Kat want to thank you for the the url! I have said for the last two years the only thing that gave me some relief was ultra sound, which was helping when was going to PT but then they wanted to add weight lifting etc etc and would kick all pain in, so they more or less gave up on me as they felt they could not prove enough to insurance they were helping. Did not seem to matter that I said the ultra sound was helping the pain level, but this is truly good news to see that just maybe is something I could do at home. Am anxious to see what you feel about it and to see if it helps you.

Definately get the book - it's very similar to the Pain Management Course that I did that helped me so much. Everyone on this board has mentioned bits of the underlying philosophy, usually found through trial and error, and it looks really interesting; a different perspective on managing the pain by focusing on you as a whole person and not just someone with MPS. Keep us posted about the sonic relief thing as well - fingers crossed it helps.

Thanks for the feedback Bisja on the url. I hope the portable ultrasound arrives soon and I will let the group know if it works for me. At PT they use the big one on me too and it helps release my tight back muscles between T10-T12. I feel very lucky to have been referred by my physiatrist to a PT who does understand MPS and realizes how SLOW the rehab process will be. She has adapted her program to my needs and pace.
Pumpkin, thanks for your input on the book. I will buy it and hopefully it will help me deal with the fear of slowly adding more movement into my life, which usually causes me additional pain. My physiatrist reminded me that he and my PT, Catalina, were there for me, to support me through this rehab process, which made me feel better. He also stresses that it will be slow, but it is possible to break the pain cycle. (I'm going to post something on that issue later.)

Hi Kat,

Thanks for sharing the information. I checked out the book on Amazon and I ordered it. Maybe we can compare notes. :)

I'm looking forward to hearing how you do with the ultrasound device. I start PT in a few weeks. I'm very apprehensive but it'll be interesting to try the ultrasound. My surgeon recommended it.

I happy that you have a good support team and a promising treatment plan.

Tink

Yes, I'll be ordering the book too! I love reading books like this (all books to be honest), and take something from each one to add to my own story. The book I'm reading at the moment is 'Integrative therapies for fibromyalgia, chronic fatigue syndrome and myofascial pain' - it's a good general book, but doesn't really have anything in I didn't know before but does have a nice section on 'circuit overload' which I really rather like :-)
"There will be days when your battery is half-drained before your feet hit the floor. ..make sure you leave enough 'spark' at the end of the day for overnight reenergizing...some days you may have to recharge for the whole day so that you have energy for the next one. This is not a defeat; this is being smart."
Isn't that great?! I'm going to stop saying I have to rest and start saying I'm recharging my batteries!!!

I totally hear the fear about increasing activity. When I started the pain management course I was your typical 'no I can't do that' girl and they had to really push me to do a different exercise plan (and I wasn't the worst either!) We ended up having a big discussion about what we were all worried about - the fear of making the pain worse - and how we could cope with that. To be honest the best thing was how slowly the exercises were built up - literally holding a stretch for 5 seconds at first and increasing by 2 seconds a week!! Snails pace, but it took the fear out of it and has had the best long term benefit of any exercise programme because I now do that with all my exercise (like swimming - I'll increase by 1 length a time now). Plus I had a big session on accepting that a small increase in the pain as a result of gently increasing my exercise wasn't a failure and was actually better because of the benefit to my body of exercising and doing more and I had enough tools to manage the pain.

Wow, I wasn't expecting to prattle on that long, but I really empathise with you on this one! Plus I'm feeling a bit better generally :-)

I have a portable ultrasound machine that I ordered several mos. ago. I really like it and used it often when my sijoint and lower back was hurting. It really helped with my pulled adductor muscles. I think I ordered mine from the MendMe Shop, but they are probably all about the same. I also ordered a Tens Unit that I have also enjoyed using when having severe back and leg pain. I am so thankful that I don't have to use that much anymore. I think the PT and injections are finally helping!!! Also the stretches that I do about 3x daily helps, especially with the psoas muscle. Hope you have success with the ultrasound unit.

Kat, I Just want to wish you all the best with the new machine. Ultrasound always helped me so much when I was doing PT after all my surgeries. I never thought of it for the myofacial pain. I can't wait to see how you do with it. I also wanted to thank you for the book suggestion. It is on it's way! I am always looking to learn another way to deal with the pain and it's far reaching effects. I am so happy you have your Dr and your PT on your side to support and guide you through all this. What an important part of your therapy!
Pumpkin, I love the battery analogy. It is perfect! I can really use that. I have had to take days where I needed to "recharge" because I have overdone. Now maybe I can relate more to what my body is doing without the guilt involved. I am going for an evaluation on Thursday for a Pain Rehabilitation Course that sounds similar to what you went through. I hope to get as much out of it as you did.

Pumpkin, What you thoughgt might be "prattle" was very interesting and appropriate for me, so please keep prattling. Your story about your fear and how the pain group slowly got you to increase the length of your stretches etc... resonated with me. My PT is doing the same thing, very slowly and gently increasing what I do. Also, she told me the same thing about the soreness that I feel afterwards; it just means the muscles are working and they aren't use to it. If I recover in 1 or 2 days, that is okay. Anything more than that and she will slow down the pace of the rehab program. I like that she is willing to adapt to my feedback. Thanks for sharing your experience.

Wardellrd, glad to hear that your ultrasound unit worked for you. That is a good sign that it will help me and hopefully others in this group too.

It is great that Pumpkin, Tink, and Panla bought the book too. Mine should be arriving in a week. It will be helpful for us to compare our thoughts about the book's information and how we can incorporate it into our lives so that pain doesn't take over.

My main problem is that I have curtailed all my outside activities, except going out to eat, because it has been my experience that my back isn't flexible enough to adapt to the chairs in theaters etc... Therefore, I don't go to movies, plays, musicals, etc... I do have a back support that works for the chairs in restuarants, Does anyone have a recommendation for a good back support??? Kat

I have several different back supports that I use. Somtimes it depends on the type of chair that you sit in. I have a zero gravity chair that I have in my sun room(I call it my happy room because it is bright yellow.) It is a great chair that I take to cookouts and to my friends' pools. It totally takes the pressure off your back. They can be purchased at Bed, Bath, and Beyond, and other places.

I also have a back support that I like. You can sit on it, or lean on it. It is called "back vitalizer." I tried it out at PT and ordered it from the internet. I also have a small back pillow that I can put in my purse and use it at resturants, etc. I am like you, I don't feel strong enough to go to the movies yet!!! I have just as much fun watching them at home. We just watched several this weekend, and I can get up and stretch,etc. when I want to.

It seems like I have purchased so many different things for my back that I could open up a medical supply store!!HA!!

Thanks for your tips on back supports. I will check them out. Also, I need a better office chair, so I'm going to a store called Relax the Back to see if I can find one. The problem is that I don't know until the next day. That is when my back lets me know big time that it wasn't happy with what I was sitting in. Need a place that will let me return it if it doesn't work for me. Don't know if such a place exists.

My book arrived! I can't wait to start reading it.

Anxious to see what you think of it!

My book and Sonic Relief arrived yesterday. I just started the book. Evidently there are exercises to do at the end of each chapter to help incorporate the ideas into your life. Can't wait for us to discuss it.

I can't use the Sonic Relief yet, because yesterday the PT put Kinesio tape on my hamstrings and along my spine covering my pain area of T10-T12. I can't do ultrasound on top of the tape, but maybe I can try it on another area that is sort of sore/tight. Bisja, I know you are waiting to hear my results, so sorry that I can't use it on my worst pain areas until I take the tape off.

Don't worry about me Kat you just get better and if that tape is helping you thats fantastic!

My book arrived yesterday as well. Very interesting that the first chapter is about acceptance. The very thing I am trying to come to terms with. I think this book is exaclty what I need. It is very similar to the Pain rehabilation program I went to for the evaluation yesterday. Minus the long drive and the therapy (pt & ot) that is involved. I need to make up my mind if I want to do this. Even the Dr. knows what a long trip it is.

I am a big believer in the mind/body connection. I do think we have some control over our pain. I do stress the word some. I think the way I handle my pain is wrong. What I think and feel about it and how my body processes it, could be different. That is what I want to try and work on. I have overdone for so long I don't know how to pace. Just finding out that these things exist have been promising for me. I am not sure I am best at doing this alone. Then I have to be accountable for my answers. I have a tendency to look at the questions and never fully answer them. Anyone else do that? I would love to hear what everyone else thinks about the book. It would be great to discuss it!