Osteoarthritis

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Osteoarthritis
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    Community Voices

    I’m Tired of Living Like This

    Today, I went out for about three hours with a friend. I really enjoyed my time with them, but when I got home, my body shut down. Fatigue set in, and as much as I wanted to resist taking a nap so late in the day, I felll asleep anyway.

    Now it’s late at night, and my body is complaining about me going out and doing things. I can’t sleep because I napped earlier, and my joints are in misery. I needed to tell someone, but I didn’t know where to go. So I’m here. Talking to people on the internet that I’ve never met before because I trust them to treat my condition with more respect than my IRL friends.

    I hate the fact that I have to spend so much money on braces instead of nice clothes. When I went on a trip out of town for a few days, I had a whole bag filled with knee braces, a back brace, compression socks, elbow compression sleeves, compression gloves, and ring splints, plus my cane. It still wasn’t enough to keep me together, and now I have to go searching for ankle and shoulder braces.

    I’m tired of living like this, and as lovely as my friends are, I know that they can’t understand how much I perform to look healthy enough in front of them to be accepted. It’s that or slipping into social isolation, which I can’t risk doing for my unstable mental health.

    I want to be able to go out and do fun things on a whim without having to consider my current pain level. I want to not have to purposely schedule large chunks of downtime into every single day so that my body doesn’t collapse on me. I want to not have to deal with deciding whether I need my cane enough to stomach the ableism that will come my way or if I can suck up the pain enough to avoid any comments.

    I don’t really know where I’m going with this, so I’ll stop now and try again to get some sleep. #EDS #HSD #Osteoarthritis

    2 people are talking about this
    Community Voices

    I'm new here!

    Hi, my name is angel46. I'm here because I am struggling with chronic pain and depression. I have longstanding osteoarthritis and various other catchall diagnoses of fibromyalgia, non-specified connective tissue disorder, Sjogren's, and pseudogout. After several years of extreme stressful events, all symptoms have gotten worse in the last year and a half. Have seen half a dozen doctors and have been told there's not anything that can be done aside from physical therapy and trying various drugs for pain. I am currently trying Tramadol, but reluctant because of all the side effects. Also, I have a history of incurring side effects from medications. I feel scared, alone and hopeless. It is so hard to get through each day and to try to minimize all of this to spare everyone from hearing about this endlessly.

    #MightyTogether #Depression #Fibromyalgia #Grief

    10 people are talking about this
    Community Voices

    How much do you push your body when in an effort to fight for mobility you can’t control the nerve pain or the muscle spacticity and spasms?

    I’m living with chronic intense spine pain with nerve damage and muscle atrophy in my lower body. Just a few weeks ago I was in a wheelchair for eleven days straight and could not walk at all. I haven’t been able to do anything besides the bare basics of caring for myself and my pup. Yes, the bare basics. I’m not in a wheelchair right this minute but I cannot walk without my rollator or walker with my attached cane. It’s been that way for a long time now, years.

    Anyway, I’m trying to walk (via walker) and track my steps, push myself a little more each day.

    The pain, burning and numbness take over my body and I have to stop repeatedly to bend my spine forward and relieve the pain and pressure, ease the burning. It’s horrible and the pain sucks but still, I want my life back and I’m not going down without a whole lot more fighting (again). Yes, I’ve been living with chronic pain my entire adult life, so it’s been an ongoing battle for years.

    The problem I’m having right now and daily is: when I’m pushing for mobility and trying to save my lower body (mid spine to feet) from being permanently paralyzed I’m fighting nerve damage that only relieves with ice for hours (mid to low spine and bum and hips) but muscle spasms that only relieve with heat (legs/feet).

    Just exactly how much muscle spasms/spasticity is too much and how do I know if I’m pushing way too much or just not enough? I’m really not knowing and I know if I don’t keep fighting and just stay in whats comfortable and least painful I won’t be out of the wheelchair very long. Any tips, advice? I welcome them all please. This pain is making me a little bit nuts and I’m using ice and heat at the same time to combat the different parts and symptoms on my lower body. I’m exhausted and frustrated to say the least. #ChronicPain #FailedBackSurgery #Nervedamage #DDD #Osteoarthritis #spinestimulator #migratedleadwire #Exercise #Neuropathy #MuscleWasting #Tremors #numb #tingling #Burning #Spasticity #musclespasms #mobility #Fibromyalgia

    11 people are talking about this
    Community Voices
    Okae

    I'm new here!

    Hi, my name is Okae. I'm here because I saw a title to an article written by someone else in chronic pain, as I am, and I wanted to be able to read it and see what they had to say. I am new to this forum and see that there may be other things here which can help me.I have chronic pain from Osteoarthritis in nearly all my joints, and am in need of a hip replacement which the surgeon refuses to do because of my obesity. I only eat about 1200 - 1300 calories per day but still cannot lose weight. I was eating less, but the Nutritionist told me it was a starvation diet and unhealthy, so she told me to eat no less than 1700 calories per day, which made me gain weight. I tried 1500 a day and stayed the same weight. So I am back to eating less and still not losing. I feel hopeless to lose the weight and and hopeless to get the hip replacement that can give me my life back. I'm looking for supportive suggestions and advice and a community of others who may be going through the same. #MightyTogether

    1 person is talking about this
    Community Voices

    Self care cart

    <p>Self care cart</p>
    9 people are talking about this
    Community Voices

    How to sleep with the heat, the pain, and skin not wanting anything touching it

    Another hot night on the eastern slopes of the Colorado Rockies. My fibromyalgia pain is getting higher with the temperature. Now I have developed patches of skin that the slightest pressure make me jump with pain. Any suggestion on bedding, pajamas and anything else to help me get some rest? Thank you. #Fibromyalgia , #ChronicPain ,#Osteoarthritis , #Migraines

    3 people are talking about this
    Community Voices

    I'm new here!

    Hi, my name is Pain59. I'm here because I am looking for new treatments to help manage my severe pain In my entire spine and osteoarthritis. Looking to get my life back . Don't want anymore surgeries or implants. Anxiety has increased due to not being able to keep my pain at bay . Been on same pain management regime for years. Medical Cannabis not strong enough to cover my pain otherwise that would be all I would be using.

    #MightyTogether #Anxiety #AnkylosingSpondylitis

    1 person is 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

    Hey there, it's been quite some time since I've posted. I got swept up in a lovely, sweet love affair that I thought was true forever love, and now it's over... Life moves on, lessons are learned, but I wrote a poem about it for old time's sake.

    To the Guy who Broke Down My Walls and Then Broke My Heart--

    Thank you for being there when I needed someone to guide me out of a very dark place

    Thank you for showing me my heart wasn't made of stone, that I could still love and trust and feel connection to someone

    Thank you for reminding me that I am strong and beautiful and capable of anything

    Thank you for all the laughter

    Thank you for a fall and winter full of feeling sexy and adored and safe and happy....

    ....

    ....

    Thanks for dumping me... It's an experience I've never had before and even though it SUCKS, on some level I understand why it had to happen...

    ....

    Oh, and just one more thing--

    F**K YOU for breaking my heart and being the reason I have to put my walls back up!