Many People With Hypermobile Ehlers Danlos Syndrome May Avoid Physical and Occupational Therapy. But Why?
Before being diagnosed with hEDS, many of us spend a great deal of time going from one orthopedic specialist to another, looking at each injury or body part separately. Here are just some reasons you might have had for visiting and orthopedic specialist:
- A painful wrist after cooking a meal or completing yard work.
- A sharp pain in your knee, after your dog jumped up to greet you…when you got home from work.
- Sharp pain in your hip that seemed to get worse over time.
In each individual case, the outcome (and message) was usually the same:
- Your X-rays look Normal
- The MRI does not show anything very concerning
- What you have are growing pains (If you are younger)
- You have your hands full with your kids; all moms feel this way
- All you need right now is some diet and exercise
- It’s just part of getting old
- It doesn’t help that you haven’t followed through with PT or OT
- Are you sure you are not just depressed?
But what if you finally cleared the hurdle and received the hEDS diagnosis you had been waiting for? Your doctor may now refer you to a physical or occupational therapist to help address your pain. If you are feeling hesitant about starting therapy, you are not alone.
WHEN THE THERAPIST IS THE PATIENT
And in terms of going to Physical Therapy and Occupational Therapy, maybe you tried to go. And not just to one clinic or two…many. I myself bounced around with each new injury to see if I could find “the one”. By the one, I mean one that didn’t make my pain feel worse than when I came in. Sometimes the massage was too intense. Another time, the therapist stretched me way too far. On many occasions, the therapist would simply “give me space” seeing how I was an OT myself. But I didn’t want space – I wanted answers that even my colleagues could not seem to explain. But something was wrong. Very wrong. The injuries and pain began to pile on, and soon the pain seemed to be “everywhere”. More on my story later…
What Are Some Of The Reasons that hEDS Sufferers Avoid Or Stop Going To Therapy
Here are 9 things I’ve heard people with hEDS say about therapy:
- Physical Therapy often exacerbates my pain or creates a new issue.
- I was told to see a CHT about getting ring splints. But the one I went to did not seem to know much about hEDS either.
- I need to get started on Occupational Therapy therapy. However, I’m not sure where to go or what they can do to help.
- I am feeling very unclear as to what to do to protect my body in the long run. This leaves me feeling pretty helpless. I do not get much education aside from my home exercises.
- My therapist has a “no pain, no gain” approach. I push myself and pay for it later, because I’m in so much more pain afterwards. I should have said something.
- When my therapist massages or stretches me, it hurts! I don’t say anything because I tell myself “they know what they are doing”.
- I get tired and/or dizzy during exercise sessions, or when getting up from mat exercises.
- Most PTs and OTs don’t even know what Hypermobile Ehlers Danlos Syndrome is. I waste a lot of time trying to explain it.
As an Occupational Therapist with hEDS, I have been on both sides of this controversy. From a patient’s perspective, I believed in my heart I was the best that I could during therapy. I was always disappointed when I wasn’t getting the results I expected.
As a therapist, I know that no two clinics/bosses/settings are the same. In a perfect world, the staff gives you heads up days before that a complex diagnosis is on your caseload. In a busier practice, you might have 2 minutes to read the chart. The therapist walks in to meet the patient for the first time without much background. I will get into why some practices are so different in another post. For now, let’s just agree that we all would like two key things:
- to be able to walk into that first visit knowing your PT or OT knows what hEDS is
- to know exactly what to say to your Occupational or Physical Therapist on the day of your first visit.
1. Bring a Copy of a Blank Beighton Score Sheet to your OT or PT visit.
Unless your therapist is familiar with hEDS, chances are they may not have this scoresheet handy. You can provide a link via email or better still, download a copy of the Beighton Score Sheet and bring it with you. While they cannot provide you with a diagnosis, your therapist can use this tool (in addition to their usual assessment tools) to develop your care plan and add notes of caution for any other therapist in that facility that may treat you. You can say something as simple as, “I have (or think I have) hEDS, and I wanted to get your thoughts. This is the scoresheet that is used to assess hypermobility. Would it be a problem for us to use this today?” You could also say, “This is the scoresheet my doctor used to assess my hypermobility. I hope it helps.”
2. Bring Your Reports
This includes any recent surgical reports or diagnostic reports from MDs that are part of your hEDS care team. I would especially bring those of the doctor that gave you the prescription. A therapist understands that they will potentially be part of your care team, and will want to get on the same page as your other providers when it comes to your condition.
3. Don’t Assume Your Therapist Will Know What Hypermobile Ehlers Danlos Syndrome is. Download This Free Guide
How To Talk to Your OT or PT about hEDS
I wrote this eBook from the perspective of an Occupational Therapist and also of a patient. I want to make sure you have taken all the necessary steps BEFORE your first visit, so I created a step-by-step guide that helps to set you up for the best possible experience. In addition to my hEDS story, here’s what the eBook includes:
- Roadmap to find the best possible OT or PT in your area
- A script you can follow to speak to the staff that is setting up your first visit
- 1 cheatsheet template to take with you the day of your appointment
- BONUS guide for your PT and/or OT that will explain what hEDS is before your first visit. It also includes a list of resources to make it easier for your therapist to research hEDS (you could even use it for any other healthcare providers).
The eBook is a free gift for all subscribers! So join the list to get access to resources, the Seasonal Newsletters, and of course, instant access to the free eBook “How To Talk To Your OT or PT about EDS”. Subscribe below!
Conclusion
While is is true that most Physical Therapists and Occupational Therapists are not familiar with hEDS, every therapist does want to provide you with the best possible care. Following these 3 Tips On How To Talk to Your OT or PT about hEDS gives you and your therapist a greater chance for successful outcomes. If you are in the NYC area, and are looking for Occupational Therapy, give us a call!