I’ve mentioned before that the alternative treatments for my CRPS have failed to work for me, which is why I continue to pop pain pills a couple times a day. Some of them just didn’t work for me and some of them aren’t options because of my body. I decided it was time to make a list and explain why my case is considered “exceptionally difficult” and why my current pain management doctor has decided that continuing to try them is torture and not worth it.
We’ll start with the two that just aren’t options. Some patients with complex regional pain syndrome have benefited from pain pumps and spinal stimulators. Unfortunately, I’m allergic to metal this includes titanium and surgical steel as well as nickel free metals. And oddly, hematite if it’s been magnetized. Since both the pain pump and the spinal stimulator have metal pieces that get inserted into the body, it’s been deemed a non-option for me. No one wants to risk anaphylaxis, including me. Or worse, it could do what my ears have done every time I’ve pierced them. I did better with titanium stud earrings than anything else, but I still had issues. It doesn’t begin with itchy ears, it starts with drainage. Two weeks after piercing my ears with titanium studs, the holes began to leak pus. When I took the studs out, I could push on my earlobe and get more pus out of them. It was bad enough that I had a doctor look at them to ensure they weren’t infected. We tried antibiotics (oral and topical) and they didn’t clear it up. Somehow, even though the studs only stayed 2 weeks, the holes have remained. I wore earrings at my wedding that were nickel free steel. I took them out after a couple of hours because I noticed my ears were starting to weep. So those two aren’t viable options.
Nerve blocks: To administer a nerve block to CRPS you have to find the nerve ganglion (group) most affected. You can’t just put a nerve block into the area where you experience pain, although I’ve tried it that way too. When you put the nerve block directly into my hip or hand where I experience pain, it increases my pain for days, but it doesn’t “go numb.” Over the summer we targeted a ganglion in my back, that was actually near my right kidney. My doctor had to stick the needle in my back and move it around until he found it. He knew he’d found it, when my toes curled and I stopped being able to breathe. I experienced a pain flare as a result of it and again it never went numb like it was supposed to. My doctor decided a second one would just be cruel and inhuman since I got zero relief from it.
Epidurals: I had more luck with the epidural than the nerve blocks. We did a lower lumbar epidural. My lower body went mostly numb and my pain decreased. I got out of the epidural room at 4:30 pm. At 8 pm, I took a pain pill because it was already wearing off. When we did the follow up, he told me I should have gotten at least 12 hours of relief and closer to 48 based on the amount of medication he’d given me. We discussed tripling the dose and trying again, but he talked himself out of it deciding the risk outweighed the possibility of relief. For the same reason we decided not to do a second one with the same dose because we were risking spreading the disease by shoving needles in my spine for a mere 3 1/2 hours of relief.
Steroids: We’ve done steroid injections directly into the hip and a nerve ganglion in my back and all it’s done is cause a pain flare. And sticking needles in the body can spread CRPS so, again it was decided the risk outweighed any potential rewards. Oral steroids are also a problem. They keep me awake, even the mild ones like Depo Medrol disrupt my sleep and not getting enough sleep causes me to start the day at a slightly higher pain level than if I get enough, so again the complications aren’t worth the gain.
Meditation: I was sent to see a specialist psychologist for 2 sessions to work on my meditation and relaxation techniques. It is minorly helpful. I mediate a couple times a day now, more if I’m in a flare. While I can slow my breathing, I can’t slow my heartbeat. I generally have tachycardia even without pain. I used to average 85 heart beats per minute, resting. Now that I have pain issues, it averages more than 100 beats per minute. One of the things we learned from gallbladder surgery is even under sedation I have tachycardia. I’d had zero stimulants for 18 hours before my gallbladder surgery. Yet, when they took my bp and heartbeat upon arrival, my BP was normal and my heartbeat was still 106 beats per minute. After I was sedated with anesthesia and Ketamine, I was given an injection of Valium, because my heart beat remained more than 100 beats per minute. After the valium kicked in, my heart beat dropped to 98 beats per minute and it was the lowest it got through out surgery and recovery. Essentially, I’m just one of those people that have a fast heartbeat all the time and pain has made it worse. One of the goals of meditation is to decrease heart beat rate which will help reduce pain. Unfortunately, I can’t reduce mine so meditation is only moderately helpful according to the psychologist I saw and that’s all I’ll ever be able to expect from it.
CBD Oil: CBD is thought to be the pain relieving chemical in marijuana. I find it helpful for treating my pain, but I’m allergic to the hemp plant and marijuana makes me sick. Same for cold pressed CBD oil. I found some hot pressed CBD oil and have been using it for the last month. I don’t find it as helpful as the CBD oil that makes me sick or marijuana. I’ve since learned that hot pressing the oil may remove the pollen I’m allergic to, but it also degrades the CBD oil. Which is probably why I don’t find it as helpful. My doctor’s first suggestion was 1,000 mg CBD oil. He’s since upped it to the 3,000mg. Or he said what would be better was marijuana edibles eaten about an hour after taking a couple benadryl. Since marijuana makes me incredibly sleepy, he recommended it for bedtime use. I haven’t done it, because the THC that causes the “high” feeling makes me feel like I have vertigo, which is a really horrible sensation.
Diet Change: I’m mildly allergic to chicken, pork, beef, dairy, and eggs. None of these allergies are strong enough to cause anaphylaxis, but they are strong enough to make me sick and upset my stomach. It’s really hard to get enough calories in a day when you remove nearly all sources of protein, sugars, and carbs. And I already struggle to get enough food calories in a day. So changing my diet to cut out carbs and sugars (what’s known as the inflammation diet) has been deemed problematic. And I find venison has a funky after taste that seems to coat my tongue and throat making everything I eat that day taste like it, so I haven’t added in venison to up my protein intake. Green beans and sprouts shouldn’t taste like venison ever, but they do when I eat the meat.
Acupuncture: I’ve done regular shock acupuncture with the needles in my skin giving a minor jolt every so often and I’ve used a tens unit. Both forms were unhelpful. However, I find the TENS unit very helpful on my knees and thighs when I’m in a pain flare and those muscles tighten up as a result.
Physical Therapy: I did three weeks of physical therapy. Then one day during therapy, I had a twitch appear in my groin. My therapist watched it for a few moments and then it moved to my sciatic nerve and I ended up kicking outward and hit him in the shoulder with my foot. He was nice about it, but that afternoon I got a call from the doctor, telling me physical therapy wasn’t working. I should be having fewer twitches and spasms, not more. Since I was having more and they were getting stronger, it was a sign that the therapy was doing more harm than good.
Nerve Pain Medications: Cymbalta is often prescribed for people with CRPS. It’s an SSRI that has the ability to calm nerves. Unfortunately, I can’t take medications that mess with my serotonin or dopamine levels. They cause me to stop sleeping, I’ve been on Cymbalta once for my anxiety and I slept so little during the two week period I nearly had a psychotic break. I was averaging just 15 minutes per night. So that’s out. Gabapentin made me suicidal and while Lyrica didn’t cause that, it did cause me to feel like my brain had been swapped out with someone else’s brain. Which is a really horrible feeling. I also had some other really problematic side effects, hence why I was taken off of it.
Ketamine: Ketamine helps me a great deal. Unfortunately, it’s illegal to prescribe oral ketamine in the state of Missouri for any reason other than a few conditions: depression and fibromyalgia. And my doctor who has extensive experience with the ketamine infusions says they are hit or miss. It might help this time and not the next; it’s an all day, multi-day procedure. He says in people who have it in their lower limbs, the procedure tends to cause a pain flare. Since I’m sensitive to pain flares based on comfort level while laying or sitting, it’s less effective when a pain flare happens because of the infusion and he doesn’t think I’ll get much relief as a result and he isn’t sure we can justify it. Plus, it’s tens of thousands of dollars per infusion, and my insurance won’t pay for it. Even if it wasn’t cost prohibitive, if we aren’t sure it’s going to help, I’m not sure I want to do it.
It’s for these reasons that I’ve had trouble keeping a pain management doctor or getting the quality of treatment I need. Missouri has a lovely thing where doctors can be fined or have their license revoked if the government review board decides that the doctor is prescribing too many opiates. It doesn’t matter that they are literally the only option for me, they count against my doctor. Oddly, my current pain management doctor has spoken out against opiates quite regularly. He isn’t a fan and I had some concerns when I switched to him. However, after going through my chart and talking with me, he said “I can see why you’ve had problems. We’ll have to do a few things to justify it to myself, but your former doctor noted you were going to be one of those patients that’s opiate only and he wrote that in his notes on why he asked you to transfer to another doctor. I’m going to torture you a little bit, to make sure he did everything right, but if you turn out to be an opiate only patient, I won’t kick you out of my practice, it is what it is and you won’t be my only CRPS patient that isn’t helped by the alternative treatments. It does happen more often than we’d like, luckily the opiates do help, because I have a few CRPS patients that nothing helps, even the opiates unless they are prescribed at really high doses of really strong narcotics and I have one that isn’t even helped by those. Unfortunately, since it’s your sympathetic and central nervous system involved, there isn’t a one size fits all treatment plan available.”
This means when I say I’ve tried every alternative treatment for my CRPS, I have. I recently found out about a new one that is similar to acupuncture (I think) that I’m going to talk to my doctor about in June. We had a brief phone conversation about it and he has concerns. He put off the discussion until June so he could read up on it. Since acupuncture hasn’t worked and has caused a pain flare, and he doesn’t know much about this other treatment, he wants to research it and make sure the risk of a pain flare isn’t greater with this treatment than with acupuncture. Pain flares aren’t just about an increase in pain for a few days, they have some serious risks; heart and GI damage, risk of stroke and heart attack increases dramatically during a flare, as does the risk of death and complications with the state of my mental health. They are to be avoided at all costs.