azmusiclover Posted March 20, 2013 Report Share Posted March 20, 2013 I met with the Rheumatologist yesterday for the first time. I'm definitely very hypermobile and I also got the fibromyalgia diagnosis confirmed. Funny, it took a year to see the Rheum from when I started at Mayo because the consultative med doc didn't think the fibro was there in my case because I wasn't depressed. (obviously he didn't know me, and doesn't realize how much stress it takes for me to get "depressed") I hate that stereotype btw. Anyway, Rheum wanted me to start PT to help strengthen my core and keep my joints from hyperextending so I don't injure them, and of course help with the pooling with the POTS. They called me to schedule as I was driving home and I had my first PT appt this morning. I am SO TIRED. I don't think of myself as terribly deconditioned, since I have the three kiddos and I participate in PT from time to time with them, I try to do yoga and swim when it's warm. I can walk around. But, after 45 minutes with the PT, just doing some light things, I am beat. I like it though and I hope that I can keep going and it will do something for me. The PT actually knows about POTS so I am happy about that and I hope she can help me, whatever that looks like. They are also scheduling me with a doctor there that does biofeedback. They want me to see if it will help me actually fall asleep instead of me just laying there, not getting comfortable, staying awake, can't turn my brain off.... I'm pleased that Mayo is starting to incorporate more non-traditional therapies into their treatments. When they start offering massage for fibro and other pain conditions I will be over the moon. LOL. I just really would like to avoid medication since I'm so med sensitive. Anyone else tried PT? Biofeedback? Thoughts? Quote Link to comment Share on other sites More sharing options...
Mydoggielovesme2 Posted March 21, 2013 Report Share Posted March 21, 2013 I just finished several wks of PT. It was so much harder than I thought it would be. But I was very deconditioned. I am hoping to start again when we return from Az. I suggest not overdoing it. Ease into it. Drink lots of fluids so you stay very hydrated. And don't get discouraged if you have a bad day. POTS has a way of rearing its ugly head, even when we're trying to do something good for our bodies. Best of luck to you. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted March 21, 2013 Report Share Posted March 21, 2013 AZmusic, Do you like your rheumy? Did that doc diagnosis you with hypermobile? Is the pt taking the hypermobile into account?I'm curious as I'm dealing with some of these issues too. My current rheumy is out of network, so it costs more. If it is a mayo doctor they are actually in network for me. Then last year I did aqua pt to strengthen for the autonomic neuropathy and I actually got worse. I didn't realize at the time I was hypermobile. So, I guess I'm wondering on what they are doing differently if hypermobile is involved. I wouldn't mind knowing the physicians name. You can pm if you don't want to post here.Thanks a bunch! Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted March 21, 2013 Author Report Share Posted March 21, 2013 I did like the rheumy I saw. I'm happy to pm you the info. I had to get a referral from one of my other mayo docs for the rheumatology consult. They don't take self-referrals in that department. I tried LOL. Dr. Goodman first diagnosed me as hypermobile and they confirmed it at my rheum appointment yesterday. I definitely meet the criteria for "Benign Joint Hypermobility Syndrome" and they feel that's the cause of my fibromyalgia. My PT is very knowledgeable about both POTS and being hypermobile. She was very specific with the exercises she wants me to do and how to do them- where exactly to stop, how many, how much etc. Gave me two therabands. Very kind, very instructional and also very "you tell me what you can do today" understanding. She told me that I need to stop doing yoga class for now until my core is more stable because I could really injure myself since I'm so flexible my body doesn't know where to stop. yoga is one of the things I like to do exercise wise when I can!!!! She did say I can do a little bit on the video I do with my kids, but how to adjust my body. At some point she wants me to go to a Pilates class. Yeah, and I'd like to work again too. LOL. I'm so sorry that your experience with aqua PT was something that made you worse. I am guessing in water the body really doesn't know where it is in space so you could go too far with the hypermobility. So hard when you try to do something to feel better and it ends up making it worse. Look for my pm! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted March 21, 2013 Report Share Posted March 21, 2013 Hey I just saw you posted here too. I read your pm first. Thanks for the pt info, that is what I was hoping to hear that they new how to address it. Maybe you could pm who you are using for pt. Might be to far for me to drive, but they may have an office and a knowledge pt down here in chandler. Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted March 21, 2013 Author Report Share Posted March 21, 2013 I am actually getting PT through Mayo Clinic at the Mayo hospital. They offered it to me at the hospital and at the Clinic on Shea. Hospital is much closer for me. It's a long way from where you are. If they had me doing that last year when I was in the East Valley, I would not have been able to do it. Quote Link to comment Share on other sites More sharing options...
looneymom Posted March 22, 2013 Report Share Posted March 22, 2013 I would really like to know what kind of exercises your PT has you doing for core. I took my son to MAYO back in December of 2011. I live in OKlahoma and our insurance would not allow my son to go back to MAYO to recieve PT from them. My son struggles to maintain chest, shoulder and other core muscles. Quote Link to comment Share on other sites More sharing options...
azmusiclover Posted March 22, 2013 Author Report Share Posted March 22, 2013 She gave me a printout of the exercises she wants me to do at home. I'm not sure how to describe them because she has me doing them in a specific way for my body. PT is funny like that, because our bodies are so different what works for me may not work for someone else, or may cause someone else pain, where it wouldn't hurt me. She has me doing bridges for my core in various ways. Which is good because I am laying down. I did get a pamphlet from Dr Goodman the last time I saw him with some exercises specifically geared toward POTS patients. Can you call Mayo and ask them to send you that handout? It was pretty descriptive. Also, can you see about getting PT locally? Would your son's doctor write a script for it since your son is struggling to keep muscle mass? Quote Link to comment Share on other sites More sharing options...
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