Jersey Girl Posted November 9, 2004 Report Share Posted November 9, 2004 I felt somewhat validated after reading the handout on treatment of orthostatic intolerance given to patients and their families by Johns Hopkins University Children's Center Chronic Fatigue Clinic (Febraury, 2003)--there was a post for this link under muscle weakness thread yesterday. I printed it out and on page 6 it notes "a high frequency of postural asymmetries and areas of adverse mechanical tension in the nervous system as contributors to pain, lightheadedness, and fatigue in manh of our patients with orthostatic intolerance." It notes that "several weeks of gentle manual pnysical therapy often prepares them to tolerate the mild aerobic exercise that would have acaused a flare-up before hand." and "the diagnostic expertise of a physcial therapist may be essential to identifying problems. Manual techniques that our colleagues employ include gentle neural mobilization (or neural tensioion work), myofascial release, and cranio-sacral therapy."I have had a stiff neck,upper back, and shoulders since this all started and have yet to be offered physical therapy. I have spent my own money going to a highly trained neuromuscular massage therapist just to be able to turn my head and not be in constant spasm all the time. I was also self-referred for cranio-sacral therapy that the insurance only partially covered. Recently I have had a massage therapist work on my left leg and hip to restore some function. She uses myofascial release and neuromuscular massage as part of her treatment. She also measured my hip flexion and found that my left hip rotates 5 degress anteriorly more than the right. I definitely feel better after seeing her. Now I know why that I'm not alone in experiencing some relief from this hands on approach.Physical therapy and exercise treatment are listed under their Step 1 treatment plan for everyone. I get angry that after all the doctors I have seen and told them about these issues that I wasn't told that this would be helpful. I had to figure it out with trial and error on my own. It's not like I haven't been seen by an autonomic specialist. Why do kids get the benefit of the doubt when it comes to illness? Granted pediatricians are much more caring individuals. Why don't adults get handouts as good as this one?The handout also notes that "therapy has to be tailored to the individual and usually requires persistence and a willingness to try multiple methods." I can't even get a phone call back from the doctor.So I am curious to know if anyone has ever been prescribed physical therapy for their "adverse mechanical tensions?" Martha Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 9, 2004 Report Share Posted November 9, 2004 My POTS specialist, who studied and cared for patients at Johns Hopkins before joining his current practice, told me at initial diagnosis that physical therapy would be prescribed if I didn't show notable improvement on my own within months. Since I did improve greatly and now exercise on my own, he hasn't prescribed it.It seems this should be in the toolbox of any doctor treating POTS!Katherine Quote Link to comment Share on other sites More sharing options...
yogini Posted November 9, 2004 Report Share Posted November 9, 2004 Martha,My mom and I were thinking the exact same thing last night when we read through that article. I have been told to exercise, but I have no idea what to do, how long, etc. I worry about pushing myself too hard, or not enough. Different articles provide different suggestions on how to exercise for POTS, but a physical therapist could tailor the exercise to our personal needs. It would be so helpful to have this, even if only for a few visits. I am going to try to get a referral to a physical therapist, but I am skeptical it will happen...It is frustrating that there are simple things we could probably be doing to make ourselves better, but noone to point us in the right direction.Katherine, from this and other posts, it sounds like you have a great doctor. That's really terriffic. Wish there was someone like that in this neck of the woods!-Rita Quote Link to comment Share on other sites More sharing options...
DancingLight Posted November 9, 2004 Report Share Posted November 9, 2004 jersey girl...when you said "i can't even get a call back from the doctor" were you referring to doctors in general or a specific doctor at hopkins?i am currently doing the PT prescribed in that handout by doctors at hopkins. i am very early in the process and it is too soon to tell if i am having results. mostly, my symptoms are harder to manage right now but that is part of the process...your post had perfect timing as i just got back from PT...and logged on quick. i need to rest a little now...and hopefully will come back to this post later and go into more detail on my experiences.there was something else i wanted to write...aargh...what was it...emily Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted November 9, 2004 Report Share Posted November 9, 2004 Yes, I have successfully done physical therapy to treat symptoms. It helps to call ahead and be sure the PT facility can do the treatments for dysautonomia before you discuss it with your internist/pcp. Also consider asking for a cardiac rehab therapy program. The two times I had a very serious relapse and needed to exercise safely, I did cardiac rehab. It was the best because they did remote heart rate monitoring so I could exercise and focus on getting stronger while they watched how my heart was doing. It took three months to get strong enough to finally exercise at home on my own. I did this again after another set-back. So do ask your internist for either PT or cardiac-rehab.tearose Quote Link to comment Share on other sites More sharing options...
justme Posted November 9, 2004 Report Share Posted November 9, 2004 My wife has been prescribed P.T., but right now it doesn't seem to be doing much good. Her therapist isn't sure if it will help. They are going to try it for another month. Her Fibromylagia may be too severe to respond. I think it is a good idea to at least give it a try if your doctor thinks it may help. Quote Link to comment Share on other sites More sharing options...
Merrill Posted November 9, 2004 Report Share Posted November 9, 2004 Emily--I hope you write more about your pt appt ... I'm curious about what you meant by "i am currently doing the PT prescribed in that handout by doctors at hopkins" ... What handout? Anything that can be shared in some way/shape/form?take 'er easy,m Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 9, 2004 Report Share Posted November 9, 2004 MerrillSomeone posted the link elsewhere on here recently. I have the handout, and didn't realize it was also available on-line until someone posted the link. Anyway, Emily are you refering to exercising in a reclining position? That's the only specific recommendation I recall seeing in that document. It also makes some general statements about PT being helpful to identify certain postures and movements that may bring on POTS symptoms.Katherine Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted November 9, 2004 Report Share Posted November 9, 2004 Merrill:Here it is:http://www.pediatricnetwork.org/medical/OI...ohnshopkins.htm Quote Link to comment Share on other sites More sharing options...
Merrill Posted November 9, 2004 Report Share Posted November 9, 2004 Thanks, Katherine. Funny--I went back and looked at that same link this morning (Thanks, ETOLY, for posting it!) and printed it out. I thought it was an EXCELLENT article--we would all do well, I think, to read and reread it again and learn from it and heed it's advice. I know I will ... I want to study the meds section and see whether I want to ask to try some...I've been ok med free, but lately am experiencing far higher heart rates (hard to imagine!) and more other symptoms. So we'll see.I guess I was hoping that maybe there were specific exercises or stretches that the pt was doing w/her (or that were recommended on the handouts). For example, I have some photocopies of neck stretches that my gp gave me a while back--either I'm not doing them often enough or they don't work anyway. Probably the former.take care,m Quote Link to comment Share on other sites More sharing options...
Ernie Posted November 9, 2004 Report Share Posted November 9, 2004 I go to a physiotherapist every week or so for the injuries on the multiple falls I sustain. He does not treat the ANS.Ernie Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted November 9, 2004 Report Share Posted November 9, 2004 My neuro had me go to physical therapy...and also to a pain management doctor. I eventually needed spinal surgery, however, some folks do get long term relief from PT and/or pain management.Nina Quote Link to comment Share on other sites More sharing options...
geneva Posted November 10, 2004 Report Share Posted November 10, 2004 In the last 4 years I have tried PT on 3 separate occasions. BTW, I have never had a doctor not be willing to give me a script to try. Usually they write "stregthening" as the purpose and the PT always treated me like a cardiac rehap patient. I started out well each time but could never get beyond the 4 week mark during any attempt. Although I would go at the least busy time, the overstimulation would eventually get to me. I could never do ANY exercise if it involved any weights, even 1 pound. ALso my intolerance to exercise has always had a delayed effect. I could do fine during a PT session but spend the next 2 days in bed or on the couch.I found that massage therapy helped and went weekly for 1and 1/2 years but even the touch would over stimulate my delicate sympathetic system in the beginnin. I have a very good therapist who really worked with me...neck and shoulder pain were chronic. After a year and improvement, I started yoga with an instructor who was willing to learn about POTS and how to modify poses. I have continued longer with yoga and had more positive responses than PT and my doctor is thrilled! My opinion is that our bodies will have times when they are more receptive to exercise of any kind and other times when intolerance prevails. I have started and stopped so many times, but am determined to wait a few weeks or month and try again. I have this theory that the ANS can be retrained to some degree if I don't give. When I went to Mayo (not that great an experience) I found 1 thing the doctor said worht remembering......it will take patience and persistent to improve your health. How true!! Quote Link to comment Share on other sites More sharing options...
Guest Mary from OH Posted November 10, 2004 Report Share Posted November 10, 2004 I was Rx PT by my pain management dr before I was dx with POTS. It was for my FMS and MPS. She only wants me to do aqua therapy and massage. Anything else will do too much damage to my body. When I got my POTS dx I called her office and spoke with her to update her. She is aware of POTS and I asked her if she would want to change anything in her trt. She said no. I am grateful that she is knowledgeable about POTS. It makes me feel more secure. At the time, I didn't feel that the PT helped; however, after I stopped, I noticed my symptoms briefly did feel somewhat better! Quote Link to comment Share on other sites More sharing options...
Jaime Posted November 12, 2004 Report Share Posted November 12, 2004 I am doing PT right now, but I do both land and aquatic. Aquatic is really good because the osmotic pressure of the water on your legs forces your blood back up to your central core. This is supposed to help with the POTS. Land exercises are good because what the doc told me was if your leg muscles get stronger the arteries (?) will be more capable of pushing the blood back up to your core. I do have flare ups at PT, but I have been going to this lady for years and she knows how to handle it. Hopefully her experience with me will help her with any future patients she may have with dysautonomia. Also, fibromyalgia or any type of chronic pain usually responds very well to aquatic therapy, but you need to have an aquatic therapist who is very educated in fibro and the water has to be at the temperature that is approved by the National arthritis foundation (I am not sure what it is called). Good luck with PT! Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted November 15, 2004 Author Report Share Posted November 15, 2004 I just came back from the neuromuscular massage therapist and she did some myofascial release which is amazing. I feel so much better after going. She said that the nerves can become entrapped in tight muscles. She did extensivse work on my suboccipital muscles which make my neck easier to move. I wish I could afford to go every day! Martha Quote Link to comment Share on other sites More sharing options...
DancingLight Posted November 15, 2004 Report Share Posted November 15, 2004 Martha,That is great that you tolerated the myofascial release...I hope you continue to find it helpful...you may be on to something for your symptoms! You may be able to open up those tensions and gradually have more energy, and then be able to tolerate exercise, etc.The physical therapy that you saw mentioned in the article...they use myofascial release, cranial sacral therapy and neural tensions to help create smooth glide again in the nervous system. That is a very simplified version.Just make sure you keep the level of treatment so that you can tolerate it and not have a 'flare'...There has been a connection found between neural tensions (these blocks in the system) and symptoms of OI in some people. Maybe you are one of those people!So, keep us posted.So far, I have had trouble tolerating the manual physical therapy of myofascial release, neural tensions and cranial sacral therapy. I go in to a flare so easily and then my neck and everything feel worse. And all of the POTS symptoms too. I am working to find a better balance.Emily Quote Link to comment Share on other sites More sharing options...
geneva Posted November 16, 2004 Report Share Posted November 16, 2004 Martha, that is such wonderful news and I am glad that the therapy is helping you.Emily, good luck with your therapy as well...hope you find a better treatment plan. Quote Link to comment Share on other sites More sharing options...
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