First Rheumy Appointment......PLUS Surgery

Hi everyone I have been a bit busy with appointments and today a Rheumatologist appointment was booked for Feb 9th.... This will be the first for me as when I last when the consultant was leaving and Covid struck.

So I was diagnosed with PMR and GCA and been on Pred since 2019. I'm now down to 9mg. I was on 5mg but had an unbelievably awful flare last month so popped up to 10mg. It was the worst ever.

My GP thinks I could have Fibromyalgia and maybe not PMR. My GP is fantastic.

What will the consultant ask? Should I have notes and questions? If so what notes should I type up? Thank you! Any other tips gratefully received x

AND.......... On Monday I saw a Doctor whose specialism is Orthopaedic problems so she looked at my foot and ankle and then got me an X Ray - all inside 15 minutes! Anyway my X Ray showed some serious damage to my foot and ankle with arthritis and osteophytes. So she has put me in for a guided injection (nice!) and is booking me in for an appointment with a surgeon for an ankle fusion.

I have had an ankle fusion on my right foot/ankle and it was superb. I can now walk really well on that foot.

The downside is the recovery and not being able to get around as much as I like.

Any tips on exercise welcome... although I did well last time

It's our 30th anniversary this year and we've booked week long breaks in Bath (where we met in my pub) and Cardiff for a week (PULP live in concert with disability seating) Plus we'd love to go on a cruise for about 10 days from Southampton so I'm hoping the surgeon can fit me in so I can enjoy all this.

Advice on Rheumy gratefully received xx

AND yesterday I saw a Podiatrist to tidy up my toenails which was really cool!

Hope you are all well

[Longtimer]

I wish you well in what's happening.....keep us posted.Love the picture, same age as you and remember boys living nearby making and enjoying those!

[Rachmaninov2 in reply to Longtimer]

I’m a female and as a child I saw how much fun the boys had with those carts (can’t remember what they were called) and I always wanted one.

[Longtimer in reply to Rachmaninov2]

Oh yes they used to fly down the hill I lived on…….. no brakes!!

[Rachmaninov2 in reply to Longtimer]

I remember that, very dangerous. I think that was what made them exciting. I haven’t seen one for many years, not surprisingly really.

[Longtimer in reply to Rachmaninov2]

Health and safety wouldn’t approve!

[Rachmaninov2 in reply to Longtimer]

Exactly. 🤕

[DorsetLady PMRGCAuk volunteer in reply to Longtimer]

No wonder David has dodgy ankles!

[Longtimer in reply to DorsetLady]

Well there’s a point….. feet for brakes!!

[Hidden in reply to Longtimer]

My heels were my brakes

[Longtimer in reply to Hidden]

Oh dear!

[tempusfugi in reply to Hidden]

Say no more!

[PMRpro Ambassador in reply to Rachmaninov2]

We called them go-karts ... Pram wheels were handy, and orange boxes.

[Rachmaninov2 in reply to PMRpro]

Yes, it’s all coming back to me now. Did you have one ? If so I’m envious.

[PMRpro Ambassador in reply to Rachmaninov2]

Don't think I had one of my own - but I was a girl amongst a lot of boys!!!!!

[Rachmaninov2 in reply to PMRpro]

👍

[Hidden in reply to PMRpro]

I was always a boy among girls. I preferred girls company!

[PMRpro Ambassador in reply to Hidden]

I didn't really have a lot of choice!

[Hidden in reply to PMRpro]

Everything on this one was bought. All the wood was paid for pre cut to my specifications.

[PMRpro Ambassador in reply to Hidden]

Ooooh - posh!

[Hidden in reply to Rachmaninov2]

It was a trolley here in Devon

[MiniSpec in reply to Hidden]

It was a trolley to us in Bristol as well.

I remember some enterprising kids managed to make a two seat six wheeler that was hinged between the front and back seats. Back in those days there were virtually no cars on the roads on our estate, but we did have some roads that where on hills. So one thing led to another and one day a group of us watched as two boys climbed into this monster at the top of a cul de sac, to roll down to the T junction at the bottom and turn left out onto a larger road at the bottom.

To make it 'safe' there was a look out posted at the bottom of the road at the T junction to make sure it was all clear before the trolley set off. However, once rolling it had no brakes other than feet, so there was still some risk involved.

To cut a long story short, just as the trolley reached the bottom of the cul de sac and turned left onto the larger road, a bloke on a motorcycle and sidecar combination roared into view. The look on the bloke's face when he suddenly found he had to move out into the middle of the road because of the trolley now inhabiting the carriageway alongside him, was priceless. Needless to say he roared off into the distance shaking his head and his fist, but for a few seconds the two vehicles were side by side, and both travelling at about 25mph.

We all had a good laugh about that one, and it became quite legendary among our group.

The other thing we used on the same side road, but this time on the pavement, was a book and skate combination. You sat on an old boys annual or somesuch and put it across a roller skate, then rolled down the hill to the T junction, and tried to turn left without leaving the pavement and falling off the kerb into the road. The number of times I ended up with skinned knuckles and a sore backside is numberless, as the skate hit a bit of grit and stopped dead, so that I slid off the skate and continued on, on either the book or my backside.

Ah, memories! I'd forgotten all about those things till I saw the photo. Good times, now sadly departed.

[Rachmaninov2 in reply to MiniSpec]

Thank you for a very entertaining read MiniSpec.

[Myalgia in reply to MiniSpec]

I love this site!!

[DorsetLady PMRGCAuk volunteer in reply to MiniSpec]

What growing up was all about…..if you haven’t scraped skin off knees etc you haven’t lived! Girls and boys….🤣😂

[Hidden in reply to MiniSpec]

Superb! I can relate to that 😜

[Flivoless in reply to Rachmaninov2]

Box carts. I made a few and one or two were actually quite good.

[Rachmaninov2 in reply to Flivoless]

If I’d known you then I would have asked you to make me one. Life was so much fun when we were children wasn’t it. We were always out and about, never bored.

[Flivoless in reply to Rachmaninov2]

Yes, and it was always sunny.

[Rachmaninov2 in reply to Flivoless]

🤔

[DorsetLady PMRGCAuk volunteer in reply to Flivoless]

Course it was 😊

[tempusfugi in reply to DorsetLady]

Long summer hols were always sunny!!

[DorsetLady PMRGCAuk volunteer in reply to Rachmaninov2]

No H&S bods to spoil the fun! ..and most of us survived to tell the tale ….

[Rachmaninov2 in reply to DorsetLady]

You’re right, I can remember a group of us aged about ten crossing a busy arterial road. My mum would have had kittens if she had found out.

[DorsetLady PMRGCAuk volunteer in reply to Rachmaninov2]

Ah yes, well mum's didn't know lots of things....probably just as well.

My brothers who were 11 & 14 years older than me - 2WW came in between - and they were making something like a zipwire [probably not called that in those days] - using rope/wire and a horse's collar - and youngest one of the two nearly strangled himself... oldest one got a right telling off by mother!

Well before my time, or I'd probably be the one getting strangled.

[Rachmaninov2 in reply to DorsetLady]

Love it. The perils of creative thinking.

[DorsetLady PMRGCAuk volunteer in reply to Rachmaninov2]

They obviously got it from Dad, he was always tinkering with something, as did both of they. My son seems to have inherited gene...

[Rachmaninov2 in reply to DorsetLady]

I wonder if young people are less inclined to be as practical now, as they are channeled towards academic pursuits.

[DorsetLady PMRGCAuk volunteer in reply to Rachmaninov2]

Could well be, but they also don't have to "invent games etc" as we did... and maybe the enquiring mind isn't given chance to develop.

My son, even from a young age had to take things apart to see how they work...there's a tale now in family folklore about me saying when we moved into a new married quarter [hubby was in Army] - 'this kitchen isn't big enough to swing a cat in'...

unfortunately we had 2 kittens at the time.... I leave you to imagine what happened 😲... and apparently it was big enough....

[Rachmaninov2 in reply to DorsetLady]

I agree.

I hate to think ……….🫣🙀

[DorsetLady PMRGCAuk volunteer in reply to Rachmaninov2]

Well it did survive and lived a long life ….😊 mind you the Labradors he has now do look at him a bit askance sometimes….. but I think they are probably safe.

[Rachmaninov2 in reply to DorsetLady]

That’s a relief. 😅

[PMRpro Ambassador in reply to Rachmaninov2]

Too much instant entertainment at the end of their thumbs ...

We had a friend with the DL son gene - take it apart to find out how it works. Which would have been fine if he'd always managed to get it back together again - and had studied engineering, He didn't, he chose medicine ...

[Rachmaninov2 in reply to PMRpro]

Exactly.

Not a surgeon I hope.

[PMRpro Ambassador in reply to Rachmaninov2]

No, wanted to do anaesthetics but struggled with the final exams so turned into a GP. He did have a very enquiring mind though which helped and the anaesthetics training made him an ideal partner for pain relief.

[Rachmaninov2 in reply to PMRpro]

I think it’s unfortunate that many doctors don’t have open and enquiring minds, seeming to be content to diagnose and prescribe according to textbooks.

[PMRpro Ambassador in reply to Rachmaninov2]

Yes - a friend on LupusUK calls the good ones "True Detectives". We all need one ...

[Rachmaninov2 in reply to PMRpro]

Those of us who have or have had the others are left to carry out our own detective work. That’s why this forum is so important to us, where else would we find such a wealth of information in one place. It’s the difference between floundering and finding a potential way of getting to the shore. 🙏

[Hidden in reply to Rachmaninov2]

True on this forum. 😍

[Rachmaninov2 in reply to Hidden]

🏊‍♀️🤞🙂

[tempusfugi in reply to PMRpro]

While we're on the subject of the 'way we were' and GPs, I'll never forget the Dr in our village, telling my brother 'Next time you come to see me, you get a haircut young man'! Can you imagine that happening nowadays?🤔

[PMRpro Ambassador in reply to tempusfugi]

Love it!

[Hidden in reply to tempusfugi]

In the early 60s my Dad was a regional manager for a well known cigarette company ... He actually ended up as a Director (and had given up smoking!)

When the only Doctor of ours had a packed waiting room and I was having problems with asthma my Dad used to slide a carton of cigarettes (about 200 ciggies) to her and I was magically first in line to see the Doctor.

This happened a lot!

Nowadays I just use our GP Surgery online tool and it is so much better! I felt like a nuisance back in the day.

[Hidden in reply to Hidden]

Oh and once I was taken to hospital with bad asthma in about 1964/65 and everyone on the ward was sat around smoking!

I later went to Marlborough Convalescent Home and School for children and it was great.

There was even a separate ward for girls and I ended up getting sent home for climbing up the awning of the girls ward and having a cuddle with my favourite girl.

I hid under the bed when I saw her coming but she saw me and a week later I was on a train (with a nurse) and back to Plymouth. That was my first time on a train!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

mine is an electronic engineer - not that he ever followed that path into his working life as such…. but very handy in all sorts of things….just as well as he seems to choose old houses that require a lot TLC….

[Hidden in reply to Rachmaninov2]

I have always been absolutely useless at DIY stuff and this was made using my specifications which a local carpenters shop were happy to make for me. Even the plank part was made with washers and a flexible bolt. I loved it and the colours were lilac and blue which I did. I swiped the tiger tail from somewhere or other!

[Rachmaninov2 in reply to Hidden]

Customisation at its best! I like the skull and crossbones ☠️ , pity the photo isn’t in colour.

[Moonshine15 in reply to Rachmaninov2]

I remember these they were called gambos in Wales, I wanted one but my father said only boys had them, I think he only said that because he couldn’t make one 😂

[Rachmaninov2 in reply to Moonshine15]

Same here, I never understood why girls couldn’t have them. The boys wouldn’t let you have a go in theirs either. 😖

[Hidden in reply to Longtimer]

I loved it and built this one with help from my Dad.

[Merryfield in reply to Hidden]

Besides being good with go karts, you have such a positive attitude about getting parts of your body repaired and the travel plans coming up. You are a good example to us.

[Hidden in reply to Merryfield]

Thank you for that lovely comment! I have a terrible habit of being so positive I can't abide people on buses randomly moaning about everything.

I find being fun, positive and polite works wonders in medical situations too.

[SheffieldJane]

Fab photo! Happy anniversary! You sound so upbeat! 💐

[Hidden in reply to SheffieldJane]

I usually am. 🤪

[DorsetLady PMRGCAuk volunteer]

Busy boy -hope all goes well…and congratulations on 30 years together -you’ll be buying some pearls I trust!

[Hidden in reply to DorsetLady]

Ha ha no going to see PULP will be good enough

[Longtimer in reply to Hidden]

I’ m envious!

Common people, so funny!…. No one else sings it like him …,

[Hidden in reply to Longtimer]

PULP have a beautiful melodic song called Sunrise. It's lovely.

[Longtimer in reply to Hidden]

Ok will look that up. Music and crosswords get me through. Thank You

[Bridge31 in reply to Hidden]

Loved it. On my playlist.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Fair do’s …enjoy…like  Longtimer one of my faves..JC is one-off….

[MrsNails]

Hi David

Podiatry must be the ‘thing’ of the week, l had an ingrowing toenail dealt with yesterday & he gave me a local first! All bandaged up now!

tangocharlie added this post - it’s now in FAQ’s which you may find helpful. I’d suggest you write down the key points in chronological order doses, flares etc

healthunlocked.com/pmrgcauk...

Remember don’t be hiring a Mobility Scooter after your Surgery, after last time 😵‍💫

Hope you can fit the Cruise in too - we’re off in March for himselfs’s 70th down to The Canaries & Madeira.

Good Luck with everything 🍀

MrsN

[Hidden in reply to MrsNails]

Cheers MrsN xxxx MrsNails

[tangocharlie in reply to MrsNails]

I got 'tagged' so chipping in my two penn'orth. My first rheumie appointment was dreadful, he insisted I was too young to have PMR (I got it at 50, still had it then aged 54) and he also said even if I had had it, it would have gone after 2 years. Well we all know niether of those are facts, more like myths. I spent the next 2 years battling to get help as I was told I had fibromyalgia. so my first thought is make sure you get a rheumie who knows something about PMR as most don't. Ask people in your local support group or go and see someone recommended often on here privately eg Rod Hughes. Be prepared to stand your guard. If he/she says you haven't got PMR insist on a PET CT scan which eventually proved I did have it (I got no apologies for being messed around and being misdiagnosed and in pain for years). I remember I actually brandished Kate Gilbert's book at one point! Good luck, and courage, you're going to need it. BTW, I, or rather my brothers, also had a 'bogey' as they call them in Yorkshire like that one in your picture, it's a wonder any of us survived to adulthood

[Hidden in reply to tangocharlie]

Thank you for that tangocharlie This was my first "real" rheumy appointment after three or four years having PMR! The last one BC (= before Covid) said he was leaving and handed me over to a nurse.

I mentioned Kate Gilbert's book and that was the end of my appointment it seemed!

What on earth is wrong with some of these "professionals" that we are a bit intelligent and look things up on authority websites? I do every-time I get something. It's the future after all. It's not Dr. Google. Google is merely the (very superb) gateway to knowledge. I found Kate's book through Google and then came here.

My GP practice is superb with that and do double checks on my symptoms and thoughts then come up with a plan of action. They have never failed my wife or I! If they ever did I wouldn't say a thing. High regard and respect!!

I don't think there is a local support group around here but then the www makes Health Unlocked "local" 👍

David x

[PMRpro Ambassador]

"My GP thinks I could have Fibromyalgia and maybe not PMR. My GP is fantastic."

Did it improve with more pred?

"The downside is the recovery and not being able to get around as much as I like"

It's the long game here!

What to ask the rheumy? Well, first of all you need to assess them! Are they going to be receptive to questions and discussion. I'd ask what their opinion of the other problems impacting on the PMR - I know people struggling to taper pred who had a joint replacement done and then were able to taper steadily.

[Hidden in reply to PMRpro]

Yes it did improve very quickly 😎 it was the worst flare I've had and was barely able to walk. Thank you for your help. D

[PMRpro Ambassador in reply to Hidden]

Then whatever it was - it WASN'T fibro ...

[Meggsy]

My brother had one. It was called a billy cart in Aus. Happy Anniversary David. For our 30th we went to Pearls on the Beach restaurant at Pearl Beach, ordered oysters but alas, no pearls within. All the best with your treatment. 🌻

[Hidden in reply to Meggsy]

My daughter and two grandchildren live in Cairns. They love it!

[Meggsy in reply to Hidden]

I have only been there in beautiful winter warmth. I don’t think I could take the hot humid summer.

[Bridge31]

I enjoyed reading all that. I hope you have a wonderful time with all the plans.

We love live music and are going to Philadelphia next month to see the band America (“Horse with no name “) who are performing just over the border in New Jersey. Staying 5 days in Philadelphia where it will be around 7 degrees then 5 days in Miami to find some sun where it will be around 74 degrees.

He wants me to take hand luggage 🤣

[DorsetLady PMRGCAuk volunteer in reply to Bridge31]

He wants me to take hand luggage..

Yeah right, good luck with that then!

[Hidden in reply to DorsetLady]

Hand luggage? No chance with me! Even a hospital stay is a very large bag

[Hidden in reply to Hidden]

That bag will be full of M and S pyjamas, Mod T Shirts, Chinos (I refuse to lay in my PJs all day) an iPad for watching TV and Netflix with headphones. Skechers shoes and slippers. A Kindle and iPod with headphones, a 24 pack of flavoured sugar free canned drinks, chocolate and a veggie wholewheat sandwich.

I will have a cast cover so I can shower + all the stuff to keep clean including Tea Tree wipes.

Last time I was in I noticed the shower wasn't busy at breakfast time so I was in like a limping rocket.

I will self medicate with prescribed medication and that all goes in pill containers for which I have a phone alarm that goes off to tell me when to take pills..... There is more.... Oh yes! Liz will visit and fill a flask full of decaff black coffee and a mug from home...... There is more...

[Hidden in reply to Hidden]

And several boxes of chocolate which I make sure the nurses and HCA's get

[Hidden in reply to Hidden]

And about three chapstick's and under arm roll on

[Hidden in reply to Bridge31]

I absolutely love TSOP music. The Sound of Philadelphia. Harold Melvin and the Blue Notes ++++++ I'm also a Motown fan of many decades

[Merryfield in reply to Bridge31]

Husband has a phobia about checking bags. Have to wash clothes during trips😬

[Bridge31 in reply to Merryfield]

He says just buy cheap tops in Miami and leave them behind. Not sure anything is cheap in Miami 🤣

[Bridge31]

Sunrise downloaded. I shall listen to it whilst walking the dog.

[Hidden in reply to Bridge31]

"Sorted for Es and Wizz" is a top favourite of mine. It reminds me of when I was living in downtown San Francisco and was a department manager for the wonderful store chain that is Nordstrom. I went outside one day and laid on a marble block on Market St. and the song by PULP was going around in my head and I wondered what on earth I was doing working indoors managing some very spoilt employee's (PITA!) so I left shortly after and worked outside for the next fifteen years.

It was glorious

[Bridge31]

you have had an exciting life 😃

[Hidden]

Yes true but sometimes it's been tough going.

[Groovykindoflove1992]

It sounds like you've had a veritable pamper 🤣 and you have lots to look forward to too! We had an extremely old 'trike' that was passed down from my brother to my two sisters and then eventually to me (my brother is eleven years older than me.) It had a big metal boot on the back and somebody had randomly put a tablespoon in there. It clattered around for years annoying everyone, and for some unknown reason, nobody ever bothered to take it out 🤣 I was diagnosed with PMR and eventually Fibromyalgia too. Sometimes it's hard to distinguish between the two. I've been off pred completely now for ten months. For me, I have the same pain with both, but with PMR, I also had the horrible toothache like pain that seemed to be deep into my muscles and felt like it was in my bones. That pain was there even when I was perfectly still and I don't have that now. I have the old deathly fatigue with both. We unfortunately had a family bereavement by suicide last week, obviously very shocking and devastating, and I have flared up unbelievably and am in a lot of pain 😞 I feel like my body has been totally tensed up for several days now, so even my teeth are hurting 🫤 I am keeping a very good eye on myself though. I have a lovely GP and rheumy nurse who I can contact at any time, and I will do if I feel the need 💁

[Hidden in reply to Groovykindoflove1992]

Be well 👍

[Poshdog]

We had a trike with no seat - managed to get at least three passengers on it - thanks for a brilliant and informative post - and love the photo x

[tempusfugi]

Thoroughly enjoyable thread. Thanks David and all the very best to you.

[Hidden in reply to tempusfugi]

Thank you!!!

[Chiqui1950]

thank you so much for taking the time to share!! My PMR felt like fibromyalgia but it was not. It responded quickly to 15 mg of prednisone!! One day at a time!!

[minka]

Frank what would you say pull back time ankle fusion is. My ankle is giving way and damaging my knee also. Did you have that problem and the underside of foot ligaments are inflamed but no swelling in ankle. Looks normal but it gives towards inside

[Moonshine15]

Hi hope you don’t mind me asking but can you drive a manual car after your ankle fusion or did you have to buy an automatic, and how long did it take for you to walk, I’m having a fusion soon and I’m really nervous about it

[Hidden in reply to Moonshine15]

Hi there! I don't drive these days. I could but don't feel comfortable about it given my conditions :/ The actual fusion side of things was like "oh was that it?" But, after a while I soon got peed off being unable to walk. At first there can be pain if you don't medicate enough. BUT it's tolerable. I forgot how long it took me to walk but at a guess I would say 8 weeks. My surgeon was my guide. At first it was a struggle but I managed. I kept everything I needed in one place in the kitchen. IE One mug, one pack of sweeteners, spoon and so on next to the kettle....all the time. My wife would have some prepped food in the fridge. I always put a backpack on when going from room to room so everything I needed was with me all the time... No "oh sod it I forgot my 5 o' clock pill" or "I left my laptop in the other room" It worked really well and her indoors made sure I always had a flask of black coffee. ALWAYS bring a portable thing that us fella's can pee in A MUST! I always put the pee container in a plastic bag for vanity's sake. I'm so happy (jumping up and down here) I had it done but now it's exactly 14 days 'til I have my other foot done! August 18th. I have the same surgeon who is a lovely gentleman. James Brown! Great for a retired pro DJ eh? Let's get funky! The left ankle is really bothering me now so I'll be happy to have this done.... Want photo's ?? I met two nurses a couple of weeks ago and they were lovely. I read somewhere that the most annoying thing to ask professionals is "When's my surgery date?" so I didn't ask and when I left said goodbye... left it 5 minutes then walked back in and asked what my date was. They cracked up. I am nervous again but laughter really is the best medicine. David