Taking note of doctors whilst in hospital recently I realize:
I don’t drink enough (1 1/2 ltrs per day)
I don’t eat enough (has anyone come accross a hospital where the food was edible)?
I don’t exercise enough (house work, shopping, etc don’t count).
No, 10,000 steps are expected.😡 One particular doctor (aged about 30) “You can do it. Just take it easy”. I have PMR, OA, OP, GERD, high colesterol, high blood pressure. I just looked at him!
Also we don’t relax in the correct way. Meditation, yoga, mindfullness is the way.
We should think poitively (of course we should - how do we do it when we can’t even turn round in bed, heave ourselves off the toilet, etc etc)?
We don’t need to take so many drugs (the pain is all in our heads)! Of course it’s in our heads - it’s the brain telling us where the pain is.😏
Ah well. It’s nice to know there are doctors that care!
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Constance13
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The food in our local hospital isn't bad at all. Fresh, cooked on the premises. My only complaint is that it is aimed at elderly South Tiroler - the salads aren't big enough...
How did you ignore that!....you are good, I would have had to say something.......how ignorant is he!.........he must go home to LaLa land after his shift!
The food at my local hospital is great. I told them so when I was discharged. Many choices, incl vegetarian. Pud 2x a day! Well, that 30-something doc has a long way to go, hasn't he??????????????????
You are lucky karools16! My local hospital serves up huge portions of overcooked veg and meat that a navvy might enjoy, but not an invalide!!!
It's a pain in the doodah sometimes when you have several conditions and the expectation is that somehow you can walk them off.
I tried to explain to diabetes nurse that her patients 30% failure to attend wasn't unexpected as the first thing they all try and do - Dr, rheumys, nurses etc - is say "can you get on the scale please". I have got to say she is lovely and accepts that I only get weighed at the rheumy as i started on that scale so it's it has baseline that I can deal with. It would drive me mad being weighed every week or so on different scales. At the rheumy it has so far been a steady downward trend. Obviously hospital food must have set that train of thought off!😂 last time I was in was a while ago. Veggie meals ok when they accepted it didn't mean i would eat fish or chicken. The puddings were ok as they reminded me of school puds. The only pudding I liked and still have a longing for. Treacle sponge and custard. 👅
Oh yummy, now I may have tried to sneak a treacle sponge down me if I'd been offered that last week. I LOVE that pudding! I'm diabetic but cheat occasionally, I confess!
They were so lucky it was not me................I would have told them to go on a course on 'How to communicate with patients' and it would not have been for the first time either.
I sent my Cousin out of the room when I took her to see a Consultant, he had swivelled round in his chair when we entered, checked her name and age and then swivelled round to his desk, his back to us, looking at his computer and started to ask questions.
Joan was completely confused. I was furious.
He apologised and said' could he start over'...........'I said you have one chance to get it right or we are out of here and I will demand another Consultant and tell them the reason'.
That consultation was a complete waste of time, as Joan was utterly confused and that was my first experience dealing with, of all things, a Dementia Consultant!
Needless to say, he was completely different for the rest of the time and at two future consultations.
We either eat too much/too little, or drink too much /too late.
All Docs should experience a day in one of the suits, with weights and restrictions to know what it is like.
I had my first GP app.on Friday after he diagnosed, or rather confirmed my suggestion of PMR, as have two friends with it, and have heard the symptoms. After reading Kate Gilbert's book, together with all the info I have gleaned from this brilliant site. I queried a few things he said, mind you he didn't have much to say anyway. He asked me where did you get that from, showed book, probably not a good idea, and from this site. He gave me a patronising grin, ' better not to look on Internet, all you get are exaggerated comments, from people who don't know what they are talking about. I said that the only info I have is from my own research. As he just told me I had PMR, was keeping me on 15 mg and wanted to get me off asap, going to have fun here!!! Previous visit said he would arrange a Dexa scan but didn't mention it again, I forgot till later, but put me on Calcium and Vit D, and Alextronic Acid, spelling??? But said I didn't want AA as had looked that up and 1 in 10 experience joint pain. After 20 years of Osteoarthritis, 2 knee replacements and in feet and shoulder blades, I wasn't going to risk that again. Shoulders cleared up with sinovial fluid injections when I lived in France for 15 years. Spurs on feet disappeared.
As many of you have said, bad enough having this disease without having to hold your own with the medic who should be helping you. GP, 30 year old male. In UK it is now no longer possible to register with a particular GP, I miss my lovely French GP, who gave me time and a discussion., always came out feeling better, I haven't been able to sleep by thinking of attitude of this one.
As PMRpro messaged when I joined, DON'T GET MAD, GET BETTER, will try.
Ahh you asked 30 year old on life advice . I wonder how did you even manage to get to live to be in 80's with all the wrong things you were doing? We have saying in my old country that loosely translated is saying ... "Kids are trying to explain to parents where the babies come from"... Nobody lives perfect life... It would be no fun... Hope you are well
Constance, As hard as it seems, your doctor is for the most part right! My rheumatologist advised me to walk MORE just after I told him that I could barely walk from one room to another. I have followed his advice and am slowly building up and increasing the distance I walk.
I have always struggled with drinking so put a chart on my fridge and tick a box when I have had an 8 oz glass of water. This has helped me to remember to drink!
We CAN and MUST change 'our' mindset. It is not easy. I am struggling on the healthy food side right now as the pred leaves that metallic taste in the mouth but I am aware that only I can find a solution to this problem.
At the end of the day, we all want to feel better and have healthy bodies so let us ALL try to encourage one another along the way!
If anyone has a recipe for a healthy meal, please share it.
I hope you and the rest on this forum will soon be back to good health.
But, really, at 78 years old how are you supposed to walk 10,000 steps a day? I feel extremely pleased with myself if I walk 500 steps, but reality steps in when I realize I’ve got to walk 500 back.😏😏
Hi Lee, current thinking is to build up the bacteria in the gut. Apparently eating a wide variety of foods is important. I was told that you should have at least 50 different sorts of fruit and veggies a week. I am not sure I even know of 50! Also processed foods are not a good idea and artisan products can be a lot better.
The PMR effect is real. I sympathize with those who are more limited than before. Am on a river cruise. Hip pain and tired legs cause me to leave on-shore walks. I don’t feel guilty. I sit and have a cap and forbidden dessert and watch the dogs go by. Am on plenty of steroids but 35 minutes of walking on cobblestones is my limit.
Oh God, I hear you! I was rushed to hospital last week - seriously ill (they never did actually get to the bottom of it and discharged me despite knowing I wasn't well ... we'll give you tablets to stop you being sick ... gee, thanks!) I begged for food but they kept me on a liquid only diet - but didn't tell the nurses who pushed me into eating toast - then I was told off for eating the one quarter I did manage. 7 days - not a bite of food, ZERO sleep and almost no liquid. I felt like I was going crazy - at one point I was so desperate for sleep that I would have accepted a sleeping tablet ... mind you, maybe for everyone's sake it was a good job I wasn't offered one in retrospect. No matter what they did my test results were crazy. Food has never tasted so good when I was able to get some toast down me the day I was discharged! :D. Incidentally, I am Diabetic Type ONE (insulin dependent) so food is essential.
You can't have PMR ... look, I've been through this so many times. Do you agree my symptoms match? Oh absolutely - but you're too young. Sorry, my body didn't get that memo! You don't have eyesight problems ... why did you go to the toilet on the commode and not have a bowl under it? We've got a dreadful cleaning up job to do ... yes, I know. However, I did warn you that I CAN'T SEE ... Ih ave long periods where my vision simply disappears with no reason or warning. Sorry, it's in your imagination. Maybe you just don't WANT to see things ... I would say the proof of that was in that mess on the floor!
The head nurse was a total witch ... KNOWING I had been on the commode most of the four days (oh how I wish I was kidding) she TOOK IT OFF ME. Look, it's 20 steps to the toilet. You'll make it. You'd better! Look, I'm dizzy (which I guess is natural when you've withheld food for 7 days), my hip collapses and I currently can't see. What bit of it would be safer to have the commode is hard for you to understand. You don't need it. Not three minutes later I'm screaming for help ... get back to the room and the same thing happens - and I fall! What's wrong with your hip? It was like being on a roundabout!
I went for an independent consultation a few weeks ago and the doctor there said You DEFINITELY have PMR. You match symptom for symptom. I also strongly suspect GCA. You ARE too young but the facts remain that it is literally symptom for symptom ... The doctors wouldn't buy it so I'm still no further on. They also told me I couldn't possibly be in pain ... it's in your mind. In desperation, I decided to meditate (I used the Alpha plan - partly out of a desperate attempt to get a little SLEEP!) but it's impossible to relax when they are coming in, checking your bloods, fiddling with wires because the drip's faulty, trying to stem the flow of the drip which is turning the chair below it into a skating rink! The nurse had not attached it and the stuff was dripping onto the chair instead of my arm. I kept complaining about the pain in my right hand where the cannula was. I'm an old hand at hospitals and never complain about the needles - but the pain I experienced there was second to none. One of the night staff was INCREDIBLE. He saw me biting my lip to stop screaming and that I couldn't even breathe through the pain at one point. "That's not right." Bless his heart, Peter stayed to make sure I was OK, holding my hand through the worst of the pain, stroking my face. When he had to leave he kept coming back to check on me - then he realised I was dithering so he brought me some blankets. One night he took the trouble to tuck me in! Poor guy walked in to a dreadful mess one day and I seriously thought he'd shout at me. He must have seen something in my face because he came and sat on the bed, checked my blood and temperature and then asked for some painkillers for me. When I apologised that he'd clearly been left with a mess he said, "Hey, it's my job, love. Trust me, I know it's not your fault. The staff don't help because they know you have no sight at the tmoment and STILL don't put a bowl in the commode - how are you supposed to know?" That young man worked like a trojan and nothing was ever too much trouble for him. He was always there for his patients and went the extra mile. Most of the nurses didn't want to explain anything (as he pointed out, it's scary being in hospital - but knowing what they are doing and why is a huge factor in relieving that fear).
Only he and Janette were willing to answer all my questions. He and two of the other nurses made those few days bearable but I will be putting in a complaint against the head nurse. Some of the nurses said I don't push myself and don't exercise enough ... I walk whenever I can - very rare do I hit 10,000 steps because I fall regularly. I push the pain barrier all the time ... OP is right - the doctors simply don't care. If there is a plus side to this period ... hard to see it right now ... I would have to say it's that I've FINALLY been able to reduce one of my painkillers. I have been trying to do that for a long time ... now, having been forced to go 7 days with no painkillers at all, reducing that by one has been a synch! :D.
Oh dear! MUCH worse than my experience - the hospital and staff were amazing (except for the young one who thought he knew it all). It was only the food I couldn’t cope with. That was partly my fault as I am a bit fussy with food!
Where do you live? You really must put in a complaint. Also, how old are you?
I get your point Constance, not just a comment on hospital food , of course it differs whichever place you go , but your post as a whole showing that doctors regularly treat you like it is your personal choices that made you ill and keep you that way.
Very few GPs or Consultants I have seen in UK understand that a , " one size fits all" , to food, exercise and general health does not work for the varieties of illnesses and the types of pain that patients have to suffer.
I have found it both annoying and amusing that when you ask for appropriate advice on life style changes from many doctors , especially in terms of preparing and recovering from treatments or surgery , that they never have written information to give you and always give the same advice as your doctor said above.
It particularly irritates you when you know you are already doing all you can and did have a healthy lifestyle before your body decided to betray you.
I eat healthily and always have, I drink enough water and always have, I was an extremely active person and exercise now as much as I can when I can , and only take the pain medication because I need it , not because of routine, despite all that I still became ill and will always have a medical condition.
Sometimes I wish that I could put a doctor on a spinning fairground ride while using a road drill, force them off , beat them with sticks , every day a week, then instantly ask them how they feel about doing a bit of yoga!!
Fear of criminal conviction, however, means I just nod and smile and then go on my way.
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. I wonder how did you even manage to get to live to be in 80's with all the wrong things you were doing? We have saying in my old country that loosely translated is saying ... "Kids are trying to explain to parents where the babies come from"... Nobody lives perfect life... It would be no fun... Hope you are well
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