Dear Doc-
You should know that you're not the first Rheumy I've seen. I've had a Rheumatologist as a part of my medical team since I was 15 years old, nearly 25 years now.
In those 25 years, I have undergone many pressure point exams, many blood tests (and repeated blood tests), and many movement exams. I've had high SED rate results and a positive ANA for about 15 years.
I've watched multiple family members (including my mom) deal with different Autoimmune and Connective Tissue Disorders.
In the past 15 years, my list of symptoms has grown to include not only the Fibromyalgia symptoms, but also Joint Hypermobility Syndrome/Ehlers Danlos Syndrome, hypermobility type, Reynaud's Syndrome, as well as symptoms commonly associated with autoimmunity. Many of the symptoms I experience also show up with Fibromyalgia, such as brain fog and cognitive issues, chronic widespread pain, fatigue and general exhaustion, and GI distress, so I can understand why you may easily just categorize the experience of the symptoms as part of my Fibromyalgia. Except these symptoms have become progressively worse and the presentation of other symptoms have surfaced as well: unexplained fevers, chronic nausea, constant GI pain, kidney problems (and frequent flank pain), skin problems (including the "butterfly rash"), sun sensitivity, hair loss, dry eyes and mouth, shortness of breath (which is frequently attributed to my history of asthma, even though I have had little issue with asthma when I don't have an upper respiratory infection or bronchitis), sores in the mouth, frequent and easy bruising, ringing in the ears, migraines and cluster headaches, and a difficult time recovering from minor illness.
About 3 years ago, I saw a Rheumy within the system who quickly diagnosed me as having both Lupus and Rheumatoid Arthritis, and gave me a script for Plaquenil. In the next visit, he told me he didn't like treating people with Fibromyalgia, and so I made the decision easy for him and sought out another Rheumy.
This second Rheumy was actually pretty likable. He listened to me, examined me, ran some additional blood work, and started throwing around the possibility that I was dealing with Ehlers Danlos Syndrome on top of the Fibromyalgia. He also ruled out Rheumatoid Arthritis, but was particularly concerned with my familial history of Antiphospholipid Syndrome (APS).
I'm not sure what happened, but between the third visit and the fourth visit, the investigative doc who I had started to trust suddenly hit me out of the blue with: "You need to have a gastric bypass. The extra weight isn't helping your Fibromyalgia." with no other mention of other conditions I was seeing him for.
Now, let me be clear. After my initial diagnosis, I learned not to seek out assistance from Rheumatologists for the Fibro. Frankly, their attitude towards the condition and me was always so negative and borderline hostile for "wasting their time", I choose to work with a PCP who could help me manage the Fibromyalgia to the best of my ability. I find myself having to state that at each Rheumy appointment. At this point, I only see a Rheumy because I'm on Plaquenil and it's generally not something a PCP will prescribe. Plus, I have a lot of symptoms that are concerning and fall outside of the Fibromyalgia realm.
And my weight is a sensitive issue. I have gained a lot of weight over the years from the variety of medications I've been on. I also did some really stupid things with my metabolism in high school, college, and grad school where I wouldn't eat all day. With the chronic nausea and fact I tend not to feel hunger, I have a tendency to skip meals. I worked with a nutritionist a few years ago, and started tracking my food, and despite being obese, we realized I was getting less than 1000 calories a day. In short, my body was in starvation mode and holding onto what food I did eat. I have to eat by a clock since I can't trust my body to signal me.
To add to all of this, for the past year, I have not been able to keep food in me. Thirty minutes to an hour after I eat, I'm sick. We've been working to figure out what's going on. Have I lost any weight? No. I have to assume it's what the nutritionist diagnosed as my body being in starvation mode. What I can say is that I'm beyond exhausted.
So when the doctor says I needed a gastric surgery to lose weight, yes, I became upset. It's frustrating to me to go from someone who just four years ago was vibrant and enjoying life to barely being able to function and not enjoying my life. If I honestly thought gastric bypass was the answer, I'd consider it. But since my (albeit, basic) understanding of the way the surgery works is that it limits calorie absorption--and I can't absorb calories since I can't keep food in me--I'm not sure that a major surgery would be helpful at this point.
This led me to request a new Rheumatologist, which brought me to you. And I hoped that the fact that you are a woman may mean you'd take me seriously. Historically, women--particularly overweight women who experience chronic pain--are not taken seriously by the medical profession. Our pain and reports of symptoms tend to be dismissed.
My hopes where immediately dashed when you walked into the office on that first appointment together and said to me, "I've worked closely with Dr. (last Rheumy I'd seen); I agree with everything he says."
I should have walked out at that point. There was no point to this appointment.
But no, I stuck around long enough to explain I was here because I was on Plaquenil (which, according to you, I shouldn't be on) and try to explain my symptoms (which, according to you, weren't rheumatological), and we ended the visit with the decision that we'd wait to see what the GI specialist came up with on my GI stuff.
Our next visit, I brought my husband with me. It says something to me when I feel it necessary to bring a man to my doctors' appointments so that I can be taken seriously, but we were at that point. (I'd like to mention that he accompanies me to a lot of my appointments just to be a support and second set of ears. He also gets the chance to ask any questions or bring up things that my fibrofog caused me to forget.)
Within 5 minutes of walking in the door, you refused to listen to my list of symptoms, again stated that you wouldn't have put me on the Plaquenil due to my tests, and asked me if anyone had ever talked to me about Fibromyalgia.
I admit, it was not my finest moment, but I completely broke down and lost it. Not only did you seem to not have read anything in my chart, but you weren't interested in listening to me at all.
My wonderful husband kept me from walking out of the appointment and explained the issues that I'd been having and eventually convinced you that blood tests were warranted. You acquiesced, letting us both know that things probably wouldn't show up, but you'd run the blood work.
The thing is I want to see you less than you want to see me. You may be a great doctor. But your bedside manner needs some serious work.
I felt a bit vindicated when my blood work came back funky. I read the pathologist's report that there was definitely something going on in my blood work, but it was unclear if it was well controlled Lupus (since I am on Plaquenil, I assume) or something related to APS. My kidney tests also showed some abnormalities that we're following up on. For the first time in years, my SED rate was low and my white cell blood count was down (which was interesting because I was diagnosed with a raging Parotid Gland infection a few days later.)
You see, I know a lot about the conditions listed in this blog. I know a lot about the tests. I read the same medical journals you do, as well as belong to several organizations dedicated to chronic pain management and advocacy around these invisible illnesses. I am not only a chronic pain patient, I am a mental health practitioner who works with individuals who live with chronic pain. I probably do more research than you in this area. While you may be an expert in the field of Rheumatology, I am an expert of what I experience in my body and what might be affecting me. I also research all the treatment options and I know which medications I've been on, which I can't tolerate, and what I'm not willing to even try.
I realize I'm either the best kind of patient (to the right doctor) or the worst because I educate myself and I advocate for myself, and I have no problems verbalizing my concerns about treatment. I'm also a complicated patient who has a lot going on. I didn't ask to have all of these issues or to be a difficult patient. I didn't ask to spend so much time at doctor's offices, having procedures, getting tests done, or being sick. I want my life back (or at least what I can get back).
In my heart of heart's I believe there is something rheumatological going on. That is why I continue to push forward.
I've applied the "three strikes" rule to doctors, and so far, you've got two strikes against you, Doc. I'll see you one more time, but if this visit goes the way of the others, I'm moving on. (And since Rheumatologists seem to be leaving my medical system at a rapid rate, I'll likely request referrals to UCSF and/or Stanford.)
Well, Doc, this sums up what you haven't been willing to let me share in our appointments. I'm not after a particular diagnosis or treatment, but I am after good medical treatment, which is what everyone deserves.
A list of medical definitions in my medical chart.
No comments:
Post a Comment