The A in SMA stands for “atrophy.” Atrophy means “to waste away.” My muscles are wasting away, and that can cause a lot of other problems.
Scoliosis? Check. I had corrective surgery for this when I was 7.
Osteoporosis? Yup. Healthy bone growth requires a certain amount of weight bearing, which I can’t do.
Arthritis? Yes, because of the osteoporosis.
I also have chronic migraines, not as a direct result of SMA, but partially because of being in a wheelchair.
Here’s a bit of background: I started getting chronic migraines at 16. For the longest time, I only asked my general practitioners about these. At that age — because I was a girl and having “girl issues” — they told me the migraines would probably just go away after a few years, when my hormones balanced out again.
Spoiler alert: They didn’t.
At about 18, regular pain meds like ibuprofen and acetaminophen stopped working for me. I tried a semi-holistic approach using M-grain oil, which works, but only if I can catch the migraine in its early stages. It wasn’t the best option. Then I went to another GP who gave me a prescription, but the side effects scared me, so I didn’t take it. I waited a couple more years.
In my experience, when it comes to chronic migraines or other chronic pain, general doctors don’t believe you. Specialists do, though it can be incredibly hard to get in to see one of those.
Long story short, I tried one other medication that knocked me on my butt — big old nope to that! Finally, I was referred to a headache clinic.
I didn’t know what my main trigger was until I was filling out my headache diaries for the clinic. I have triggers like the sun, heat, and stress, but we couldn’t figure out what the main one was.
As it turns out, I had been pinching off the occipital nerves on the back of my head because it was pressed against the headpiece all the time. I can’t hold my head up because I have weak neck muscles.
When you rely on the use of a wheelchair, especially if you’re in it for long periods of time, you know that seating can be a nightmare. But that’s a story for another time.
My neurologist at the headache clinic was brilliant and understanding. Most importantly, he wasn’t irritated by any of my questions. By this point, I had asked two doctors about medical marijuana. Both had refused to even discuss it. I understand that it doesn’t help everyone, but neither does “regular” medicine. This doctor made me comfortable enough to suggest it, and he actually decided that it was the best option to move forward with.
I can happily say that I am a medical marijuana user. It actually helps me with both arthritis and the migraines. And that’s a relief after so many years of dealing with the pain while searching for answers.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.