At my appointment today I asked this doctor about how I can better control any pain I have. I consistently, everyday, take Ibuprofen and Tylenol. I know that taking those consistently isn't good for your stomach and GI tract, your liver, or your kidneys and I don't want to worsen my health by trying to stay out of pain. It's a vicious cycle. The doctor asked me what I took for my chronic pain and I just said that I take Lyrica and Amitriptyline but that I am in the process of weaning off of Lyrica. She then said to me, "Well Lyrica really only works well for nerve pain." I kind of stopped and looked at her. CRPS is a disease of the Sympathetic Nervous System. Finally aftter she hadn't said anything I said to her, "Well CRPS is nerve pain. Severe nerve pain." She had NO IDEA. This unfortunately is not the first and defintely not the last time a doctor has been uneducated about CRPS.
I've been so frustrated with lack of quality of health care for those of us who suffer from this and other rare, unknown chronic illnesses. I often am the one educating doctors and other health care provicers abour CRPS and what it entails. I often, out of frustration, have to joke about the whole thing so that it doesn't get me emotional. I say to my mom and fiancé, "These doctors pay a lot of money and spend a lot of time to learn a whole lot of nothing."
I know they are smart and have worked really hard for where they are at, but it's so frustrating.
I am struggling immensely to find a doctor or a team of doctors who really understand CRPS. The only reason I haven't totally given up in looking is because of my pain doctor. Because of him, I know that there are people who get CRPS and want to help. So we keep looking. I have had a specialist say to me, "Oh you have such a long list of health issues for such a young girl." and, "You're on so many medications for such a young girl." I know that she probably didn't mean much by it, but it was awfully condescending.
I also have met with another specialist, an endocrinologist, who when I told him about having CRPS he asked what area of my body was affected. When I explained that initially it was only in my right foot and now is in both legs up to my hips and in both my hands, he looks at me and says, "CRPS absolutely cannot spread." I just looked at him and said, "Please do some research."
To top off the issues I have been having with doctors, I went and saw my family doctor recently for a normal medication check in. The whole appointment I was talked down to and made to feel so uncomfortable. A year ago, this same doctor gave me a handicap pass, as we thought it would be beneficial. During this most recent office visit we talked about renewing it. His words to me were, "You're back working in a physical job, you shouldn't need it now." When I told him that it is more reason for me to have it because this job has me exhausted, he went on to say, "Well maybe you shouldn't have just jumped back into it full time." After he finally agreed to renew it for a few more months he said, "I really hope you save the hadicap spots for the little old ladies who actually need them." So if that didn't make me feel bad enough, I was telling him about weaning off of my Lyrica and he said, "Oh that's great that you're doing so well." When I told him I was getting off of it because of how toxic it is for your body he just said, "Oh." Toward the end of the appointment after hearing all of these comments from him I asked him what I should do about how poor my veins are (for proccedures, surgeries, allergic reactions, etc.) he said to me, "You need to just lose weight so they are easier to get to. Mind you, this man, a medical professional, knows I am actively in treatment for an eating disorder. I also have lost 20 pounds, healthily, since the last time I saw him and he didn't have one comment to say about that.
I left the clinic absolutely baffled that someone could talk to me that way, embarrassed, and sobbing.
I have always had bad veins and then with them being used frequently (IVs, blood draws, etc.) they have become full of scar tissue and have become more "valve-y." There isn't really anything they can do but it was a legitimate question in which I got a very inappropriate answer.
Beccoming my biggest advocate has benefited GREATLY but I have also been put in places that the docotors don't want to admit that I know more about it than I do. So they treat me poorly and send me on my way. The one thing I have learned, and continue to learn, through all of this is that the only person who really understands what is going on in my body is me. So I need to keep embracing this journey and advocating for myself and others who are suffering.