Had a regular 6 monthly check up yesterday with a doctor I had ever met before and I don't know where to start with what was wrong with how it went. Was asked how O was feeling and said not very good today pain returning to hands after being much better after a steroid injection a couple of months ago Dr answer not any sign of swelling my answer no I do t often have a lot of swelling but stiffness and pain on wrists and finger joints her answer should not really take steroids they are bad for you and weaken sour muscles and ligaments o.k but I have never asked for steroids they have been offered and I have refused them when I have felt that I have been relatively good. However I have been feeling low for about 3 months as I have had to give up childminding after 30 years as I am more reliant on a stick as I need a double knee replacement and therefore not physically capable to offer the best to young children. I am taking fluocitine and have had to double up since I have felt so low since stopping work and also worried about the financial implications I am in my early sixties and I am finding it hard to find purpose and motivation. Doctors answer lose weight exercise do a craft or adult colouring to stop you nibbling go swimming and you'll feel better about yourself . Don't eat processed foods prepare from scratch do you know what to do . My answer yes have joined weight watchers but struggling because of flare last week . At that doctor glances at her screen checking the time I am obviously taking up to much of her time. I take the hint time to go get her my stick coat and bag and leave feeling patronized and tearful and totally demoralised. The doctor wasn't telling me anything I don't already know about myself and as she told me I know what to do about it but her to e of voice was suggesting I was a drain on the NHS and did not offer me any real practicalanswers to any questions I asked about excessive sweating ligament and muscle pain and if these were typical of RA her answer was when you lose weight they will Improve the poorly healing skin the sweating the pain and the low mood who knew doing weight as a cure for RA and all life ills.
Feeling patronized and angry after rheumy appointment - NRAS
Feeling patronized and angry after rheumy appointment
I am sorry this happened to you , but in my experience it is par for the course with many Drs, GPs or specialists. They are arrogant and dismissive, unless you challenge. There are some good ones around of course, but in fewer numbers in my experience.
There are things you can do to get the respect and dignity you deserve, number one, remember they are public servants paid for out of the public purse , to which you have contributed. You have paid for them, they are not special, just offering a service like anyone else.
If it were me I would be writing to the consultant , with a request that your letter is submitted into your notes, saying how unsatisfactory you found the consultation and that many of your issues were ignored, ask for a response to the letter within 28 days. You can post it snail mail, but if you submit electronically to the rheumatologists receptionist, you both have an immediate record. No dubiety and its permanent, cant be lost or mislaid.
You could also contact PALS.
Or ask your GP for referral to another rheumatologist.
But one thing I would not do is let the experience go unchallenged.
I never visit a Dr on my own now, I give an update letter on my condition as soon as I walk into the consulting room, I insist on talking through issues that concern me, I will not be spoken over, my partner takes notes in my big orange notebook and makes a point of making sure they know this, asking for points of clarification etc.
The one thing that gets them to listen is to give constant and direct eye contact, never take your eyes off the doctors eyes, be confident and make them listen.
My quality of care has improved a lot since adopting this approach and the consultant is now friendly. I take less time as we get to the important points immediately, I'm examined, possibilities discussed, I'm and I'm out the door. I take my shoes off in the waiting room and wear easily removable clothes which I start to remove as soon as I enter the room, it is then difficult not to be examined properly.
Do not let people who are paid very well to help you, treat you dismissively.
Thank you for the advice I will do as you have suggested I am still feeling vulnerable today my husband phoned about half ago to see how I was feeling and suggested we get in touch with the hospital. My husband will help me draft a response. Thank you again for your help
It is good you have a supportive husband, and that he will help you contact the hospital. I wish you well.
I have said time and time again on this forum, if we all challenge this type of poor care all the time , things will change.
It is quicker for the Dr to offer good quality care, rather than trying to patch up nonsense at a later date.
I’m very much in the same category as you don’t always get swelling but lots of stiffness and desperate fatigue.
I work 1/12 hours a day (very little I hear you say) but I am exhausted. Money is a worry need to pay off my mortgage now in my fifty’s this is just not going to happen will have to sell and get something smaller .
The weight loss advice doctors so regularly give makes me mad 😡 do they think we really want to be overweight!!!! I watch what I eat ,I force myself to walk for half an hour a day I go to classes when I can ( getting less) I’m not gaining weight but I can’t even loose an oz. eating healthy you need to plan cook in batches and freeze. So my good days are spent in the kitchen cooking then I’m exhausted for days. A VICIOUS CIRCLE
Sorry about the rant but feeling grumpy today feel like life is passing me by and on a burden to my family. I’m usually so upbeat and deal with everything with humour. I even lost that today.
I sympathise very much over the weight issues. I had a BMI of 22 prior to all this ! I was lean and as fit as a fiddle too, long distance walker, Nordic walker, swimmer.
Now I can't walk, my RD has been plagued with thirst and apetite issues. I'm on long term steroids and the weight has spiralled out of control.
Weight gain is a result of not a cause of RD.
Thank you I have a lot of problems with my mobility can't walk very far at all and trying to lose weight is very difficult as I now lead a very sedentary life. I hope to start a seated yoga class next week in the hope of building up some muscle strength and flexibility which might make walking a bit easier. Both my knees are done the left is mostly bone on bone now right knee not quite as bad so getti g my BMI down is important I think that is why I was so upset about the doctor lecture on losing weight I am fat not stupid which seemed to be her inference and I am trying to lose weight but finding it very difficult. RD is a multi faceted disease and I am still coming to terms with the way my life has contracted due to pain fatigue low mood and side effects of the medication we take.
Steroids make you gain weight very, very easily!!!!!!!! I cannot imagine being treated that way. I live in the states and have been newly diagnosed and my RA doctor keeps calling me for me to start taking the RA drugs. My problem is my lung doctor needs to give me the drugs to protect my lungs first. I also need to lose weight...lots....been on steroids for 11 months!!!! I have had both doctors mention weight gain with steroids.....and of course I know this first hand....(like I wrote the prescription myself???) Yet they have only mentioned it just to make sure I knew.....I cannot imagine a doctor treating you as if that was the way to treat RA. I sure hope you get the help you need!!!!! RA is so very painful, totally crippling if not treated but I hear the right drugs can make you feel pretty normal again....I am praying!!!!!! Maybe you can see a different doctor???
Thank you for your replies and support I appreciate it. I am feeling a bit better today and you have all helpef
All of what you have written sounds so familiar to me because I have had things like that said to me as well. I also have excessive sweating to the point where it all runs down my neck and into my eyes and even though I have lost weight recently I still have it. I am always getting a fresh towel out to mop my face up. When I have mentioned it, I just get fobbed off.
The doctors just don't seem to get it at all. When mentioning how bad the pain is recently, one doctor said to try not to take too many painkillers, but if I was going to do something energetic like for instance gardening, to take one before that. I was amazed that he could actually think that I am able to do gardening. If I was to get down on my knees (if I was lucky enough to manage it) I wouldn't be able to get up again. I can't bend over without extreme pain and have no strength in my arms to pull up weeds etc. I explained that I am not able to do gardening and he replied well, if you go out for a long walk or something. At that I gave up trying as I can only walk a few yards and he had watched me struggling to walk from my chair in the waiting room into his room.
Yep that about sums it up I felt the doctor did not see me as a person and was not listening to what I had to say all she was interested in really was giving me a lecture and not engaging with me.
Hi mj - Many, many, many doctors are that way. It is unfortunate. I will tolerate it at the first appointment while I make clear that it will not go that way, but if I can't get their attention, I will request another physician. You have every right to be upset. I think the word "arrogance" applies in many cases, and while I can overlook a lot of things, that is not one. Good luck in getting it straight...
Hello mjfoster, I am sorry to hear about the situation that you find yourself in. I have never had a problem with excessive weight thank heavens, but I can understand the need to shed a few Pounds.
I realise that there is a need to be almost devoted to a diet regime to lose weight, but this must be doubly hard when you need some comfort just to get through each day.
When I have a flare up and I am struggling with fatigue as well and stuck indoors on my own, I certainly look for comfort food like chocolate, sweets or cake. But, I get the guilty feelings and then try to eat more healthy foods like fruit and veg, being careful to exclude acid foods like tomatoes ! It's mind over matter, but you are certainly not on your own, struggling to do the right thing. We are all only human, with other things going on in our busy lives to worry about too.
But, there is a lot to be gained by following a healthy diet. Less weight for our painful knees and feet to carry, and there is nothing better than feeling healthy and in more control of our daily lives.
My thoughts are with you. Lots of hugs xx
Thank you Assure
Same here Azzure , the pain is unbelievable, I suffer terribly with my hands wrists and feet they are the worst for flares, continually flaring too , don’t get a break from it for long at all ! And people wander why your so fed up !!it baffles me that there’s not much understanding! It’s not that you want anyone to feel sorry for you but just understand what pain and the rest we go through regularly! It cripples you and also puts your life on hold whenever it wants ! RA is bloody awful!
I think the pain can be so overwhelming when in a flare and like you I seem to have them regularly and now I have had to stop work I feel even more isolated. I am trying to fight the urge to withdraw even more just struggling more than usual at the moment I know mood will Improve when the flare passed
Thank you EFT sounds Interesting I will need to look at it x
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