My friend, Mike, hopped out of the car with his usual, “Hold on, don’t move, stay right there” as he spun around to open the passenger back door and grab the wheels to assemble my wheelchair while I waited in the driver’s seat. I prayed a silent prayer: Lord, please help Pain Specialist #3 understand me and see what’s wrong and know what to do about it. Mike came around to my car door with my chair assembled. I transferred less than gracefully to my chair and he said, “You in?” “Yep,” I replied back as always. He carried my 35 pound laundry basket of medical records as I made my way through the front door of the doctor’s building.
Once inside, the receptionist began asking me if my appointment was today. “Yes, it was. Dr. Z had to cancel my appointment for last week because she had to be out and the woman who rescheduled me put me in today at 9:30am.” He looked more closely at his computer. “Let me make a call.” Oh no. Don’t tell me they won’t let me see the doctor today after all the effort it took just for me to get up and moving this morning! My intestines started to feel nauseous and growl. No no no no no. None of that either! I should figure out where the bathroom is before I have an emergency. The past few weeks had already torn up my guts and I wasn’t reacting well whenever I had a doctor’s appointment. White Coat Syndrome. I took a few deep breaths and looked around at the other patients waiting; one man was wearing a sling on his arm and his head was also well-bandaged. Another was an elderly woman with salt and pepper hair using a blue rolling walker, her back was hunched a bit just below her neck. I focused back on the receptionist. “There are no extra spots open today. Do you still want me to put her in? No, she is here right in front of me. Okay, I will.” He hung up the phone. After what was another 10 minutes, I had more papers to fill out while I waited to be called. Mike ran to the car to grab my neon pink forearm crutches so that if the doctor wanted me to walk or weight bear, I could give it a good ol’ college try.
The new patient forms described types of pain and I had to check off which ones I experience: burning, coldness, pins and needles, numbness, itching, weakness, electric shocks, crushing, stabbing, shooting, tingling, achy, dull. With few exceptions, I kept that pen busy playing tick-tac-TOE as I put my X’s in a row indicating I had 90% or more of the symptoms listed. Oddly enough, I didn’t feel like I was “winning” the game.
Mike waited patiently in the lobby while I sat in the patient room arranging my medical documents in case certain test results or doctors’ notes were needed. I also had a two-page list of questions.
Dr. Z entered and promptly sat down on a stool, looked at me directly and said, “Hello. Sorry I’m late; I was just reviewing your medical history and you’ve got a lot going on. So what do you want me to do for you today?” After I picked my jaw up off the floor, I said, “Well I’ve never had a doctor ask me that! Thanks for asking!” The fact that she actually looked at my medical record also impressed me greatly. Do you know how many doctors I’ve seen don’t read any of it? I hear the file folder slide against the door’s attached file holder and 10 seconds later the doc is in my room and I roll my eyes to myself saying “Why do I bother putting this info together and filling out their forms when they won’t read a lick of it anyways?” I told her “I’d like to keep all treatment options on the table at this time. I saw another doctor, and I felt she was competent, but she didn’t want to start with anything beyond biofeedback and Lyrica which isn’t going to give me more immediate relief. I’ve had burning pain for 10+ years and I’m not unwilling to look into more invasive options if it means we can control the pain better so I can get back to walking more. I want to know what my options are and the pro’s and con’s of each. First, do you think this is CRPS or could it be something else?”
It struck me as interesting in the moment how two doctors can say essentially the same thing, but HOW they say it makes all the difference in the world to the patient. She almost used the exact same words as Dr. F when she told me, “No, I believe you have a classic case of CRPS, but there are options for treatment” yet she looked me in the eye, engaged me, and wanted to know my thoughts. This changed the entire feel and dynamic of the patient-practitioner relationship. Dr. F left me with the impression she was just ready to beat it to the next patient (perhaps one who didn’t have just Medicare and Medicaid), but Dr. Z looked relaxed and personally attentive, and she didn’t interrupt me when I spoke unless it was helpful to do so.
I removed my Darco boot post-op shoe so Dr. Z could see my left leg, a painful endeavor even on the best days, revealing a sock with the toe area cut off, my tootsies sticking out. They were a funky color, as is often the case. She said, “It’s okay, I probably won’t need to touch your leg.” I probably smiled as the Hallelujah chorus began playing in my mind’s jukebox and I relaxed a bit more. No needles running down my legs today – a reason to rejoice!
Dr. Z and I discussed every treatment option I’d found online and she added a few of her own. “There are topical creams you can get from a compounding pharmacy that combine multiple medications and that might be helpful if you can tolerate rubbing them into your skin. It may also help to use the cream before you put your compression garments on first thing in the morning.” Then she asked me what insurance I have. None of these compounded creams are covered by Medicare or Medicaid. The price without insurance? A few hundred dollars. Ouch! So due to cost, the creams are on the back burner. Sad that something so simple and potentially helpful has to be nixed so quickly due to money issues.
Next up, she told me about a few oral medications including a new opiate called Nucynta which works on nerve pain but it’s claim to fame is that it doesn’t cause constipation. She couldn’t promise it would not cause constipation in me given how my body works, but said it was much safer to try than any of the others in my case. This may be an option and she believes it’s covered by Mcare and Mcaid. She also said she felt I may be a good candidate for a baclofen or pain pump in the future, especially given that baclofen works pretty well for me and I’m taking such high doses daily.
Out of curiosity, I asked her about hyperbaric oxygen therapy but she said she doesn’t believe it is effective or at least there isn’t much decent research out on it yet for CRPS even though it works great for wound healing. It also would not be covered by Mcare or Mcaid.
In terms of the lumbar nerve blocks, she’s ready to give it a go and doesn’t see any harm in it. “Do these nerve blocks cause any nerve damage?” I asked. “No, it’s not like an ablation; they are just putting numbing agents like lidocaine in there to calm it down. The only risks are what you’d normally have with a needle – risk of infection, soreness for a few days.” She told me that in her CRPS patients she does find they are often significantly more sore in their backs than other patients who don’t have CRPS, and she suspects it is due to the CRPS somehow. She said it cannot cause me to flare up in my leg. Not sure I believe that from what I hear from others online who have CRPS but I guess that’s a risk I will decide whether or not I’m willing to take on my own. If I decide to go with the nerve blocks, I can get it done in the next 2-3 weeks.
She brought up ketamine treatment and said she felt that this too might be helpful to me and that I’d be a candidate for it. That’s before I told her about my mental health history. I’ve read a bit about the ketamine infusions and ketamine comas. In the USA they do two types of ketamine treatments; one is internasal ketamine you huff from a sniffer sprayer thingy. The other is an infusion through a line and the treatment can last a few days to weeks. In the USA they don’t do the ketamine coma, believing it too risky, and it is quite risky; some people don’t wake up, others may do fine, I heard of one lady who went partially blind, etc. To get that kind of thing done you have to go to Mexico. Anyhow, ketamine is some high-powered stuff and it makes most people hallucinate if it’s at a high enough dose. So I told her about my hallucination history and that it’s under control now through diet but that I feel like if my body gets too out of whack I could have problems. I said, “If I do go that route in the future, and I do want to keep this option on the table, I feel that I would need close mental health follow-up to make sure everything was okay while doing a treatment like this.” She agreed and said given my history it could make me psychotic short-term. The internasal treatment would affect my mind for “only an hour per dose”. I thought “An hour of psychosis is a really really long time…especially every day” but I didn’t say anything. The infusions work very well, and they can be done in Winston Salem by Dr. James North. I remember his name because this was the doctor my orthopaedic surgeon wanted me to see originally but he does not accept Medicaid and therefore I cannot afford to go. The infusions aren’t done anywhere else in North Carolina that Dr. Z was aware of at this time. Medicare and Medicaid will not pay for the internasal ketamine treatments either, but she said by comparison it’s more affordable at $70 for a 3 month supply of the medication. So it’s an option but not my first inclination even though she says it does seem to work surprisingly well for most CRPS patients. She certainly spent a good deal of time explaining it to me I thought.
Then I had some more CRPS specific questions.
“What the difference was between allodynia and hyperalgesia?” “Allodynia is my hypersensitivity to touch and to thing that should not hurt, like the wind blowing on my legs or someone gently touching me or the water in my shower. Hyperalgesia, however, is a pain response to something that should be painful, like a little pin prick, but the pain is experienced as much more painful than it should be for a little pin prick.”
We talked about bone loss and I asked what I should do to prevent it when I’m having trouble weight bearing and also how I’m going to increase weight bearing without breaking bones in the future. “Well, that’s a hard one to answer. I’m not sure. The CRPS causes your bone density problems, and it helps to keep weight bearing as much as you can so you don’t lose more bone but we need to do some testing to see just how bad the bone loss is at this point and whether or not you have any active fractures.” I asked about bone growth stimulators but she said that was an ortho question. Unfortunately my ortho didn’t know either. So much for that!
She didn’t know about the cause of the blisters and skin breakdown and didn’t say she was familiar with it being directly linked to CRPS but said, “CRPS causes changes in the circulation and blood flow and you’re not getting good blood flow to your tissues so that can make healing take longer and leave you open to more tissue injury.” I told her that the blisters came before the superficial hot hot hot burning pain in my skin that feels like the match under my toes and that when it got the worst on my left leg, I would sometimes start to feel the burning also on my right foot toes like it was trying to jump to my right foot too. “There is a lot of mirrored pain in CRPS. That’s why we want to do all we can to keep it from mirroring to the other side. You will probably get crossover pains like that from time to time; very typical.” She also said the pains that feel like stabbing, like I’ve broken something all of a sudden or been seriously injured when I was just standing still for a few minutes are common with this disease. Not sure whether or not I was supposed to feel encouraged – my abnormality is normal in its abnormalness.
Though my compression stockings are more torture devices than anything else at this point, she said I should continue to wear them and they often help with desensitization as well. I told her I was having a lot of pain getting them on. She asked why. “That combination of the fabric squeezing my leg while I also have to drag it across my skin is just about intolerable. It really makes me hurt bad.” “I can see that,” she said, nodding with understanding.
I was quite concerned about the dystonia in my left leg, the fact that I tell my foot or leg to move and it’s stuck, not because the muscles are always tight, though they can be, but just because for some reason it won’t move…I concentrate really hard and that just seems to make it all worse. The dystonia goes through ebbs and flows, some weeks it’s really bad and other weeks it’s still a problem but I can move more. My muscles twitch and my legs shake at times and I cannot control it. I was afraid it could spread to other parts of my body; I just didn’t know. For this she had reassuring words, “It tends to just stay in the areas affected by the CRPS and not travel.” I realize I’d be in hot water if I got the dystonia in my right leg like it is in my left…I’m not sure how in the world I would walk, as my gait is all kinds of messed up now as it is.
Dr. Z did mention nerve ablations which I felt more hesitant about. She said that after an ablation the nerves will grow back. She told me about how the procedure is done. I said, “I have heard of ablations and sympathectomies gone wrong and the nerves (in the case of ablation) growing back more painful.” She said, “This is rarely the case. Sympathectomies aren’t in the same category as ablations. Sympathectomy means cutting the nerve at the top, and ablations are not permanent.” I said, “I feel like it’s counter-intuitive to fry or damage the very thing – the very nerve pathway – that, in 10 years, science may use to heal the disease. It’s obviously this very pathway that’s malfunctioning but *shudder* I just feel intuitively uneasy about that.” She respected my opinion, and I appreciated that.
So Dr. Z has won my vote and I plan to keep her as my Pain Specialist. The third time really was the charm. I’ve decided I do want to proceed with biofeedback at Dr. F’s office but I am not sure whether their practice will allow me to be enrolled in biofeedback while I have my care managed by Dr. Z, who also happens to be much closer to my home. I’m waiting for return phone calls to get biofeedback started and follow up with Dr. Z on the nerve blocks and continued treatments.
Being overwhelmed with options is hard but being overwhelmed without options is much much harder. I’d rather dig through research studies and ask others with the same disease many questions to decide what treatments I’m willing to accept the risks for than spinning my wheels every day believing I’ve done everything possible to improve my situation with no effect. I’m grateful for good doctors who “get it” and aren’t afraid to proceed with treatment while also informing patients to help them make and feel sure of their own decisions.
Good night, world.