip. But, of course, there is always good information about how to circumvent the inevitable worst of medical appointments! All best wishes on both counts.
Hello - sorry you've been in such a gloomy place recently. You'll get support here whatever your situation, so don't feel you have to hide away when you're feeling down.
I empathise with the doctor situation - if you ever find a 'good' one, appointments are like hen's teeth!
I am glad you have managed to pull your head out of the pit, but please don't slap it about! You must now be kind to yourself. Imagine it was someone you love with your symptoms and problems. Would you nag and bully them? Of course not. Talk to yourself as you would talk to them!!!!
I have every sympathy for you. I have a painful pre PMR condition and it is often difficult to get a doctor to see past that. I also suffer from depression - I haven't had a bout since I have been on pred though! Make a double appointment with your doctor and before you go make a list of the most important things you need to discuss.
Hello Estellemac - the very fact you've made this post shows you really just want to get on with things and finding a 'good' doctor is a really important thing. I know they are often pressured for time and i agree a longer appointment may help and having a list of statements and queries etc BUT if you don't get a doctor you feel comfortable with then I'd be looking for another one - they can vary greatly in their knowledge and attitudes - it is your health and well-being at stake after all that - and you deserve good supportive 'treatment'.
Thanks Rimmy. I was really assertive at first always have been but it just wears me down as I go in to year 4. Talking about it to those who understand is sometimes as effective as seeing the DR.
I made my single appointment online and then, on the morning of the appointment, phoned the surgery to say that I really wanted a double appointment as I had 3 issues I wanted to discuss with the GP. The receptionist said "Oh, so you'd like a triple appointment"! I declined that, stupidly, and accepted the double appointment that she managed to magic up from somewhere!
We've missed you lately, but it will be lovely to see you in Ilkley - hope the weather stays fine for your journey.
PS I'd have recognised you from that photo - and you've not changed inside. That's an idea for one of our meetings - all bring a 30 year-old photo!
I will come regardless of weather to Ilkley as i am doing the train. Saying that it was horrid slippy snow and ice last year I think. Once I write down on here my feelings and thoughts they seem to become more tolerable and less of a problem. Especially with all the kind words from the community. I may have a rant tomorrow after the DR but that will help me plan the next appointment. I will ask for a triple one see what response i get. 😤😕
Ask to book a double appointment. I do this if I need to discuss more than one thing. I also write bullet point notes in case of pred head. Hope you get sorted soon xxx
Don't ever feel alone , if you ever want to chat , even though we have never met , please feel free to private chat with me .
This condition takes it out of you and you are stuck inside your house and inside yourself so much because of it , it's worth chatting to anyone who understands what's going on to stop getting to the lowest of the low.
I totally understand your feeling of frustration with the Doctors , especially GPs. If you don't see the same one that you have managed to ' educate' about your PMR you are right , you basically waste a whole appointment on describing what's wrong and don't get anywhere.
And getting an appointment with a specific GP you have already seen becomes a nightmare of delays with the GP patient unfriendly appointment systems.
Not having your drug regime set at a level that is right for you adds to the pain and frustration physically as well as mentally , but please keep in touch.
And if you ever want a chat on PMR , but not just that , something to keep your spirits up and remind you, you are a person not just a PMR sufferer , I am always ready to talk and maybe we can have a giggle too to help lift our gloom.
Thanks Bee. I feel so much better for knowing I have your personal support and that of the forum. I started off strong and determined but slowly lost my mojo. That was never like me. But I am different now so are my circumstances and I will have to accept that. I have an underlying guilt issue about being a burden and also not earning towards our retirement but Parker doesn’t?
Got to get that out of my head. I am luckier than some to have a husband who works, slightly understands and never complains even when he has to do the cleaning!
It is hard to get past the guilty feelings but one you can make that step it does make things easier.
Just remember you are not guilty of anything because you never chose to be ill , it's just unfortunate that you became ill , strangely sometimes it's easier for our loved ones to understand this quicker than us.
They don't think we are a burden but a loved one they want to help get back to health.
Unfortunately , when it comes to healthcare our Doctors don't help us get past those negative feelings about ourselves or our conditions because they are so slow in giving us the assistance we need to help ourselves.
I keep saying to people there is nothing that makes you feel more ill than trying to get well.
Sadly , that's too often the case for many of us , but at least we have each other to help get through the day , so please keep in touch and hopefully we can help keep each other going.
Such sage words so true. It does makes me feel worse trying not to be ill and forcing myself to be well. Impossible. The voice of reason hits home. It has to come from someone else too.
Good Luck - before you waste any time and possibly I might be inclined to ask "And tell me what experience do you have of the treatment of PMR?" If he knows a lot then ask about it if he knows not a lot then you have the chance to teach and impart all the knowledge you have gained on this forum! Just a suggestion xx
Go for it! Just remember - s/he works for you - not the other way round, and the oath says first do no harm - and that's mentally as well as physically so expect to be treated like the intelligent woman you are. I would be at the Ilkley meeting only I'm 3 days post op after a repair - currently sporting a natty line in catheters - definitely an experience not on my bucket list! Not allowed to drive for 6 weeks......
I actually feel really good, thanks Bee. It's just a nuisance and a ruddy inconvenience. The post op info says "short walks" what's a short walk for goodness sake? The beagles looked so expectant yesterday morning and I did succomb to the look in the eyes and take the little one out. He doesn't pull on the lead at all Now
for me a kilometre from home and round the park is a short walk so I just did about 600 m.....who knows if that's short or not? Mb xx
Good to have you back Estellemac. I think when we look back to see how long we have been on this journey it can be a bit depressing. I know I miscalculated how long I’d had PMR then GCA and it was a year longer than I’d thought! That I found a bit depressing. So I’m trying to just concentrate on each day , not looking ahead or looking back at how long this journey has taken. All the very best in getting a suitable doctor’s appointment. Glad you climbed out of the hole.
I’ve got me head round there’s no way back just got to do the one day at a time now. I worry about these appointments-because they are few and far between that stresses me out. But I can manage that if I try. 9.20 tomorrow will sort something out. We shall see.
Even if you don't get everything you need on that appointment be positive that you have made some steps and just automatically book for another appointment as you leave , you can always cancel it or change the date later , let us know how you get on.
I changed my diet and lifestyle after reading Dr Grundy’s Plant Paradox! I began swimming and yoga and I am so much better! His book has changed my life!
I have changed my eating plan and have great family support but I'm still stuck in the fat zone. Once I get my mobility back with a bit less pain I will make make changes and sort my self out. I will have a look at the book you mentioned. Thanks.
Please let me know how you are doing my lovely. I am on 6mgs and finding it hard work . Hey ho. That is life. Pm me if you wano to chat whenever my dear .Janette xx
Sorry you've been down in the dumps. I've missed your entertaining posts 😊 Hope Parker is continuing to behave. Others have already suggested asking for a double appointment and making a list of things you want to discuss/ask him about. All I can add is take a pen too, to write down his answers. Bl**dy predhead makes it necessary to write things down. Hope your appointment goes well. Let us know how you get on.
My GP surgery in UK has introduced e-consult from their website. You can write as much as you want to GP then they will respond. I used it, got an email back to say they would be in touch, then a call from a nurse who organised testing equipment and request form for me to collect. Samples delivered to GPs and I phoned for results a few days later. Fortunately, all clear for me and no action required.
Sounds interesting. I will ask them next week. Though they have only just got SystemOnline working for Perscriptions and booking advance appointments. Thanks.
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Still suffering but jury still out it seems 🙁
wife of Long term PMR sufferer 
Suffering severely. Cortisol too low.
Suffering from Covid with adrenal insufficiency 
