Arrogant Rheumatologists

Had the most frustrating appointment with my Consultant. I have had a lot of additional pressures in the last 6 months. Second Cochlar implant and business trip to Australia. Slightly Increased CRP during this time but currently after jet lag and an exhausting trip I have felt I am having a flare. Morning I have serious stiff neck and pain etc. Walked yesterday like I was 90 and did at times whilst away. Heavens it hurt . My Consultant tells me this is no more than aches and pains of old age. told him I am very sensitive to hard beds and chairs and that was a problem whilst away but again in his opinion it is old age nothing to do with PMR. Pressing me to reduce steroids currently on 10 and rubbished the Bristol report reminding me that he was the doctor and told me that these forums are not necessarily helpful. Seems to forget I am the patient and I know what the pain is and what help I need. Last time I see him that is for sure ? Feel very angry . Thank heavens for the forum

20 Replies

  • I can understand your frustration and annoyance. All the more distressing because this is the person who is supposed to be helping you heal. But you'll do yourself no favours holding this anger, so let it go. Deep breath and move on.... And follow through on your decision not to return to him. He's not good for you! (Once you are settled with a better doctor you might want to do this fellow a favour and let him know why you left so perhaps he'll learn and treat others better?)

  • You are so right

  • I'm afraid I can see the consultant's point of view as well, tho' I do sympathise with you ! IF you have a medical condition you HAVE to accept that YOUR input in getting yourself better does count ! You cannot expect the medical profession to work miracles with their drugs, & you cannot expect to be able to carry on just as you did before the PMR onset without adapting your lifestyle & helping your body & the drugs to combat the condition !! Remember too that the side effects of drugs sometimes make one feel stressed & impatient & unreasonable ! Hopefully, together you'll be able to send PMR into remission, soon !

  • The post I read immediately before yours was this:

    Just recently there seems to have been a big surge in posts about poor communication and empathy on the part of rheumatologists in particular.

    He obviously needs reminding that the Bristol paper is co-written by one of the top PMR rheumies in the UK and that while forums in general may provide all sorts of less reliable information - in this case it is information stemming from a charity which is very active in the improvement of awareness of the diseases. Does he also diss ArthritisUK when other patients refer to them?

  • That really is a great one.  Thank you PMRPro. I might make a complaint after all.   I sure to include a copy of this link!  :-)  

  • My dr was very sceptical when I went with second flare up, he said I mustn't self diagnose as I might have something else. Luckily I had some prednisoline in drawer and was taking 15mg to kill pain before I ventured into surgery. On second visit he admitted I was first case of pmr he had seen.

    My thought now is how many has he misdiagnosed poor sods?!!!

  • Priceless isn't it really - for 5 years I went to the doctor with textbook PMR symptoms, the only thing missing was the raised ESR/CRP. PMR is just the name given to the constellation of symptoms and they CAN be due to a lot of really rather unpleasant things. They were never looked for in my case other than taking a few mls of blood.

    I spent a few months reading on the internet and finally came up with what fitted - including the possibility of normal blood tests. But we shouldn't self-diagnose ...

    So what should we do? Just curl up in a corner and give up?

  • I was diagnosed by a pharmacist after being turned away by 3 GPs with prescriptions for such things as anti-sickness pills, anti-histamine pills, and shock horror from the third one at my request to be referred to hospital - that's how ill I was. Shock horror was my reaction when finally diagnosed and learning that my eyesight was at risk! Says it all really. Thank Heavens for finally finding a rheumatologist who restored my faith.

  • Morning Celtic. I have a fantastic pharmacist who know me better than the Doctors. I always go to him first before I see a Doctor as he has never been wrong yet,!!!!!!

  • Mornin' to you too, Jean, and hang on to that pharmacist - mine retired and then I found another amazing one at another pharmacy! He even came to one of our PMR/GCA meetings and gave a talk about steroids. He was brilliant, so I wrote and told his bosses........result: he got promoted and transferred miles away!!

  • Hi Celtic. My pharmacist owns the business so hopefully will never move away !!!!!

  • Ah lucky you, Jean!

  • Oh no!!!!!

  • That's exactly how I feel right now!

  • I had similar issue in the first month of PMR... could not sit for long on hard chair. After experimenting, I discovered that if I had a short walk or stretch muscles in the area that hurts ( usually hamstrings), the pain would go away for a while. My conclusion is that sitting was restricting blood circulation even more then usual and causing discomfort and pain... Try it .. see if works.

    It could also mean that your pred dose is a bit too low for the inflammation that you currently have and it does not remove all the waste from muscles. When dr started me on pred ( only 15mg and I have about 75Kg), it took more then a week before pain was gone... So with relatively lower dose, it may take more time to completely recover.

  • Thank you all ,I know from this forum I am right to trust how I feel not how I am told I am feeling! Faith restored in the medical profession with an appointment with my hearing specialists. I am totally deaf with two Cochlear implants. They only focus on how I say it is not how computers think it might be! West of England Cochlear team take a bow!

  • Hear, hear! ;-)

    I am totally in awe of cochlear implants and the most amazing video I have ever seen was of a baby having her new implants switched on!

    But really - do some of these doctors think 

    a) we don't know how we feel

    b) that we LIKE being chronically ill?

    I'm pretty lucky I have to say but it infuriates me for others.

  • Wow someone in a similar situation. Seems no one wants the responsibility of making this diagnosis....and I can see why!!!  My Doc got the last laugh cpl days ago when my Temporal Artery Biopsy Scar went Septic after being referred by ED Dr to General Surgeon and against my GP wishes performed TABiopsy.....then with MRSA Gave me the wrong AntiBiotics😁😁 Now I have a seeping wound above my ear and GP is left to clean up the mess ..... Neither he or the surgeon wanted it done to the extreme of putting the surgery off for two days but did it he did !!!!  Now my Dr got me on Sledgehammer Anti Biotics and I'm at home doc says with all my other conditions "False Negative Biopsy is too bad " !!!! So Easter wkend I'm in my bed trying to cure Sepsis in my head and GP gave me his mobile number rather than me present to hospital ED again......there's a big picture here and I'm gonna get to the bottom of have been treated with the same cautionary treatment I was by my GP but have been left worrying if you have a complete diagnosis. Send him/her a letter when you are calmer and clear of what you want to say....and make sure you send it by registered post and keep a copy and request response....phew I hope u feel better now and stronger.....that's the thing about being an unheard voice...we don't feel anyone at all is listening ......well we are😄😄😄

  • Had PMR for over a year now and get full blood tests done every 4 weeks. Doctor was telling me we have to reduce as quick as possible and i focused on that. One day my doctor was off and i saw a locum with a rhuemology background and he explained that i should not try to beat PMR because i will lose every time. He told me to go up and down with the pred.reduce at my own speed not at other peoples speed. So now i get bloods done every 4 weeks in the treatment room and listen to my own body and reduce accordingly. Haven't seen a doctor for a few months now. Started at 15mg reduced to 6mg over time and recently had a relapse so increased to 10mg which i am on now and will start next week to reduce again. The pred treats the pain not the PMR(it still lurks in  the back ground) and it is just a matter of finding the lowest  level of pred to manage the pain until the PMR disappears. Had PMR in 2008 and it returned 2015 so i have got to know it quite well.

  • I know exactly what you mean, when I was in to see the eye doctor I have never seen before, he had a doctor in training he was over seeing dealing with me. I was already nervous because I thought I was going to be have the temporal artery biopsy. So she starts out." So what brings you here?" in a very snotty tone. So I replied, " I imagine as it probably says on the screen, I was referred here." I really wanted to say, oh I was just passing by here and have always wanted to see what it looked like inside. : P lol

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