Aaron Hartman, MD discusses pain in people with joint hypermobility (including Ehlers–Danlos) and outlines both pharmacologic and non-pharmacologic approaches. He mentions centrally acting medications (clonidine, guanfacine), low-dose naltrexone, and tizanidine while warning about risks of long-term narcotics (mast cell activation, central sensitization). He emphasizes fascia-targeted therapies (fascia work, dry needling, acupuncture, trigger-point release), targeted physical therapy that respects hypermobility, core/neck strengthening, judicious short-term splinting, and recognition of cranio-cervical instability as a cause of positional headaches. Advises seeing clinicians experienced with hypermobility and links to further resources.
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Pain is a big issue. It's one of the vital signs in addition to blood pressure, pulse, temperature and super common in people that are hypermobile, especially in people that have Ehlers Danlos. So if you have any aches and pains, spine issues, fascial issues, weird stingy pains, you know, rib, rib pain, belly pain, just weird stuff that no one's been able to put a finger on, you know. Stay tuned to this information. So how do you deal with pain and hypermobility? Well, there's the traditional ways through medications which we're not going to take a too deep of a dive into this here because many of these medications aren't addressing the root cause, but they can be helpful. There are certain centrally acting medications like clonidine or guanfacine that can help certain types of centralized pain syndromes as well as things like low dose naltrexone to help with inflammation related to the pain, which I used a lot of certain medications like tizanidine. Through its impact on the nervous system, it actually helps regulate alpha, that's actually an alpha agonist similar to clonidine, but also has some tricyclic activity. So it's this really kind of dirty drug. There's a lot of interesting things of note. If you've been off for a long time and you pull yourself off, you can have crazy high blood pressure spikes because of this alpha agonist activity. So you got to be a little careful with it. The problem is back in the day when we thought narcotics were safe, a lot of individuals with hypermobility and pain syndromes were put on narcotics like Vicodin, Percocet, long acting oxycodone. And the problem with these narcotics is one, they actually release mast cells so you get a histamine response with these, which is super bad in mast cell issues which a lot of hypermobile individuals have as well as long term narcotic use can cause a centralized pain syndrome. It actually can increase the sensitivity of your central nervous system to pain over long term use. If you're watching these videos, you've seen that I mentioned that being a part of the fascia reaction of your connective tissues and your central nervous system and narcotics make this whole thing worse. And I personally experienced that in my clinical practice. People with chronic pain on their coccs, it's really, really hard to get them off of them because it's, you know, it's difficult. But there are a lot of interesting things you can do for the pain in these individuals that can help with the fascia physical exercises Fascia work, acupuncture, strain, counter strain is an interesting newer type of physical therapy or fascia work where you actually you find individuals trigger points, relax the muscle tendon junction, press on those and tighten up and you can actually as a way to release that those trigger points. But fascia work can be very, very helpful as well as certain types of physical therapy that respect the joint respect the hypermobility. One of the ways you can actually minimize pain, minimize a lot of the central nervous system symptoms are by strengthening your core body muscles, strengthening your neck muscles, strengthening your different body muscles. In combination with fascia work which actually one of the things that happens is when you get these pain, the fascia tighten down which actually makes the pain stuff worse and increases the activation of your nervous system. So doing fascia work to relax this dry needling, mechanical needling, which is you put the needle in there and you turn it. Which is kind of what some dry needles do, but some acupuncture do as well. Fascia work, even trigger point release massage can be really super helpful as well because it not only calms your nervous system down, but also can be worked on some of these fascial points. There's a lot of interesting things that can be done for the pain. Splinting is a common thing used in a lot of more severe patients with Ehlers Danlos which can be helpful short term. But long term you don't want to splint too long because you can actually develop muscle weakness which just kind of is a feed forward cycle with all of the pain syndrome stuff. One thing of note is with individuals with hypermobility they can get a thing called atlanto occipital instability which is instability between your, the top, basically your skull and top of your neck or cranial cervical instability, which is your brain and your top of your neck. And what this can do is actually affect flow of your cerebral spinal fluid through your brain. But also causes cause increased pressure. Like it's almost like a normal pressure hydrocephalus kind of sort of thing where you get pressure in your brain. They really mess a lot of stuff up. People notice headaches become positional. They wake up in the morning with a horrible headache, they go vertical, it tends to get a little better. And then sometimes throughout the day they'll nose headaches come on because their brain's kind of sinking in their skull and blocking fluid flow. Sometimes the cervical collar giving a little cervical tension, little cervical traction with the collar. People will notice immense improvement in their occipital migraines. It's really interesting how many people with migraines and headaches in the back of their head. If you look where my hands are, like right there, it's actually from that tension that calls from these fascia. So a lot of interesting things for pain in this group. The point is, working with an expert who's familiar with this is key because if you've listened, this is kind of complicated. And I've already mentioned like, you know, if you look at physical therapy, you look at neurosurgery, you look at neurology, you look at rheumatology for pain, pain management. That's like five different specialists and five different specialties that don't communicate back and forth. So finding someone who's hypermobile, aware of these things can be super helpful for managing pain syndromes. For information more information about this, we'll have some links below to our website. We've done a whole host of videos on hypermobility as well as its association with pots, dysautonomia, GI tract issues, autoimmune issues, gut problems, a whole host of things that these all tend to come together. So hopefully this little snippet was helpful for you. If it was, please like share. Subscribe below. The way this kind of information gets out is by you sharing it as well. Put your questions below and when we get some time later on, we'll try to answer the questions as best we can. Take care and talk to you soon.
