#ehlers danlos syndrome physical therapy

[ppttherapyppt]

Physical Therapy Clinic in New York City

Ehlers-Danlos Syndrome (EDS) is a group of rare genetic connective tissue disorders that affect the body's ability to produce collagen, a key protein that provides strength and elasticity to various tissues. People with EDS often experience a range of symptoms, including hypermobility of joints, skin that is easily bruised and hyper-elastic, and various complications related to weak connective tissues.

Pain management for individuals with Ehlers-Danlos Syndrome can be complex and require a multidisciplinary approach involving medical professionals such as rheumatologists, geneticists, pain specialists, physical therapists, and more. Here are some strategies that might be considered:

Medications: Depending on the type and severity of pain, various medications might be prescribed. Nonsteroidal anti-inflammatory drugs (NSAIDs) can help manage joint and muscle pain. For more severe pain, opioid medications might be considered, though their use should be carefully monitored due to the risk of addiction.

Physical Therapy: Physical therapy can be extremely beneficial for individuals with EDS. A physical therapist can provide exercises to improve joint stability, strengthen muscles, and enhance overall body mechanics. Aquatic therapy might be particularly useful due to the buoyancy of water reducing stress on joints.

Bracing and Assistive Devices: Depending on the specific type of EDS and its impact on joints, bracing or assistive devices might be recommended to provide support and reduce strain on joints.

Pain Management Techniques: Techniques such as heat or cold therapy, massage, and acupuncture might provide some relief for certain individuals.

Lifestyle Modifications: Adopting a healthy lifestyle can help manage pain. Maintaining a healthy weight can reduce stress on joints, and staying active within the limits of what your body can handle can also be beneficial.

Counseling and Psychological Support: Chronic pain can have a significant psychological impact. Counseling, mindfulness, and relaxation techniques can help individuals cope with the emotional aspects of managing pain.

Nutrition and Supplements: A balanced diet rich in nutrients that support collagen production, such as vitamin C, might be helpful. Consultation with a medical professional or registered dietitian is recommended before making significant dietary changes or starting supplements.

Pain Management Specialists: Depending on the severity of pain, a pain management specialist might be consulted. They can provide more advanced interventions like nerve blocks, epidural injections, or other specialized treatments.

Genetic Counseling: Since EDS is a genetic disorder, individuals and families might benefit from genetic counseling to better understand the condition, its inheritance pattern, and potential implications for family planning.

It's important to note that each individual's experience with EDS and their pain management needs can vary widely. A personalized approach that takes into account the specific type of EDS, its symptoms, and the person's overall health is crucial. Always consult with qualified medical professionals who are experienced in dealing with Ehlers-Danlos Syndrome for proper guidance and treatment.

Types of EDS

The Ehlers-Danlos syndromes are a group of genetic connective tissue disorders that are currently classified into a system of thirteen types. Despite this grouping and their common name, each type is a distinct condition caused by a different gene mutation. This means that a child cannot inherit a different type of EDS from the one their parent has. It also means that one type cannot later turn into another, and there is no increased risk of having another type just because you have one – they are simply not connected. It is also extremely unlikely that one person would have more than one type, given the rarity of most of these illnesses.

Recently some of the criteria used to diagnose the Ehlers-Danlos syndrome and some of the terminology describing them changed, in order to reflect scientific research from the past twenty years. The 2017 EDS International Classification recognizes thirteen types of EDS and defines for the first time some related conditions, hypermobility spectrum disorders (HSD) which have similar symptoms to hypermobile EDS (hEDS). The term joint hypermobility syndrome (JHS) is no longer used.

The most common type of EDS is thought to be the hypermobile type (formerly known as the hypermobility type or type 3) although the exact prevalence of this condition is not currently known. The medical literature states that it affects 1 in 5,000 people however this statistic is based on research that is out-of-date and hEDS/HSD frequently go undiagnosed or are misdiagnosed as other conditions. HSD and possibly hEDS are likely to be common. The classical and vascular types are rare, with other types being rarer still. It is probable that all the types are underdiagnosed to some degree.

[eliana-system]

please be aware that disabled people are not "against exercising"

Some disabled people's symptoms worsen when exercising and they can't affort that while holding a job/studying/making an ssi application

some diasabled people cannot exercise unless in physical therapy, which they may not have acess to.

Some disabled people risk hurting themselves permanently by exercising

A lot of disabled people do exercise but abled people don't consider it exercise because it isn't normal enough.

Most disabled people have been told to "just exercise" or "try yoga". Most disabled people have been guilted into thinking it's their fault because they're not exercising or not enough. Most disabled people feel like shit when you bring up exercise because they'e learn it's followed up with either a lesson on how they can "cure their disability" or how they're "letting themselves go"

Some disabled people get trauma response by people telling them to exercise, or that execise is good for them even if that is true.

When someone tells me exercise is good for me i have to stop myself from sobbing on the spot. Because my dad and doctors told me i should just exercise no matter how many specialist's letters i have saying i risked permanent damage. Because my physical therapy is right there, i just can't acess it. Because all the ressources are a subway away and i'm being denied them. i'm being told to way for a year and a half while i watch my mobility and pain worsen, knowing it could be getting better. Because it reminds me how abandoned i am from people who could save me.

Because telling disabled people "exercise is good for you" or "have you tried exercising" is an insult to how much they want and are trying to get better. This is getting in the "i know better" position and getting mad when you do not know better.

[lost-spoons]

I use this thing called a zero gravity treadmill at physical therapy, which makes it so ii can walk at a reduced body weight. Right now I'm up to 75% of my body weight, and apparently they usually only take paitens up to 85%, then they have you work out side of the zero gravity at full body weight.

When I get to full body weight, they're gonna try and transition me from forearm crutches to a cane or singular forearm crutch. So that's exciting.

[domini-porter]

sooooo I have a lot of Body Problems, namely hypermobile Ehlers-Danlos (where my Beighton Nines at??) that my doctor thinks is starting to progress more rapidly, plus chronic, thus-far idiopathic low bone density and arthritis in every joint (since I was a teenager; of the standard-issue 206 bones a person has, to date I’ve broken 16 of them and currently only have 205 left) that nobody can figure out and all this is to say something Not Great is going on in my spine and I am super worried something’s broken in there (again; my missing bone is my L1 vertebra, it’s a piece of metal now) and this is mostly just to ask for your vibes and energies in the direction of it not being broken because if I have to spend another 4 months of my life (this would be the fourth time) laying supine staring at the ceiling I will lose it.

bodies: the worst?

[pussysidon]

Joint pain gang where you at

[whatshouldwecallchronicillness]

My PT when I don't to my home exercises...

[sir-ghost-the-green]

A query to the joints go funky community: so. I was minding my own business, existing with my hip feeling funky for a couple days. like it hurt but i kinda got used to it after a day and a half so i was just uncomfortable and kind of unstable, like my leg could give whenever it felt like. To try and fix it, i leaned over like a dog who is pissing on something, and it gave the really loud pop like my knees or shoulders sometimes do when i wiggle them bc they hurt. it got way less uncomfortable after that. is this a subluxation?? I start PT soon and figure they’re probably going to ask if i get them but i don’t know.

[supernutcollectionuniverse]

One unexpected side effect of physical therapy is that my arms are kind of shredded now?!

If you have hyper mobility issues then I am begging you on my hands and knees to start pt.

[magically-maddie]

I just realized that all the gossip I hear comes from my physical therapists instead of something normal like, you know, friends.

Realizing these things..oof. Being young and disabled is a whack in the chest sometimes.

[spookietrex]

Met my new physical therapist who is actually educated surrounding POTS and EDS. But unbeknownst to me, she is also trained in the polyvagal theory and knows about therapy/trauma stuff and how my PTSD affects my body and my FND. Holy shit, I think I just found my dream physical therapist. She described exactly what happens when I shut down.

[ppttherapyppt]

Physical Therapy Clinic in New York City

Ehlers-Danlos Syndrome - Joint instability

Joint instability is a common symptom in various subtypes of Ehlers-Danlos Syndrome (EDS). It occurs due to the inherent weakness and laxity of the connective tissues, including ligaments and tendons, which are responsible for providing stability to the joints. Here are some strategies to manage joint instability in EDS:

Physical Therapy: Working with a physical therapist experienced in managing EDS can be highly beneficial. They can design an exercise program to strengthen the muscles surrounding the affected joints, which helps provide additional support and stability. The focus is often on low-impact exercises, such as swimming or cycling, to improve muscle tone without excessive joint stress.

Joint Protection: Learning proper body mechanics and techniques to protect the joints is important. This may involve avoiding or modifying activities that put excessive stress on the joints, using assistive devices like braces or splints for added stability, and learning techniques for joint relocation in case of dislocations or subluxations.

Strength Training: Strengthening the muscles around the affected joints can help compensate for the inherent joint laxity. Resistance exercises targeted at specific muscle groups can enhance joint stability and reduce the risk of dislocations or subluxations. However, it is crucial to work with a knowledgeable physical therapist or exercise specialist to ensure exercises are appropriate and safe for your specific condition.

Joint Bracing or Taping: External support, such as bracing or taping, can provide additional stability to the affected joints. These devices can help limit excessive joint movement, reduce the risk of dislocations or subluxations, and provide proprioceptive feedback to improve joint position sense.

Lifestyle Modifications: Making certain modifications to daily activities can help reduce joint stress and minimize the risk of injury. This includes using ergonomic tools and adaptive equipment to decrease joint strain during tasks, pacing activities to avoid overexertion, and practicing good posture and body alignment.

Orthopedic Consultation: In some cases, orthopedic consultations may be necessary to assess joint stability and explore potential surgical interventions for severe joint instability or recurrent dislocations. Surgical options may include ligament reconstructions, joint stabilizations, or other procedures aimed at improving joint function and reducing instability.

Remember to consult with a healthcare professional experienced in managing Ehlers-Danlos Syndrome to determine the most appropriate strategies for your specific situation. Each person with EDS is unique, and a personalized approach is essential for effectively managing joint instability and minimizing associated risks.

EDS stands for Ehlers-Danlos Syndrome, which is a group of rare genetic disorders affecting the connective tissue in the body. To diagnose EDS, a doctor will typically begin with a physical exam and review of the patient's medical history. They may also order genetic testing to look for mutations in genes associated with EDS.

The physical exam may involve testing the flexibility of the patient's skin, checking for joint hypermobility, and looking for other physical signs of EDS, such as scarring or easy bruising. The doctor may also perform imaging tests, such as MRI or CT scans, to evaluate joint and tissue damage.

There are currently 13 subtypes of EDS, each with its own specific diagnostic criteria. A doctor may use a combination of clinical and genetic testing to determine the subtype of EDS that a patient has.

It is important to note that EDS is a complex condition and can be difficult to diagnose. If you suspect that you or a loved one may have EDS, it is important to consult with a doctor who is knowledgeable about the condition and can provide appropriate testing and treatment.

[elsiebrayisgay]

here's something many (nondisabled) people may not know about receiving home care in the united states: not only does the government decide what amount of care you can get, that determination is made based on a regularly-updated evaluation of a patient's health situation. if your condition starts to improve, *that is grounds for you to have your care reduced or taken away* and the ableism of that hits me in waves. this means that if you want to get better--improve your endurance to walk further, regain skills you've lost so you can cook for yourself, maybe you spend a lot of time in physical therapy for these things--the government will take your care away because if you can do those things, you don't need it anymore, regardless of the fact that having the care is what enables you to reach that point because you're not injuring yourself or expending your energy on tasks that are dangerous or harmful or super draining. i like to joke that because i have good benefits and pretty good home care, that i live under real socialism now, and i will always think of myself as lucky to have what i do, but always remember: disabled people's lives and livelihoods are dictated by state institutions whose purpose is to withhold every benefit they can.

i don't have a larger point other than teaching people about how this part of my life works and encouraging you all to think about what it would be like for a nurse from the state to tell you that it was great that you were trying to walk more, but that if you did she would take your home care away, because that's what happened to me. every time i think about what it would be like to have access to real physical therapy again and maybe improve some more, i think of that, and it is crushing and depressing.

disabled people deserve better than this. i hope one day we can have it.

[autisticslp]

[thateclecticbitch]

Got some sick gains at the gym this week (Successfully avoided subluxating his shoulder at physical therapy)

[aleck-le-mec]

Personally as someone with heds physical therapy didn't work out for me, this might have been because it was so stressful for me or because they were overworking me.

It was very stressful for me because I have a lot of difficulty existing in a place like physical therapy due to the new set of social rules. Often my physical therapist would give me unclear instructions and wouldn't stick to a set schedule so I never felt like I knew what I was doing. Like as an Autistic person that did not work for me and I felt bad being there.

This place was also a little bit more sports based, they're used to seeing a young person and then working them for sports. So when they saw me who's only 18 they thought they could do the same with me. Nope. I am actually very fragile, I haven't been able to sit on my knees for 9 years or else they lock and I cry.

[sparrowsortadrawzzz]

trying to train my hip flexor cuz it got realll weak and overworked from an injury, does anyone have any tips? especially since hypermobility go brr..??