Any Hyper Mobility Spectrum Disorder patients or growers?

[UncleBabyBilly]

I am a grower/patient with hyper mobile Ehlers-Danlos Syndrome with a bunch of side conditions but mainly instability of my neck, shoulders, and hips resulting in frequent subluxations, dislocations, intractable spasms, and problems associated with damage to the vagus nerve. With the malformation of my connective tissue, imaging will only show a dislocation if it is actively out of the socket, I don’t suffer the same trauma as someone with healthy joints/tissue. Gumby + Mel Gibson from Lethal Weapon …the least intimidating combination possible!

It’s a genetic disorder although the marker for my type is not currently known. A lot of common interventions just straight up don’t work. Novocaine is one most people have experienced, it has no effect on me other than making my gums itch. Painkillers and Muscle Relaxers are minimally effective.

I’ve found a lot of symptom relief in Nigerian lines, mostly based off of Top Dawgs Nigerian Silk Kush, SSSDH (it was even useful from fucking curaleaf in NJ…its such a powerhouse that not even their shit-fuckery could ruin it), Blueberry (fruit and garbage profiles), and a few others. I like things like Sour OG and Gorilla Glue for refocusing and energizing if I go too deep into the pain relief sludge strains.

Nigerian is racy spasm relief up and down my spine, in the right hybrids it keeps things so awake and potent that I can be distracted from pain for hours and actually have some limited spasm resolution. It’s more of a precision tool for spasms where as SSSDH is like hitting your symptoms with a bus (especially done up right). Blueberry, in my experience makes me tired, loose, and hungry, perfect for evening and waking up with a shoulder hanging out of place. I have several Outkastt Blueberry hybrids going which are more awake than what I commonly find in the trash berry presentations.

Next up are some packs from Tony Green - Great Lakes Haze and SSSGBH and some from The Madd Farmer (some of his urkle and clementine hybrids), Seattle Chronic (mudhoney looking for CBG), and Lemon Blossom Organics (the skunks). CBG being I believe the most useful cannabinoid for me for spasms.

All my seed making under Disjointed Genetics is based off of relief for intractable spasms and maintaining an appetite. If I can move smoothly and eat the pain becomes so much less of an issue.

Anyone else with a HSD have any strains/breeders they prefer?

[Slick1]

Weird that you post this now. I do not but my GF does and is has an appt tomorrow with a Dr who is supposed to be well versed in it that we were talking about maybe 30 minutes ago. She’s still piecing it together and researching it. Her neck is a constant issue that I assume is tied in. She doesn’t partake too much but one strain that has helped her when she does is Pennywise from Subcool. It’s a high CBD strain with about 12% of both THC and CBD.

She’s smoked it and it’s brought her pretty quick relief ranging from taking enough of the edge off to feel better to miraculous. I made a salve out of it for her that works great too and I’ll use it for sore muscles and joint pain. My knee was throbbing/aching one day (I have issues with the knee so not just run of the mill stuff) and that salve calmed it down in about 2 minutes. Throb/twitch went away completely and the pain was reduced to maybe 20% of what it had been.

No Pennywise on NJ’s program though and they’re getting harder to find. I have 3 or 4 beans left and plan to do a seedrun at some point because it’s way too medically effective to let die.

Can you bend your thumb back to your wrist? My GF tries to freak me out with that all the time.

[UncleBabyBilly]

Thankfully I’m not in NJ anymore – although I still have some Doctor recommendations out there for neck doctors and physical therapists.

My thumbs do more than that (see below) they fully dislocate. Everywhere can do that with enough pressure. I’ve got the arachnodactyly going full tilt boogie. Pic 3 shows the gap between the bones most clearly – even after doing this it won’t show up as dislocated. My shoulders rotate horizontally like 270 degrees. My DPT has gagged working on my neck before with how it slides around. It’s…a whole thing LOL. I have to keep CBD on the low side, with my vagus nerve issues it can make me faint.
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[Slick1]

Damn yeah I’d say you are definitely a bit more severe than my GF. Not sure if she can do that part. Have you heard of the risks of brain fluid leaks? She has an internet friend who actually had to have surgery for CSF leaks that were caused by EDS.

Interesting that CBD can have that effect. I’m not completely up on it but I know she’s mentioned the Vagus Nerve before but I can only retain so much information in a day. Does CBD have that same effect on you as a topical do you know?

[UncleBabyBilly]

Topicals are fine. And my reaction to CBD is pretty unique and uncommon even in the HSD world. Edibles didn’t cause the extreme reaction either. Just smoke/dab/vape. Before I got my diagnosis a physical therapist gave me neck traction and caused some damage that wouldn’t normally occur. Syncope started right after that appointment. They were trying to help, and I had no diagnosis, it could have been worse.

[Slick1]

You have any suggestions for doctors in Jersey that know their shit when it comes to this?

[UncleBabyBilly]

Dr. Jared Cooper of Professional PT in Madison, NJ. He was the doctor that recognized my EDS and got my diagnosed. Exercises and techniques to manage pain/correct posture/move carefully. Anyone in his practice is going to be top tier. The recently went from private practice to joining that chain so they could accept insurance.

Dr. Matthew Lipp of the NJ Spine Center in Chatham, NJ. Pain Management, Neck Health, Non surgical and non narcotic options. Works well with Dr. Cooper. Gives the best and most effective dry/needling and trigger point injections – he figured out a mix that actually worked for me in the injections. His understanding of the neck/spine/nerves is above and beyond. He has limited availability, I waited 8 months + for my first appointment, worth it.

I can’t really name the one place/practice I wouldn’t go, but be careful about DO’s in Morristown. Also be careful with the Spine Clinic in Mountainside Hospital.

In my opinion it was worth longer commutes to see doctors like these. You need someone confident enough to abandon a lot of their knowledge about how the body is supposed to work, in order to learn how a hyper mobile body works.

[Slick1]

I appreciate it and I’ll look into them. They’re definitely a hike for me but I’m of the same mind where the commute is worth it for a doctor who knows his shit.

My GF was going to a pain management place with non narcotic practices who said they knew about EDS and then part of her prescribed treatment along with PT was an adjustment from their chiropractor. She had some discomfort after it and then after reading saw they shouldn’t be adjusting her neck, if anything. Luckily she figured it out quick but like you said they were trying to help but could have made things worse. While it doesn’t mean they lied about their knowledge of EDS it definitely pointed to not being as knowledgeable as they claimed. That really sucks about the syncope. I could just imagine thinking “I don’t have enough shit going on already? Really?” lol

[UncleBabyBilly]

I am willing to get adjustments from Dr. Cooper, Dr. Lipp, and my new DPT here in Michigan. They got to know how I moved and my problem areas first and varied their technique. Adjustments don’t always mean separation and traction. It doesn’t mean they aren’t knowledgeable. I think it’s important to make them verbally explain the adjustment before doing it, including how they are doing things different to accommodate for the HSD. I also think it’s important to have a witness/buddy in the appointments when adjustments are happening until serious trust and a report with the doctor is built.