Usually diagnosis goes like this:
Patient feels something wrong (something hurts, or looks wrong, or won’t work etc) … so they go the their GP. Doctor examines, asks questions, and does one or more of the following:
A: Makes a clear diagnosis, followed by prescribing some for of treatment, (which may or may not include home remedies, rest, medications, splints, creams etc)
B: Doesn’t know what the cause is so makes a recommendation to see someone who DOES know what is going on … usually some kind of specialist in the field that he or she suspects the problem lies, and sends the patient on (and may or may not include some advice on how to survive in the mean time) …
Sadly however, many doctors, including specialists, have either never heard of EDS, or worse, if they have they know very little. And a little bit of knowledge can be worse than no knowledge at all!! But a little bit of research (sooo easy in this day and age of the internet!!), and a little bit of empathy, can go a VERY long way!
Yesterday I made an appointment to see my GP and I was shocked at how petrified I was of seeing her! It isn’t even two weeks since my diagnosis, but I have lived with the symptoms of my condition my entire life, and I am SOOOO exhausted from dealing with the unknown, and not getting the care that I need! After 8 months in agony from this very minor fall alone, and 3 months in a moon boot and the rest of my limbs folding under the weight of having to take up the slack in my foot (literally!!!) I took myself off to a Rheumatologist (a Rheumatologist because I suspected that there is something wrong with my tendons and ligaments). A fabulous nursing practitioner in ER also suggested that a Rheumatologist would be a good option, and so I grabbed that lead and went for it! It “only” took two months to get in with me being available when she had a cancellation, and I was surprised yet not surprised at the diagnosis, (surprised to get something concrete for only the second time in my life!!! But at the same time not surprised that it was something wrong with my connective tissues, because for the first time in my life my VERY THICK medical file made sense!). But at that point I knew almost nothing about EDS. So I asked her what happens next and when does she need to see me again, and she brushed me off and said I don’t need to come back, as there is nothing that can be done!
My GP said I am being a little melodramatic saying that she (the Rheumatologist) sent me home to rot on the couch, but really, I had NO information, I couldn’t walk without crutches and the crutches that I had were absolutely abominable to say the least! …. I had no plan, no idea what I was going to do next, and if I had taken her advice that there was nothing to be done and I can’t get around on my own, then what else would I have done but gone home and rotted away on the couch!!
Instead I went straight home and started my own research, and within 24 hours I had decent crutches, joined an on-line EDS community group, had a gazillion questions answered by an AMAZINGLY wonderful bunch of people who are walking this path before me and behind me, and it has REALLY made me wonder how many doctors who know anything about EDS have this much knowledge? EDS is supposed to be rare, but I have now heard it said over and over that it is actually not so much rare, as rarely diagnosed. So I broke down my body into a simple list and what and who needed to happen for each one to be addressed, to make the most of what I still have and prepare for what is to come, but I can’t do it all on my own. Yes I can research and find a decent pair of crutches, but I don’t have a medical degree, and I can’t write my own scripts. I realised that what I need is a primary care doctor who can help me with the overall picture, someone who can tweak my list and add to it, send me in better directions that I would ever have thought of, and support me in the areas that I have come up with myself…
I have lived with such pain for all of my adult life, that I had already set up some basic survival tools, without even knowing why. My biggest tool is my hot baths each night before I go to bed. Because I had NO idea what I was actually living with, I felt as though my hip pain was in my bones. I felt that because the pain was so deep, and a heavy kind of pain that I suspect people with arthritis in their hips feel. A HOT soaking bath would ease the pain most nights in order to get enough sleep. Most morning I would still wake up with my hip at the very least in pain, but at least I had mostly slept through the night! I also feel the cold terribly and worked out by the time I was thirty that my body does not regulate its own temperature very well. So a hot bath that warmed me to the core was always vital for my sleep, which seems crazy because even in the heat of summer I needed this for pain management, but then would need the fan on so that I don’t over heat in the night in summer!!
So I already have many very effective strategies in place which are very helpful, but I knew very little medically about my pain, why I have it and what can be done about it, and knowledge of these things makes control over them WAAAY more successful! I had already taken up swimming two weeks prior to diagnosis, to get my muscles back from wasting away in a moon boot for over three months, (and when I mean swimming, think doggy paddle and treading water, nothing more!!) but in those two weeks because I didn’t know that my joints were overextending, in that VERY basic and short swimming time, I had already subluxated both a knee and the other hip!! But knowing everything that I know now (and am learning every day), I changed that exercise to even further reducing strain, and I haven’t popped anything in the 2 weeks since!!!
In my EDS community group, the thing that scared me the most, was reading about the general lack of empathy and willingness to learn by so many health professionals. From nurses to GPs to specialists. Many health specialists don’t like to think that they are wrong, or that they don’t know enough, and in my long and complicated experience, the VERY best who have cared for me, are those who admit that they simply don’t know, and we find out together … or they find out for me, … or they send me to someone who might know! NO ONE has ever even suspected EDS and when I look back it makes me feel a little angry, as often it was staring us all in the face, but doctors are trained to think horses when they hear hooves, and to give some of them credit, there are some truly AMAZING and helpful health care professionals out there, and I have had the pleasure of working with some of them, and I am SOOOO thankful for them, but not one of them checked for EDS…
But the attitude of my Rheumatologist, the first person to know what is going on, the one “knows the most”, floored me! She clearly thinks that it is either nothing to worry about, or if it is then there is nothing to be done anyway! And THAT is simply not OK!! Below is a tiny sample of some of the examples of mistreatment that people in the EDS community have experiences first hand (and given me permission to share, as the group is not public for a reason) … and when you read them I am sure that you will understand my trepidation at meeting with my GP and asking her to come on board with me and do all that we can to keep me mobile, active, and as pain free as possible. I’m not stupid, I know that this can’t be fixed, and that I will likely never be pain free, but SURELY, in the same way that my hot baths can keep me from needing pain meds most nights, there must be other things that we can do to support this weary old bod!?!? Thankfully my prayers were answered and she was FABULOUS! She is not an expert by a long shot but soon she will be let me tell you!! After my whole life of having sooo much bad medical help, and now meeting a whole community who is by and large struggling to find a voice and get support, there was good reason to be fearful!!
Here are what just a small sample of my EDS community have shared of their experiences:
Cardiologist at highly respected vascular institute: “I don’t really know anything about EDS. A colleague once told me to look for thin transparent skin and prominent veins. I can’t even tell if you have thin skin. Do you feel like you do?”
“Well, you don’t LOOK sick ! You look healthier than most. You are too young to have all these issues !”
From a geneticist: You can’t have EDS you’re not Jewish!
Neurologist from UCLA. “It’s not supposed to hurt”. Or “You don’t need help with your EDS you need help for your Borderline Personality Disorder!!”
From an orthopedist – “Your body does some weird shit!”
Also years ago in my GPs office from the nurse who had to take my blood – “I saw your name on the schedule today – couldn’t you have come next week when I’m on vacation?!”
New rheumatologist, fired after one visit: “I don’t know why you’re pushing for this diagnosis. There’s no magic pill” (I wasn’t there for diagnosis. I already have diagnosis and need help with pain.) Followed by: “Vitamin C will solve all of that.” HOMIE, YOU JUST SAID THERE’S NO MAGIC PILL!!!
Here’s another gem from that rheumy: “Your scoliosis isn’t severe enough to earn you a diagnosis of EDS. EDS people have really severe scoliosis and heart problems. You don’t have a murmur or aorta problems, so it can’t be EDS.” (Keep in mind my scoliosis is degenerative in nature. It wasn’t there 10 years ago when I was 20. 30 year old people do not just randomly come up with degenerative scoliosis!!)
You should run 3 to 5 miles everyday.
“There is no such thing as low blood pressure! If there was, human life would cease to exist” my ex doctor told me this and her husband is a cardiologist!
Dr: “You, Ms X, are obese! .. Lose some weight and your health issues will diminish.”…in reality, I ended up needing an aortic valve replacement. I was holding water retention , because I was in heart failure. OBESE …
I had an orthopedist, who had been treating me for years, tell me a year post dx that if I had EDS that I would have exhibited symptoms way before 43. The broken hip at 12, neck at 16, almost every joint on L side of body etc etc, dislocations since childhood, MCAD, nor dyautonomia count as symptoms.