Quick note: I owe you all updates on the Banjo, among other things, and I have been slacking on returning emails as of late - I have been dealing with too much pain to put a lot of focus into these the last couple of months. I hope you all accept my apologies and know that I will be updating as I am able.
I spent hours last night prepping for today's appointment with "Dr. Pain." I went into this excited, but I wasn't looking for a miracle. Really, I was looking for an improvement in my daily life, even something small, since I wonder at times how much more pain I can take. I gathered up a pile of medical records, ran to Kinko's even though I was hurting terribly last night, and made copies of everything I thought would be pertinent to my pain management plan. I then scoured through the pages of notes from the EDNF conference and typed up all sorts of tips and treatments I had learned about, including notes and credentials on each of the wonderful people that spoke and key points from their lectures. I highlighted random sections to reference while talking to the Pain Doc. Lastly, I included a few pamphlets on EDS from EDNF. I wanted to be ready for any questions he might have, and since this pain clinic offers many forms of treatment, I wanted to be sure to research all of them beforehand so I had an idea of the things we might discuss. The notes were mostly for myself, but they were important points to talk about with Dr. Pain, and also what I thought would be important notes for him to have.
When I arrived at the pain clinic today, I was greeted with a smile by the receptionist, filled out a form with Xs and Os and triangles marking where my current pain was, and joined the rest of the patients in the waiting room. An hour later, I was finally led back to my room by the nurse, who coincidentally shared my name and commented that I didn't have the worst medical history she had ever seen, but I certainly did not have the best. She comforted me with her smile though, and I was still amped to meet the doctor.
A short while later, Dr. Pain entered the room. He seemed nice, gave me a hand-shake and mentioned how "great" I looked. He quickly looked over my chart and noted how young I was and then "got down to business."
The next words out of his mouth, "Ehlers-Danlos shouldn't cause pain."
Well, yes, he technically is right. According to Dr. Francomano, "EDS predisposes [a person] to certain kinds of pain, but DOES NOT cause pain itself." However; the former part of the sentence certainly holds true...and PAIN is involved. Of course, Dr. Pain probably isn't really familiar with EDS, and so I kindly tried to explain to him what I have learned about EDS, what I personally deal with, and why my doctors have sent me to a pain management clinic. I handed him some pamphlets and told him I was really glad to be in his clinic and how I was hoping he might be able to help me out with the pain I live with.
The three important words from that first encounter: "tried to explain."
Dr. Pain wanted nothing to do with my explanations, my personal struggles, my life with Ehlers-Danlos Syndrome. Dr. Pain grabbed the EDNF pamphet, browsed it for a split second, then tossed it on the table. He wouldn't take any other pamphlet/papers. He wouldn't look at any of my notes or highlighted questions, even though I asked him to. He grabbed a chair across the room, sat without making eye contact and told me that he didn't think there was much he could do for me.
He asked me why I didn't complete college, and didn't acknowledge my response. He then, very condescendingly commented on the fact that I have been on disability for a while then alluded to the fact that didn't think I should be on it. (All of this, while he doesn't have any idea what my life is like on a daily basis, no idea about POTS or what it is, and no concept of the problems I have physically.) He asked why I was told I have bipolar disorder and then commented that I "seem fine." It was almost as if he didn't believe me when I talked about my bipolar disorder and PTSD, then he just got quiet at the mere mention of childhood abuse. He then profusely apologized for said abuse, but continued to question why I wasn't "acting like I had bipolar disorder." When I explained that I have been in treatment for an entire year this go-round , and that I am happily stable on my medication (trust me, there have been times where I have been very unstable) and therefor more ready than ever to start working on the physical side of things, he brushed it off like I hadn't even spoken a word. He then told me that I must stay in psychiatric treatment. (What?! I told him I was happily in treatment - wasn't he just the one questioning my bipolar disorder in the first place?)
While remaining cordial through the whole visit, Dr. Pain was almost ambivalent toward my pain and symptoms. One minute he was mentioning the medicine he wants me try, the next he was telling me that he is concerned I will become addicted to pain meds and that he doesn't like the idea of putting me on narcotics (though I am already currently taking them), and that my bipolar disorder makes it more likely. I mentioned to him that EDS patients often struggle with this, but treating the pain is important and my psychiatrist even has agreed that I have more depression due to the pain. Crying every night from back pain definitely has an effect on my mood. I also attempted to tell him that I don't like taking narcotics, or drugs of any kind, and am trying alternative treatments too, but I really don't know what to do because I hurt so badly. If we found something less potent, I am certainly open to anything. I didn't come to the pain clinic for drugs. I came to ask about drugs, trigger point therapy, prolotherapy, needling, etc. Of course, I couldn't get a word in edgewise about any of this.
The next words he utters are about the fact that I look great, got dressed this morning and did my hair and must not be in much pain (quite the contrary!), and then tells me he is putting me on Fentanyl patches and wants me back for trigger point injections, and for break-through pain from things like subluxations and dislocations I am to take an inbuprofen (Really? An ibuprofen??). First, every patient in the waiting room got up, got dressed, and did their hair - I looked all around me while sitting for an hour and not one person was in their pajamas. Second - Fentanyl patches?! This from someone who doesn't think EDS patients deal with pain.
I, again, got out the stack of papers I had brought and asked him to look through the notes from two of my favorite doctors - my geneticist from Johns Hopkins, Dr. Levy and a hero in the crusade for EDS treatment and research, Dr. Brad Tinkle. During the conference, Dr. Levy had mentioned the idea of treating EDS with a "cocktail" of things to control muskuloskeletal pain, muscle spasms, depression, sleep problems, etc. Dr. Brad talked about this as well, and mentioned great ideas for drug therapy, but also integrative therapies, the importance of staying active, and a few other very important facets of treatment. My ONLY desire for this appointment with Dr. Pain was to discuss some of these options, with the focus being mostly on the drug end of things since this was a Pain Clinic, and to hear his thoughts. I never got the chance.
Dr. Pain walked out of the room to end our session while I was mid-sentence. I managed to get him back in the room to answer a question about Prolotherapy, but that was it. I never even got to mention Dr. Brad or Dr. Levy's great information. I left with every paper and pamphlet I came into the clinic with, plus a urine cup to drop off on the way out for drug testing, and a prescription for Fentanyl patches. Dr. Pain was in the room for no more than 5 or 10 minutes.
So, my 10 recommendations for visiting a pain clinic:
- Do not get up, get dressed or do your hair.
- Do not "look good." (What does that even mean?)
- Do not have bipolar disorder.
- Forget having the doctor talk with you about YOUR concerns.
- Don't smile. It makes them think you aren't in pain. It doesn't matter if you try to be a cheery person in public. This will only count against you.
- Do not plan to discuss cocktails. Even the non-alcoholic kind.
- Do not think of mentioning Dr. Brad or Dr. Levy.
- Ask for Fentanyl patches when you "look good." Apparently you will get a prescription.
- If you come in with notes and are prepared, the doctors will call you "smart." Until today I didn't know, but smart people don't have pain.
- Bring tissues and good music in your car. You will need the tissues for the great cry you have when you leave the pain clinic. You will then need the music to cheer you up.
Ha! Of course, this isn't news to any of us. I think most EDSers, me included, have struggled for years with doctors that don't listen and those who ignore most everything we have to say. It certainly is frustrating when you see a light at the end of the tunnel, and find out that it was just your imagination. The thing we have to remember, we are always our own advocate. We have to take responsibility for our health care, and there isn't one solid answer on how to do things. We can pick and choose as we learn, and hopefully there really is a light at the end of the pain tunnel...it just might be a little further down than we planned.
I am really troubled as to whether or not these Fentanyl patches are the next best move. One problem with me and pain meds are the horrible side effects. The chronic constipation caused by pain meds has landed me in the doctor's more than once, and I have been on a mission to find something that actually works without causing me any more pain than I already deal with. These patches might cause less constipation, but no telling for sure. I am really looking forward to the trigger point injections, but I am leery of this path for the drugs. I have decided to start them just to see if they allow me any relief, because I really am at my boiling point by the end of the night, every single night. I have started on a low dose, a 25 mg/hr patch. Each patch lasts 3 days, and it is the equivalent of taking 5 or 6 5/500mg Vicodin a day, which is about what I am at right now. I am on a two week trial of this drug, and I will do more research between now and then, as well as see how my body responds to it. And, yes, the adhesive on the patch has already caused irritation and redness and is itching like crazy. I have to talk to my PCP about whether or not to continue the Flexeril, since Dr. Pain walked out of the room before I could ask. I am still working to find standard and alternative treatments, and am going to be searching for a new pain management team as well. I will go back to this clinic for the time being, as Reno is small and there aren't a ton of options, but I am not one to stick with a doctor that I don't like. For now, Dr. Pain it is. And, who knows, maybe he may help take the pain away.