My open letter to doctors out there
I know you mean well and I know that you think you know what is going on with me.
But please for the love of God, please stay in your swim lane.
If you are a cardiologist and I came to you for my heart, then please stick to my heart.
If you are an orthopedist, and I came to you for my knees, then please stick to my knees.
There is nothing more annoying that going to a doctor’s office and being “educated” on what is wrong with you.
Now hear me out, please. I have Rheumatoid Arthritis, Fibromyalgia, and Costochondritis, I know that in your 6-12 years of higher education (depending on if you are a doctor or a PA or something in between), you likely covered RA, Fibro, and Costo for less than two hours for each, and I know that makes you feel like you are an expert on it, but unless you are a Rheumatologist, or you have one or more of these diseases, then please keep your opinions to yourself.
This all stems from me seeing the “know it all” Physicians Assistant last month at my cardiologist’s office. She felt very compelled to impart all her vast knowledge of RA and Fibro to me. Making sure I know that I need to get sleep and that I should have a sleep study done because he knows that I have sleep apnea. Just because I have these illnesses, doesn’t automatically mean that I have sleep apnea. Just because I wake up in the middle of the night, does not mean I have sleep apnea. In fact, I can tell you exactly what time of the night I normally wake up in the middle of the night, I can even tell you why I’m waking up, but please tell me how you know it is most certainly sleep apnea.
In my case, if you actually bothered to ask and then shut up long enough to listen (listening seems to be a problem that many doctors have, they seem to be too high up on their horse to listen to you), you would have learned that I wake up between 1:50-2:00 almost every single night, and I wake up in great pain. The pain is because I hadn’t moved for the past 4 hours and I’m very stiff and that causes pain. That is a direct result of the sleep aid I’m prescribed by my Rheumatologist (see my Rheumatologist actually knows what is going on). Many nights, I take my sleep aid and go to bed and I don’t move until I wake up between 1:50-2:00, thus the whole being stiff and in pain. I stretch out the problem areas, roll over to the other side, and fall right asleep until about 5:30, when my alarm goes off for me to get up and start my day. But please tell me how you know that I have sleep apnea.
So let me tell you a few things,
1) I have already talked to my doctor about sleep (thus the sleep aid), and sleep apnea, and she thinks that I do not have it based on what I have told her and the answers that I have provided her about my sleep. She feels that the pain medications that I take at night, have basically timed themselves out, meaning that they lose their potency at that time. For Seroquel, the half-life is around six hours. For Gabapentin the half-life is around 5 hours. Since I take my medications at 9 p.m. that would explain the 2:00. One thing to remember, is that after I stretch out and roll to my other side, I fall back to sleep almost instantly (thank you Seroquel).
2) I’m not popping pills for my Fibromyalgia, which is the one thing you hit on. In fact, I don’t take anything at all for my Fibro. I take an injection for my RA, I take Gabapentin for my RA pain. I take Tramadol for my costochondritis pain. I have hydrocodone for days when the tramadol isn’t enough. But please tell me how I’m taking pills for my Fibromyalgia, in fact, “Fibro ain’t shit”, compared to the RA and Costo.
3) Next time, ask a few questions and start a dialog, don’t just roll in there, and start your lecture on how I’m not taking care of myself. You are basing that all on a few notes in my chart. That reminds me of the doctor that told me I should try to lose some weight, even though I was down 30 pounds in the past 45 days. Don’t notice that, tell me that I need to lose some. weight.
I swear so many doctors shouldn’t be practicing medicine. Most seem to have the bedside manner of a toad. I once had a doctor release me from a 5-day stay in the hospital (for a bowel resection surgery), via a phone call. Seriously, he phoned it in, how sad is that? I also had a doctor who checked me out of the hospital with him standing at least 10 feet away from me (years and years before COVID). He didn’t touch me or examine me. I can understand it to a point, but his overall bedside manner is terrible. I once had a doctor tell me and my wife, that my medical issues are all likely the cause of a brain tumor and then continued with the rest of his exam. He didn’t offer any other insight, beyond that (no, it wasn’t a tumor, it was RA). I once had a doctor at Johns Hopkins of all places, ignore me and talk to my wife the whole time (Uhm, I was the patient).
Now, while we are on the topic, please tell me how I need to get more exercise and that running around all day at work doesn’t count at all. Please tell me how I’m just being lazy, tell me to go on a diet (mind you, I have lost 40 pounds in the first 4 months this year). For those that do not have one of the diseases, let me tell you that one of the biggest complaints we have is extreme fatigue. I know that your grandma had arthritis and she did fine and lived to be 80. Please tell me that when I have no energy, tell me to push through it. I love to hear those things. If you don’t have an invisible chronic illness, then keep quiet out of respect for those of us that do.
Hey Doc, how do I get more exercise, when I can barely walk during the day? You have no clue how bad this fatigue and pain can be.