Article: The Role of a Rheumatologiat for those with EDS

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Subject: Article - The Role of a Rheumatologist for those with EDSThe Role of the Rheumatologist in Ehlers-Danlos SyndromeByDr. Alan W. Weinberger, M.D.More than a hundred diseases and conditions affect the bones, joints,tendons, ligaments, and other soft tissues that make up the musculoskeletalsystem. Many of these are common degenerative processes involving age, wear,and tear. Others are related to aberrations in the immune system, or are byproducts of other diseases, such as psoriasis, diabetes, and AIDS.Ehlers-Danlos Syndrome is one of several heritable disorders that primarilyaffects the way that the body's connective tissues are made. These disordersactually involve a variety of genetically acquired defects in the productionof collagen. Collagen is what gives every tissue it's tensile strength,allowing tendons and ligaments to resist stretching, allowing joints tomaintain their integrity, and giving skin the ability to stretch only so farbefore becoming taut and resisting further movement.Defective collagen can adversely affect the integrity of the joints,tendons, ligaments, skin, blood vessels, intestinal walls, and the uterus.For many patients, depending on the type of EDS they have, themusculoskeletal and arthritic features of their disease, and theircomplications, are often the major manifestations of the disease.Rheumatology is a specialty that deals with diseases of the musculoskeletalsystem. As a subspecialty of internal medicine, Rheumatologists diagnose andtreat all forms of arthritis, and many other related diseases that involvethe musculoskeletal system as well.While Rheumatologists are trained to recognize and care for these illnesses,rheumatology is different than orthopaedics. Rheumatology Rheumatology, being a branch ofinternal medicine, puts much more emphasis on diagnosis, and stressestreatment with drugs and other non-surgical approaches. By contrast,orthopedics is a surgical subspecialty: the main treatment modality issurgical.It is surprising that many people with EDS have never seen a Rheumatologist,or possibly even heard of the specialty of rheumatology. This article willseek to emphasize the role that a Rheumatologist can play in diagnosis andtreatment of patients with EDS.Because EDS is a connective tissue disease, the Rheumatologist has a crucialrole to play in its diagnosis and management. For many patientsmusculoskeletal symptoms are the primary manifestations of their EDS. Thesesymptoms include diffusely painful joints, painful soft tissues around thejoints, neck and back problems, premature joint degeneration, jointinstability with subluxation and dislocation, and related problems. Thesecan range in severity from being nuisances, to becoming major impediments toquality of life.Many EDS patients suffer for years with musculoskeletal symptoms of theirdisease before they are diagnosed. Vague aches and pains, sore muscles,tender painful joints, neck and backaches: all these can imitate much morecommon illnesses, or even be attributed to stress. Delays in diagnosis, andfrustration on the part of the patient and physician follow.By applying a scientific approach to diagnosis, and eliminating a host ofmore common possibilities, the Rheumatologist can hopefully short-circuitthe oblique route many patients follow prior to their diagnosis.What about people with established diagnoses? There is certainly much that aRheumatologist has to offer. By thoroughly assessing and monitoring patient's flexibility, joint ranges of motion, strength, and the requirements oftheir work and recreational activities, appropriate preventative advice canbe offered regarding exercise, joint protection, and activities that mightbe deleterious to the peripheral joints and spine.Specific problems, such as painful feet, subluxing shoulders, unstableknees, and neck pain, can be addressed with the appropriate use of orthoticdevices, specific strengthening routines, education in proper bodymechanics, modification of improper worksite factors, and assistive devices.Many EDS patients suffer from a variety of secondary soft tissue syndromes,such as tennis or golfer's elbow, recurrent shoulder impingement syndromes,bursitis of the hips, recurrent neck and back pain, or TMJ problems. Theseare best managed by first identifying the offending activity, if any. Onceidentified, it may be possible to make appropriate modifications so that theactivity can be continued. This might be avoidance of certain aspects ofvarious activities, or efforts to accomplish them in alternative ways.For low back pain, for example, the simple use of a McKenzie Type lumbarroll can provide the additional support necessary to relieve the stress onthe lumbar ligaments that can come from activities as simple as prolongedsitting.Additional treatments for secondary soft tissue syndromes may include theuse of non-steroidal anti-inflammatory medication, local injections,physical therapy, and analgesics, in addition to modalities such as heat orice that can be used at home.Sooner or later most EDS patients require referral to a specialist of onetype or another. Rheumatologists generally are very well suited to makethese referrals, having established working relationships with specialistsin related fields and having had the opportunity to determine who is good atwhat. A patient might need to see a podiatrist or orthotist for archsupports, a physical therapist for strengthening of specific body areas, anoccupational therapist for braces or hand therapy, an orthopedist withspecial expertise in arthroscopy to repair a torn knee cartilage, or even aneurosurgeon to evaluate a lumbar disc prolapse. Knowing that you have areliable source of referral to top quality specialists is very reassuring.In general it is far better to be referred to such a specialist by anotherphysician, one familiar with your case, than to be self referred. This isnot only because you are far most likely to be referred to someone withsuperior expertise, but also because the referring physician is available tohelp you interpret the advice and opinions important when that adviceinvolves expensive testing, or surgery.Finally, although EDS can be more than enough to cope with, it does notprotect patients from anything anyone else can get. Since manyRheumatologists also practice internal medicine, EDS patients would be welladvised to consider finding an internist as a primary care physician who isalso a Rheumatologist. This way, there will be perfect integration ofgeneral and specialty care.So, at some level or another, the Rheumatologist has a lot to offer apatient with Ehlers-Danlos Syndrome