The Trials and Errors (With Mostly Errors)
Before my official diagnosis, I have had multiple doctors tell me that they could solve my pain. Primary Care Physicians, Orthopedists, Physical Therapists, Chiropractors, you name it.
I've listed below some of the different experiences and treatments that I have tried in the past. Do you think any of them were helpful?
Besides being told to just rest and take ibuprofen, the first real "solution" presented to me was physical therapy. I started going when I was 14. At that age and in new situations, I was very timid. Most people that know me can't imagine that I was ever shy.
I hadn't ever been to PT, so I didn't really know what to expect. On my first visit the PT told me he thought I had arthritis and that I had probably dislocated my shoulder at some point. Once he saw how far my scapula stuck out, he had me walk around to the other Physical Therapists and show them. Shy little me was not a fan.
Every time I went there I had to do 30 minutes of an arm bike, and then strength exercises. The end to my time there was due to an injury caused by an exercise they had me do. I ended up going to the ER because I had severe chest pain. My anxiety of course then skyrocketed. They diagnosed me with Costochondritis (which they told me essentially meant I sprained everything surrounding my ribs that attached to my sternum).
Fast Forward: I had multiple stints of PT at different locations, and hated it every time because I never felt listened to.
Fast Forward to now: I found a Physical Therapy location that I love. It is the first positive experience I have had with PT, and the reason I initially visited my Primary Care Physician to discuss possible EDS. PT has become something I look forward to now. Just a reminder to not give in to mediocre care; find someone that makes you excited to try and heal!
I have had three different doctors try steroid injections on me. The first was Toradol, and the second two were Cortisone.
All three times I had a 0% pain decrease. And every time, the doctors were thoroughly surprised.
I truly thought I found the answer to my pain after I had a rotator cuff repair surgery. I'm going to save that full story for another post, but long story short... 0% improvement.
After trying the traditional route of recovery, I tried for something alternative. I found a well-reviewed Chiropractor who said he was sure he could get my pain to go away. I had hesitations (especially about my neck getting cracked) but he assured me everything was safe.
In addition to adjustments, they also did laser therapy and something with a machine that made my shoulder feel like a toothache.
Guess what? No improvement.
Platelet Rich Plasma Injections
This was one of my more recent experiences. In the procedure, they took my blood, separated the plasma, and injected it into my hip and both shoulders. It was about 50 injections into my joints. Fun fact! I also learned I do not fully react to numbing injections🤦🏼♀️
The recovery process was rougher than I anticipated. I couldn't really move either arm without shooting pain and stayed like a T-Rex for a couple of days. My right side eventually returned to my normal, but my left side presented challenges. It took 7 weeks after the procedure to be able to put my left hand on my hip.
I perplexed my PT, PCP, and shoulder doctor because I could fully lift my arm over my head, but could not (still can't) internally rotate my elbow. I had never had that problem before the PRP.
The "improvement" stage is 6-10 weeks. 9 weeks have passed since I had the treatment. So far my hip feels a little better, my right shoulder feels the same, and my left shoulder feels worse. I have a strong feeling I won't instantly feel better next week.
However, I really like this doctor, and have faith that he knows what he's doing. In effort to try and help the shoulders, he decided on:
As of August, this is the most recent treatment I have had. The process is fairly similar to PRP, but instead of my plasma, they injected a sugar solution into both shoulders. I didn't have my hip done this time, so only 30 needles...woohoo!
The purpose is to inject an irritant to promote the body's natural healing process. I need to have two more sessions before I should see improvement, so I'll write an update once I'm finished.
Did you make it all the way through? It's quite a list, but hopefully it is all leading towards finding what works best for me. I would also like to include that all of these treatments initially begun for my right shoulder. It's my worst joint by far. However, I've also had issues with my hip, both ankles, feet, thumb, and of course the left shoulder.
Be Brave. Stay Kind. Much Love.