I am almost completely bedridden. I am too weak to manage my own hygiene tasks, especially my hair.

I have chronic allodynia pretty much all over my body. My scalp has been a source of excruciating pain in the past and I am trying to find ways to manage my hair now without causing pain flares.

I have shoulder length textured hair ranging from types 2b-3a mostly. So heavy waves and some ringlets. Very very thick and tons of hair.

In the past I have tried a short bob/long pixie, and a couple of other lengths in between. Every time I cut my hair, I have a horrible time with allodynia. Like 8/10 pain, chronic migraine, intractable (can’t do anything about it at all).

I’m not able to take NSAIDS such as ibuprofen and I’m allergic to acetaminophen. My only rescue meds are sumatriptan, lorazepam, and emergency toradol injections to help me stay out of the hospital. So pain management options are very minimal.

Currently I use a sleeping bonnet and satiny pillowcase to help prevent quite as many tangles. However I still end up with gnarled mats that cause a lot of embarrassment and shame. I can’t take my bonnet off in front of anyone anymore, not even my partner, because I’m so self conscious.

Last time I tried to detangle my hair myself, I had PEM so bad that I couldn’t stand up for about a week. A friend tried to help detangle and only made it through about 30% of my hair before running out of energy. That took about an hour of small sections being soaked in conditioner and gently detangled. She does have curly thick hair herself and was very gentle and did a great job. It was just too much.

I know a lot of people talk about getting an undercut but that isn’t where the majority of my worst tangles are. For some reason the worst is toward the top back of my head, just under the top layer.

I am terrified of cutting my hair short bc of the pain associated. The way short hair easily changes direction on the head puts pressure on the hair follicles and I can’t stress enough how horribly painful it is.

I thought if I were to shave my head, at least the hair can’t be constantly shoved one way or another and creating new tension and new sources of nerve pain.

But my partner is struggling to understand why I see this as a possible solution, but am not willing to just cut it shorter “to a more manageable style.”

So I’m here asking if anyone has any better ideas?? I’m desperate to not have a helmet of matted curls. 🙏🙏🙏

Cross posting to the curly hair sub.