My neck, my legs, and my pain levels
In December, I wound up with what we figured was a pinched nerve. One of my healthcare providers told me this was just unprocessed trauma showing up in my body. It took me switching to a new primary care provider who also has EDS for my neck issues to be taken seriously.
I had an MRI on April 1st, which showed that I now have two bulging discs in my neck.
Complicating matters is that it’s taken FIVE MONTHS for my insurance to agree to cover a medication for my Still’s Disease. I don’t have it yet, but hopefully I will this next week. They don’t want to cover this medication because it’s expensive. It’s also one of only 3 medications that treats this rare disease. I’ve already been on one of the others which stopped being as effective for me after having been on it for nearly a decade.
The extra inflammation in my body because of not having my medication is making my neck MUCH worse, to the point where the discs are booping my spinal cord. This happens occasionally, but more often than before. On top of the nerve pain this causes — which can’t be touched by any pain medication — my body is less coordinated than normal. I drop things a lot and run into things more often. The nerves in my back begin to fire all at once if I get overheated or do too much without taking a break, especially if I’m using my arms a lot. Like I said, there’s no way to attack that pain with medications.
The only way out of it is through. Sometimes that means sitting down for 5 minutes or writhing in pain for an hour.
Surgery isn’t really an option – yet
Because of having CCI and hEDS, surgery to fix this won’t fix the underlying issue. I also have Mast Cell Activation Syndrome, which reacted so badly with general anesthesia when I had top surgery that I nearly died.
So, surgery isn’t an option… for now. It won’t be until this gets completely unsustainable. And that’s if I could find a surgeon who would be knowledgeable about my conditions and willing to take on the risks.
I’m working with my EDS-focused physical therapist and my primary care doctor on what to do now. CCI often benefits from physical therapy. I’m not able to see my EDS PT as often as I need to, though. I also see her virtually, which is usually great. For this, though, I need to find someone to see in person. That person needs to know how to handle CCI and be willing to learn about EDS. Otherwise, I’m putting myself at risk of further injury.
How I’m doing
Again, I’m dealing with a lot of pain. I’ve had chronic pain since I was 5, but this is a whole different ball game. With my neck being unstable already and the lack of access to my medication, I already wasn’t going out and doing a lot. Now with the bulging discs, though, I have to be very mindful of how I support my neck. I generally have a maximum of 2 hours of sitting upright in me before I have to rest and make sure that I’m supporting my neck by using a neck brace, propping up my neck with my hands, laying down, or leaning back against a chair or couch.
This is also causing a lot of muscle spasms. I have to roll out my leg muscles every single night before I go to be on top of taking a muscle relaxer. This has eased up slightly with starting a number of vitamin supplements, but is still an ongoing issue. If I don’t do these things, my leg muscles lock up and I can’t sleep.
I’m… very tired. I’m tired of fighting insurance on getting my medication covered. This is something they said they would do back on January 30, but keep putting roadblocks in our way. I’m exhausted from having to constantly think through what I want to do and consider if it will cause my body issues. Though, I’m also just as frustrated about trying to do things and not being able to or causing myself pain in the process.
I’m very grateful to have the best two helper dogs in Hank and Dean.
I’m also honestly feeling worried about my spouse. This is a lot of stuff all at once. The balance between being a partner and a caregiver is a hard one to deal with. It’s overwhelming for me, absolutely. I don’t have the added helplessness of not being able to do anything about it.
Moving forward
We’re heading to Spain in a few weeks. I’ll be attending the 2025 OMERACT conference.
I’m honestly not sure how traveling will go, let alone attending sessions.
Thankfully, I’ll be among friends and world-renowned rheumatologists. It’s probably one of the best places to be with how my body is right now.
If I know you in real life, don’t stop inviting me to things. I can’t guarantee I’ll be able to attend anything, really. But, I still appreciate being included.
If I don’t know you in real life? IDK. Send happy thoughts my way, maybe?