Today I went to see my 4th rheumy. I saw him two years ago, and he advised I return to my usual rheumy. At the time I felt it was because he didn’t really want to take me on. Today proved it.
I went to see him because my usual rheumy is done. She has no more ideas, all she has for me is Imuran, which is doing nothing. I have to trial it for 3 months at least though, so its just a way of kicking the can down the road a little further.
I asked her for methotrexate or even arava, because both of those helped some. She refused, due to side effects (severe depression and peripheral neuropathy respectively).
So I went to see this rheumatologist again. This time he was blunt. He doesn’t think anything will help me. He thinks I have fibromyalgia, despite me having no symptoms of fibromyalgia. He told me that RA doesn’t cause waking in the night.
I told him that PAIN does!
He said “No it doesn’t”.
Seriously???
Hands up everyone who has been woken in the night by RA pain. That’s right, everyone.
I asked him if fibromyalgia causes swollen joints, he said ‘No’.
I showed him pictures of my swollen joints. He said ‘Ok, maybe you do have active inflammatory arthritis’
But he still believes that nothing will help me.
He said my ‘profile’ implied to him that the medications that have helped in the past were the ‘placebo effect’ which he then explained to me, cos clearly I’m an idiot and I couldn’t possibly know what that is.
I didn’t argue with him, because this is one of those no-win arguments.
Like the Fibromyalgia diagnosis, which is slapped on everyone who doesn’t show a strong response to their precious medications, regardless of whether they actually have fibro symptoms or not, its perilously close to the ‘its all in your head’ diagnosis.
I showed him some more photos, and he agreed those are swollen joints.
He asked me which joints “I thought were swollen” today. I said my hands, first knuckle. He looked and felt them and said nothing.
He then said he was willing to try all the remaining biologics on me, because it would be an interesting experiment.
Which is great, except again, it’s a no-win for me in terms of him believing me.
He then asked me which medications had helped. I told him methotrexate, arava, orencia all helped a bit, maybe 30%. He said what about Actemra, I told him it helped considerably. It had me jogging on the treadmill at gym.
He said that sounded exactly like a placebo effect. So rather than being happy that something did actually helped me, he fit that into his perception that I’m a hypochondriac.
He said again that he didn’t believe anything would help me. It was so condescending.
Typical rheumatologist when faced with a non-responder.
He even told me that 80% of people are helped by medication, and 20% don’t respond or don’t respond well.
20% is a pretty large percentage. I don’t know why he feels that I can’t possibly be in that number, but instead I’m a head case or have fibromyalgia.
And then he suggested I try exercise.
OMFG. Ok, so I used to LOOK like someone who exercised. A little overweight, but still toned and strong. So my claims of being in severe pain were discounted, because I couldn’t exercise if I were in that much pain, so I must be exaggerating.
Now I’m 20kg overweight and I certainly do not look fit or toned. So now I clearly don’t exercise at all, and I’m just lazy.
No matter what, doctors don’t believe me, and they don’t want me as a patient.
He had clearly had enough of me, so I asked for methotrexate injections. He agreed. He said ‘we’ would monitor my condition very closely and see if I really did improve on methotrexate. And we would go through all the medications in the same manner, one a time, at least three months of each, and closely monitored.
Fine. I don’t like him, but I do want a shot at other medications.
So I don’t have a choice. I’ll dump the Imuran because I know it doesn’t work.
I’ll start methotrexate tomorrow.
He sounds like a right##%$** or words to that effect.Did your bloods improve on any of the meds ? or is that placebo too?? Hope one of the other interesting experiment biologics work-that’ll show him or not!
I’m angry at him I can only imagine how peeved you are.
Best wishes
He is an arrogant turd. But funnily enough, I don’t even get annoyed anymore. My bloods are almost always perfect, I’ve never had a night ESR or CRP, even when Ive had obvious swelling, and inflammation visible on ultrasound scans. The bloods are just meaningless for me. He thinks I’m an interesting experiment…well I’ll take the access to the meds, and I’ll leave his attitude. Its clear he thinks this is all in my head, and I ust don’t care anymore.
thanks for your support x
I call bull****, RA doesn’t wake people at night, spoken by someone who clearly has never had pain so bad they can’t sleep or if they do, get woken by it. He can spout stastistics about medication reactions but doesn’t think Ra pain will wake us. Ok!!!!
I’d take the meds too especially if done in the controlled and monitored manner he mentions, but like you my labs don’t always trigger these days, they used to in the early days when I hadn’t been on a slew of meds for years, so I wonder what he’ll have to say about that. I hate ignorant Drs who don’t realise that we are all different and there is rarely such a thing as a text book patient. This is also where I find photos so useful.
So with you Gillian. And you make a great point…after years and years of meds, and for me, years of prednisone, its not actually that surprising that bloods are normal. I’ve heard lots of people say same, great bloods, loads of pain. And the standard response? Oh, its fibro. He also said that fibro is incurable. that only about 10% of people get any relief from medications. He even said “I give up” when it comes to fibro. He can’t help at all. But I felt very strongly he thought fibro was a disease of whiny, overweight women who were depressed and enjoyed the ‘attention’ of being sick!
if you want I can email home next time I am up in the night with RA issues. Just a thought?
If only these drs would realise that we’re only overweight because we’re unable to do the things we want to be doing. Why won’t they realise that we’d do anything to have our old healthy lives back. I hate that I can’t do what I want to do, the kind of jobs, work, hobbies I used to love. I broke my heart the day I had to hand in my notice, I loved my job, I still miss it 9 years later, but oh no we’d rather be sat on our sofas hurting all damn day. I thought Drs were supposed to be the educated ones.
All the education in the world can’t overcome someone who chooses to be ignorant! I have often said to people, doctors included, why would I trade a happy life with a well paying career…for loneliness and disability and poverty? No good answer for that one…
I’ve gained so much weight because of the steroid they use to try a treat the arthritis. I’ve had nights where I can’t sleep because of the pain. This doctor sounds like a top c**t. I remember being told at 17 that it was all in my head even though there was 7 years worth of notes to go through proven otherwise. I’ve tried so many different treatment paths none have worked or made it worse apart from infliximab. I’ve been arguing with my specialist about going back onit because the treatment I’m on doesn’t work. Doctors need to understand just because they don’t see the results we feel them
YES!! They rely FAR too much on lab tests, which, almost every single one of them is only 80% accurate or less. At least in the RA world. Even inflammatory markers (ESR and CRP) are NORMAL in 30% of cases. But NORMAL blood work does not mean pain free, disease free, or responsibility free for these rheums/docs. And there is nothing worse than the ‘its all in your head’ comment. And at 17, that would have totally undone me. You are a very strong lady, Heidi. Tho I bet your docs never tell you that. I know its been months since you commented, I’m sorry for not replying sooner…were you able to get inflixamib back? I can’t understand why docs won’t help whenwe say something is working. They treat us like idiots, and the blood tests as if they are law. Its unbelievable. Message me and let me knkow how you’re doing. Much love xx
Oh my God, finding a good rheumatologist is so hard. My sis she has rheumatoid arthritis but she was first diagnosed with osteoarthritis. One doctor later and weeks of constant pain and wrong treatment. However, the mistake was corrected thanks to next doc who was an expert. I wish you luck with your fight!
Good doctors, rheumatologists and all, are so hard to find! I’m glad your sis has a good one now, and is on the way to feeling better. Best to you both xx