So to continue my story…

On top of all my gynecological woes, I also have been accruing pain in various joints over several years that has been continuing to worsen. I started wondering if something was wrong when I started describing it as feeling like every few months I get another “overuse” injury in another joint that just never heals even with physical therapy (PT). (This has gotten much more frequent though, depending on what counts as a new injury.) And while it might not be unusual to have one or two joints like that as a young adult, when you’re in your mid-twenties and active (but never been a crazy high-level athlete) and you have more “bad” joints than not, there could be more going on. The physiatrist (doctor who specializes in physical medicine and rehabilitation) I have been seeing said that my constellation of symptoms is sounding more and more like hypermobility (and my PT seems to agree), and is sending me to a rheumatologist to assess me for hypermobility and collagen disorders (such as Ehler-Danlos) and to coordinate further specialists I may need to see regarding that.

Disorders that cause hypermobility and related symptoms (e.g. stretchy skin, easy bruising, gastrointestinal complaints, etc.) are genetic disorders of the collagen, part of the structure of the connective tissue throughout your body. They can be inherited from a family member or the result of de novo mutations in your individual genetic code. Depending on the specific disorder or type or manifestations, this can cause any number of symptoms and issues, but I will focus first on how it can affect joints. Basically, the joints may be hypermobile or hyperflexible, meaning that they can move or stretch past “normal” because the connective tissue is weaker than it should be and does not hold the joint in place as well as it should. So the joints can move around more, which can cause recurrent dislocations and subluxations (partial dislocations) without trauma. These partial and full dislocations can be very painful by themselves, in addition to causing potentially repeated damage to the surrounding tissue. Having “loose” joints can also increase wear and tear and overuse injuries since the joint is moving around more than it does on most people, leading to chronic pain and nagging problems or worse. In that way, it is almost as though the joints of people affected age faster than they would ordinarily, and indeed people with these disorders do tend to have early-onset degenerative changes (e.g. early degenerative disc issues, early osteoarthritis).

For me, I have had jaw pain since I can remember and been prone to headaches for as long. Also, since I was a kid I have been subluxing ribs and had “weak” ankles that I tended to sprain. I never broke any bones though. I was also always pretty flexible, although my sister was able to do a side/straddle split as a toddler so I wasn’t seen as the “flexible one” of the family, and I sometimes showed off to friends in elementary school by doing weird tricks with my fingers and was always proud when we stretched in gym class because I could put my hands flat on the ground for hamstring stretches. In high school I had mild but nagging mid-to-upper back and neck pain and at some point I was told I had mild scoliosis between my shoulder blades. I have a tendency to hyperextend my knee or elbow, just walking around or doing something ordinary, and it will take weeks before it will fully heal, especially since once I do it once I will tend to keep doing it again and again.

In my late teens and early twenties, as a college student, I was a runner and started having nagging hip problems that PT could not seem to touch. That plus the successive additions of plantar fasciitis in my foot (at some point I was told I have collapsed arches — they are naturally high but collapse when I stand/walk) and nagging pain in my knee eventually ended my running hobby. Then I started having recurrent, long-lasting tendonitis in my wrists that after a couple of years became constant. My headaches gradually became more frequent until they at times felt constant, usually seeming to creep up from the base of my neck or from my jaw, and I also began getting what seemed like migraines. My ribs became a more constant and more painful problem. My lower back suddenly became a problem and an MRI revealed a bulging disc, along with some mild stenosis and mild facet arthropathy. As the lower back pain started to diminish to around the same level as all the other aches and pains, my hips started to ache more deeply and in new places, and I started waking up most mornings feeling like I had sprained my ankles in the night. One of my thumbs became a recurrent problem. I started seeing a chiropractor regularly at some point in the middle of all this, and he would frequently be “setting” basically everything — all up my spine, ribs, hips, kneecaps, toes, wrists.

And through all of these several years, my sleep became more and more affected. First certain positions were painful but possible, then painful enough I would wake up, then painful quickly enough that I couldn’t fall asleep in those positions. Eventually the only position I could sleep in exacerbated the frequent restlessness in my legs, making falling asleep and staying asleep an interesting balancing act.

Very recently, as in just this year in 2018, I found a doctor who 1) seemed to actually listen to me, 2) seemed to actually believe me and take it seriously and want to do something, 3) was qualified/in the right specialty to do something and seems to know when he needs to refer out, and 4) was actually nice and intelligent. He also sent me to a physical therapist (PT) who has actually helped, even if only marginally, which is the first time PT has seemed to make any kind of difference for me. They have started noting that the issue with my knees are that my kneecaps keep subluxing, or getting partially off the groove in the femur that they are supposed to stay on, and that my arches on my feet collapse when I stand and walk. They have heard and felt the clicking and popping and thudding of my hip joints as they move, listened to me when I describe the times (usually rolling over in bed) when either of my hips will seem to clunk out of place with a lot of pain and get stuck there with that leg not moving until I can force the rest of my body into a position that will clunk it back into place, and noted the unusual natural flexibility I have in my hips. (Right now, bursitis, labral tear, hip impingement, and arthritis are all terms that are getting bandied about, but I have not had imaging yet.) The PT also did some pressing on my backside around the back of the hip joint, and where and how I felt the pain and how it moved told him that my hip joint(s) are “loose.” He has also noted that I can hardly get a stretch in many of my muscles, and trying to stretch enough to feel it will often seem to start to hurt my joints before it stretches my muscles. They have actually listened to me describe my chronic rib pain, listened enough to be reasonably somewhat perplexed, and the doctor has suggested I might have costochondritis (inflammation of the rib joints – yes, there are joints there). The doctor has listened to me describe chronic headaches, and asked where the pain was seeming to come from. When I described it coming up from my neck and from my jaw, he first suggested he might refer me to a craniofacial dentist, and then backed up and said that my constellation of symptoms was sounding more and more like hypermobility/a collagen disorder, and that he is going to refer me to a rheumatologist to assess for that and coordinate specialists.

Other issues that can be related, and that I show some signs of, are things like gastrointestinal issues (I’ve had frequent stomach aches since I was a kid, always tended to be constipated, and now have some possible signs of reflux), dysautonomia, Raynaud’s, migraines and chronic headaches, restless leg syndrome, dizziness/vertigo (depending on the cause), endometriosis, etc. Honestly, when the connective tissue in your body is out of whack, what wouldn’t it affect?

So yeah. That’s kind of where I’m at. No definitive, final diagnosis yet. Although to be fair a diagnosis is kind of an educated guess anyway, and some people can have a diagnosis for years that they eventually find out is wrong. But I do have some general ideas of what parts of what is going on, and tentative diagnoses or avenues to explore that seem to fit quite well. So, we’ll see.

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