Hi Allison,
My name is Loretta and I have been keeping up with your ups and downs. Sounds like you have a good Neuro. Dr. I'm glad you are with a Children's Hospital. I know how hard physical therapy is-12 years ago the day following left breast surgery, my arms swelled up big time. After they withdrew fluid 2-3 times, shoulder froze up. Sent to a Rehab. Dr. to oversee physical therapy. I started massage therapy on my own ,(insurance doesn't pay for it) a hour before the physical therapy. It softened the tissue and I felt It would make the physical therapy go faster. After about 50 pt sessions, they sent me to ortho surgeon and we wanted to operate and break my shoulder adhesions. I said no thank you, will stick with the pt. Didn't know at the time I had RSD, but glad I said no, as we all know surgery is not a good thing for RSD'ers. Another 50 sessions, and I had nearly full range of motion. So glad I did that, it was torture, but have full use of arm now. They told me it might happen to other shoulder. I thought that sounds strange. We moved to Arizona, our daughter went to college there, court reporting school. A few months later, the right shoulder started to freeze up. Found a great physical therapist and got that fixed much quicker. He had traveled as a pt with the pro golf tour. He set up a pt practice and it was just a mile from our house. We have a lot of golf courses here, and a lot of pros live here. The weather is good for RSD for the most part. Oregon, where we moved from is rainey, and damp. My fathers family was from England.
Anyway, I read your comments about pt and for most of us, that is way to go, as surgery usually complicates it.
We have one daughter, age 29 now and married. You sound so much like her, kind and caring about others, with a lot of compassion. determination, and strong ,yet sensitive. Her kind of work isn't easy, but very interesting. Doesn't work in a court room usually, does depositions, pre-trial- transcripts, has done rsd malpractice case.
How is your foot Allison? Is there a pt with water therapy, either hot tub or swimming pool. I've even done work in my bathtub. My toes started to curl and lift off the floor. My Doc gave me exercises, I did them and eventually toes touch the ground again. Swimming has been my friend since getting this. Of course, I couldn't swim when my shoulders were messed up. The exercise was sqeezing my toes tight and release. Doing them in the morning after I could get up and around, meaning after morning meds.
I've had this Dr. for 4 years or so. I started having spasms, electric jolts, lifting my head off the pillow from a sound sleep. scarry. just a lot of involuntary movements. I went on neurotin and had to go up to 3200 mg for everything to stop. made me tired, gained weight, I'm trying real hard to loose it. About a year ago, switched to Lyrica, which I like much better, and helps with pain more for me. On 300 mg. a day. I was on 400 for a while, maybe 6 months, then back down to 300. I see him once a month. Hoping I can go down to 200. He is a pychiatrist, neurologist and pharmacologist, schooled in New York and practiced there and moved here. He teaches on the west coast weekly, so just practices part time. Believe it or not, I found him out of the phone book! smile
My heart goes out to you, Allison. I know you miss your 'life' school, and friends. That was the hardest thing for me, my life changed dramatically too. I have full body RSD.
My husband is really a trooper. He always did have energy than myself. Your mom sounds like a doll. My daughter probably knows too much about RSD, she is sensitive, so I try to save her from the day to day traumas, and my husband too. But I can always talk to him, they have both been with me to my Dr. asked questions and I'm glad he met them.
Take care, and thank you for all your encouragement we all get from your posts. Say Hi to your Mom. Loretta