Pain Profile: Rob Saffer Living with Ehlers-Danlos syndrome

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Rob Saffer runs two nonprofit organizations and lives in Woodstock, New York.

Pain Resource: What do you do for a living?
Rob Saffer: I work from home as the executive director of a nonprofit, the Creative Music Foundation, and I also founded another education and conservation nonprofit, the Overlook Mountain Center.

PR: What kind of pain do you have and how were you diagnosed?
RS: It’s actually, unfortunately, a lot of stories of misdiagnoses and specialists looking at their own specific thing and not the whole [person]. I was in my early 20s and had pretty serious lower back pain. I was seeing a chiropractor several times a week, though I was still athletic. Just before I turned 30, I was playing Ultimate Frisbee in the park and while running I felt something pop; it was probably a ruptured hamstring. I didn’t pay a lot of attention to it. I couldn’t run anywhere so I started swimming a lot. I was still able to play basketball and I was lifting weights at the Y in Brooklyn. Right around the age of 35, I realized I had a hard time putting on a jacket, a backpack, opening a door to a building; my shoulders were shot and felt really painful. I went to see a shoulder guy, an orthopedist. Before I even had my shirt off he said that he could see I had a lot of bone spurs, mostly in my left shoulder. He did a quick exam and told me that I had the shoulders of a 75-year-old former pro pitcher or quarterback. The ligaments were stretched out and everything was just banging around. He wanted to do surgery on both [shoulders].

I saw a bunch of surgeons, including a famous one, and they wanted to do surgery. I thought, something’s wrong here. I had a bad hamstring that prevented me from running, shoulders that were dislocating; it was a mess. Maybe when I was 30, I had an umbilical hernia; it was repaired pretty poorly and when I was 40 I had a double inguinal hernia that seemed sort of odd since I could do 300 or 400 sit-ups in a day.

Then I pretty much moved my life upstate [from New York City] and when my employer switched insurance I picked a random doctor and went for a physical. I was telling him about some of this history I was in pretty severe pain; I couldn’t walk a block without needing to stretch my hamstring, but I wasn’t really treating it with any medicine or anything. This doctor said, something’s not right here. He went to his office and he came back with a little printout of a Ehlers-Danlos syndrome, a genetic disorder. It’s a lack of collagen, which helps form connective tissue. I read the description and said, this sounds a lot like me. He said, I really think this is something you should look into. I found a support group and I found one [doctor] in New York City who’s in the genetics department at Weill Cornell Medical Center and she must have spent two hours with me a wonderful person.

Ehlers-Danlos syndrome is a group of disorders that affect connective tissues, which are tissues that support the skin, bones, blood vessels, and other organs. Defects in connective tissues cause the signs and symptoms of Ehlers-Danlos syndrome, which vary from mildly loose joints to life-threatening complications. — National Institutes of Health

PR: How did she diagnose you with Ehlers-Danlos syndrome?
RS: She measured the distance between my arms and how far back my thumb could go. She took a lot of family history and wrote an extensive report and basically concluded that I have a mild form of this syndrome. There are [six] types and I have the least bad one; the worst one will kill you because the valves in your heart will stop working.

I also have mitral valve prolapse, plus the hernias and the banging around of joints everywhere. This woman in New York confirmed it. There’s no genetic test for this type, but there is for other types. Her basic message to me was, stay strong and active, do as much as you can without overdoing it, and manage the pain. In a way, she gave me license to take Advil and what I would need to manage it.

From that point on, the first year after that diagnosis was pretty depressing. I felt limited by it, I was focusing on all the things I could not do. I thought, Wow, I could probably not climb the Himalayas, something I had wanted to do. I spent about a year thinking that way, but trying to stay as active as possible. Then it occurred to me that I had to stop thinking of myself that way; I had to de-label myself as an Ehlers-Danlos patient and instead focus on all the things I can do. Today I biked 20 miles up and down Catskills Mountains roads. So I focus on what I can do rather than what I can’t do.

PR: How do you manage your pain?
RS: I’ve gone through all kinds of therapy. I’ve had osteopaths look at me, physiatrists looked at me. I’ve had a million MRIs done and they didn’t show much. I’ve tried Thai massage, massage, acupuncture. I heard about this guy that who was a chiropractor and I went to him for the better part of a year and spent an enormous amount of money and didn’t get better.

[The Feldenkrais Method] has, by far, been the most successful. It’s been remarkable … It’s very gentle, hands-on work, but it’s not massage or chiropractic. The theory behind it is based on neuroplasticity: The brain wears in these specific patterns that may or may not be good, and in my case I have a lot of neurological patterns that are terrible, sending all kinds of signals to and from my brain.

The movements [during a Feldenkrais treatment] are an attempt to rework the wiring of the brain so the brain starts learning better patterns. The movements are gentle and sometimes awkward and weird; when my hamstrings are bad, [the practitioner] is working on my shoulders. She’s going to start teaching me to do some exercises on my own … I go once a week, about a 50-minute session, and I’ll tell you, when I leave there, I’m usually totally blown away, exhausted, spaced-out.

PR: Do medications figure into your pain-management plan?
RS: I have prescriptions. Sometimes I take naproxen, but it’s pretty infrequent that I do. I also have a muscle relaxant prescription, Flexiril [cyclobenzaprine]. For example, last week, I took that. [With Ehlers-Danlos syndrome,] my muscles are doing all the work that the ligaments and tendons should be doing, so what happens is that my muscles are overstretched because nothing is holding them in, or they’re overtaxed. Last week, I awakened in the middle of the night with an incredible hamstring seizure. So the Flexiril is if I’m in a bad way.

I also have a low dose of Vicodin [acetaminophen and hydrocodone]. I probably don’t use 30 pills a year of each, maybe 25. They also started losing their effectiveness. I also have a prescription for a new muscle relaxant baclofen, but I haven’t tried it yet. I was just in agony a couple of weeks ago, and I tried Percocet [acetaminophen and oxycodone] and I got really sick, so I’m not doing that any more.

PR: What do you wish you had learned sooner, or someone had told you when you were first diagnosed?
RS: From the pain side, I still tough it out. It’s probably not healthy to tough it out. You want to break the cycle of pain, and sometimes you need help like meds, and it’s okay to give yourself license to do that. I’m saying that, but I still don’t fully do it; but I do it more than I used to. When I was having awful pain I was probably wrecking my body.

Also, orthopedists and specialists suck. I went to all these guys in New York City and they didn’t get it. They didn’t care and they saw [my pain] through their own lens. If I followed their advice I would have had surgery all over the place … The orthopedists, they don’t take a true medical history and I think having somebody where you can step back to try to see the big picture [of the whole patient, physically and mentally, with a full medical history], at least for me, was the crucial missing link. I think the specialists really frankly did me a disservice because of their myopia.

PR: Where do you get support?
RS: Nowhere, really, to be honest. Honestly, I feel like when I had that sort of epiphany of not wearing a label [as someone with Ehlers-Danlos syndrome] and being grateful for what I can do, that took a lot of the weight off of my shoulders. That helped a lot … But mostly it’s something I keep to myself.

I’m a member of a Ehlers-Danlos syndrome support group, but I felt like it was going to feed into it more, not that I was trying to deny [that I have the syndrome]. I want to keep it in its compartmentalized place. You don’t have to live with it all the time, but when it gets really bad, you’ve got to break that cycle.

I also think that alternative practitioners are useful. While not all of them worked for me … you got to sort of stick with it. I do think the alternative healers can do something that specialists can’t. They really do take a whole-body approach. With Feldenkrais, not only does she scan my body with her hands, but when she’s watching me walk or stand, she’s taking in so much information with her eyes; she’s sucking in images [about my body, my pain].

While there are a lot of quacks out there, there are also people who are operating on a more intuitive level and I think there’s a lot of value in that. I certainly found that with Feldenkrais, several ailments I had are crossed off the list now [thanks to the Feldenkrais treatments]. Be open to alternative therapy and don’t be afraid to take an Advil once in a while if that’s really what you need.

For more information about Ehlers-Danlos syndrome, go to the Ehlers-Danlos National Foundation.

Interview conducted by Lorie A. Parch
Photo Courtesy of Rob Saffer

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