Hip Dysplasia

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Hip Dysplasia
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    Community Voices

    I’m new here!

    Hi, my name is Brunette_Rhyme. I've been diagnosed with and am a long term sufferer, I have other conditions but they are not on this radar however that does not surprise me. I feel out of 32 neurological and a mess of a muscularskelatal, my body is heading for another change. How long before we know what’s going to happen is anyones guess. My biggest obstacle right now is I seem to be my carer’s carer. I have a new set of carer’s coming on board. My new NDIS package has come through and finally I had and awesome LAC who knew what she was talking about. We have fought so hard and finally I received a package where I now might received the care I need instead of laying on the floor in a pool of blood in the morning whether I have an Apple Watch on or not. It is all dependant on the impact of the fall and mine are usually low by the time I hit hard. I have been on dexemethasone for nearly 3 months this time and it’s taking it’s toll and my doc does not get back from holidays for another month. I have to hang on as 2 hospitals have nearly killed me and I refuse to go down that road. I have an induction on Monday and really need these carers up to speed. I have one carer who is about to take leave and is on holidays to Italy. I hope she has and amazing time and sadly another one I have just lost as she had a fight with another carer to whom where previously friends. She put me in a very awkward position of choosing. I refused to and split them apart. It was not good enough so she resigned. I am very sad for this and I see her hurting right now but as the say with Pride come a fall. She knows I am very fair and kind however she needs to ask me. I guess I am reaching out for some moral support as I am truly exhausted and know I need to hang in there. I hope every is doing the best they can? If you are having reasonably good day, share and extra smile for the rest of us and we will do the same in return. J

    #MightyTogether #Anxiety #Migraine #Fibromyalgia #ADHD #PTSD #RheumatoidArthritis #MultipleSclerosis #ChronicIllness #CentralPainSyndrome #MyofascialPainSyndrome #ChronicInflammatoryResponseSyndrome #UrticarialVasculitis #CentralSleepApnea #CentralSensitizationSyndrome #VasculitisSyndromesOfTheCentralAndPeripheralNervousSystems #MultipleSystemAtrophyWithOrthostaticHypotension #HipDysplasia #DegenerativeDiscDisease #DentatorubralAtrophy #MyotonicMuscularDystrophy

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    Community Voices
    Community Voices

    Undiagnosed neuropathic pain.

    I turned 26 this year and have been suffering from chronic pain since I was around 19

    Lots and back and forth with multiple specialists and doctors appointments has eventually lead me to a diagnosis for my hip pain - I have hip dysplasia that has somehow gone un-diagnosed since birth.. I have been told I need to have PAO surgery to correct this.

    However, alongside this hip pain I have been suffering from many neurological symptoms which seems to have been swept under the rug since my DHD diagnosis. I am still chronically ill underneath my hip pain and no one seems to be doing anything about it.

    My nuerological symptoms include the following:
    - Sickness/nausea
    - Dizziness
    - Hyperosmia
    - Neuropathic pain in my legs, arms, shoulders
    - Complete numbness/change of sensation in my shoulder blades and between T7-T12
    - Numbness that radiates down my left leg
    - Muscle spasms/ spacsticity in legs
    - Bladder issues
    - Chronic fatigue
    - Balance issues
    - Cognitive issues such as thinking and concentrating
    - Occassional blurred vision/ vision changes
    - Migranes

    I have been seen by and dismissed by numberous doctors and consultants, no one can seem to figure out what is wrong with me. Some of them have actually accused me of making my symptoms up.

    I have seen 2x Rheumatologists that investigated Arthrtitis and Lupus, both concluded that there was nothing wrong with me at all whatsoever.. I have a positive ANA and Anti-dsDNA but still no diagnosis. Discharged by both of them with no further action.

    I am currently under the care of an Orthopaedic Surgeon (for my hip) who seems to think my symptoms point toward Fibromyalgia but obviously this would be diagnosed by a rheumatologist and I have already been discharged by two.

    I am currently on a waiting list to see a neurologist. I have been on this waiting list since May and I am lead to believe I will be waiting quite a few months yet.

    I feel incredibly alone in my journey. Everyone I know who is my age have no idea what it is like to deal with chronic pain, let alone the burden of an undiagnosed illness. Every time I attempt to talk to anyone about my ailments, people are dismissive, don’t understand or are simply uninterested.

    Can anyone offer any advice ? I feel hopeless. I have no support. 😢

    #ChronicPain #DevelopmentalDysplasiaOfTheHip #DegenerativeDiscDisease #Fibromyalgia #MultipleSclerosis #MyalgicEncephalomyelitis #ChronicIllness #Migraine #Lupus #Arthritis #CervicalSpondylosis #AnkylosingSpondylitis #Neuropathy #PeripheralNeuropathy #AutoimmuneDisease #BackPain #ComplexRegionalPainSyndrome #Undiagnosed #RheumatoidArthritis #sjogrens

    6 people are talking about this
    Community Voices

    How to Cope With Cerebral Palsy and Functional Decline

    Aging is inevitable. It is something we are blessed to experience, especially if we are given the opportunity to live a long and fulfilling life. As we age, our bodies begin to break down. This is natural. However, when you have cerebral palsy as I do, aging seems to happen at a more advanced pace as the result of the increased wear and tear we expose our bodies to daily. This can be an exceedingly tricky situation to handle. There is nothing that can be done to prepare you for the abundance of conflicting emotions you will feel as you watch your body changing before your very eyes. In my experience, there will be times when you are going to want to roll into a corner and just cry and scream. The load will be heavy, and you will also lose relationships you once valued as your limitations increase. This will hurt. Some days will be easier than others, but the sting will become ever-present. I understand that cerebral palsy is varied and affects everyone very differently. Therefore, the number of changes you will feel will vary greatly. I have always thought of my cerebral palsy as a moderate case. I am almost 38 years of age, and in my younger years, I was blessed to be independent. I was able to bathe and clothe myself. I was able to crawl to get around and used my wheelchair to get around otherwise. I will not pretend like I was not fortunate. I know that there are people who have much more involved disabilities, and I never let that thought escape my mind, not even once. I treasure my functionality even more in the present now that it has dwindled. I wish I had a magic wand that could reverse my osteoarthritis, my hip dysplasia, and my knee tendonitis, but I know that is not how life works. Throughout our entire course with cerebral palsy, we are told that our disability is a pediatric one because we are typically diagnosed at birth. The brain damage present at birth does not change; this is true, but our bodies change due to the strain that spasticity and other CP symptoms put on them. However, I believe that medical professionals should be more diligent when considering the residual effects of cerebral palsy. It’s not something that is included in their initial training but should be added. I am not sure what doctors could do for us down the line clinically, but I think they could be a source of comfort for us as we age and start to see the significant progression. I wish I could be the person to tell everyone who is affected by this how to cope, but I know that this is not possible. If I were to attempt to offer some advice, it would be to truly try to take the progression day by day. There is nothing we can do about aging, but we can make it a little easier by taking it in smaller doses. You are going to have your days when you cannot manage to take the pain and the fatigue anymore. This is completely normal and even more so, acceptable! If you have had enough, just let the emotions go! You will feel better after the release, trust me! It is a wild ride, and we must make sure we buckle up! The good news is that we are in this together. We may choose to cope differently, but we are never alone in our journey. If we can tough it out to see the sunrise and the sunset, we are doing something right!

    Community Voices

    Another day another obstacle crushed!

    Hey all, I hope this is appropriate to post here but I just wanted to do a little horn tooting and thought you'd all get it :)

    So anywho, I have hip dysplasia in both hips and degenerative disc disease in my lower spine and just oh so many more wonderful pain causing issues! Since I no longer know what life without pain is I use to wallow pretty badly. I was diagnosed with a lot of this in my early twenties and pretty much just gave up. Gained a ton of weight, and as a 5'1 tall woman i got up to 260 pounds. In July of 2021 at 37 years old I finally decided to get up and start living again for so many reasons (though that's a much longer story) and at my last weigh-in I was 160. Today, even though the pain was at a solid 7, I pushed passed my normal failing point and completed a 7 mile walk. Currently of course I'm wrapped in a heating pad and using all my other soothing tactics and everything hurts but at the same time? I feel amazing! #HipDysplasia #ChronicSpinePain #warrior

    4 people are talking about this
    Community Voices
    Community Voices

    Helpful Ways to Cope in Life With a Disability

    It is no secret that living with a disability can be difficult. Acceptance is something people with disabilities often search for. It is the destination at which many disabled individuals hope to arrive. As people, we are often pressured to pick ourselves back up when we are having a less-than-spectacular day. As disabled people, we often seem to be under a unique set of pressures to be at our best all the time. We may be some of the strongest-willed people you will ever come across. However, it is important for others to be mindful that people with disabilities are humans too, and we deal with an overflowing plate every second of the day. Therefore, I want to explain some of the coping mechanisms I use every day as a person who lives with a disability. I have cerebral palsy, and I use a wheelchair. This can be stressful at times, especially when you add in the fact that I also am living with chronic pain conditions such as hip dysplasia, hip osteoarthritis, and severe osteoarthritis I will be honest: dealing with all of this with cerebral palsy added on can be very taxing, particularly physically but also emotionally. I have had numerous nervous breakdowns, and I have wished that I could just have one day free of the pressures of being disabled. I’ve screamed until my throat hurt and my voice was all but gone. I’ve cried until I have been shaken to my very soul and have had my tears blur my vision. It took me a long time to realize that this was not a dreadful thing at all. It made me human, and no human always has their life perfectly together. Growing up, I was always seen as the girl who was always smiling while living with many challenges. It is true — I am a happy person most of the time. However, given my “happy” reputation, I was always intent on never letting anyone around me down, and I thought showing I was not always happy would be a letdown to others. I know this may sound ludicrous to other people, but this is how I felt — under constant pressure. However, now that I have evolved and grown, I realize that this way of thinking was out of line with the truth. I know now that others often understand that I sometimes have a bad day, and this doesn’t make me a “negative” person; it just makes me human — and that much more relatable. I realize that everyone’s ways of dealing with high-pressure, stressful situations vary, but I thought it might be helpful for me to share some of the ways I personally deal with the stressors of living with a disability and chronic pain conditions. These tips are as follows: 1. Find a routine and do your absolute best to adhere to it. I work best when I form a routine. I mostly stay at home, so finding things to keep my mind occupied is especially important. I am an independent writer, so sticking to a writing schedule helps me maintain productivity. I do my best to write four days a week. It does not necessarily mean working on a project, but I just try to write in any form to hone my skills. 2. Find a hobby that will keep you busy, and work on it often. Many of you may have heard about the adult coloring book trend that has been around for quite some time. I have always loved to color, and I am blessed with enough hand use and dexterity to be able to color well. I absolutely love it, and I set goals for myself each week — like picking a different coloring theme or book to color in. I also struggle with anxiety and depression, and coloring has also been tremendously helpful in coping with my mental health conditions too. 3. Find something that makes you smile, and do it often. I personally adore watching YouTube videos that feature food. I, like many of my fellow humans, love to eat. Therefore, watching taste tests and eating challenges are some of the many videos I enjoy. I also love watching family YouTube channels and joining in as the families document their daily lives. Because my life with a disability feels so different from these families’ lives, I love to see what goes on “behind the scenes” of families who may have more enticing, exciting lives than mine. 4. Practice self-care and self-awareness. Both of these skills are essential to my daily life. As I have gotten older, I have made myself more of a priority. I make sure I spend quality time with myself in mind and take time to self-reflect and genuinely think about where my life’s path may be headed. I also consider whether that life path will satisfy me. I spent so many of my younger years taking care of others and putting myself on the back burner. As a result, I struggled with loving myself as a person. I have come an exceptionally long way, and I am extremely proud of myself for achieving the feelings of happiness and contentment I had always desperately longed for. Remember to try to be an advocate for yourself and to do what is best for you in the end. Stress is a part of life, and the truth is, it will likely never go away, especially for us in the disabled community. Becoming flustered and annoyed with life feels like a given at times, particularly when our bodies and brains refuse to listen to and cooperate with us, but if you’re in a similar situation, just know that these feelings of stress and discontentment are completely normal. It is my hope that some of my coping mechanisms and tips help my fellow members of the disability community and lead you to a more peaceful and comfortable life.

    Community Voices

    Hip dysplasia and hEDS

    In 2019 I stood up out of a vehicle and tore my labrum through a hip dislocation. I had to go out of work for 6 months to have surgery and heal. I ended up having a scope and they tightened my hip I place with anchors as I kept experiencing dislocations. The hip did great until November 2020 when after a night of dancing (the first since I had surgery) I stood up and audibly heard my labrum re tear. I instantly returned to the Orthopedics where we did and MRI, confirmed the tear and I was sent to a new surgeon. At the new surgeon appointment, after xrays were reviewed it was determined that I had Bilateral hip dysplasia and qualified for a very scary surgery known as a PAO or Periacetabular Osteotomy.

    Now this brings me to my thoughts, I didn't have hip problems until after I gave birth to my daughter. I had a vaginal delivery and after had problems with my bladder that I still deal with. In addition, the hip issues cropped up. So I wonder, was it the child birth and the fact that I have EDS that led to the hip problems? Have lots of others experienced something similar and should this be something doctors warn patients with EDS who are wishing to have children of their own. Not that it would change my choice as I absolutely love my daughter and would go through this over and over to have her, but maybe it could be an important discussion for others as I am now looking at a possibility of 6 more surgeries to fix both hips, which is very te consuming and the pain is absolutely insane on a daily basis.

    I hope if anyone else is dealing with this, you know you are not alone. My first PAO is scheduled for May 28th and I have high hopes that this will help, but god the idea of a doctor cutting and repositioning my pelvis is absolutely terrifying.

    #EDSAwareness #HipDysplasia #paowarrior #LivingWithPOTS