babettess Posted February 16, 2009 Report Share Posted February 16, 2009 I recently started working with a physical therapist to help with chronic pain that I have from two car accidents, fibromyalgia and most recently the chest pain from POTS. I was very impressed when I first met him as he has experience working with people with POTS. (I live in a very rural area and even the largest teaching hospital/university near here doesn't even know how to treat POTS.) In the two weeks that I have worked with him, I feel better than I have since I started getting ill over 7 months ago. He has me doing exercises to "desensitize" my nervous system. These consist of simple stretches and some balance work while sitting on an exercise ball. He does some lymph drainage work and some massage on my neck/shoulder area. I have had less pain in my neck/shoulder area than I have had in probably 10 years. The neck pain/tightness and chest pain/tightness are so much better and have actually been gone for about a week. Most importantly though is that I haven't been as POTSY lately. He has explained where my pain is coming from in each of the affected areas and even figured out why I have been having a tightness in my throat like I'm being strangled. I have actually been using the wrong muscles to breathe with when I'm talking. So I have been practicing using the correct muscles to breathe while talking and talking less to give the muscles a chance to feel better. My husband loves the explanation for that- He's always known I talk too much! Well I've always known that too......Guess I think I have alot that needs to be said..........Believe me if this was radio you would know what I mean.....Anyway my question is- Could this physical therapy actually be helping me or am I probably just going out of the POTS flare that I've been in? I would love to think that something is finally helping. It's been so encouraging to be able to get up and do some really big things like cooking, laundry, driving to PT and actually a little work!!! And being pain free is quite a blessing!! Quote Link to comment Share on other sites More sharing options...
turtlefairy5 Posted February 16, 2009 Report Share Posted February 16, 2009 I don't know if it's helping with your POTS or not, some other people can weigh in on that, but it certainly seems to be helping with your pain and seems to be encouraging you so, whoo-hoo physical therapist? Is he cute, too? haha. Quote Link to comment Share on other sites More sharing options...
flop Posted February 17, 2009 Report Share Posted February 17, 2009 I've been working with a personal trainer for quite a while now and it sounds like he does similar things to your PT. I find massage very helpful in reducing pain and muscle tension which seems to help with the POTS symptoms.Flop Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 17, 2009 Report Share Posted February 17, 2009 I think it depends on the experience and technique of the PT. So much of physical therapy and dysautonomia seems to be aimed at building strength and reconditioning. I've been to over a hundred PT appointments over the past 2 years for treatment of a hip and back injury after a car accident and surgery. After getting showered and dressed, riding to the clinic, and walking into the building (the PT just lets me walk back to her office and lay down) I'm exhausted and often am worn out for the following day or two. These sessions were focused on strengthening and were before I'd been to Mayo and this PT didn't really understand dysautonomia. But when this PT worked on mobilizing my thoracic spine I had a decrease in my adrenaline symtoms and even skin pain for a few hours . Very wierd, but it felt good! She said this could be explained by perhaps relaxing the sympathetic nerves which run right behind the thoracic spine. So I'm having more back and hip pain lately and am going to resume PT with a different therapist ina few weeks. This PT understands POTS and uses very gentle techniques to release tight muscles, scar tissue, align my back and SI joint, etc. She does want me to spend time in the pool (starting with 10 minutes a session and assisted by a pool therapist). Dr. Fealey also strongly suggested me using a pool. I'm a little more comfortable with this therapist because she knows my limits!!!Having back/neck/and hip problems, I understand how decreasing your pain could certainly make you feel better! Hope you continue to get good results! Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 3, 2009 Report Share Posted March 3, 2009 I just finished my second PT visit today where the PT is treating my lumbar, thoracic spine and pelvic/leg pain. I noticed after each visit that my HR was normal! Today, I was having horrible pooling? bulging veins and HR over 100 no matter how much salt/water I took in. During PT she worked on facial restriction of my T-spine followed by my left hip (2 hip surgeries in past 2 years). While she was working on my hip my whole body got cool. My hands which were red and hot all day are now cold and my face was very flushed! I also have more mind clarity, less chest pain, and easy breathing. Wow! I noticed last time that I had more energy for about 24 hours after being treated. My HR is now 60-70's and BP 120/80's!I don't think this is necessarily a cure, but I'll take whatever relief I can get. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 3, 2009 Report Share Posted March 3, 2009 Okay, back to reality. Veins are bulging again. Hands getting red and hot. Standing BP 130/87 P98. Still feel like I have more energy than before... The PT is specifically targetting my thoracic spine with the hope of treating some of my sympathetic hyperactivity. She did a "scratch test" where she ran her finger up my thoracic spine and whatever areas are redder shows the areas of sympathetic dysfunction. Well, my entire thoracic spine went flaming red. She was trying "skin rolling" to loosen the facia (the layer of tissue just under your skin) there and couldn't even pick up my skin because it was so tight. She had to gently stretch my skin before the facia would budge at all. I don't know if this is just hocus pocus, but I have arthritis in my back and this at least gives me some pain relief! Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 3, 2009 Report Share Posted March 3, 2009 Hi All, Wow! Very interesting... I have been seeing a PT for over a year and a half now who does craniosacral and Upledger myofascial work. Insurance stopped paying long ago, and I had to switch to private pay which has been a financial strain, but I feel worth it for now. She is treating my myofascial pain (especially neck and shoulders), headaches, TMJ, and autonomic symptoms. She has also talked to me about the sympathetic nervous system connection with restrictions in the T-spine. I usually feel better after my PT sessions, but unfortunately the gains don't last very long. That being said, the work she does seems to make a positive difference on my pain and autonomic symptoms and those little moments of "somewhat better" are priceless! The craniosacral work also seems to help quite a bit with what I can "spatial disorientation." (Feeling like the floor and my body are moving in all directions - kind of like trying to balance on a ball). One thing that I can throw out there that has helped me has been the use of kinesiotape. It decreases the pain and spasms/tightness in my traps, SCMs, and other muscles immensely - I literally cannot tolerate being without it on my SCMs for more than 24 hours without a big flair in my symptoms. Furthermore, my PT has mentioned (but I have not tried it yet) putting a strip of the kinesiotape over the T-spine in an attempt to decrease some of my autonomic symptoms. She said it can also have this effect, although to a lessen extent, when place across the soles of the feet. I have tried putting it on the soles of my feet, and have noticed a small difference, depending on what and how bad my symptoms are. (Apparently it has some effect by re-directing the nervous system to the stimulation on the numerous proprioreceptors on the soles of the feet). I wanted to mention looking into this because some of you mentioned that the work on your thoracic spine was helpful but short lived. It might be worth a try if you want to look at the kinesiotape website (although it does not make mention of using the tape for this purpose) it's www.kinesiotaping.com. Just a thought. Some of you might be familiar with the kinesiotape because it became more popular after the 2008 Olympics... it's helpful for neuromuscular re-education, acute and chronic pain, and promoting lymphatic drainage. I'm sure everyone responds differently, but it has been a wonderful addition to the tools I have to address my symptoms (mainly muscular symptoms vs. symptoms of dysautonomia, although it does help decrease my dizzniess and wooziness some). Anyways, those of you who have had success with PT, I wish you continued positive gains. Any modality that helps even a little is certainely worth pursuit!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
janiedelite Posted March 3, 2009 Report Share Posted March 3, 2009 Hey, thanks for the heads-up on the kinesiotape. I'll definitely ask her about it the next time. She's also done the craniosacral stuff on me in the past and it feels so good... I'm thankful that my insurance is paying right now. When I asked my PCP for the PT script I told her my reason was lumbar and thoracic pain, which it is. We're just thinking the reduction in sympathetic symptoms is a side benefit! Unfortunately, I'm pooling more than ever right now and the skin pain kept me up most of the night... Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 3, 2009 Report Share Posted March 3, 2009 Hey, thanks for the heads-up on the kinesiotape. I'll definitely ask her about it the next time. She's also done the craniosacral stuff on me in the past and it feels so good... I'm thankful that my insurance is paying right now. When I asked my PCP for the PT script I told her my reason was lumbar and thoracic pain, which it is. We're just thinking the reduction in sympathetic symptoms is a side benefit! Unfortunately, I'm pooling more than ever right now and the skin pain kept me up most of the night...Sounds like it's worth an ask. If your PT does craniosacral and myofascial work, then she might be familiar with it. Although they have to complete specialized training to use kinesiotape, maybe she could look into it for you if she doesn't currently use it. Good luck. Let me know if anything works out with it for you. ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
yogini Posted March 3, 2009 Report Share Posted March 3, 2009 I like the idea of the kinesiotape. I looked it up online and it seems cheap enough. Think I will give it a try. As for physcal therapy, I think it's probably not a cure, but can help with symptoms. It is great to have a professional person guide you into increasing your movement and activity, esp if it's covered by insurance! Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 4, 2009 Report Share Posted March 4, 2009 Look into Integrated Manual Therapy or IMT. Both my son and I (and others here) have benefitted from it. Do a search on this site to learn more. Julie Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 5, 2009 Report Share Posted March 5, 2009 Hello,I wanted to make one more post regarding using kinesiotape on the thoracic spine to reduce symptoms of dysautonomia. I wanted to double check the specifics with my PT before posting this. Here is the recommendation...Place the tape directly on the spine beginning at the level of T12. Curl forward so that your spine is rounded. Run the tape up to the level of T1. Ofcourse you will need someone to do this for you. They should be sure to follow the directions for skin prep and applying kinesiotape that come with the product. It's usefulness is based on sending inhibitory signals to the sympathetic autonomic nerves that emerge through the thoracic spine levels.If anyone tries this and has success with it please let me know. I do plan to try it myself. Good Luck, Broken_Shell Quote Link to comment Share on other sites More sharing options...
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