I am sorry, grumpycat. Nobody should have to go through that. There is no excuse for how they are treating you. My own Rheumatologist said that if I wasn’t getting good medical care, “fire their ass. They work for you!”. He is a gem, cares deeply about me, does what he can for me, and is compassionate.
If you p.m. me, I can tell you where he is located. If we live in the same vicinity, great! My internist is also a wonderful, caring doctor. I will give you his info as well.
Start doing some research, and looking into other doctors. Word of mouth from your area is great to start with. Otherwise, pick a doctor and see how they are. If they are useless, find a other. Sometimes it takes a few tries to get a good one. Good luck!
That is so terrible. You hope that if no one else does, your doctor atleast understands. I have become dependant on pain medication (not addicted) meaning it is no longer working for me. This also has some doctors questioning me when they see how much pain meds I am on.
Its so hard to find a good doc you gel with, I hope you find one soon x
The magic words are : Get a new one ;) She clearly is not hearing you- and not at ALL responding to the progression of the disease.
I would say get a new one ASAP!!! Best of luck- yikes, it's sooooo sad! We have to live with this disease every minute and to hear the way she responded/is treating you is awful!!!!!
Grumpy Cat, your doctor sounds like a real jerk. It sounds like you need a new one. I know that's easier said than done. I see you are from MD. That is where I'm from. I live in NC now but grew up in western MD. Have you tried Hopkins? I hear they have an excellent rheumatology dept. Just an idea.
I live on the coast in NC and there are not many good doctors where I live. It took me three rheumatologists to find the right one. I drove 3 hours to Duke to see my new one. This was a big deal for me. My insurance didn't cover it, I had to take an entire day off work and it was a very long trip with swollen joints, especially since my feet and ankles are now involved. It was worth every moment of the drive. Finally I found a doctor who would listen. I was so shocked when he actually listened to all my symptoms! He was the first doctor who did that, which is very sad. I thanked him for taking the time to do that and he said "wow, I am sorry that you've been through this; it shouldn't be that way." He started off by asking me what was going on and I replied with "I don't even know where to start." He let me start at the BEGINNING, which was 2006 and listened patiently and asked questions along the way until we got to the present. Everything I had to tell him was relevant for a diagnosis, which I knew all along and that's why I wasn't getting the help I needed. Usually when I would go back to 2006 the doctors' eyes would glaze over. Then the doctors would focus on one part of my body and ignore all my other symptoms. Most of them seemed to think my body was made up of separate compartments that did not work together.
Anyway, I had really had it with my PCP and all the other doctors I saw before my current rheumatologist. I am currently looking for a new PCP. My first rheumatologist was convinced I had fibro. My PCP was convinced of this as well. I kept trying to tell them that I had researched fibro, that I didn't believe I had the tender points, that my joints had visible swelling, etc., etc. I kept asking why I had visible redness and inflammation if all I had was fibro. Fibro does not cause inflammation! It was so bewildering to deal with the doctors looking at me like I had two heads all these years. I had low back pain for years that the doctors nearly laughed at because I had an MRI of my l-spine that was negative. The idiots never thought to x-ray my SI joints, which are a mess, and which only my new rheumatologist thought to actually check! How pathetic is that? 7 years of low back pain and only the 15th doctor believes me enough to actually try harder to find the source?
Now on to pain management... that was a disaster. I tried pain management because my joints were hurting so bad, no one could tell me what was really wrong and I was willing to do ANYTHING to keep up with my family and friends and work. I started taking heavy painkillers (percocet and then opana). Admittedly, sometimes I took more than the prescribed dose, but NOT because I'm a drug addict. The doctors did not know I "saved up" larger doses when I wanted to do something active like grocery shopping or cleaning. I finally got to the point that I was sick and tired of the way the medications made me feel, and was sick and tired of being treated like a drug addict. When I told the pain management doctor that the opana wasn't working, she immediately thought I must be an addict. I was so angry that I stopped the medications completely without tapering and never want back there. That was a dumb thing to do but I was irate. I don't even drink alcohol let alone do drugs! I do not have an addictive personality either. I am about as clean cut as they come. My pain just wasn't controlled. She didn't know what I actually had that was causing all the pain, and at this point I have a very high tolerance to narcotic medications which is unfortunate. I understand why the doctors start to think people are abusing narcotics or drug seeking, but that is not true in most cases and it is heartbreaking to be made to feel like you are a criminal when you're just trying to get medical treatment for severe pain. I'd love for that pain management to spend one day in my shoes (which are flats, because I can't wear heels anymore ;)). I am still disgusted at that place and that was two years ago!
Anyway, I am happy now with my rheumatologist. I have not asked for narcotics because I hate them and am trying other treatments first now that I have a real diagnosis. My rheumatologist has email that he responds to. Someone actually picks up the nurse line if I have questions. The rheumatologist calls me back personally when I have questions. When I ask a question he will say something like "that's a good question" and then explains. For me, this is worth every penny I pay and every mile I drive. I am finished with the rheumatologist who was mad at me because I had taken prednisone before the appointment and she couldn't see the swelling I was talking about. I'm done with the doctor who didn't want to look at the pics I took of my joints when they were swollen. I'm done with the PCP who thought this was all fibro. I'm done with the rheumatologist who ignored half my symptoms and hence could not properly diagnose!
Remember, if you don't have your health, you don't have anything. If you can get a better doctor, even if it's a long drive and even if you have to pay out of pocket, do it. You should never be made to feel the way you feel right now. I am realizing how absolutely crucial it is to have a doctor you trust and respect, and who respects you. My mom is the one who pushed and shoved to get me to go to a new doctor. I had given up. She is a nurse like you, and finally convinced me that problem wasn't me, it was the doctors. She was right.
Hear hear, lillyb. Finding the right doctor is the key. I had all the symptoms – dactylitis, perianal skin problems, fatigue, depression, high blood pressure, insulin resistance, central obesity, nail dystrophy, joint destruction – and my doctors just kept writing it off to menopause, poor eating habits, lack of exercise, OA from being overweight and having a career on my feet. Nobody connected the dots. When I finally got to a rheumatologist, she told me that my disease was mild and blew me off. Finally, when I suddenly needed a THIRD joint replacement, I got mad and found a specialty clinic where they listened, like your rheumy did. I have severe disease, and a lot of damage. A hard message to hear, but at least we can try to do something about it and move on. Best news I’d had in years.
GrumpyKittie, do whatever it takes to find a new doc. Because whatever it takes will be well worth it.
And doesn’t it just suck that our only shoes are flats? LOL
Wow, when I read what others have had to go thru to get good treatment, the pain they endure, etc... I feel kinda lucky. I'm not really bothered much by pain, yet... I have two fingers on my left hand in which the distale joint has locked up, and the fingers are swollen. Fortunately, again it my pinky and ring finger. My hips and lower back get very stiff at times but not really painful. My knees get warm to the touch especially in the late evening but no pain or stiffness. What I consider my worst symptom of PsA is the fatigue, I really hoped the biologics would help but haven't so far. I've started on Humira - only on my 3rd shot.
I initally experienced almost total relief from fatigue with the prednisone which my rheumatologist prescribed after my first visit with her. Unfortunately, it only lasted a couple of weeks. My rheumy did not want to increase the prednisone (20mg once daily) because she wanted to get me onto biologics as quick as possible. Her reasoning, and I agreed, is that the goal should be to stop inflammation from happening vs increasing the anti-inflammatory meds to control it after it's occurred already. And because prednisone has some bad long-term side effects.
Has anyone's experience any kind of relief from fatigue due to the biologics?
Yes, when my disease is under control from biologics I have a dramatic reduction in fatigue.
Shawn said:
Has anyone's experience any kind of relief from fatigue due to the biologics?
Same here. I still get fatigued but it's minimal compared to before the Humira. It does seem to come back a bit more as it gets closer to the next dose: my next injection is tomorrow morning and I've got enough energy to sit here with my laptop and that's about it. By tomorrow night I'll be ready to rock.
Marietta said:
Yes, when my disease is under control from biologics I have a dramatic reduction in fatigue.
Shawn said:Has anyone's experience any kind of relief from fatigue due to the biologics?
Thanks for giving me some hope. I had a really good, fatigue-free, focused day about 5 days after my 1st shot of Humira. I was able to get so much more than usual accomplished. ( I'm not sure it was related to the Humira because occasionally I've had such days - long before even knowing I had PsA. However, I haven't had another "good" day since then, and I take my 3rd bi-weekly injection tomorrow.) My rheumy's nurse said a lot of patients don't feel much difference until after the 3rd or 4th shot. I'm hoping for this 3rd shot tomorrow, but as long as others were able to get some relief from their fatigue, I'll stay optimistic.
Thanks again.
im lucky because my rheumy HAS RA, and injects enbrel for it, so she knows exactly what me and my wife are going through.
OP, your rheumy sounds like a jackass, im sorry. i would switch.