What are the best treatments for Ehlers Danlos?

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Treatments for Ehlers Danlos Syndrome


Ehlers Danlos Syndrome (EDS) is a group of genetic disorders that affect the connective tissues in the body. It is characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. While there is no cure for EDS, there are various treatments available to manage the symptoms and improve the quality of life for individuals with this condition.



1. Physical Therapy


Physical therapy plays a crucial role in managing EDS. A skilled physical therapist can develop an individualized exercise program to strengthen muscles, improve joint stability, and enhance overall mobility. They may also provide guidance on proper body mechanics and techniques to prevent injuries. Physical therapy can help reduce pain, improve joint function, and increase the overall strength and stability of the body.



2. Pain Management


Pain management is an important aspect of EDS treatment. Chronic pain is a common symptom experienced by individuals with EDS. Nonsteroidal anti-inflammatory drugs (NSAIDs) may be prescribed to alleviate pain and reduce inflammation. In some cases, stronger pain medications or nerve blocks may be necessary to manage severe pain. It is important to work closely with a healthcare professional to find the most effective pain management strategy for each individual.



3. Joint Support


Joint support is essential for individuals with EDS to prevent joint dislocations and reduce the risk of injury. This can be achieved through the use of braces, splints, or taping techniques. These supportive devices help stabilize the joints, improve alignment, and provide additional support during physical activities. Orthopedic specialists can recommend and fit the appropriate joint support devices based on the specific needs of each individual.



4. Medications


Medications may be prescribed to manage specific symptoms associated with EDS. For example, if gastrointestinal symptoms are present, medications to regulate bowel movements or reduce acid reflux may be prescribed. If autonomic dysfunction is a concern, medications to regulate blood pressure or heart rate may be recommended. It is important to consult with a healthcare professional to determine the most suitable medications based on individual symptoms and needs.



5. Lifestyle Modifications


Lifestyle modifications can greatly impact the management of EDS. It is important to maintain a healthy weight to reduce stress on the joints. Regular exercise, as recommended by a physical therapist, can help strengthen muscles and improve joint stability. Avoiding activities that put excessive strain on the joints, such as heavy lifting or high-impact sports, can also help prevent injuries. Additionally, a balanced diet, adequate sleep, and stress management techniques can contribute to overall well-being.



6. Psychological Support


Psychological support is crucial for individuals with EDS, as living with a chronic condition can be challenging both physically and emotionally. Counseling or therapy can help individuals cope with the emotional impact of EDS, manage stress, and develop effective coping strategies. Support groups or online communities can also provide a sense of belonging and understanding, allowing individuals to share experiences and gain support from others facing similar challenges.



7. Surgical Interventions


In severe cases of EDS where joint instability or other complications significantly impact daily life, surgical interventions may be considered. These surgeries aim to stabilize joints, repair damaged tissues, or address specific complications associated with EDS. However, surgical options are typically reserved for cases where conservative treatments have been ineffective or when there is a significant functional impairment.



It is important to note that the treatment approach for EDS should be individualized based on the specific symptoms and needs of each person. A multidisciplinary team, including healthcare professionals specializing in genetics, orthopedics, physical therapy, pain management, and psychology, can work together to develop a comprehensive treatment plan tailored to the individual.


by Diseasemaps

There is no real treatment, other than physical therapy, pain medication, and keeping a keen eye on symptoms for other problem.

4/11/17 by Montana 1670

Treatment for EDS is symptomatic and supportive- only the symptoms can be treated, not the disorder itself. The best treatments depend on how a specific person is affected. The best treatment for me has been physical and occupational therapy.

5/10/17 by stairphobe 3070

What my Geneticist and Rheumatologist told me: Swimming and Physiotherapy. Swimming is a really good exercise. It isn't that hard on the joints, you can do more than you could on ground an you can exercise all of your joints. Physiotherapy is always excellent. You can prevent further damage to your joints with physiotherapy.

5/25/17 by Maria 2051

Every one of us is different. We will not all benefit from the same treatment.

5/26/17 by Stephanie 800

I've not found a great treatment yet. Dealing with pain and general problems would be great though

5/27/17 by Jude 2050

Pain medications, PT,OT, bracing of joints.

5/27/17 by Ashley 950

Bracing, pain management and water therapy are the only effective treatments I have found

5/28/17 by Celi 2000

There is no cure for the symptoms of Ehlers Danlos, but pain can be mitigated best through Physical Therapy and Pain Medicine.

5/31/17 by KathrynOConnor 2200

Hot baths, heated blankets, and lots of rest help me with this.

9/27/17 by Lbond94 4100

I have to see a different doctor for each of my problems there isn't just one treatment as everyone is diffrent

10/6/17 by Sasha 2050

Physiotherapy Hydrotherapy

10/7/17 by Sharon 7050

There is no cure, but rather you treat the symptoms. Pain management, rest, physical therapy, meds when needed, supports and braces, heating pads, ice packs...treating the symptoms and listening to you body.

10/7/17 by Brittany 500

Medication, for me a cocktail of Cymbalta, Welbutrin and Lamictal work best

10/25/17 by Dolores 3050

This is such an individualized 'thing' - EDS is so unique to everyone that to answer such a question the way a person lives, how they wish to live, what they want to do and the goals they want to achieve, where they live and what is available to them, etc. all has to be taken into account for a treatment plan. What has worked best for me, so far there is not a lot available locally due to lack of knowledge. I am still trying to achieve the best treatment plan for me - I do know that it must be approached as a multidiciplinary treatment protocol. That bracing and splinting and even eyeglasses, will not necessarily ruin the persons muscle/joint healing if worn for longer than what is taught for a typical person. Teaching us how to wear them from someone trained in progressive connective tissue disorders is absolutely necessary. That our range of montion is usually so varied and rarely typical, that when it is typical that is not necessarily a good thing (if it was previously wider). Building the smaller muscles around the joints will provide strength. Building the leg muscles (especially the calf muscles) will help the blood to pump and not pool reducing symptoms of Autonomic Dysfunction (like Syncope or pre)...muscle strength is key/ proper bracing and education on bracing and splints that allow for movement is important/ isometric exercise techniques etc. Hydration Hydration Hydration and the knowledge of how to keep hydration, the warning signs when the tank is low, and when to get help.

5/11/18 by Izzy 600

Analgésicos Fisioterapia

7/6/18 by Estefania 1150

From my daughter's experience, there are no treatments, only palliative care options. PT, OT, splints, braces, wheelchair, those types of things along with pain meds and meds that address issues caused by the lack of collagen. Rest, lots of rest.

3/21/19 by pianocat_61 1400

Pain control physical therapy and surgery and bracing

9/29/19 by Amy 13500

Physical therapy to strengthen and stabilize joints. Wearing splints or braces for injured joints.

5/12/20 by Alex 3551

Diet, exercise, treat symptoms as they occur which there may be several including muscle spasms which you could take Reiki massages for and acupuncture. Migraine & hypogonadism.

11/19/21 by NuNu 2550

It depends on your symptoms and co conditions technically there is no treatment for EDS other then physio and other therapies but it all differs per person

11/28/22 by Taiy rinaldi-bull 600
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Moderate exercise, I do not have served a lot of alternative medicine and homeopathy

3/25/17 by Paula Lopez. Translated
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Physiotherapy Oxygen therapy Clothing compression Insoles proprioceptive Meditation Self hypnosis

8/16/17 by Apolline. Translated
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Look for a painkiller to be effective (some of them go through the opioids, morphine-based drugs, other herbal medicine) physiotherapy relaxation without any stretching and without repetitive strain

8/17/17 by Sandrine. Translated
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The SED does not have a cure! The treatments most effective are physical therapy, muscle strengthening and palliative treatments for pain.

8/30/17 by Leilane. Translated
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Compression garments Ortheses for the joints Appropriate medical treatment Oxygen therapy Psychological help often overlooked

8/30/17 by Ehos. Translated
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The treatments are paleativos, you can do strengthening for muscles with fisioterapias, swimming, water aerobics, activities with little impact. And also the use of pain relievers when there is a lot of pain.

8/30/17 by Kayla Rarine. Translated
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Compression garments if/when we support them oxygen therapy psychological help / hypnosis /self-hypnosis identify foods/ingredients inflammatory for oneself and delete it a good healer that restores the energy channels and lymph when the pain loop

9/7/17 by Florence. Translated

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