neuropathy

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    Just me

    I am all of my #ChronicPain #mayordepress#fybromialgia #Neuropathy #AnxietyAttack #Migrane
    But with all... ,I AM FABULOUS, I AM ME
    HAVE A NICE THANKSGIVING EVERYONE

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    The Autumn Of My Years

    Frank Sinatra famously sang in “It Was A Very Good Year”—a survey of his life of sorts—observing that it was a very good year when he was 17, and again at 21, and 35. Later the days grow short and he finds himself in the autumn of his years. Frank doesn’t share with us what age he is, but it’s 2022 and I’m 42, and I feel that I have reached the autumn of my life.

    I am rooted in my bed. I can stretch my limbs as far as downstairs maybe once, twice, a day. I manage to water myself about twice a week, but even then, my trunk groans and creeks with the effort. Most things that I enjoyed when I it was in the summer of my life, have lost their lustre. And like the autumn tree, I have begun to shed my hair.

    My branches held onto my leaves as long as possible. For that I cannot fault them. The rings of decay from the physical—and emotional—stress that were forming unseen inside me just become too many, and without my awareness. I saw countless doctors, all of whom failed to identify the rot that had set in, declaring me a mystery with my inverse T-waves, shaking limbs, falling leaves, and general failure to thrive. Finally, after two emergency room visits, a hospital stay (2 out of 5 stars, do not recommend), I finally saw an endocrinologist after a two month wait. He was confident that I had most likely gone from a state of hypothyroidism to hyperthyroidism without knowing it, for at least a year. With all the stress this imbalance of hormones placed upon my body, my hair started to break and then fall out.

    So now I am in the literal autumn of my years.

    The forecast is hopeful in that with the right treatment, most of my hair will grow back. And, after having weathered an unrelenting storm for the better part of the past year, my body just wants to hibernate. I am grateful that we are approaching winter, which makes sleeping all day feel like less of an indulgence. But I think about my hair loss and how for the past two months I have been lost for the right words to talk about it… particularly in the absence of a diagnosis.

    There are things I can tell you though.

    I can tell you that even though I couldn’t walk, developed alarming peripheral neuropathy, and needed a wheelchair, the thought of losing my hair scared me more. Despite developing what the doctors repeatedly referred to as “concerning” cardiac symptoms, my concern remained with the loss of my hair and with each parting strand, a part of my identity felt at risk. I can tell you that after being admitted to hospital for observation, I became even more afraid when my body hair started to fall out. Making each trip to the bathroom into a turbulent storm of anxiety, grief, and depression, as my body continued to shed more leaves.

    This being a major outward sign of my condition, every day of increased hair loss made me feel like I was ever closer to being visited by the famed hooded logger, and thrust into the great wood chipper. And no Friends like Pheobe, Monica, and Joey to save me.

    As I fixated on my hair loss, I learned many things.

    I learned that there are all sorts of potions that you can buy, that promise to help regrow hair. There are wigs… so many wigs. But the choice really only comes down to two questions. “Can I pull off this radical new look?” Or, “if I cut this wig in a certain way, will it make me look like I did before?” Thyroid related hair loss apparently means any hair that does grow back, might not be the same colour as before. So that’s kind of like a present to look forward to, only it’s unlikely to arrive by Christmas. A full head of medium length hair apparently takes two, maybe three years to regrow. In that respect at least, I feel like I will be like a sapling again, with literal tufts of juvenile hair sprouting between what remains of my established leaves and locks.

    I can tell you that in addition to the emotional pain, hair loss hurts, quite literally. It hurts to pull on it, and my hair band falls out often—I just don’t have enough to bunch together anymore. So I’ve invested in cancer hats. Only I don’t have cancer, so I also feel like an invading alien species. And of course derogatory as the term is, it is accepted that cancer patients are “brave”. The only thing worse than this enforced bravery is that there is no accepted lexicon, or field guide for what I am.

    But I can tell you how I feel.

    I feel like the lonely tree in a forest that doesn’t look like, or feel like, I belong with the others. I’m not quite sick enough to be offered any support to help prop me up, even though every day is a struggle just to hold myself upright. Being my kind of sick is to be that lonely tree in a field that people are happy to shelter under in a storm, but quick enough to cut down at the first sign of disease.

    And I do not know when it will be spring again.

    But I hope that when that day finally arrives I will rush out into the wilderness and hug every tree I see. Even more so in winter—for I will know what it is like to be bare, and suffer from a lack of kindness or care.

    #HairLoss #Hypothyroidism #Hyperthyroidism #GravesDisease #Grief #Loss #Depression #Loneliness #ChronicIllness #Alopecia #MyCondition #Anxiety #Stress #MentalHealth #MightyTogether #SpoonieProblems #Selftalk #Selfimage #Selfesteem #PeripheralNeuropathy #Neuropathy #WritingThroughIt #Disability #Homebound #ChronicFatigueSyndrome #Spoonie #Hope

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    Help!

    Does anyone else on here have pots with neurological symptoms like pain? I could use some suggestions, help or advice. #POTS #ChronicPain #Neuropathy

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    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

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    What's one thing you wish you knew when you were diagnosed with chronic pain?

    If you've been working through your own chronic pain for a while now – what would you tell someone who's just been diagnosed that you wish you had known?

    I'll start...

    I wish someone had told me to NEVER compare myself to others who were also sick. Pain management looks different for everyone. #ChronicPain #Neuropathy #neuralgia #ComplexRegionalPainSyndrome #Fibromyalgia #Nervedamage #MultipleSclerosis #Arthritis #Shingles #Migraines #BackPain #Cancer

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    What helps you cope with gastroparesis?

    We're nearing the end of Gastroparesis Awareness Month. As we've discussed this month, gastroparesis can be a very challenging condition to live with, whether the challenges have to do with our signs and symptoms or the lack of knowledge and acceptance we see from other people.

    While managing gastroparesis is tricky, I'm sure our community has a ton of great coping techniques for dealing with this condition and any other health challenges that come our way.

    For instance, I cope with gastroparesis by scouring Pinterest for fun recipes that won't cause my symptoms to flare. I also find it helpful to talk about my experiences with folks who know what it's like to live with gastroparesis and other conditions like it.

    💚 So, fellow Mighty spoonies, how do you cope with gastroparesis? 💚

    Maybe you have a go-to TV show or movie that makes you feel better. Or a book of puzzles you like to do to distract yourself. There could even be a blog you follow that helps you learn how to manage your symptoms.

    Let us know in the comments below! 👇

    #Gastroparesis #EhlersDanlosSyndrome #Diabetes #ParkinsonsDisease #GERD #Neuropathy #hypermobilityspectrumdisorder #CheckInWithMe

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    Good days

    Today was a good day. Still experiencing weird, hard to explain pain. I managed to try and push through it. I made our bed. Did the dishes, finished my daughter’s enrollment for Pre k4. Handled some issues with debt by correcting insurance information. Got half of our dinner started and my husband will finish the other half. Finally laying down on the couch and resting. Appreciate the good days! You’re more than your symptoms. You got this. ❤️🤘🏻 #GravesDisease #hashimotos #Neuropathy #Silentmigraines #ChronicMigraineSyndrome #Fatigue #mom

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    What has been the most difficult part of your journey with gastroparesis?

    Gastroparesis brings with it a whole host of challenges, both physical and mental. It’s an exhausting condition in more ways than one. While I have yet to find a part of living with gastroparesis that isn’t difficult, there have definitely been moments that have been more difficult than others.

    Finding a provider familiar with gastroparesis and my other chronic conditions has proven to be quite challenging and I always feel like I’m on the lookout for better doctors. While the diagnostic journey was rather arduous, I think the aftermath of carrying this label might be more taxing for me, at least emotionally. Before being dumped last winter, my now ex-partner would comment on how complicated and stressful dealing with my health was. The gastroparesis diagnosis seemed to be the final straw and was what officially made the situation too “complicated” for him. Gastroparesis can be difficult to manage, but his words sure made everything worse.

    That’s been the most difficult part of my journey with gastroparesis — the lack of acceptance and patience from others.

    So, Mighty family, let’s get real. What has been or continues to be the most difficult part of your journey with gastroparesis?

    #Gastroparesis #EhlersDanlosSyndrome #Diabetes #GERD #Neuropathy #ParkinsonsDisease #MultipleSclerosis #Scleroderma #CheckInWithMe #MyCondition #Hypothyroidism #UnderactiveThyroidDisease

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    Moving forward can mean leaving the past behind. We’ve come so far and yet we still have so much to learn. What is something helpful you’ve learned?

    Being gentle with ourselves can be really tough especially when we reflect back and judge ourselves. It is so easy to be mad at ourselves for not knowing things when we were younger. But it has to be that way. If we already knew everything, there would be no room for us to grow in this life. Please share something helpful or useful you have learned along the way. We can learn so much from each other!

    Thanks to you all. Thanks for how you have been working to support each other!

    Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below in this post and others. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment or new post a simple ❤️or reply I’m sure they would really appreciate your support.

    #MentalHealth #Depression #Anxiety #PTSD #Disability #ChronicIllness #ChronicPain #Selflove #Selfcare #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #RareDisease #COVID19 #Migraine #Headache #HIVAIDS #longtermsurvivor #PeripheralNeuropathy #Neuropathy #BackPain #Addiction #AddictionRecovery #Fibromyalgia #Chronicpainwarrior #MentalHealthHero #Stigma #Grief #LossOfAParent #IfYouFeelHopeless #Hope #thankful #grateful #relief #Happiness #Acceptance #PainAcceptance #strength #CheckInWithMe #TheMighty #MightyTogether #MightyMinute #DistractMe