I don’t usually post this often since I just posted last week, but I felt I needed to do a post simply on hypermobility/EDS and the havoc it wreaks on the body and things I’ve learned through this journey for two reasons: 1. to inform those that know me more on my condition (what it is, how it affects my body, and how that I don’t just get “tired” from being up and around, and it’s not just having increased aches and pains) and 2. to share with those that are going through similar issues with their hips who have JHS (joint hypermobility syndrome)/EDS (Ehler Danlos Syndrome) and how it has impacted my recovery and things I have found helpful and hurtful in my recovery. I am super hypermobile (will post pics of what I mean) and at this point will be shocked if the genetics doctor doesn’t give me that diagnosis when I finally get to see him in July. In fact I will keel over in surprise if I don’t have a connective tissue disorder, as I have 95% of the symptoms on the diagnostic criteria. This is why my recovery is not the normal hip surgical recovery, this is why I am struggling so much to get better and have so much pain some days, and this is why I know I will have issues throughout my life going forward. I am learning to accept this is how my body was made and how I need to treat it and live going forward. Anyways, on to more specifics:)
I want to just first briefly put what EDS/connective tissue disorder is. “The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. ……..The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein “glue” of our tissues).” So simply my genes in my body have faulty programming and do not produce normal collagen (for me particularly in the ligaments). Ligaments are what hold the bones together and then muscles give added support in normal people. For me and “my people” my ligaments are weak and have too much mobility, so my muscles are what holds me together. Well, in my case that was fine until my hip labrums tore (due to dysplasia and femoral-acetabular impingement) then my muscles in my core could no longer function normally, as the muscles around my pelvis and hips were over-working to stabilize my hips , which led to faulty motor patterns developing from the muscles not functioning properly, which led to the whole body freaking out and the hypermobility became so extreme from weakness of the muscles. Add in a few hip surgeries which weakened me even more which led to complete body failure (at least that’s what it felt like). Let me give a few examples of what my body has been doing to me on a daily basis all day long:
When laying on my side, let’s just say on my left side for this example, (in bed or on the floor when hanging with the kids) my entire pelvis literally shifted to the right side from the pressure of the left hip/pelvis on the floor. Being that my pelvis rotated, everything that attached it to started to spasm and when I stood up I could feel the crookedness of it all. Did it go back to place you wonder? Well until very recently (like the last week) when I can activate (finally after almost 3 years and 3 surgeries on my hips and going through 3 PT’s before finally getting a person who has some understanding of all this-my ART chiro and his trainer) my core and hip muscles properly I can usually get things back into place. Before this, I walked around with a twisted pelvis until I saw a manual body practitioner who could straighten me out by releasing the tight muscles around the pelvis (ok I still walk with a crooked pelvis parts of the day, I’m not close to being “fixed” but I consider it success that I can at least self-correct a few times a day). What happens when your pelvis is twisted and all the muscles around it spasm, the whole body is out of alignment and the pain is excruitiating. Nerves are pulled on creating burning, awful nerve pain, knee, ankle, foot, and neck joints have pressure in them, fasica tightens and it feels like the body is being squeezed to death. Now an average person looking at me has no idea, you can’t see it so it’s hard to understand. Pain meds don’t touch it and not a single position is comfortable. Even laying on my back is tough because the sacrum is so mobile it pushes anteriorly and causes pain. Basically I need to change positions frequently all day long to minimize the pain.
One me, whichever hip/muscle group around the pelvis is weakest, as those muscles fatigue throughout the day (which for me a couple of examples would be if I run to a store and stay more than 35 minutes, or do too many therapy exercises, or if I tried to use the broom to sweep a couple of rooms in my house–the vaccum, forget it, can’t go there) they get really tight, and the pelvis being so hypermobile gets pulled to that side (which for me it to the right, as that was my most recent hip surgery and the muscles are still pretty weak with poor endurance). As they pull the pelvis same pains listed above flare up pretty bad. I forgot to mention that on me the lumbar spine became very hypermobile during the whole years of hip saga as well and has been pulled back and forth depending on which muscles tightened and that caused the lumbar vertebrae to rotate out-of-place and cause excrutiating nerve pain in L4,5, S1,2 pathways as well. That area is starting to stabilize a bit with my rehab and is rotating to less extremes than before thankfully!!
Sitting is another area that causes difficulty. The ligaments are so stretched around the hips and sacrum that when I sit (which is a position they naturally have a little stretch) within minutes muscle spasms and/or fasical tightening begins and its very painful. I limit my sitting to meal times, church, and/or anywhere I have to sit to a minimum. I lay down in public places with weird looks, but have stopped caring about that.
An upper body example of how the hypermobility affects me is I cannot do anything requiring repetitive motion. For example when I make mashed potatoes if I try to peel a bunch of potatoes my right shoulder/scapula muscles start to spasm because the shoulder joint is so unstable. The muscles then pull on my neck vertebrae and they become misaligned exacerbating the pain even more. Lucky for me my hubby jumps in after a few potatoes to help out:) Peeling potatoes, who would have thought it could wreak havoc on the body, lol.
Anyways, I could go on and on. People say look at supplements, look into massage, look into acupuncture, look into mind/body healing stuff, etc… but the reality is I was born with faulty genetics and nothing will change the way my body produces bad collagen. Pain management via ART and myofasical release I do, and now that I am getting a proper rehab I am having episodes of the severe pain less often. The things I have learned are this:
A solid core is essential with hypermobility syndrome
When my muscles fatigue, I need to lay down like now, not in 5 minutes, not after 1 more activity, I need to lay down this instant on the ground or a couch or I will be in pain for days trying to recover from “pushing through” the fatigue.
Traditional PT did not understand me at all!!
Strength training needs to be very slow (like a snail’s pace), starting from very basic things and stopping for the day at the first signs of fatigue. No more pushing myself like in the old days.
Impact exercise is no good for me.
High level resistance training is no good for me. It’s all about building strength slow and especially muscular endurance.
Tightness that I feel always has a function, usually it’s to protect a joint (such as the very tight fasica surrounding the muscles in my left quad and calf that are protecting my left knee that hyperextends) or it also can be due to weakness in that muscle group, or sometimes both. For example after my hip surgeries my hip flexors were so tight. I thought it was because they were trying to be dominant, but really they were/are so so so weak.
My hip surgeries recoveries (left scope 4/13, left PAO 5/13, and right scope 10/13) are not like most people’s hip recoveries and I cannot compare myself to those people who are out doing normal activities within a few months after. What took them 2-3 months will take me 1-2 years if I’m lucky, and even then it seems I will have limitations.
My tempurpedic bed is extremely important and causes me the least amount of pain in laying down.
I need to change positions frequently throughout the daytime. Not a single position (including laying down) is good for me for any length of time.
I have to say I’m still not convinced I don’t have SI joint dysfunction, but only time will tell as I continue to get stronger little by little. I still live the majority of my days from inside my house, but at least the pain is at a tolerable level more than intolerable if I lay low with activities, whereas before it was just plain miserable regardless. I’m going to attach some pics here of my hypermobile joints so people can understand what it means. The elbow ones show the hyperextension of my elbow (and in one you can see that I can turn my shoulder to an abnormal angle), the wrist one shows the crazy wrist flexion I have, and the finger ones show my crooked fingers in the one and the hyperextension of the finger joints in the other. In the finger ones, these are me trying to put my fingers straight, and that’s as “straight” as they can go. Funny, but for years before I “fell apart” I had pain in my hands, neck, and back, but it was functional pain and didn’t stop me from doing the things I wanted to do (if I had been wiser I would have listened to my body then I suppose and avoided some of this misery, but hindsight is always 20/20). It all seems to click together now those pains paired with the other “odd” stuff my body always had. I’m attaching a link to an in-depth article on hypermobility syndrome if anyone reading this thinks they may have it and want to learn more. I hope it helps. As always, thanks for reading:)