It’s been three weeks since my hirst round of Prolotherapy and one week since my second round. I still maintain that the first round provided 80% relief and almost 100% in my back. Now that I am three weeks into the injections, I wish I could say the same. My hip pain is anywhere from an 8-15 on my version of a pain scale, 15 being the highest. My back is a 3-5 depending on the day. My jaw, I can recall one dislocation, there was never really any pain.
Rheumatology & Diagnosis
This morning I met with my Rheumatologist to go over all of my x-rays, bloodwork and genetic testing that he ordered in August. The good news, I do not have a more severe version of EDS. I no longer have to worry if I have the vascular form. There are no signs of any form of arthritis or deterioration of my hips, hands and feet. The bloodwork showed no inflammatory diseases, no Lupus, RA or Sjogran’s Disease. So now what, how do we manage my pain? He said that the pain management doctor I had seen earlier in the year does not look at the whole body, he just injects joints. That was something I already knew and why I left. I told him, I need a pain management doctor what looks at me as a whole, someone that understand I am in chronic pain over my whole body, not just specific joints that are injectable. Thankfully, he had a doctor to refer me to that is close to home. I’m now all done with the Rheumatologist, exchanged him for pain management. But I now officially have a diagnosis of hEDS, Hypermobile Ehlers Danlos Syndrome. This was based off of his finding and how I scored on the Beighton Scoring. I scored 7 out of 9.
Physical Medicine/Spine
This afternoon I had a virtual appointment with my spine doctor. 15 minutes after my scheduled appointment the MA logs in to tell me the doctor is running late as usual. She can be anywhere from 30-60 minutes behind. I made it clear that I was not going to sit on my computer for more than a half hour. She agreed to call me back when the doctor was available. An hour later I received the call. This appointment was the most frustrating. When she asked me why I stopped taking each pain medication that has been prescribed this year, I needed more information. I couldn’t keep track in my head. When I asked if the first she mentioned was the one she prescribed me back in August, she said she didn’t know. You’re the one sitting there, looking at your detailed notes and you can’t tell me the name of the medication you last prescribed??
We ran down the list, this one made me dizzy, that one made me nauseous, the other had both side affects. She tried to convince me to go back on and earlier one she prescribed even though it didn’t help with my pain. I started to reach my breaking point. I so badly wanted to ask if this was all she does, prescribe pills. She then suggested steroids and dose pack. I told her that it makes me very irritable and does terrible things to my stomach. I was not up for trying that again. She kept suggesting medications or going back to taking medications I previously tried, and suggested dry needling with lidicane. I finally told her, I would rather deal with the pain until I see the new pain management doctor than try another pain med. I want to have a clear head and full understanding of all my pain going into the appointment with him. She wished me luck and there was no need to schedule another appointment with her.
When the Bough Breaks
After my appointment with the spine doctor I was in so much pain. I struggled sitting in my chair for our hour long appointment. My neck started getting weak and I just wanted to be DONE. I texted my husband saying, I’m done for the day, I just need to lay down. I am tired of seeing so many doctors, tired of them not knowing the complications of EDS or having a solution. I feel like a lab rat, try this, try that, do this therapy, do that therapy. Are you in water therapy or land therapy? It recently got to the point that I had overlapping specialist and didn’t realize it. I’m tired of hearing go here, go there… When I was telling my husband about the appointments, I said I feel like a pin cushion or voodoo doll.
Putting the Team Together
I have my orthopedic who fully understands EDS. He takes the time to listen and explain things thoroughly. While he referred me to the first pain specialist, we can’t always get it right the first time. He was the one that said I am at the point where I need to form a care team.
The rheumatologist fully understand EDS and also takes the time to listen and explain. He is open to options and learning more. He had not heard of the Prime documentary Complicated. After our appointment today he plans to watch it. He said that it’s too bad that EDS is such a mystery to modern medicine and there’s so little information for doctors.
Prolotherapy had some success but has been put on hold for now. I want to focus on my time with Osteopathic manipulation sessions and PT. The DO that I started working with has an extensive understanding of EDS and is very in-tune with my issues.
Pain management is a TBD. When I called to make the appointment, I was asked where my pain is. I said, hips, back, left foot. I explained that I have EDS and the pain is everywhere but mostly in those three areas. She puts me on hold and came back to ask which area is the most pain. Hips for the win.
PT, he’s great. He took the time to try and figure out what makes things worse/better for months. He wanted to make sure that I only worked with him while he tried to figure me out. Good luck Matt, I’m still trying to figure myself out. He has an understanding of EDS and my limitations. I look forward to working with him again.
Osteopath, jury is still out as I’ve only had one appointment. I left feeling good and understood. He has an extensive knowledge of EDS and was able to pinpoint my issues almost immediately.
The most important member of the team, my therapist. She often has some great suggestions for a different approach to treatment. I don’t see her often but she’s always available when I need to talk through all of this.
I hope to wrap up the year with my core team in place. Time will tell.
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