Today I went and saw my Rheumatologist. At first he was lovely and nice then he got angry. At me. For looking up symptoms >.>... Granted, i'm sure he gets it all the time, and he was right in what he was saying but he was still mean! I think he thought I was arguing that I had lupus or something, but really I was just asking about it. I don't think I have lupus (thank the gods!) but I am afraid that it'll develop. That's what it really comes down to, we look things up because we are afraid that we'll end up with something worse. I also know for a fact that if I hadn't looked up symptoms, I would not have fought to get the initial blood test to begin with!
Ah dear, anyway.... He didn't apologise, but he was much nicer after I agreed with him, then started crying. The thing is, he doesn't get that i'm in pain. He knows it. He hears me say it. But he doesn't know how bad it is. And there is no way he could, I understand that. Which is why I was asking about those other things to begin with! For the record, I was asking about fibromyalgia, lupus, and dermatomyositis because along with joint pain I do get muscle pain and spasms. I'm quite thankful that I do not have lupus or dermatomyositis but he did agree that I had fibro.
So what does that mean? Ok, I am indeed in pain. Likely because my nerves are fried from being in pain constantly... I don't have any inflammation markers in my blood, so thats where the fibro comes in. But how is it treated? Well, no one flipping agrees apparently. He gave me a drug called tramadol to take, which is kind of like narcotics but not as addictive. So we'll give it a go...
I think he may have charged me less because he made me cry >.>.
Oh Emma, I’m so sorry you had that experience, I know exactly what you mean - they get upset at you for using all the resources you can to fight something that is crippling you! Just remember its about his insecurities, not that you are doing the wrong thing.
When he had a go at me about it and carried on about most websites having rubbish on them, I informed him coldly that I used the NIH website and found that to be pretty reliable (NIH is one designed for medical research professionals and the articles are scientifically validated and peer reviewed, though some of them can be hard to read - most of the articles about rhuematology are free).
Is it worth seeing if there is another rhuem with an interest in Fibro around? Tramadol IS a narcotic, and though it was first marketed as a less addictive alternative to codeine, post-marketing studies seem to indicate there’s not much difference. Personally I find tramadol makes me dozy, so can be quite useful at night, but I won’t take it during the day.
If you decide to do some more naughty research, you’ll probably find that the more modern approach to treating Fibro is things like epileptic medication and anti-depressants, which are believed to work because they influence the electrochemical signals that seem to go a bit haywire in Fibro.
Anyway, there are lots on the forum who also have Fibro, so you might be able to get some good advice on how to manage the two together there.
Big hugs, and I really hope you have a couple of good days in a row soon - things often look much brighter then.
So sorry that you had this upsetting experience. It is difficult for me to know where to tell the difference, especially with me because I have PsA, Fibro, Sjogren's and Raynaud's to boot. I am still not really sure if my wrist pain is a combination of all or if there is a major contributor, or even that some could possibly be referred pain like lamb had mentioned. There seems to be little rhyme or reason to it to me. I hope that you are feeling much better soon.
Ah, Emma. You know, the Rheumy's being angry says much more about him than it says about you. He is not comfortable with patients' being informed and questioning. He'd much rather be "god" like it was in the good old days when he graduated from med school. Times have changed, though. Don't apologize about crying: he needed to see that, and that's why he's paid the big money. My ortho guy was angry (and scary) with me last week because I allowed an emerge doc to give a cortisone injection to my knee, which has a prosthetic joint. I stood up to Orthodoc and told him that, at the time, I was in agony, and this qualified medical practitioner had offered me some relief, and I trusted the MD. Orthodoc cooled down.
You asked too many questions. Your doc was angry. I didn't question the emerge MD. My ortho was angry. Ha ha, we can't win!
It's the unfortunate that some docs don't have egos strong enough to handle patients' researching and questioning. And yet, many people here will tell you that they only started getting answers and relief when they did most of the work themselves. (I think Major Flake's story is the best, but I'll let him tell it himself.) I, for instance, told my family doc that I had PsA long before I saw a rheumy. Her reaction was to laugh and say "Interesting. We'll see!" She's is quite secure, and has no problem with my research compulsion. She even asks "so what have you read?". I'm lucky.
Please don't stop looking out for your best interests because the doc has a problem with informed and pro-active patients. That's his problem. Yours is PsA.
Thanks for the replies everyone :), it is very much appreciated! I agree in that we should all be researching and trying to be as informed as possible. They sure as heck don't give us very much information! I'm going to talk to my GP about the fibro and whatnot because I know she is much calmer and appreciates patients being informed. Rheumys are hard to come by around here, but I do think i'll look into possibly changing to one who has more of a focus on fibromyalgia. Thanks again for the replies everyone :).
I am very fortunate that when I leave the Rheumatologist, I am given a print out with a detailed explaination of his findings, it is computer generated with info from the Board of Rheumatology. His assistant hands me these and tells me to call her should I have any questions or problems. I feel very fortunate to be one of his patients. I wish such good care for you too. Hope that you are feeling better today.
I am very sorry. Doctors can be so hard to deal with. If they do not know what is wrong they blame the patient so they don’t feel so badly. On a side note be extremely careful with the tramadol - from everything I’ve experienced and read from others it is indeed far more addictive then the other pain meds. Research it and be very careful not to take more then exactly prescribed no matter what your pain level is. The bigest danger is the which can cause seizures.