Relapsing Polychondritis

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Relapsing Polychondritis
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    I’m new here!

    Hi, my name is Tammycrazyhouse. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether #RelapsingPolychondritis

    Post

    Isolation #Depression #Pain #RelapsingPolychondritis #PeripheralNeuropathy

    I'm frustrated. I'm angry. I'm scared. I'm lonely. I'm tired.

    Chronic illness feels like I'm in an inflatable raft in the middle of the ocean. It's cruel to think I might be rescued, but painful to think that I might never be.

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    Struggling #hopelessness #ChronicPain #RelapsingPolychondritis #Neuropathy

    I'm in a bad way today. I feel worthless and invisible outside of my house. I found out today I am being passed over for a different job so a young man I helped get hired could have the job. I have worked there 11 years, him 8 months. This move could have helped me stay working longer as it was not as physically demanding. The only time friends and family call is if they need someone to listen. I'm feeling isolated. I suffer from anxiety, so of course I am imagining worst case scenario. I have an appointment Thursday for pain management, but I don't have high hopes. I do not elicit feelings of compassion from people. I am who I am. My window for getting things done gets shorter and shorter. I am rambling now. This life is hard; it has always been hard, will always be hard.

    Post
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    12 Years to a Diagnoses #RelapsingPolychondritis

    The past 12 years have been a world-win of specialists, surgeries, and hospital admissions. Over this time I collected several diagnoses including Ehlers Danlos Syndrome, hypertension, hashimotos, and psoriatic arthritis. It all started with joint pain and fatigue that came on around the age of 32. I had red and swollen joints, particularly to my ankles and hands. Then I began having ligament tears including both ACL in my knees, ligaments and tendons in my ankles, and spine with minimal activity. These as well as other tissue injuries required surgeries in order for me to remain active and successful. In all, I had 15 surgical procedures in 12 years. Most of my health issues were deemed autoimmune and at age 38 I was being treated for psoriatic arthritis with biologic medications with good success in reducing swelling. However, I became sicker overtime leading to a 60lb weight loss due to poor appetite and reduced gastrointestinal motility. Despite all these complications, I continued to finish a PhD at age 40 and work full time while raising my two kids. I felt for me the more active I remained the more distracted I was from the daily symptoms. The days that I am less active are often the days I feel most symptomatic. Over the past 3 years I developed a new symptom of intermittent bright red, swollen and painful ears. It took the full 3 years to get a new diagnosis that made more sense to my clinical picture. In 2021 I discovered that I have relapsing polychondritis, an autoimmune condition that attacks the cartilage in my body leading to hearing loss, ear pain with redness and swelling along with continuous sternal and joint pain. Thanks to my medical team I am finally on a path to adequate treatment, but my future is unknown. RP is a very rare condition with little research or known treatments other than steroids. For now, I continue to be active by working full time, and being the best parent I can to two growing teens. I hope that sharing my story can help others recognize the signs of RP earlier than I did and therefore get treatment earlier. I still have hope for my future because I will not give up my career, active family life, or time with friends. For now remaining as active as possible and at times pushing through sometimes severe symptoms is keeping me in a functional state with a good quality of life. That does not mean that this additive is for every patient with autoimmune disease, but it is what works for me. I hope more research is done in understanding RP pathology and treatment, but until then I will live my best life.

    Post

    Mixed Bag #RareDisease #RelapsingPolychondritis

    I'm up and down at the same time, and if anybody understands it would be all of you. Tuesday woke up with a swollen lip, but only the left side because, well, I gotta be me! By the end of the day Wednesday it was apparent that it's because I have a raging poison ivy rash from hugging my dog (and no, it's not going to stop me from hugging my dog. I'll just be washing after every snuggle). Thursday my left ear started flaring - swelling, itching, weeping (the ear, not me) and waves of pain. But then yesterday, I got to apartment shop with my daughter because after five years of living away for college, she's moving closer!!!! Why can't my body be happy for my mind? Lol. Thanks for letting me ramble. Happy Sunday!

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    Slow Learner #Upallnight #ChronicIlless #RelapsingPolychondritis #dayafter

    After two unbelievable good night's sleep and beautiful March weather, I tackled some landscaping cleanup yesterday. Lots of sunshine, fresh air, exercise: recipe for a good night's sleep, right? Ugh. I probably got two hours and then six more of off and on through the rest of the night. Plus, my body swelled up because of my activity. I'm up four pounds from yesterday and can't get my wedding ring on. I KNOW this is the consequence but I can't help myself. It's days like this that I envy people who don't have to weigh the cost of seemingly normal activities.

    Post

    Symptoms #HashimotosThyroiditis #RelapsingPolychondritis #Syncope

    Anyone have presyncope with nausea? I've been struggling with it for months, seeing a cardiologist that just keeps trying me on different meds. Tonight I was making supper (snapping green beans at the sink to be precise) and I felt nauseous and dizzy and had to sit down. I also get dizzy lifting my arms and turning my head. Any of this sound familiar?

    Post

    Newly Diagnosed with RP

    About a year ago, I developed a lesion on my right ear and it was red, swollen and incredibly painful. Unfortunately, I sleep on my right side so I started sleeping with a thick slouch winter hat to protect my ear during the night. It would work for a couple of hours but eventually the pain would feel like someone was sticking a pain through the cartilage of my ear and wake me up. I already suffered from insomnia but in the past year, I’ve probably only slept through the night a dozen times, always drug induced.
    I also suffer from chronic low back pain, a torn meniscus in each knee, hypothyroidism, acute gallstone pancreatitis, SI joint dysfunction and chronic fatigue. But, some time in the summer, my fatigue and joint pain became so bad that I was spending the majority of each day in bed curled up in a ball wanting to die. I have zero energy to do anything at all.
    I haven’t worked since 2011 (after my fifth back surgery). I was only 43 at the time. I applied for Social Security disability but, after waiting 4+ years, I was denied. My underlying depression spiraled out of control. I completely gave up, and my life was a mess.
    I am estranged from the majority of my family and friends because they think I should just “get over it” and they think I’m an addict because I take prescription pain medication, anti-anxiety meds and sleeping meds. I have asked my father to go with me to my GP and/or my pain management doc, but he refused. I’ve seen him once in the past 7 years and that is so painful.
    At the moment, I am my 78 year old mother’s full time caregiver. Thankfully, she is somewhat independent and only needs help with meals, medication management, showering, and things like that.
    But, since the joint pain, fatigue and earaches and headaches have become a daily thing, I don’t know how much longer I can do this. Unfortunately, my brothers help in no way WHATSOEVER! My mother and I barely get by on her Social Security and a small pension from her deceased husband, so there is no money to hire a private aide to help.
    About 2 months ago, I started waking after two hours of sleep with the usual pain in my ear, splitting headache and then throat pain, both a sore throat and pain in my neck. That’s when my GP sent me to a rheumatologist and I was diagnosed with RP and fibromyalgia. I am spending the majority of every day in bed and even doing a basic chore, like a load of laundry, absolutely wipes me out. My mother is terrified because if anything happens to me, my brothers will stick her in a nursing home to die.
    I’m sorry for rambling but when I found this group on The Mighty, I felt like I could share and people would empathize and understand. I’m afraid for myself and afraid that I will be unable to continue caring for my mother much longer, so the future seems so bleak and I feel so alone.

    #RelapsingPolychondritis

    Post

    So excited to be here

    I was diagnosed about 15 years ago with RP. I’d never heard of it before and have never met in person or virtually anyone with the same diagnosis. I only discovered this site yesterday. And here are many of you! I look forward to sharing and supporting with you in the future.

    Currently, I’m in active pain and inflammation mode. I was sick with a cold/sinus infection recently & it seems to have triggered the worst flair up I’ve had in quite a while. I’m pumping up the fruit and vegetables intake. They seem to help.

    I know when the RP is bad when I can feel my ears even when not lying down. I can feel them now. On the positive side, I’m not having any trachea involvement this time around.

    Wishing everyone a pain free day.

    Lily

    #RelapsingPolychondritis