Physiotherapists in Mclean, VA

Generally, PT for EDS has to be long-term, gentle, focused on building tone (instead of aggressively short-term building of muscle through rapidly increasing resistance/weight). Special consideration has to be made to ensure the EDS PT doesn't exceed normal range of motion and that the EDSer doesn't hyperextend joints. It's best to find someone with EDS experience, but quite often not possible; try looking for someone familiar with connective tissue disorders in general, or failing that, someone willing to admit they don't know much and willing to learn as you go. From Ehlers-Danlos Medical Resource Guide (http://www.ednf.org/index.php?option=com_content&task=view&id=2120&Itemid=88889244) A physical therapist who is highly knowledgeable and deeply understanding about connective tissue and joint dysfunction can be useful to long-term health: • use low resistance exercise to gradually increase muscle tone and to help stabilize loose joints; • minimize joint trauma by avoiding joint hyperextension and any high resistance or impact activities; • just as it often takes years for joint laxity to cause significant pain and instability, it can take at least months and usually years to gradually reverse the process via muscle toning exercise. Particularly detailed overview of EDS Hypermobile at http://www.ncbi.nlm.nih.gov/books/NBK1279/ includes this: "Physical therapy: • Myofascial release (any physical therapy modality that reduces spasm) provides short-term relief of pain, lasting hours to days. While the duration of benefit is short and it must be repeated frequently, this pain relief may be critical to facilitate participation in toning exercise for stabilization of the joints. Modalities must be tailored to the individual; a partial list includes heat, cold, massage, ultrasound, electrical stimulation, acupuncture, acupressure, biofeedback, and conscious relaxation. • Low resistance muscle toning exercise can improve joint stability and reduce future subluxations, dislocations, and pain. "Improved joint stability may be achieved by low-resistance exercise to increase muscle tone (subconscious resting muscle contraction, as opposed to voluntarily recruited muscle strength). Examples include walking, bicycling, low-impact aerobics, swimming or water exercise, and simple range-of-motion exercise without added resistance. Progress should be made by increasing repetitions, frequency, or duration, not resistance. It may take months or years for significant progress to be recognized." • • • • • • • • • • • Exercise Treatment of Non-Accident Related Chronic Ankle Instability in Ehlers-Danlos Syndrome http://www.ednf.org/images/stories/powerpoints/eds%20ankle%20presentation.ppt Physical Therapy Management of the Hypermobile Patient http://www.ednf.org/index.php?option=com_content&task=view&id=1330&Itemid=88888988 Kathleen Zonarich, PT — "Achieving Successful Outcomes in Physical Therapy", handout for 2010 conference http://www.ednf.org/images/2010conference/Handouts/Zonarich_3_slides_per_page.pdf Water Training and Ehlers-Danlos Syndrome http://www.ednf.org/index.php?option=com_content&task=view&id=1503&Itemid=88889208 Loose Connections Spring 2008 — Ask the Doctor, page 4-5, D. Nazli McDonnell about PT and exercise http://www.ednf.org/index.php?option=com_content&task=view&id=2013&Itemid=88889234 Physical Therapy Management (current best evidence) http://www.physio-pedia.com/index.php?title=Ehlers-Danlos_Syndrome

http://www.rebalancept.com/

sorry for delay, but responses are not coming directly to me unless I come back to this page, any ideas? Anyway, I have done my PT at Abington Hospital and now manage on my own at gym.

http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=sobi2Details&sobi2Id=714&Itemid=99999999 - although I'm unsure how busy he is.

Check with Johns Hopkins...Dr. Howard Levy is a genetics and sees many EDS patients. If you were near Salisbury Maryland I would highly recommend Dr. Peter Sebastian and MsPt: Richard Hornsey for musculoskeletal. There partners and have dealt with eds patients many times.

define near? By train the South Bend trip from Chicago to SB is about 2 hrs. Dr. Lavallee is the one who handles it here. He has the classical type himself and is very good.

Make sure you post on the Chicago EDS thread http://www.facebook.com/topic.php?uid=2210965239&topic=5943 I will be moving to chicago in the fall and we are starting up a local support group

I just saw Dr, Lavalle. Make your appointment now. It took me months to get in.

Dr. Lavallee is the absolute BEST! You will love him!

Ednf.org has a physician directory.

So far the only person I'd recommend is Dr. Santiago at Invasive Pain Management. I'm interested in suggestions as well. Finding primary care I feel good about here has been very hard.

Yes. http://www.ednf.org/index.php?option=com_sobi2&sobi2Task=sobi2Details&catid=35&sobi2Id=714&Itemid=99999999 — they're experienced with EDS. Their lead doctor speaks at EDNF conferences. [M]

Hi Denessa, I don't know where in New Jersey you are, but there are many with EDS there who I am sure could help. Here are some of them who are on EDNF's message board on Inspire: http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/south-jersey-philly-group/

I was diagnosed by Dr. Marcia Willing at Iowa City Hospitals and Clinics (she is now in St. Louis). She set me up with a therapist in Iowa City and I did aquatic therapy for 3 years with him. At the time I started (Junior year of high school) they told me I would go across the stage at graduation in a wheelchair. I am not in a wheelchair after working with the therapist and am doing rather well! I would highly recommend it!

Aqua therapy is best. My daughter 11 now had it when she was 3. Sorry I'm on the pacific coast area and looking for docs that know about EDS...not many of them out there.

The most likely way to find one—short of asking about connective tissue or better EDS experience as you contact people near you—would be to get in touch with groups in your area, and see if anyone has a personal recommendation. On Facebook, there's Virginia EDS/Chiari/Syringo/TC/IIH/POTS Support Group, https://www.facebook.com/groups/195011847266960/?fref=ts Maryland, DC, and Virginia Ehlers-Danlos Group at https://www.facebook.com/groups/197653097021200/?fref=ts And the EDNF Inspire Online Community at http://www.inspire.com/groups/ehlers-danlos-national-foundation/ might be able to help. There is a nationally-recognized PT in the DC-area, Jan Dommerholt, PT, DPT, DAAPM (his "Physical Therapy in the Management of EDS" presentaiton is available at http://www.ednf.org/2014-physicians-conference, as well as a YouTube presentation at https://youtu.be/cU5KGVy6JeQ) ± although he might be out of range for you, his office *might* have some references for you, I don't know.

The LEADING doctor in the country for EDS is Dr. Clair A. Francomano. She is in Baltimore at the Greater Baltimore Medical Center. She takes over a year to get into and it isn't necessarily ideal for a doctor you would need on a regular bases but as far as diagnosing and pointing you in the right direction she is THE doctor to go to. If you tell me the specific things you need, I have my "swat team" of doctors and I live in Herndon so I am happy to refer them to you:) I have a neurologist, neurosurgeon, pain management specialist, DPT (she does dry needling and it is mind blowing! It is the first treatment I have ever received for pain that actually took and didn't just help for a day or two!), and others like an Endocrinologist, a OBGYN Specialist, an Oral/Jaw Specialist etc but they are for my other disorders, not EDS, so I am not sure if they will be ones that you need:)

Thanks, Charlotte. I was seen by Dr. Francomano and she is the one who recommended that I try dry needling. It would be so helpful if you could provide me with recommendations for all of the doctor's that you've listed below ... that's almost the exact list of who I'm supposed to see next! It sounds like we may have similar symptoms/secondary disorders. And that's really encouraging to hear that the dry needling has worked for you ... I've been in a lot of pain recently and I'm hoping that will help!:)

I don't. There is a local group in Cleveland who might have a recommendation for you: The Cleveland "EDS Support & Friendship Group" has regular monthly meetings, communications, and social activities on the East and West sides. Our Goals are: INFORMATION, SUPPORT, & AWARENESS. Please join us! See meeting details on our website at http://www.chronicpainpartners.com/supportgroups/local-support-groups/eds-cleveland-oh/meetings/ and use the "contact us" button to email our group leader. Find us on Facebook under the name: Cleveland, Ohio EDS Support Group. If they can't help, you might try asking the genetics department at Cincinnati Children's Hospital (they accept everyone, not just children), http://www.cincinnatichildrens.org/service/h/human-genetics/contact/ - it's possible they have people on file.

Allergies and EDS may be connected through mast cell activation. Essentially mast cells regulate allergic reactions. There are two forms of mast cell disorders: mastocytosis, in which too many or oddly shaped mast cells are produced, and mast cell activation syndrome, which is abnormal reactivity of normal numbers/type of mast cells. Mast cell activation disorder/syndrome is not yet a widely accepted condition, but it's implicated in a wide range of autoimmune and/or inflammatory disease—celiac, irritable bowel, rheumatoid arthritis, and so on. Mast cells also play an important protective role as well, being intimately involved in wound healing and defense against pathogens. Two types of mast cells are recognized, those from connective tissue and a distinct set of mucosal mast cells. http://prettyill.com/resources/articles, particularly "Mast Cells and Stress—A Psychoneuroimmunological Perspective", "Mast Cell Activation Disease a Concise Practical Guide for Diagnostic Workup and Therapeutic Options", "Study of Patients Perceptions of Disability in Mastocytosis", "Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders", "Organic brain disease mastocytosis" http://en.wikipedia.org/wiki/Mast_cell http://www.patient.co.uk/doctor/Mastocytosis-and-Mast-Cell-Disorders.htm http://alwayswellwithin.com/practical-guides/wellness/mast-cell-activation/ http://www.ncbi.nlm.nih.gov/pubmed/16750977 http://www.respiratoryreviews.com/apr01/rr_apr01_mastcells.html http://www.ncbi.nlm.nih.gov/pubmed/9354811 http://hyper.ahajournals.org/content/45/3/385.short http://www.tmsforacure.org/welcome.php http://www.tmsforacure.org/documents/ER_Protocol.pdf http://www.tmsforacure.org/media/gouldn_anesthesia.pdf http://homepage.ntlworld.com/bhandari/Imperial/Atenolol/Side%20Effects.htm ---------- Low potassium may also be related to POTS, BTW.