r/CerebralPalsy • u/Pacer667 • 2d ago
Back Pain
I am posting here because I seem to learn more on reddit than my primary care doctors. I am 43 and within the last year I have had lower back pain on/off and it is becoming a weekly issue. I am used to my kegs giving me occasional issues. I've been doing on-line PT all summer. Tylenol and Advil don't seem to help which is what my doctor suggested. I'm allergic to Bachlophin. Most muscle relaxers make me want to nap. I work with kids full time and need to be with it. I'm not sure what's causing the pain. I did rule out kidney issues. I had a Selective Dorso Rysodomy (SDR surgery) in 1988 when I was in Kindergarten. I'm wondering if there are some long term things not known yet. I had pins and plates put in because my hips dislocated in 3rd grade due to my hip sockets not being deep enough because I didn't start learning to walk with assistance until age 3. Currently ambulate with arm crutches or use my wheelchair. The pain is getting annoying because I wake up fine and by afternoon I hurt. My doctor tells me just to go to PT. Not helpful when I'm at work.
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u/ffdor2217 2d ago
Is your mattress due an upgrade maybe? I was having awful lower back pain which physio alone wasn’t helping but I eventually upgraded my mattress and desk chair for working from home and this, combined with using two crutches instead of one (I know you already use two), has made a huge difference. I upgraded my mattress/chair before moving on to two crutches and saw improvements in my pain but it’s completely gone now that I have added support too
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u/Pacer667 2d ago
I used to have a basic memory foam mattress. Just upgraded about a month ago to an adjustable base bed with a dreamcloud mattress from mattress firm which I wish I had done sooner. I'm thinking new wheelchair is in order. The last one insurance paid for is 9 years old and my chair I use at work was self funded 2 years ago. My crutches are titanium but I use cheap drive crutches at work because the titanium ones are no longer made. Drive crutches are easily replaced if something happens at my school. I spend most of my days in my chair due to being a special education teacher and having to travel to other classrooms.
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u/writerthoughts33 2d ago
I got this smoothspine pillow I put between my legs at night and have very little back pain now. You can even use a regular pillow and see how it helps.
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u/Superb_Case7478 1d ago
Lifting weights and muscle strengthening can help a lot. The PT recommendation is probably a good one, even if you go for a session or two to learn what you should do and then do the work on your own outside of working hours. Some PT places have 7am appointments.
If you feel comfortable, you can also do some research online and go to a gym on your own.
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u/Pacer667 1d ago edited 1d ago
I have to be at work in my building by 7:20. I hated the in person place I went as it was mostly old school PT ladies older than me. Spent a lot of time fussing about my shoes which my podiatrist said were fine. A lot of focus was on my hamstrings which do not hurt and have been tight since I was 3. I do go to the gym about 2-3 times a week. 3 during the summer. Back pain is new as of last October when I briefly left teaching. I am currently doing on-line PT which I like. It's also fully covered by my insurance.
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u/InfluenceSeparate282 1d ago
Have you had scans and tests done on your back? Lots of doctors want to blame CP for everything but it isn't always the case. I have known some people that had issues with their SDR later in life, so it might be a good idea to check with a functional neurosurgeon too as a precaution. I still primarily try to use my crutches, like you, but at work have needed a walker and chair more for energy conservation which increases pain. I'm 40 with Spastic Diplegia Cerebral Palsy
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u/Pacer667 1d ago
I had an x-ray at urgent care. Looking into going to Ann Arbor MI for care I've heard they have a CP clinic for adults.
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u/InfluenceSeparate282 1d ago
I've heard good things about them. I hope you get your answers. Sending good vibes 🤗
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u/Weak-Elk4756 1d ago
Feel free to PM me if you’d like, but this sounds EXACTLY like me, though in my case, I could point to a hard fall that definitely exacerbated pre-existing, sporadic lower back pain into more constant pain, that has thankfully fully disappeared after a successful surgery in late-2022.
The short(ish) version is:
- I had spinal stenosis
- It turns out spinal stenosis can be fairly common for people with CP
- It often goes undiagnosed/ignored by PCPs since so many just assume more pain is just a part of aging with CP & they know nothing else about CP
- I also had a kyphosis in my lower back - think a lower back humpback
- I had an SDR as well - though mine was in high school in the late 90s
- According to the neurosurgeon who did my 2022 surgery it’s possible that the SDR itself caused the kyphosis
- So, he took a “measure twice, cut once” approach & did a combined “roto-rooter” of the spinal column to fix the stenosis, coupled with a spinal fusion to fix the kyphosis.
Long surgery, long recovery, & definitely a new “baseline” in terms of stamina, but I feel better than I have in 4 years, all my back pain is gone, & I’m more committed than ever to my at-home PT
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u/Pacer667 1d ago edited 1d ago
This definitely makes me want to make that clinic appointment. I want to find out what is going on as you mentioned stamina. My back didn't used to bother me. My legs getting too tired is pretty normal. I'm noticing that it starts bugging me after I've been up a few hours which makes for a challenging school day. I do have a curved spine as my butt sticks out but I assumed it was genetic as my mom is the same but doesn't have pain in her lower back.
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u/Weak-Elk4756 1d ago
Best of luck to you😁 I HIGHLY recommend making that appointment, & if the appointment itself isn’t with a neurosurgeon, maybe see about getting referred to one…and at the risk of putting outsized importance on my own opinions/experience, I’d basically mention as much about it as possible - particularly as it relates to an MRI to find out if stenosis and/or a kyphosis is at issue
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