nearly a year, then appt just 15 minutes long…was booked as a 45 mins appt. Nobody went in before me, I was only one in waiting room, & I saw him go into his room 5 mins before my appt time. I then waited 35 minutes. He seemed angry because I’d been given a new patient appt when I’d been seen twice before in 8 years. I explained..lots of new symptoms & problems (but no chance to say what they were).. Very very long story shorter…he re-diagnosed my fibromyalgia (5th consultant in 11 years to do so), said he couldn’t see anything inflammatory, but the steroids could be masking it all, especially as I had a depo medrone injection 3 weeks ago. He confirmed hypermobility, too! I didn’t mention recent Raynauds diagnosis.
He said I shouldn’t have been taking steroids for so long (just over 3 years), but they are often responsible for weight gain…gained 3 stone in 7 years, firstly with short steroid courses for lung infections, then diagnosed with PMR by GP…classic symptoms & great results within 3 days of starting steroids.
He said he wanted me off steroids immediately…I must stop taking steroids asap, by 1mg per month. I said that, after the last PMR flare I was put back up, but was now dropping by 0.5mg a month. He gave me a form for a test (cortisol & CRP), & said this will be early morning, but you must be there. This won’t happen until I’m off steroids completely, & it may be a few months, so I must keep the form he’s printed carefully! He agreed to taper of 0.5mg a month, if necessary.
He said if I find it hard when tapering the steroids, & don’t feel well, then I must just ‘tough it out’ in order to get off them. He said I mustn’t have any more steroids, I mustn’t increase oral steroids & no more steroid injections. He was very forceful & somewhat pacing the floor.
He said my CRP levels had never been high (& i don’t think he thinks I have polymyalgia). Previous rheumy 2 years ago asked me which of her colleagues diagnosed my PMR…when I replied ‘my GP’, she muttered hmmmm, & wrote something down! Do patients have access to read their hospital notes in UK these days, please??
I had prepared for ages, notes on new symptoms etc, wanted to discuss dislocations of fingers, & subluxation of ankle & wrist, ask my ready prepared questions…Dr’s referral was for sero negative arthritis and/or Ehlers Danlos syndrome, after 2 1 hour long examinations & discussion. Then he gave me two brochures, one on fibromyalgia & one on hypermobility, & escorted me out.
I have a Dr’s appointment on Friday…it was so he could inject the trochanteric bursitis which is bad. Hmmmmm.
Three weeks ago I was on 3mg pred, now I am on 2mg & have bad shoulders, hips & the awful leaking head sweats & night sweats are back, even in the snow!! Also have had a few headaches (not normal for me but watching signs carefully).
Thank you for reading. I know there’s not much can be said. But I thought I’d share my experience!! I was so well prepared……
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Oh flippin' Nora [or other stronger words] - what a disappointment for you. .and obviously no advice about adrenals struggling with the taper... no comment there!
Think you need to get your GP onside regarding that in particular - and I would still be considering the injection for your trochanteric bursitis.
Thanks…actually, words failed me. I’ve been very impressed by my GP, how much time & support he’s given me. I believe he was correct as I have definite PMR symptoms, & fit all the issues that frequently arise here! I wasn’t referred to the rheumies (3 referrals in total) for PMR, though! The bit of the referral that said ‘please help me, so I can help her’ said it all! GP’s are limited in what they can do. It will be interesting to see what happens on Friday! Fingers crossed I may have the bursitis injection. Yes, no mention of adrenals at all, I’m so lucky that this forum has taught me about adrenal crisis, & issues. Time will tell if I can just ‘tough it out’ through this flare up, & see what happens at the next taper. Thanks again, S x
Don’t you just hate it when one’s brain is too stuck doing a double take in disbelief at what one is hearing? By the time the thoughts are marshalled one is trying to work the parking payment machine to go home to regroup. I had a humdinger one of those (shouting, raised hands) in the summer, not my first, but it still had me bamboozled.
YES!! I think I knew it was going pear shaped as I sat & waited 35 minutes. Especially as I knew nobody was before me, & I’d seen him go to his room. And, no, he didn’t apologise for keeping me waiting, LOL! Car park was overloaded, as often is, so hubby came & after I’d gone in he found a space. I came out, said I was driving home & that I did not want to discuss it until we were home. On the way in, I said to him, I just hope this specialist doesn’t waste precious time by diagnosing fibromyalgia yet again. I think I’d walk out if he did. But he did. Tested all the pressure points. Scored me 16/18 points. Definitely fibro then. Thanks for your understanding, I feel a complete failure, & feel I let my husband & my GP down badly. This is all we’ve been waiting for for a year. S. x
Kind of you, but it will be a while before I can agree! Never mind, now I don’t have PMR I can start decorating our bedroom tomorrow & save more money! S x
You were let down by his lack of compassion and professionalism and it wasn’t your job to transform him. Also, Fibro doesn’t exclude PMR; you can have both. Steroids don’t do a lot for Fibro either, I know from my own experience.
Gosh, that sounds awful - I'm sorry you had this experience. I've never seen a rheumy and, actually, have never seen a GP - was diagnosed over the telephone. No-one keeps a check on me but, on the other hand, I'm sometimes glad I am left to myself. Hope things improve for you and that you have a good GP.
I’ve never been referred for PMR, first referral was for fibromyalgia, second was for osteoarthritis & third as written above. I’ve been OK handling dosages until now, & GP support during my bad flare was excellent. But to face criticism for being on steroids too long at just over 3 years…! I have an excellent GP who always tries his best for me. Thanks for your reply, I appreciate it! S x
Oh wow! Thats just so horrible for you. Please be careful and watch the symptoms. These medics really dont have a clue how some of us struggle with all this, not to mention conflicting views/instructions from different doctors. Its not like we asked for all this. Like DL says maybe consider the bursitis injection, it might help you along to ease even one thing. Best of luck, let us know how you are getting on. My first rheumy took me off steroids after less than 18 months, nearly destroyed me. But i didnt know any different at the time. Take care.
Oh, believe me, I want the bursitis injection! But it has to be my doctor’s decision. Ah, so you had a rheumy take you off the steroids, too, thanks, that’s interesting to know. I don’t think they see the suffering they cause, plus they haven’t had to suffer the illnesses, either! I’m being careful, but I’m pushing my luck a bit, too, to see what happens!! In a sort of controlled way! S x
Well he wouldn't be MY rheumy after that appalling exhibition of ignorance, arrogance and blinkeredness. In fact, I would have left, not required escorting to the door. ANd spoken to PALS for a start, they can't do a lot but they do deal with breakdown of relationship with a medic.
I've been on pred for over 13 years - what would he say to me I wonder? And my guy is totally laid back about it.
I wonder what he'd say if you took him at his word, "toughed it out" and ended up in the ICU with an adrenal crisis? Or, like a PMR friend of mine, in the ICU because she had been ignored and decided she was fed up being on pred, even only 2 or 3mg, so tapered off, It wasn't an adrenal crisis, it was (they think) vasculitis that was being keep under control by that low dose of pred for the last several years without symptoms. She then went into organ failure and was a VERY sick bunny, needing to be transferred to the Big Hospital renal unit for dialysis and her daughter recalled from New Zealand. She has just gone home after about 6 weeks - with all the appurtenances of an invalid (much to her disgust).
PMR is NOT a disorder that is beneath him, it is actually a very difficult disease when it comes in one of its more evil incarnations.
thanks, good to hear your comments! I have little choice. I was happy to move from the previous rheumy because she didn’t seem to believe I had PMR (though she helped with my osteo arthritis). The 15 minutes went so fast, I was caught ‘left footed’ as he first checked my heart & lungs & pronounced them sound. Then he had me remove shoes & socks & asked if I could touch my toes (checking for hypermobility), same as when he grabbed my arm & hauled it backwards to test the elbow! Then he asked me to lay down on the bed, & I thought, great now he will find the stiffness in my legs, the hip pain, the bursitis etc etc…nah, he palpated my stomach & said there was nothing wrong with that, then told me to put shoes & socks back on. Then I thought it was a chance for me to say current symptoms & issues…& questions re hypermobility…& talk about dislocations…at that point he frowned at the computer screen & said…oh, & you’ve been to orthopaedics, too (think he thought I was a hyperchondriac!) I said yes, they did an MRI & found a haemangioma on my spine. Was almost comical when next he gave me a brochure on fibromyalgia….after having the disease so long, & the last rheumy gave me same brochure! No, I don’t think PMR was beneath him, he just didn’t believe I have it as it wasn’t diagnosed by him or a colleague, & because I had no symptoms (ha ha, bit different today)! He also said that everybody would love to be on steroids, get extra energy etc…I wanted to explain how steroids nearly ended our 40 year marriage, but by now I think I just wanted ‘out’! We’d decided to pay for me to see him, but I got an NHS appt just in time. Wonder if it would have been different? Sorry about your friend. I was so surprised he didn’t warn me about adrenal issues, no mention. Think that’s why I decided to post…so others can see what can happen. Atm, toughening out is causing trouble, as I wrote above. My husband is prepped as to what could happen. My hope is pinned solely on my GP now. S xx
If you were willing to pay him to be insulted - you haven't used that up. Why not find someone who will listen to you and get them onside with your lovely GP? You know of course who I'd suggest ...
If you are private - you can go anywhere, There is a nice campsite at Chertsey (with an excellent pub next door) ... And a cracking support group though you probably aren't going to need them.
Rod is good at liaising with GPs for shared care and always at the end of his email. But you are guaranteed he will give you a fair hearing. And no nonsense about PMR having to have raised markers or only lasting 3 years ...
Thanks…I hear you…but having had 3 appointments each week since January (half medical, plus mot, service etc car & motorhome, many repeated blood tests) I just want a couple of weeks of freedom, & taje stock of my position tbh! But, yes, as warmth comes, out goes the motorhome! S xx
You only have to go to Chertsey in person once. After that, appointments are by phone. Make sure you get his secretary Jody's number - he has stopped his excellent website for some reason and it can be hard to find the right number. Don't go through the online appointments.
If you can, take what happened to you further through PALS. We can't let these people get away with it. I had no idea about how vile docs could be until I came on this forum. Sweet innocence.
Thanks, I appreciate that, atm, I’m still OK handling PMR on my own, as I have done since diagnosed. My GP is PMR aware & very helpful indeed. I only needed a rheumy as I starting collecting ailments instead of stamps!! S x
Please do Pixix. You need someone who knows about this condition and all its associated complications, not a bumptious old school idiot. What inadequacy! You deserve better. Get to a grown up! ❤️
Thanks! Currently, I need an expert is hypermobility, Ehlers Danlos syndrome, vertigo, sciatica & trochanteric bursitis! I can handle polymyalgia & fibromyalgia OK, it’s the other stuff…& of course it all inter relates! S x
My rheumy says he is a specialist in Ehlers Danlos and I got rid of him due to his bedside manner and ignorance on PMR. If you are in London PM me for his name!
And my GP is good insofar as he does as I suggest (everything goes back to the good folk on this Forum. (I do give him hard copies of recent articles that are relevant.)
Another awful arrogant Rheumy we can add to our list...been there experienced that! Pay private if you have to, but hopefully GP will help from now on....Keep us posted....
I always thought that doctors often pressed people to get off pred too quickly because they were worried about the side effects but it seems that they think we’re all enjoying ourselves too much! Speechless! 🤦🏻♀️
Sad thing is I think he meant it, I think he thought I enjoy the buzz, the extra energy…I could have told him the amazing amount of awful side effects…I think I’ve had them all! But, for once, by then, I truly was short on words. S x
I had a strong feeling of deja vu reading your post, Pixix. Some months ago I saw a locum rheumatologist for my six month review who answered none of my prepared questions, ignored my concerns and told me my PMR had gone and that I no longer needed steroids. I was upset and angry and couldn't let it go. I wrote a letter to the rheumy department stating everything that was said, why I was dissatisfied and what I wanted to happen including that I wanted it written in my notes that I didn't want to see this person again, that I wanted another appointment with a rheumatologist who would listen to me and address the issues that were dismissed/ignored. The outcome was positive and in due course I had a far more satisfactory appointment.
It is your right to complain and you do have every right. The department should be made aware of your dissatisfaction for your own sake and for that of others. I'm not trying to push you do anything you aren't comfortable with you but just letting you know your rights which are explained here-england.nhs.uk/contact-us/c...
well done! Problem is, apart from the PMR & steroids issues, he has a point! All the inflammation trouble unconnected with PMR was 90% better after recent treatment from my GP! It also proved my GP’s diagnosis. Tbh, it’s a bit rude not to believe he’s right! So I may need to come off the steroids so he can ‘see the wood for the trees’! But to aim to do so so fast & not to have other treatment for other acute conditions & to tell me to ‘tough it out’…! Will wait & see what happens next! But thanks, I probably should, but, tbh, I don’t actually feel well enough to do so right now!! Thanks for sharing your experience, it helps to know I’m not alone! S xx
No pressure, Pixix. It's hard to summon up the physical and or mental energy to act when there's so much going on and no one would judge you for doing whatever is best for you. You have a good GP and that's a bonus. 🌸
Thanks! I just need to find out my doctor’s reaction to it all first, tbh. Then handle this flare & the tapering. Considering getting my hospital notes as Bee says it’s possible. You need to be well to handle being Sick, I reckon! S x
thanks very much. I have complete access to my GP records, & blood test results, x-Ray results, etc. I can see just what is written after each appointment, too. Tbh, I thought everybody did now. It’s just the hospital part that’s missing, & thank you, the link is great & shows me how to obtain that, too! S xx
When I told my GP that I refused to follow the rheumy advice to drop too quickly, he made a very half hearted attempt to suggest the same as the rheumy but very quickly gave in and I've had no prblems since.
I’m not refusing, I’d like to see if it’s possible. I’m very overweight & now learnt that the steroids cause more dislocations & subluxations in hypermobility. I’ve handled it on my own for 3 years & only needed doctors advice during one flare. To begin with my doctor phoned every week for four weeks to see if I was OK. I’ve had all the side effects of pred, I think, & I’d like to be free of them soon!! Time will tell! Thanks, & I’m glad you battled against advice & it turned out well for you! S x
thanks, Paddy. No sweat, glad it happened to me, tbh. Well, not glad, but I will deal with it, or work round it, I guess. Not happy with prospect of another spring & summer of constant pain & sickness, but will take each day as it comes!! S xx
thanks….the timing isn’t quite there yet, plus I don’t need help with PMR…though my guess is that he would be fully conversant with all my various ‘issues’! As Bee says, I need a short break now, concentrate on handling this flare & the tapering! I didn’t expect to get so much lovely attention & comments, it’s amazing! Now I can read his letter to my GP I shall do more preparation! But the idea of Rod Hughes being there is a comfort, for sure! Thanks again, S xx
He isn't "just" PMR, no rheumy is really, but he does look at the whole picture which is where you need to start. If he can't help, he will know where to direct you. And that is exactly what that chump failed to do.
Thanks…yes, I realise he would…I think some members of the forum think I need PMR help…but I can get that here & from my GP…but yes, somebody else apart from my poor overworked GP who keeps having to give me hour long appointments, needs to be involved!! S xx
And preferably someone who treats his patients as intelligent adults, not tick boxes ...
At the end of my appointment last Monday Christian said how he enjoyed being able to discuss PMR research with a patient who understoof it - I'd told him I had read his T2T paper. "What - already" he said! It had been out for 4 days by then. His predecessor who appointed him used to print off new papers for me!
um….you know I have a huge weakness for Italian gelato….mela verde, frutti di bosco, pompelmo rosso….oh yes, best part of my Italian language, being able to reel off the flavours (& yes, no problem in German speaking Merano, either, or I guess I shouldn’t call it Merano!) Best ever? Chocolate mousse ice cream in Firenze was cool. Fig…I only discovered it in Lecce 4 years ago….ah, the memories!! Oh dear, got carried away there…whoops! S xx
They very inconsiderately were closed over the winter as Himself needed his veins done and couldn't stand. I so looked forward to the advent flavours - spekulatius, apple and cinnamon, gluewein, there are others ... I love fig, panna cotta, crema catalana (creme brulee!)
That should be illegal! Gluhwein, that’s an interesting one,! Apple & cinnamon, oh, yes! Oh, I agree…pannage cotta & cream catalana…perfect choices, especially in the evening, while the fruit flavours are ace at the end of a walk or cycle (we did two touring cycles of Umbria & Tuscany…every village perched on top of a hill, & needed a lot of ice cream to make it through..30 degrees! S x
No! That’s plain daft! When on hols in Italy we usually go out in the evening & have just one course (which confuses them, naturally, as I would like a pasta course as my ‘main’ course). Then we go & have ice cream at the gelateria for dessert!! This morning I’d like lime…best I’ve found is by the gates into the city at Dubrovnik…but made by an Italian! S x
Gosh ! How awful and you'd prepared so well too.Terribly rude , and very outdated in knowledge.
The efforts o f assessing your toe touching and elbow bending were as far as they were willing to go ( or the bounds of their limited knowledge) in testing your Hypermobility. This Rheumy appears to be one of the many outdated types in the NHS whom belief a diagnosis of Hypermobility is a confirmation of Ehlers Danlos Syndrome because they are exactly the same which isn't really the case. Except they do both have one thing in common , they get worse with the use of steroids.
His way of discussing your need to reduce off steroids was rude and blaming you for wanting to stay on them for how they make you feel rather than because you also have another health issue that it treats is disgusting and when you are up to it , and you have a copy of their report , a complaint to the Chief Exec rather than PALS is worthwhile.
Unfortunately, as I know from the yoyoing torture of trying to treat both GCA and not make my EDS worse they do want you off steroids as quickly as is feasible even if it means the hell of yoyoing because they seem to think you can miraculously survive GCA or PMR without more than the shortest treatment because they are desperate to prevent the extra injuries, dislocations , vascular issues and even looser joints that the steroids cause .
This is something he should have explained properly and tried to offer you alternatives to help make the taper easier and control any effect on the PMR.
But of course , he'd have to also agree that you had both Hypermobility and Fibro , and PMR too to feel it necessary to be more helpful in reducing the problems of a fast taper ,,and that Rheumy obviously doesn't believe you are recovering from PMR despite all the evidence to the contrary.
He should have also discussed other options for the steroid injection for your Bursitis, although any options are limited and hit and miss , and most of those aren't available on the NHS.
It's one of the many , many issues of having Generalized Hypermobility Syndrome or a type of EDS , steroid use will make them much worse , local anaesthetic seldom works properly, so apart from the usual NSAIDs to reduce inflammation there aren't many options to deal with the pain. It's always a matter of having to judge which issue is more likely to cause more harm , and to work out whether the benefits outweigh the risks throughout your treatments.
Of course , we come to the crux of the matter ,and why your appointment was short and it took him 30 minutes to see you. That Rheumy did not know enough about the illnesses your suffer from , let alone treating those conditions simultaneously. They read your notes for the first time going in the room then spent 20 minutes scratching their head , getting annoyed , potentially trying to get advice from a friend or on the phone trying to get another Rheumy to take over from them. Finally , they managed to see you , do the basics , and blame you for their feeling of ineptitude. They didn't do much for the PMR because they wouldn't want to commit to saying they don't think you have it and then be proved wrong. Finally , any Consultant that relies on the basic handouts without a proper verbal explanation proves their lack of experience in treating the issues first hand . The one thing that his rudeness proves , and should help you raise a smile about this dismal issue , is that you probably scared him far more than he scared you!
Feel free to message me to chat further.
I doubt that the GP will have heard anything by your appointment to help their decision so it will probably be between you and them.
It sounds like you may want to put the benefits ahead of the risks when it comes to the Bursitis injection on this occasion ,,and then it may be down to research and an action plan between you both to try and reduce incidents or find alternative options for treatment.
If you go for the injection reduce your physical activity or exercise for a week to reduce the risk of increased subluxations .
Your GP can do your Hypermobility Ehlers Danlos assessment and sign it , this does not require a Consultant. If they feel you have Type 3 Hypermobile EDS and no indication of other types that form is all that they need to confirm the diagnosis and add it as EDS on your notes.
If they think there is a possibility of other types they can also send you for the Genetics Referral , it's only whether they will budget it that is an issue.
Your GP may need to help you more as you taper quickly. I hate to say this but with Fibro and EDS causing nerve pain and Autonomic symptoms the waking of the Adrenals and various types of joint pain from each condition means that the symptoms are very intense . The added Stress will have also added to the chance of Migraines , common as you know with Fibro , so you are right to consider taking the time to have a break , rest , relax and recoup your strength before you try again . The last thing you need is a flare of anything because of the stress of trying to get well!
And yes , you can contact the hospital records service and request all the notes you want . On paper or on memory stick or disc , including x-rays , scans and their reports . It can be free or a nominal charge and can take about ten days depending on the size of the Tome! Mine was as big as War and Peace and included as much drama.
What a helpful reply Bee! It made a great and useful read for all of us. My image of this consultant is now a cartoon with sweat pouring off his fevered brow, ringing round for help and dreading Pixix’s arrival!
Magic!! I wish I could draw. Wonderful. I’m due to see him again in 8 months time, but I think he said it would be a phone call, so I’d have to imagine the pacing…& it will be just to announce the CRP & cortisol test results, I guess! Thanks, I’m smiling! S x
Is extra-corporeal sound wave therapy available through the NHS anywhere? It is very good for bursitis - an adapted version for soft tissue of the lithoptripsy which is used for kidney stones.
It's hit and miss as to availability as far as I know , more to do with having the staff trained to do it than the equipment as I spotted the sound and light therapy room in the hall of physio some time back but nobody goes near it for that reason. Good idea though , that's an option Pixix could ask about for the future at the GP appointment on Friday. If she is in a large area were staff in the hospital may have had the training it would be worth trying.
interesting! I would probably have to travel a bit further, as we are truly rural here in the forest, but I’m mobile (behind the wheel of a car!) happy to consider anything, & added it to tomorrow’s notes…good job it’s a 30 minutes appointment!! S xx
Brilliant reply, and thanks for taking so much time to do it, I really appreciate it. He has now written to my doctor, I found the letter in my medical notes last night. He hasn’t copied me (I was copied on the last two consultants letters, but they weren’t rheumies, one orthopaedics & one neurology). I wore my thumb splints to the appt as I didn’t want to get scolded for not wearing them!! When he did the hypermobility checks, he asked me if I could touch my arm with my thumb. I replied yes, I can, but with thumb joints full of arthritis it’s now painful & stiff)…he said not to bother to remove splints! He also neglected to try the fifth finger raise to 90 degrees, which my fingers do with ease! Therefore, he reported to my GP that I clearly have hypermobility, but with a Beighton score of only 3. My reading of it would include two thumbs, & two fifth fingers which gives 7…google gives one point to each side of the body. Plus he only tried one elbow, & I’m not sure he could see my knees through thick black trousers!! No mention of EDS at all. Not a whisper. I had all the info you’d sent to me, plus other notes…eg on the occasion of hand surgery some years back they took out the stitches & the wound hadn’t healed together at all…I read that’s something that occurs with EDS?! He virtually talked over the sentence I spluttered re subluxations & dislocations…but I had to try to get it in, as Dr & I had agreed I could talk to consultant about that. I have migraines in the gene dept…my Mum, dreadful 4 day ones. In my life I’ve had about 20 classic ones. I had one about 4 weeks ago, but if I treat it quickly, when I can only see half a page of text, eg, then I can just get a bad headache & nausea. Yes, I did feel he had been sitting there reading the war & peace of my hospital records, for sure, eg he mentioned to me that he’d read I’d been seen in orthopaedics. But I was trying for a short post, & trying to keep EDS out of it as it’s a PMR forum. But, you know, others may find it interesting…& it’s all in the sane ‘medical field’, I think! I went through each of the EDS symptoms with my GP last time, & he was aware of it. When I ended my last chat to him I asked directly if he thought I had RA. He said he did (I think he was trying not to have to be the bearer of bad news), but then he said that the consultant may think it’s EDS. I take your point re steroids & hypermobility & dislocations…I didn’t know that, & it would explain why I’m getting more problems the longer I take steroids. Many thanks for that!! I am keen to get the bursitis injection for two reasons…first it may solve one issue out if about ten, that would be a major victory after years of suffering (pain mainly unconnected to fibro or PMR), & two because I have acute sciatica on the other side, so sleep is impossible! Last night the sciatica was dreadful, so bad to sleep on bursitis side, which this morning is appalling! (Sleep on back, snore & wake myself up each time I try…sleep on front…too well endowed for that to be comfortable!) As you can imagine, I’ve spent even more time reading up EDS now, & I truly don’t match the other types, just the ‘common’ hypermobility variety! The only thing my GP said ‘against’ the idea of EDS was, Ah part from the back of my hands, he doesn’t think I have enough loose skin (not tested by rheumy, as EDS didn’t enter the equation!) I have printed the letter he wrote to my GP, made notes on it, & prepared as well as poss for Friday’s meeting with my doctor. I have no idea how he will react to it all. I think I will check first if he plays golf with the rheumy, or knows him personally!!!!! I almost smiled when he was virtually pacing the floor during the ‘no more steroids’ section, but was feverishly trying to find a way to handle the situation! Given more time I coukd have achieved it! But short of saying I don’t want you to check my heart, lungs, stomach or test yet again for fibro, I had no hope!! Thanks again for a wonderful, well thought & supportive reply. I’ve replied in open forum, as a) I’m very open on the subject of my medical matters & b) I can see others are gaining from it all, which is great!! But, a final word…I actually needed no medical help re my polymyalgia. It was, until two days ago, under excellent control. I’d learnt a lesson after last years bad flare, & with gp approval, I was on a good, slow taper, with no deadlines. BUT I didn’t know about the effect of steroids on other ailments. Thanks, Bee, that was great! S xx
Well you have the questionnaire there for him to do and the list of measurements which he will see doesn't need the skin to stretch like you are Elastic Girl.The skin stretch does change with age too , so if you are close to the minimum you will have had the stretch in younger years , the hand stretch is the smallest and most people in the know realise that getting the measurements on most of the other body parts is enough. Skin fragility , slow healing , very easy bruising and hyperreaction to needles, all get there own points and you get a certain amount of points each section , you don't have to score on everything , and are unlikely to if you have the Hypermobility Type , if you score on certain things that's what puts you in the Classic Brackets which is when you get the EDS classification but are then more likely to need to go for Genetics to see if they can confirm a different type.
It's worth checking or remembering if you can do the Walker and Steinberg hand tests too , as these are mentioned in classification, as many people have positive test results on these tests originally created for Marfan's testing. Google them you've probably done them at some point but it might be harder now with arthritis.
Proves the Rheumy also has no idea about how the classification works. The question is for each Beighton point , Can you or could you ever do the following actions , in which case he shouldn't have scored you as 3 but as 7 as you have said on the official notes.
You only need to be able to give evidence of 5 past 50 years too , again because of the possible effects of age or arthritis on the results.
Realistically, your GP can finish the EDS diagnosis for you , and as most Rheumies Departments in the UK are resistant to doing appointments for EDS or Fibro it's the best way forward. The only reason you really need the Rheumy involved is if you want a referral to one of the three CoE s for EDS for testing as they will only take Consultant referrals now because , surprise , surprise , so many people have an EDS or Hypermobility diagnosis and need more help because they can't get it locally. You can , however, get an intial private appointment with the EDS CoEs and their Consultants are also experienced in Dysautonomia testing and have an understanding of how EDS and Hypermobility effect the course of recovery of other chronic conditions.
To be honest , I haven't seen a local Rheumy since before my GCA , EDS , Dysautonomia and Fibro diagnosis despite them having repeated requests from the Rheumatologists I did see out of area, and all of my other Consultants. They are hugely overstretched in North Wales with only one full time Senior Consultant across four hospitals since before COVID. But the main reason is that they see the list of issues and keep carefully pushing my file to one side (probably in the fear that I may pop out of the page and ask them a question) .
When my brilliant Rheumatologist Physio asked for some advice the Consultant apparently said , " We wouldn't have a xxxxxxx clue where to start there you know more about that than us , are WE seeing her?"
" You're meant to be " , was his response . Apparently they said a quiet, " Oh!" and quickly shuffled away.
With that knowledge I've not even bothered to go through the stress of pushing it since , especially as my new GP finally did the EDS tests and sent me for the Genetics Referral that everyone else was pushing responsibility to do on other Departments.
I don't need unknowledgeable people getting involved now and potentially mucking up what has been a hard fought for and very precarious treatment regime over many years.
It does make me less anxious to realise that the attitude they often have when I'm new is usually more to do with them being terrified of trying to deal with me ( even when they don't know I know a lot) . I'm not surprised the last time they took my records into a Consultant I noticed they brought it on a trolley it was too big to carry!
Message me whenever you need , or if you want more pointers for tomorrow, hugs , Bee
I don't know if you did it this time, but the next time you go in to see the rheumy, make sure to take your husband with you. That way I think you'll find the rheumy will be much more pleasant to deal with.
My wife has suffered at the hands of one of the GPs at our practice several times, when he's been rude and thoroughly unprofessional. In the end she asked me to accompany her. What a difference? All of a sudden he was all ears and smiles, and couldn't do enough to allay any fears she may have about her health.
It seems to be a truism that male doctors in particular don't take women seriously, but they do take men seriously, so get your man on your side and make sure to go in mob handed. I think you'll find the rheumy won't be half as rude as he has been when you've been there on your own.
No, I didn’t take him in, & I don’t regret that. I’m happy ‘solo’, tbh. But I’m sorry your wife had a bad experience, that’s lousy. Thanks for your comments, S x
It is something often discussed , so that it appears that Male doctors are more rude or dismissive to female patients than they would be for the men , but over the last few years I do wonder whether it is a matter of gender , but actually just that they can get away with certain behaviour or certain things if there are no witnesses , or if the patient is quiet and nervous.In years gone by , when I was less knowledgeable I got similar rudeness and poor treatment from either male of female doctors , and nurses , especially if I asked a question. In fact , over the years , I would say I've received far more pithy or rude and dismissive comments from women rather than men , whom then became all smiles if I took someone in with me on the next occasion.
Another issue that makes it appear more of a gender issue is that women are more proactive about getting health appointments than men and are still more likely to see a male doctor than a female in certain areas of care.
And , men are less likely to talk about their medical treatment with other people even their spouses or best friends , especially if they feel like things went wrong or they were embarrassed. Although from reading comments on various forums they do seem to hit upon the same treatment from bad professionals .
I sometimes also get concerned about the genial doctor " act" to male patients. That friendly demeanour often hides as much poor information and care giving. It's just a more polite way of dismissing someone's concerns and usually used not just between men , but between doctors in general with patients that they know are confident enough to speak up in an appointment.
I agree with you that it can be wise to take an advocate into an appointment for support , especially if you have had a bad experience with the doctor or nurse before , but I think that's important for any patient , male or female, whom is shy , nervous or suffers with forgetfulness in stress situations .
My worst and rudest treatment was from a female nurse whom refused to believe I was allergic to Codeine and spoke and treated me so poorly despite my insistence that I finally took it to prove the issue. I was just happy that she was still there for me to projectile vomit on when the drug did what it does to my insides. It took cleaning up your own mistakes to a whole new level!
The worst experience I (and OH) have ever had was from a female doctor here during the last 6 months of his life. She refused to admit him on the grounds I had been told repeatedly I needed a live in carer (it had been half suggested once and not by her, our flat has 3 rooms and when we needed a hospital bed even the nurses worried and described it as "super-mini") so it was my fault, she blocked me visiting him during a 10 day stay in hospital when he fulfilled the exceptions set by the Health Board during Covid for 3 out of 5 grounds, and when I was admitted as an emergency with a heart rate of 190 she stopped my heart medication as "it isn't doing anything" and told me to "avoid stress" on the Sunday before he died on the Friday. I only have to meet her in the hospital and I have flash-backs. Everyone else is absolutely lovely. She is useless as a doctor too - so arrogant "I also have experience" she told me.
ooooooh! That’s me trying not to type words that aren’t allowed here, I knew bits of what you said from previous posts, but didn’t realise quite how badly you were treated. I’m so sorry, & wonder if you put in an official complaint! I think that highlights an issue…I, too, have seen some really excellent consultants in different disciplines, at our local hospital, but it only takes one to make life difficult, as your experiences show. Hugs, S xx
That is awful , I bet you were dying to respond that as she was the most Stress in your life that perhaps you should avoid her.I found it very hard coping with trying to organise the care for my Mum when she was in hospital before her death from hepatic encephalopathy during COVID by phone , especially as nobody seemed to note down or take notice of what I was saying because it wasn't face to face.
The worst moment was being told that a random nurse with no actual psychological training could judge how compus mentis my Mum than me doing a ten minute questionnaire half an hour after I'd been on the phone with her trying to explain what her buzzer was because she couldn't work out how to put down the phone. Apparently she was fine enough to discharge to a hospital care placement. She was back in five days later in a catatonic state and never recovered.
So I can completely empathise with just how horrible your experience must have been.
I just looked at her and she said "you can continue as you are if you wish" - too right! Trouble was it was Sunday and she had duty. No choice.
Though I'm fairly sure it was due to my encounter on the phone the previous day with the duty GP who refused to come out to OH and if he was to prescribe anything I had to get to the practice in another village complete with the documentation within the next half an hour! Why? Because he didn't know the patient and (wait for it) HE was under stress!!!!! It is universally agreed by the local doctors he has no business as a GP. He'd run the sports medicine service, only dealt with young and healthy athletes, but the funding was cut and he chose to be a GP. Reha would have been far more suitable.
OH was already on Palliative Care's list, the previous day, and I had asked what happened over the weekend - it will all be on the computer they assured me. Just the wrong doctor - had it been one of the others, they'd have been there. We got more help from the Emergency Doctor and co who came out to me the next morning.
Flipping heck , and they wonder why so many carers end up with health issues after looking after a loved one.Biligerence, Bureaucracy and Stubbornly bloody minded jobsworths , that's why!
( By the way, this might raise a smile , you know my issues with autocorrect, my tablet tried to change biligerence to Postman , and write Illingsworth instead of Jobsworth !
I've never even been to Illingsworth, let alone had to use it in a message.... But I've been known to type Jobsworth far too often!!!)
Now was that IllingSworth or Illingworth? Didn't know illingworth was a place - just a person, Illingsworth is a hip-hop dude, Illingworth a Yorkshire, Leicestershire and England cricketer ...
I hadn’t read your reply, sorry, I repeated it!! Just can’t remember his Christian name! Derek? No, Ray, reminds Google! He was a daily household name when I was young! S x
Oh, yes, I’d forgotten him, he was great! Dad used to play for Stroud, the town where I was born. He ran his own company & everything stopped for cricket practice at noon every Friday!! An employee told me at Dads funeral that they would drop catches & do all they could to keep Dad batting as it made for a lovely long lunch hour!! Just updated this in a reply to Bee re this afternoon’s doctors appointment…I won’t make it another post, but will do an update when it actually happens!! Thanks for your help & support, S xx
I’ve seen quite a few post recently, where it’s a second post in same subject as first, but not linked…sometimes to say thank you, or to give a follow up. I thought perhaps I didn’t understand the system & it’s what you should do! I find it strange, as when you only see the second one you have no idea what it’s on about!! (Yes I know you can easily look at the persons ‘account’ & find first post, but….!) S xx
Oh yes - that's usually people wanting to reply to everyone who helped them in their first thread. In terms of threads - unless members "Save" every thred they won't be notified of new replies unless they are to them in person. DL and I "Save" every thread so are notified of everything ...
Certainly not the whole day….I usually put aside slots during the day depending on what I’m doing. Many replies don’t need any attention-and if they are brief you scan on email notification… and delete.
I leave the more difficult medically involved ones to PMRpro as she has the expertise I don’t, and many of my replies contain links to previously written and/or saved posts, so just need to retrieve…and many of my replies are short- don’t do War and Peace.
I see it almost as a part time job, and I don’t want others to struggle as I did early days to get a diagnosis - and if I didn’t want to do it, I wouldn’t.
Now that isn’t a good mental picture for me this morning, but made me smile! I agree, it’s horses for courses. I am neither shy or retiring, I was a European director in a pharmaceutical based company which was male driven! I was the only woman in the regular 14 people meetings, held in different country every quarter. That lead me to appear at every medical meeting with notes, a list…I actually did two copies at this last one, so a copy could go into the notes, if required…ah, just remembered, didn’t actually get the folder out of the bag!! I’ve printed the questionnaire & mentally filled it in (will fill in one copy to take with me this afternoon, & a blank firm for my GP! I see even those lumpy bits on my feet (I used to call them PPP) give me a point on the EDS score!! A consultant once asked me if she could photograph them & put them in a technical paper as they were amazing!! Have a nice day…spent yesterday afternoon with bad bout of vertigo & anti sickness pills…but will try not to projectile vomit over my ‘nice’ doctor! S xx
Oh Pixix I REALLY feel for you! We wait so long for these appointments and hope against hope the rheumy will be kind, comforting and knowledgeable, that they will have the silver bullet to make us better - then THIS!!!!
I had a very simialr experience which if you look up my posts you will see under "Rudest Rheumy EVER" or some such title. I had to pay nearly $500 to be told I didn't even have PMR because it doesn't last for longer than 2 years . OMG what Noah's Ark classroom do these so called specialists train in?
Now I rely on this forum, my lovely GP who correctly diagnosed me nearly 6 years ago, Lovely long phone chats with my brother in Wales (I'm in Tasmania) who also has PMR and my own common sense.
Thanks! I did try a search, but it brought too many replies….I will search it out & im sorry you had a bad experience. Sounds as if yours & mine (rheumies) woukd get on well together! Plus you actually parted with good money…I escaped that by a whisper & sheer good luck! (I have a friend in Tasmania & my late brother loved going there from his home in New South Wales). They do seem to attach the ‘no longer than 2 years’ label onto PMR, I’ve read that in a lot of posts. Hope you continue to avoid the rheumy & good to know you’re OK. S x
Vertigo is horrible - had a few bouts not long ago, but fortunately they resolved themselves - with a few exercise. Used this one - bit brutal the first few times - but does get better - and there are plenty of others-
dreadful. I’ve tried all the exercises, the manoeuvres according to Brandt Daroff & Epley etc etc! Guess I had about 3 bouts in past 9 months, one so bad I just stayed in bed, rigid, not moving an inch!! Today, I suddenly realised I had it & sat down, stayed incredibly still…& wasn’t sick!! David fetched my tablets, & now I’m semi functioning again! Doctor told me I must carry the tablets everywhere, but I forget after a while without it, & get lulled into a false sense of security!! I hate it, though, so much! Remembering not to look right or left this afternoon & stay glued to the chair, whilst I research with Bee’s kind help! I can’t believe what an amazing response there has been today….& I’m glad to say that it seems to have helped a few others, too!! Thanks, S xx
Just read your post, that’s appalling. I think it’s easy, after the event to say how we coukd have acted, but at the time part of you think it will get better, & part of you thinks this is the only chance to get help (especially here, with long waiting lists…eg my neurology appointment (bad hand & arm tremor) is for July 2024. I hope you manage to find somebody else to see, but ne with knowledge & who actually cares, too. Really sorry you had to suffer that, it just shouldn’t happen. Sending hugs all the way down under, S xx
goodness me, isn’t it enough that we have all the complicated health issues, without having to deal with obnoxious consultants. I hope you get some good support from your GP.
thanks, I’ve had nothing but good results re diagnosis & treatment from my doctor, so I’m hopeful, but will be happier when that appointment is over!! S x
Pixix, do hope all goes well with your Dr's appointment. Let us know how you get on. It's so unfair that you've had to go through this experience at this time. Loads of helpful advice though on this great support forum, for which I daily thank God!
Thanks, I will. I have plenty of goodwill & well wishers around me, that’s half the battle! Sadly (in a way) I was probably the best I’ve been in a year when I went for my rheumy appointment, & he could only treat what he could see!! S x
Apparently, we all love being on steroids, according Pixix's useless Rheumie. It makes my blood boil reading about this situation. I'm sorry but I wish the worst for him and that is so unlike me. I never think like that but he needs a dose of what we all go through to even produce an iota of emotional intelligence.😡
Oh, no, please don’t…who knows, he may have been having a really bad day, or have major problems. He did contain his anger, really, I just felt it through his pacing! If he’d shouted & shouted at me it would have been easier. I would have just left! He was obviously annoyed that I was given yet another ‘new patient’ appointment & that’s not surprising as there’s a year long wait there, just for a follow up one!! I believe he’s the most popular one in his department, a nurse told me when I phoned to check my referral was still kin the system’! S x
Pixix, sorry, no I don't really wish bad things for your rheumie. It's just that as I read through the thread, I began to feel incensed because it feels like so often, as patients, we are not being heard or treated in a grown up manner (I feel similarly about the rheumie that I have seen). It feels frustrating but I wouldn't wish anyone to go through what so many of us suffer with PMR and other conditions.🙂
Oh, I do realise that!! Sorry! I agree, I see others having problems, & realise this seems an unusual field of medicine, somehow! I’ve seen neurologists, gynaecologists, orthopaedics, & other ‘ists, but never seen anything like the number of rheumie issues! I agree, somehow it shouldn’t go on happening, time & time again…S x
Well you’ve had excellent advice so when you feel ready do give Rod Hughes a chance. You can go private for first consultation and then if necessary he can refer you to his NHS list. He is never rude, very understanding and professional. I would highly recommend him. 💐
Thanks! Rod Hughes sounds excellent. I have to consider all options, my favourite is that my GP handles it all, tbh! I am lucky as I don’t need to (& have never needed) to see a rheumy about my PMR. I find it the most straightforward of my um…I think it’s 8 or 9 medical conditions currently!! Just watching to see how bad this flare gets…but it’s not long to my appointment tomorrow now! S x
I am sorry to hear of your experience , sadly you are not on your own ! I like you had prepared notes what a waste of time that was ! The man hardly looked up from his desk the whole time i was there and when he did it was only to say i few weak comments. I was so ill the day i went to see him , in awful pain and limping badly. That i just wanted to get out of there , he said about making another app. I said i would but certainly not with him ! I told him he had the worst bedside manner i had ever known . It was worth it to see the look on his face as i walked out.Its so bad when you really want to chat about it. I have been on Pred about 4 years, i go at my own pace trying to get off the Bl...........dy things. I am now awaiting a new hip and i have to say i agree about Pred masking things. Hope you find a kinder rhuemy . Best wishes Viv🌷
Well I bet that finally made him look up and take notice.Well done to you for feeling brave enough to call him out , especially as you were feeling so rotten.
I wish I'd been a fly on the wall , take care , Bee
I have no words, other than I totally feel for you. We put so much store in seeing these people only to be massively let down.If you have the strength I would absolutely complain. But understand that now might not be the right time.
Unlike you, I have had more Rheumy appointments than you can shake a stick at. In fact, in the past two years, I would wager that I have had all the Rheumy appointments in the whole Country and every one of them a complete waste of the Rheumy's time and mine. For those of you in the UK that remember the TV program "are you being served", I could hear the old chap saying "you've all done very well" at the end of each appointment and that was about it. It makes we wonder if becoming a Rheumatologist is a bit like taking media studies or origami at Uni, you get a certificate but nothing else.
Depends on the rheumy! I know more than half a dozen personally who are totally dedicated to their patients - coincidentally, their special subject is PMR/GCA.
Brilliant! Sorry, but it is! Made me laugh. I’m sorry you’re not getting any help, though, that’s seriously rotten. One thing, though, at least if you study origami at Uni, your certificate arrives folded into a very pretty flamingo!! And yes, I remember the young Mr Grace, about 90, saying they’d all done well. Hope you get on OK, & maybe find a good ‘un?! Thanks, S x
My heart goes out to you. Sounds like "my" rheumy. I've seen her twice since May '22 and now when I really need a consult, she's gone underground. I think she knows very little about PMR/GCA. Hoping it will work out with you. Your GP sounds like an absolute keeper. I don't have one at this time (long story). Began corresponding with my former Neurologist (who diagnosed me with PMR in Jan. '22). I've asked his help in reaching out to this Rheumy, but nothing yet. Last night sent him a couple of links, one being Pro's T2T Paper, and another "Clinical manifestations and diagnosis of polymyalgia rheumatica".
I'm hoping these don't "insult his intelligence" because that's certainly not the intent, he's really a great guy. I found them very enlighting because I'm going through a place right now where it's possibly not PMR, but PMR-like symptoms and perhaps something else and no way to get the bigger picture at this point. I'm unsure as to where you live, but I reside in Halifax, NS, Canada and besides there being a lack of good medicare (mind you it is "free"), there is a lack of knowledge on these particular diseases and many others I am sure.
hi! I am in sackville, nb and was fortunate enough to have a good husband/wife family practice accept me into their practice, in town, after only a three year wait. I hope you find some good physicians soon. It is a shame that there aren’t enough medical professionals in the maritimes. Just a shame. X
hi, thanks from Old England, in the south part in the countryside! That’s interesting, & don’t forget, as I’m finding out, quite often it can be PMR + another problem, especially a 2nd, 3rd, 4th autoimmune type disease. And yes, my GP stays right here…no emigrating to Tassie for him! I hope your neurologist is able to point your rheumy in the right direction…that’s just too strange! S x
I can't add to what others have said in terms of support for you. As far as the rheumy is concerned, nothing remotely polite enters my mind. I hope you can reach the stage where you are able to put forward a complaint, but fully understand not wanting to think about the experience would be a priority, for the sake of sanity. Hope you will be planning the route to Chertsey!!
Probably…Chertsey…but will see what unfolds yet…happybto do without a consultant, if it’s feasible, but yes, Cherysey, our motorhome & the pub PMR Pro mentioned are on the horizon! S x
what a pig but you know Doctors are very important people compared to us lesser mortals. Should he ever think we pay his wages it might come as a shock 😕
Thanks, that’s great, we pay your wages would be good for anybody who isn’t getting good treatment! But I don’t think he was as bad as all that, just frustrated, angry that I’d been given a long appointment, & then that he could find nothing as I’d had such a good reaction to the recent depo medrone injection!! S xx
Thanks to everyone who has joined in this very lengthy thread! It’s been wonderful & truly raised my spirits! In the Navy we had an Officer at one base who we all found very difficult…his personal Steward got hold of a pair of his underpants one day, & they were hoisted up the flagpole the next morning instead of the Union Jack!! Seriously, though, it does show that many are having a problem, & that is sad. Just a huge ‘thanks’ & ‘hugs’ to you ALL! S xxx😀
As an aside, I wonder if we have a "Rod Hughes" here in America. There must be cutting edge folks here but I don't know of them. This was a wonderful, informative series of posts! I always learn so much on this forum.
I bet you have…why not Google it & see who, in the USA has written technical papers on this subject area, & maybe read some of the bios on the consultants in your State, & maybe surrounding states. They usually have specific interests as well as a wide range, eg a new doctor in our practice will see every & any patient, but has a particular interest in paediatrics! Doesn’t mean she will just see kids, but if I had a kid with a difficult case I’d go to her, for sure! I’m very very surprised this has sparked so much interest & comments, tbh. I’m glad it’s been useful for others to read, & all the support shown has been great..& varied! Good luck finding a Rod Hughes…sadly, I guess this means you’ve had a hard time finding the right ‘help’! S xx
Just read all this, sorry I'm catching up with emails. Your rheumy sounds like mine! They must have read the same textbook. A friend used to work as a medical secretary. She said that most consultants were rude, supercilious and arrogant - the few that weren't were lovely! We need to bring them back down to our level somehow, this can't go on.
I’ve heard that this is more common than I thought! Sorry you’ve had problems…I’ve met some nice consultants in my time…& one who was struck off at the Old Bailey…after I was a patient of his for two years! Interesting reason to need a new consultant! S x
Mine told me off for being 5 minutes late (problems parking). Then the following appointment he was 35 mins late - like yours, sitting in his room, no other patients. He didn't apologise, but the accompanying nurse did.
Thanks, that’s very interesting, especially the ‘wait part’! How unpleasant, to have trouble parking, then told off for just 5 minutes late! In my experience, (not rheumy, I have little experience there) most aren’t on time, but onky apologise if it’s running more than twenty minutes late. Can’t believe you were told off for 5 minutes! S x
I really dislike my rheumy. He doesn't listen to me, asks me the same questions every time I see him e.g. can you lift your arms above your head? My PMR has never affected my arms and I keep telling him that! I think he has a script he follows for his patients so he doesn't have to read their notes. Then he tells me off for taking too long to taper my steroids when I have always followed instructions. "You've been on them for 18 months now, you really need to be off them in 2 years so there's not long left!"
oh, yes…she could be helping so many patients throughout the whole world. Just one document which people could take to their rheumy that says it doesn’t just last 2 years, tapering is difficult & slow, some people need to stay on a low dose for a long time, it’s poss to have it at a younger age than 80 (sarcasm), that most people really don’t want to be on steroids, & hate them & the side effects!! Imagine if every rheumy understood & believed in the slow taper, just how wonderful that would be!! S xx
Actually, the T2T paper I put up the other day, when read properly, does cover pretty much all that. Christian said he had no real problem getting it past the Europeans but the Americans were very sceptical. Anyone would think it wasn't written in English ...
Great news, I haven’t had time to look at it yet…too many medical appointments & trying to decorate our bedroom! Brain scan on Monday, but I don’t expect them to find any contents! Rugby tomorrow, naturally! Thanks, S xx
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Upcoming rheumy appointment 
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1st rheumy appt.
Still on 50 mg coz no rheumy. 
