Cerebral Palsy and Pain Management: What I’ve Tried So Far
Moist heat/cold packs: These feel nice in the moment, but offer no lasting effects. Nonetheless, I have a heating pad plugged in next to my bed at all times, and various herb/grain packs in the freezer that I use both heated and chilled. Mostly, they are comforting and make me feel like I’m doing something to take care of myself even though I know it doesn’t really help.
Muscle rubs/sprays/liniment/lotion: Various brands, most of which give a cooling sensation, on various body parts. Again, they don’t do much. Every once in a while, I think I can feel my neck let go slightly, for a moment. I have also used them in combination with other methods.
Hot baths, hot tubs, hot springs: Yes, hot water is lovely. Yep, I’ve tried it with epsom salts and even CBD bath salts, and with deep breathing. No lasting effects.
Various OTC pain relievers: Don’t you love it when doctors ask, “Have you tried ibuprofen?” Why, yes. Yes I have. “Did it help?” No. No it did not. If it had, I would not have felt compelled to make an appointment and get myself to this office and talk to a doctor for fifteen minutes. The truth is, I’ve never been able to tell if NSAIDs do anything. They might do a little, sometimes? For me to really know, I’d have to do the exact same scenario two ways, one medicated and one not, and directly compare them. But the time space-continuum doesn’t allow for that. Is it really true that people can take ibuprofen and actually feel better?
Voltaren: prescription topical gel (designed for arthritis) on my knees. Nada.
Flexeril (cyclobenzaprine): This is a muscle relaxant I was prescribed for my neck, only meant to be taken for two to three weeks. I was uncomfortable with the idea of being on prescription drugs. Because it can cause drowsiness, my doctor told me to take it before bed. I did that once or twice and felt no different in the morning, so I put them in the back of the medicine cabinet. Months later, when I was having a rough neck-pain day, I decided to take one. I promptly spilled the remaining pills into the (wet and not particularly clean) bathroom sink, and that was the end of that experiment.
Physical Therapy (childhood and adult): I had PT as a young child, and again for rehabilitation after surgery. Since my CP gives me muscles that are both tight and weak, PT focuses on stretching and strengthening, especially my hips (and hamstrings and adductors and etc.). As an adult, I’ve been referred for my SI joint, knees, and neck. None of my pain has been an acute onset as a result of injury. My pain just happens. All the issues I’ve ever gone to physical therapy for are still there. That would lead me to the conclusion that physical therapy does not work. But it’s not that simple. A physical therapist’s job is to set you up with a program you do at home, supposedly multiple times a day (ha!). Sometimes I do the program consistently for a stretch of time, and sometimes I don’t. Most often, I get home and try to replicate what we did and find that I’m straining something else in the process. Then I go back the next time and adapt it, etc. If a therapist could visit my home every morning and evening, maybe there’d be progress…? Even when I do succeed, like in stretching and strengthening my traps, that has not resulted in any noticeable decrease in my overall neck pain. While that’s extremely disheartening, I can also say that PT is probably not making anything worse overall, so I might as well keep trying it. At least I feel like I have someone who is trying to help me. And it’s my cheapest in-person option.
Ultrasound: I’ve had ultrasound done on my neck and shoulders a couple times as part of a PT session. It is meant to give a deep heat to the muscles and increase circulation. It was lovely to lie on my stomach, with the headrest set at just the right angle, and have some prewarmed goo gently massaged into my neck. Sure, the deep heat was relaxing. Maybe if it were for an hour instead of ten minutes, and I could fall immediately to sleep afterward? No lasting effects. Also tried on the right glute area.
Pilates: I attended private pilates sessions for a number of years, even going twice a week at times. Did it help? I couldn’t tell you. I do know that I enjoyed having one-on-one time with an extremely knowledgeable and empathetic professional in a nonmedical setting. I can tell you that I became ever so slightly stronger and more flexible. But it was also during these years that the knee pain and neck pain appeared. I’m not blaming the pilates at all, just pointing out that it’s hard to measure improvement on the pain scale when new issues present themselves. I enjoyed being able to lie down while another person grabbed all the pillows and props I needed to be supported just so. I enjoyed being able to focus on a particular movement or muscle group. I enjoyed trying to apply various verbal cues to my body (“Imagine your pelvis is full of sand…”) and being cheered on: “Yesss! Yesyesyes!” As though, sometimes, I was able to do something well.
Massage: I’ve had several massages. I really enjoy the massage while it’s happening. I like that attention is paid to the palm of my hand and to my eyebrows, to muscles large and small. I like the quiet and the dark. However, I lament the whole process. Taking off my shoes and clothes, climbing onto the table, getting settled under the sheet. Having to turn from my front to my back in the middle of the session, on something raised high off the floor and narrower than a bed. And then, when I’m nicely relaxed, having to climb down off the table, put on my clothes and shoes, walk to the bus stop, stand and wait, climb into the bus, and get seated. Is any of the relaxation left by then? Not really.
Acupuncture: I only did four sessions of acupuncture. During the first one, I found it so stressful that I was supposed to stay still with needles in me that I could not relax. In fact, I think the effort it took not to move made my muscles tighten more. The next session I did a better at deep breathing and tried to relax. But I felt no difference. Repeat the whole process with clothes and table and bus from above. After two more tries, that was enough.
Feldenkrais / Anat Baniel Method: I heard about Feldenkrais from another person with CP who was enthusiastic about its benefits. It’s about movement, biomechanics, neuroplasticity. I gave it a good try–ten sessions. The woman I worked with had never had a client with CP before. I lay on a table and she moved my body and/or I followed her instructions. I felt heavier/more relaxed into the table when we were finished, but it never lasted. If it were actually affordable, it’s something I wouldn’t be against continuing. I think mindful movement can only be a good thing. Anat Baniel is something that branched off from Feldenkrais, and I did one session. Intriguing. Expensive.
TENS unit: I have only tried this a few times. I didn’t feel comfortable using it on my neck. I did not like putting the sticky pads on my neck, nor the pulsing vibrations, so it did not get a fair trial. I did not feel any benefits during or after the one time I tried it there. I then took it in to PT to be shown how to properly use it on my lumbar region. I have tried it a couple times there, but again, it’s such a process to use, with little to no effect.
Electric massagers: I have tried both a giant plug-in one with various detachable heads and a smaller, rechargeable one that looks more like a rubbery barbell. Sure, they feel nice in the moment. Then, for some reason I don’t understand, the vibration makes me feel itchy. No lasting release in muscle tension.
Supplements: Curcumin with black pepper, magnesium taurate. Curcumin, from turmeric, is an anti-inflammatory and black pepper aids in absorption. Took one bottle faithfully. No difference. Magnesium is supposed to help muscle cramps. Took one (or two?) bottles faithfully. Some people take supplements and do seem to notice a difference. I did not.
Weighted Blanket: Weighted blankets have become a much-beloved item for people on the autism spectrum, and for those with anxiety. And really anyone. They are calming and comforting and help people relax and sleep better. I’ve tried two, after much searching for blankets that are not polyester and do not contain plastic beads. I faced a conundrum when choosing the weight of the blanket (based on my size and weight). Would I need a heavier one because my muscles are extra tight? Or would I need a lighter one because my muscles are weak? For me, going lighter than the recommended weight would have been better because it’s already hard enough to change positions while sleeping. With added weight, it’s a true struggle. As far as results, I get too hot while sleeping to appreciate the blanket for most of the year. When I’ve tried it, I haven’t felt more relaxed or slept better. I do enjoy it for sitting and reading or watching a movie, after the work of getting situated under something heavy–but only in winter. I have also recently discovered that I like using it when I meditate–but only in winter.
CBD oil and tinctures: I tried one liquid from Green Mountain (hemp), and I couldn’t tell any difference. When a new dispensary opened downtown, I went in and tried their recommendation (they rolled their eyes at Green Mountain). It was Papa and Barkley capsules. Honestly, I don’t remember if it had a bit of THC with it or not. No noticeable difference. Then I tried Charlotte’s Web, the fancy famous one helping people with seizures, pain, and all sorts of conditions. You’re supposed to take it twice a day regularly, not just as needed. So I did. No noticeable difference. Most recently, I tried Humboldt Apothecary’s Inflammation Soother CBD, which does have a bit of THC with it. Made me feel a little fuzzy headed, but didn’t help the pain.
CBD lotions and creams: No difference. But I still keep trying different brands.
CBDa: I had not heard of this kind of CBD oil until the pain management doctor suggested it. Supposed to be different, better, more effective. From Circle Labs in California. Again, it’s taken 2-3 times a day, every day. Tried it for a few weeks (2023). No improvement, and quite expensive.
Cannabis: THC reacts on the body’s cannabinoid receptors which produces an anti-inflammatory effect. The first incarnation of cannabis I tried was cannabis-infused dark chocolate, which contained 10mg of THC, in 2019 or so. Although I cannot say I was completely comfortable with the effects on my mental state, physically it was quite something. My limbs felt heavy and relaxed and I don’t think I felt pain. I wasn’t aware of my SI joint anymore. I carefully put myself into a hip/adductor stretch, and my knee just kept going outward (stretching more than it ever does). I could turn my head from side to side without pain and it just kept going. My thoughts went thus, “I feel a lack of spasticity. Is this what people without spasticity feel like all the time? Everyone with spasticity should be able to feel this.” One second I felt totally out of it: “Ugh, I don’t want to do this again,” and the next moment: “This is amazing. I’m so glad I have the ability to do this again.” I lay down and my husband used our electric muscle massager on my legs. I was awed by the result. My muscles were so deeply relaxed they felt heavy/not quite there. Almost like a layer of separation between me and my body. My muscles felt like they were melting at the touch of the massager. I didn’t feel a single involuntary tensing of the muscles; it’s like they were incapable of tensing. My eyeballs felt relaxed. My brain felt relaxed. “Is this what people without anxiety feel like? Or just high people?” My body weight felt like it was so deep into the bed. Like nothing was being held back in tension. Nothing was tense–all was given over. That feeling lasted a couple hours before I started to come out of it. It’s like I could feel my right hip rematerializing inside my body. I felt woozy. Sleep wasn’t magically good, but I felt more relaxed the next day than is usual, and when I stretched I could feel my muscles actually let go. It even lasted a couple days. This may have been psychological in part–the knowledge that something finally did affect me, the knowledge that relaxation is possible. It lightened my mental/emotional load. I was interested to keep trying cannabis, to see if I could have some of the physical effects without the mental ones (this is supposedly what CBD can do).
I tried a half dose. It didn’t really work. I felt a bit out of it and woozy, without the positive part. I tried taking it right before I went to bed, so that I could sleep through being high but still get the relaxation. Didn’t really work. When I took a full dose again on a bad pain day, it didn’t have the same effect either. Some pain relief without the full-body letting go feeling, but with effects I didn’t really like. I’ve tried taking nibbles of the chocolate over a longer period to simulate something more like smoking. And I’ve never again had the experience of the first time. I don’t particularly enjoy the high nor the wooziness I feel coming off of it, so it remains an enigma that I’m not fully comfortable with. I’ve more recently tried vegan “sleep gummies,” and again, did not feel any lasting muscle relaxation.
Meditation: I don’t know where my incorrect idea of meditation came from. I always had this idea that you were supposed to sit there and clear your mind. Not think about anything. Well, I knew I couldn’t do that, so I never gave meditation serious thought. I did always enjoy the Final Relaxation Pose (savasana) at the end of my Yoga for the Rest of Us DVD. The guided body scan from head to toe, a gentle voice telling me to imagine soothing comfort flowing to each muscle group. Was I in less pain? No. Was it nice? Yeah. I’ve continued to try other guided meditations, both body scans and guided imagery. I’ve learned that no one expects you to maintain a blank mind. Your mind will wander and come back. That’s okay. That’s expected. Mindfulness is about being in the moment without judgment. The great thing about guided meditation is that someone is there telling you what to think about; your mind isn’t blank, but focused instead.
One meditation I found on youtube talks about the intention of kindness and compassion toward yourself, wherever you are. “And it’s okay if you don’t feel it. We’re just practicing.” You see, we’re just practicing. I can do that. Another one I love has a guy who says my body will relax in its own time, and in its own way. More than once, I’ve just started to cry. And once or twice, I’ve felt it. A little bit of floating. It’s actually a little alarming, except that I know everything is okay. I can sit here, now, and relax one side of my face and then the other. My eye socket, my jaw. I can feel my cheek droop. I didn’t know how to do that before. If I could apply that ability to my trapezius in any kind of lasting way, my quality of life would be much improved. I have not achieved a daily meditation practice yet, but it really seems to be my best option. It’s free. I can do it lying on my bed. And it takes as little or as much time as I want, whenever I want.
Myofascial Release: In the spring and summer of 2021, I did twelve sessions of myofascial release. Here’s why fascia is important, courtesy of Johns Hopkins:
Fascia is a thin casing of connective tissue that surrounds and holds every organ, blood vessel, bone, nerve fiber, and muscle in place. The tissue does more than provide internal structure; fascia has nerves that make it almost as sensitive as skin. When stressed, it tightens up.
Although fascia looks like one sheet of tissue, it’s actually made up of multiple layers with liquid in between called hyaluronan. It’s designed to stretch as you move. But there are certain things that cause fascia to thicken and become sticky. When it dries up and tightens around muscles, it can limit mobility and cause painful knots to develop.
Much like massage, I enjoyed these sessions, appreciated them, and found value in them and the knowledge, expertise, and patience of the practitioner. But with no noticeable or lasting effects, they were too expensive to continue with for long.
Low-dose Naltrexone (LDN): In June 2021, the functional medicine doctor I’d been seeing gave me the option of trying LDN for chronic pain. I looked over a journal article and decided to give it a try. It’s supposed to take a few months to notice any difference, but it can take six months or longer. Or patients can think they feel no difference, but then notice a difference when they stop taking it. I didn’t notice any difference, so after about eight months, I didn’t refill my prescription.
Steroid injection: In August 2021, following the labral tear and newly discovered impingement (FAI) of my right hip, I tried an ultrasound-guided lidocaine-cortisone injection. With the lidocaine, I should have felt relief right away, but did not. In fact, the experience was painful and uncomfortable for about a week afterward. This could be due to having to go through tight muscles and scar tissue to reach the correct spot. Or it’s possible that it wasn’t the right spot at all. In April 2022, I had another steroid injection in my hip, as well as one in my low back for sacroiliac joint pain. Neither helped.
Gabapentin: In June 2022, I reluctantly decided to try gabapentin. We started at 100mg three times a day, and I worked my way to 600 mg 3x/day, and felt no difference. Many people find relief up to 1000 mg or more, so I could have continued, but weight gain is a common side effect that I experienced. And I think I was starting to have moments of unsteadiness that were unpleasant. It’s hard to know what was really a side effect of the medication, and what was just a CP thing. I tapered off of it in October 2022.
Tizanidine/Zanaflex: After trying gabapentin, I’m getting over my resistance to medication/fear of side effects, and I asked to try something else. The pain management doctor had suggested duloxetine, but that is only available in a gelatin capsule, and I do not eat gelatin. His next suggestion was tizanidine, which is a muscle relaxant that is similar to oral baclofen, according to what I read. They are tiny, cute little pills, again taken three times a day. Oh, how I wanted them to work, to feel some kind of difference. But after a few weeks with no change, I gave up any expectation of relief. Since these are an “as-needed” type of medication, I was able to stop taking them without having to taper off.
Osteopathic Manipulation: In early 2023, I made an appointment with my PCP, but she was out and I saw another doctor. Though I was there for something unrelated to CP, at the end of the appointment we were talking about my disability, chronic pain, and the doctor offered referrals to acupuncture and osteopathic manipulative therapy, both through that same hospital. Amazing! I thought. Why, in the last eleven years, had my PCP never spoken of these options? I didn’t end up doing the acupuncture, though I am willing to give it another try, but I did to the osteopathic appointment. I wrote about my experiences here. I did really enjoy this; it’s like massage, but more. I also really like that it counts as a regular doctor’s appointment, so it’s a low co-pay, but because it’s body work, I get a 40-minute slot instead of a 20-minute slot. So, it’s longer than a PT appointment, for the same price, but it’s all passive on my part, so I don’t have to do any work. Win-win! The only downside is that the appointments were only once a month instead of weekly. I never noticed any lasting effects, but the doctor herself noticed. My ribs were less compressed, for example. I saw her four consecutive months, then had to skip some. I had a total of six appointments in 2023, and I want to seek something similar but more often. I recommend this one if it’s available to you, even though there wasn’t any pain relief.
Savella: This is one of three medications approved for fibromyalgia. The other two are Lyrica and Cymbalta (duloxetine, an anti-depressant also often used for pain, which was already suggested for CP, but there’s the gelatin issue). With all my various symptoms in addition to the obvious CP-related ones, it’s easy for me to wonder if I have fibromyalgia. My PCP was willing to have me try it. It’s another medication you start on slowly and build your way up. I did that in 2023, stayed on the full dose for a month, and. . . no change. It takes several weeks to taper off of it, which I did in 2024. So I must acknowledge that I probably don’t have fibromyalgia. Which is good, of course, but it’s also nice to have names and reasons for things.
Note: My pain management doctor has discussed both botox and baclofen. Both of these are commonly used by children and adults with CP, though I think more in the moderate to profound range. The physical medicine and rehabilitation doctor I followed up with did not feel that my level of spasticity was enough to warrant baclofen or botox. The mild spasticity isn’t what’s causing the pain. [Update forthcoming!]
Further Note: Most of these one-on-one sessions with any kind of practitioner are not covered by insurance and the cost would be prohibitive for the vast majority of Americans. If cost were not an issue and I could be teleported with no effort, I would have daily pilates and massage sessions.
Current as of March 2024.
What Happened to Your Legs? 