Peripheral Neuropathy

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    Every year the day before Thanksgiving is a very important day for me …it’s the anniversary of the day I was diagnosed HIV+. 37 years ago.

    This year is very different because this month I was diagnosed that I have Parkinsonism. One of the symptoms is having balance issues but I’m stubborn and Monday I was out hiking (with my trekker poles) and I fell …hard. I had another fall a month ago. The first one I injured my shoulder but I didn’t go to PT yesterday because I felt light headed and kind of fuzzy and I have had a weird headache continually after the recent fall. It’s different than the headaches I get with the debilitating migraines I have been dealing with from Covid Long Haul. So I fear I may have a concussion. One more health problem, but it will fade. I can handle it…because I share this writing at a time when despite today’s challenges I feel very blessed because I survived so much from dealing with AIDS. PLEASE READ BELOW.

    The day before Thanksgiving this year will mark the 35 year anniversary of when I was diagnosed HIV+. Every year when this time arrives I question why I am still here. Although a part of me can celebrate my life and be so thankful every year for having another year, another month, another day still being here, I am also sometimes consumed with guilt … Survivor’s Guilt. “Why me?” Why me in an opposite sense. Not why me… why did I become HV+? But why me … why am I still here and so many others are not? I am part of a small minority who made it through the 80’s when AIDS was considered a death sentence and are still around to talk about it.

    Today many people call me a “Long Term Survivor.” They tell me that it is a miracle that I am still alive, and they honor my life and fighting spirit...but in the mid to late eighties I didn’t think of any other title than that of being HIV+. In most people’s eyes or interpretations I “had AIDS.” I had choices to make but none of them projected to the foreseeable future or even held out hope. I just developed a close knit support group of friends and family and then joined a very special group. We were a support group of HIV+ people who came together to listen, share, understand, support and love each other in a way no one outside the group could ever imagine, could ever believe… could even fathom. No one other than us could feel our pain and worry that was so thick you could feel it in the air in the rooms whenever we met.

    We talked of our fears: of death, of pain, of hurt and how some of us were dealing with loved ones who did or did not know our plight, did or did not support us. We talked of our community that so many folks in the public could never understand. Those who misunderstood us, misunderstood HIV & AIDS, and harbored fear themselves often ran from us, judged us, judged our current and past actions, judged who we lived with, who we loved with, and later who we were dying with. The MIS-understanding in the public eye was so vast, so strong and so wrong that it made living and fighting off dying with HIV even harder. To say that there was prejudice is an understatement, to say that there was hatred was a sad reality, to say that there was fear was dead on accurate… lots of fear… and most of it fear of the unknown. People partly told themselves what they wanted to hear because there were very little facts. People displayed their fear outwardly or let it fester internally, but we were the human beings living in the bubble, inside the fishbowl.
    People assumed we were all gay or drug addicts. These were obviously misconceptions sometimes, but it was so much easier for some people to pigeon hole us so that they didn’t have to include themselves, including the possibility that they too may become HIV+. There were many who even felt that we “deserved” our (possible) death sentence and were callous and cruel beyond explanation, and their feelings often spread. It was easier to fear than to accept, to hate than to love, to judge than to try to understand.

    At our meetings we shared horror stories: of families, partners and friends who turned their backs on some of us and completely walked away (in fear, anger, judgment and often just to protect themselves in their minds). We talked of some doctors in the medical field from the military to the public who saw HIV+ patients wearing yellow hazmat suits and operated inside of plastic confines to take care of their patients… out of obvious overblown fear. We talked of hospital rooms with bright neon signs at the doors of our rooms announcing our reality to all who entered – sometimes even family and/or friends who didn’t know of our diagnosis beforehand. We talked about side effects and weakness, and living while we were dying and dying to get over the pain of living. We often were outcasts and misfits if for no other reason than that it was easier to see us that way than to have to absorb the truth… and there was no one accurate truth… there still isn’t to this day.

    I am blessed to still be here today. It is easy to question why, and it can be very hard to have to process these reflections. So, the day before Thanksgiving is my anniversary. It is impossible for this holiday to come and go without my being reminded that I was diagnosed that day in 1987… 35 years ago. I later figured out that I contracted the virus in 1985...37 years ago. I am strong and vibrant today and my “numbers” are very solid. My T-cells have risen back up from the very low numbers I had in 1997 and my Viral Load dropped from the highest number the tests could determine down to undetectable 23 years ago and have stayed the same.

    Yes, I made some calculated changes as to how I was living my life and yes I have a fighting spirit, but some of it also has to just come down to luck or divine intervention, depending how you see things, which way you believe things. I think I am blessed and the God of my understanding has looked over me. Why? I am not sure. Maybe I will be able to accomplish some things, to give back, to take my experiences and by sharing them make a difference in people’s lives. Or maybe I am just still around because I have been hanging on. Today I am not sure. Today I honestly don’t know if I have to be sure. Today I am alive and in the simplest of terms, every breath is a bonus. Today I continue keeping my commitment to tell my story, to help paint a real picture that may change some viewpoints, to answer any and all questions no matter how personal they are in an attempt to be transparent, honest and true… and today I appreciate the opportunity to do so!
    So, in retrospective sadness and current pride, I look forward to this anniversary every year and want to honor the spirits of those friends who I lost from those support groups, to honor those who I never met who shared our path, to honor all those hundreds of thousands of people who died along this path right here in the United States and millions around the world. So many of them became such good friends and I mourn their loss…

    Moshe Mark Adler
    November 27, 1999
    May 24, 2021 edit

    UPDATE: In this time of Covid, sadly I recognize death tolls like those from another pandemic: AIDS (with no vaccine even after almost 40 years). I looked them up...the numbers, including current ones, are staggering:

    690,000 [500,000–970,000] people died from AIDS-related illnesses in 2019. 75.7 million [55.9 million–100 million] people have become infected with HIV since the start of the epidemic (that we know of). 32.7 million [24.8 million–42.2 million] people have died from AIDS-related illnesses since the start of the epidemic.

    #ChronicPain #PeripheralNeuropathy #BackPain #Headache #Migraine #COVID19 #covidlonghaul #Disability #MentalHealth #Depression #BipolarDisorder #Bipolar1Disorder #Bipolar2Disorder #TheMighty #MightyTogether #MightyMinute

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    Happy Humpday!

    Here’s a throwback from the days when we were all slaves to the whims of the Mighty Ginger One. He is now chasing mice on the other side of rainbow bridge, and I like to think tripping up angels and scratching their exposed ankles when they least expect it 😹

    But where would be without our little anipals… they help to keep our lives interesting. In doing so, lend it some much needed meaning so that his paw prints are furever in my heart 🐾

    #Cats #MightyPets #humpday #DistractMe #Homebound #bedbound #MyalgicEncephalomyelitis #ChronicFatigue #Fibromyalgia #PeripheralNeuropathy #HypothyroidismUnderactiveThyroidDisease

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    We are in need of a new co-leader for our group. Please see info below. We need someone to encourage, empower, support & be there for other members!

    We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We have grown quite a bit and just passed 1,500 members. In the past co-leaders have been golden, really helpful for me when I got sick or burnt out and had to step away for a few days. I am looking for someone to welcome new members, comment or respond to most posts or other comments, make new posts to the group every once and a while, and preferably someone who has physical and emotional health challenges so they can best relate to and understand where other members are coming from when they post or comment.

    It is important for the group to have two distinctly different voices to support people because people might relate more to one of us. What is a really good situation is if we both respond to the same posts, welcome new members from different perspectives and provide voices for people that are accessible and relatable. There is a commitment needed that you monitor activities on the group regularly and can respond pretty quickly.

    Offering your own posts provides more content for the group…and when posts pose a question they keep things moving forward. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like it, comment on your posts to get the responses going to best support your efforts, help finding memes or images, and support you if we are dealing with someone struggling …. Like sounding suicidal or being manic…and I will check in to make sure you are happy and comfortable!

    I look at potential leaders' history of posts and/or comments that have helped and supported others in the past. Willingness to be honest and open about your own health challenges is crucial to best support people. A co-leader works together with me for some new posts and drafting new questions and is concerned about the well being of all members and can empathize with their paths.

    You will get access to the Community Leaders group and your name will have a “Group Leader” tab next to it up top on your comments and responses so I think people pay attention especially to your activity and wisdom shared from personal experience. Would you consider joining me on this journey? Let’s have a DM chat to discuss this! Thanks for considering taking on this role!

    #Depression #Anxiety #MentalHealth #ChronicPain #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder
    #Stigma #ObsessiveCompulsiveDisorder #ADHD #Autism #Dementia #Addiction #AddictionRecovery #Cancer #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #SuicideSurvivors #ChronicFatigueSyndrome #DistractMe #HIVAIDS #longtermsurvivor #ChronicIllness #ChronicPain #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorders #Headache #Stroke #help #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #EatingDisorders #CocaineDependence #drugaddict #alcoholic #PTSD #EmotionalHealth #physicalhealth PainAcceptance #Acceptance #relief #Selflove #MightyMinute #MentalHealthHero #TheMighty #RareDisease #MightyTogether

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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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    New spoonie

    Hi I'm new here on mighty. I just signed up yesterday but I already forgot how I came across this platform, thanks to my #BrainFog lol

    It's been 2 years and 7 months since I contracted #COVID19 and have been suffering with #longcovid since then. Despite hearing all kinds of denials possible from doctors, now I am diagnosed with #MyalgicEncephalomyelitis and #Fibromyalgia and many more. Not that the labels help with my symptoms, but they surely helped me look in the right direction when searching for possible #treatment plans.

    I'm almost 40 and been #stuck at home mostly. I've recently been approved for a public transportation access link service so I'm planning on using that from time to time. I use a #Walker #Rollator and occasionally a #Cane when I go out to the doctors.

    I guess I'm here to connect with others going through similar things whether it be a longcovid, PASC, fibromyalgia, ME/CFS, arthritis, spinal stenosis, or more symptom-specifically #HypersomnolenceDisorder #Hypersomnia #PeripheralNeuropathy #ChronicPain #ChronicFatigue
    I am quite new to this #Spoonie life and trying my best here.

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    Who’s in Chill Mode?

    Hey Mighties! Just poppin in to see how my favorite people are doing. Are you chillin or what? I’m taking some chill out time before our Friday Self-Esteem Workshop. They have been going really well. If you haven’t attended one and could use some confidence boosting tips, we’d love to have you. On another note, my skin is being absolutely annoying and makeup has never really been my thing. Might be time to re-think that.
    Anyhoot, here’s smiling at you Mighty. Wishing you a well weekend!
    #MightyTogether #CheckInWithMe #MentalHealth #PTSD #Anxiety #Depression #ChronicIllness #ChronicPain #HidradenitisSuppurativa #PeripheralNeuropathy #HypothyroidismUnderactiveThyroidDisease #AdrenalInsufficiency #Eczema

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    Are you Dis-abled? Are you Handicapped? How do you see yourself? How do you think others see you? How do you wish they would see you?

    I often think about how I see my situation, how to label myself…am I handicapped? Am I disabled? and what the reality is. To be honest I often worry about how others see me too. It takes a lot to process my limitations and how much my life is affected by my plethora of health challenges…

    …on any given day: I may have my feet & legs burning in pain due to the Neuropathy I got from my first HIV drugs; I may need to be in the dark with no sound due to an unrelenting migraine; I may stumble putting on my clothes or fall getting up out of a sofa due to my balance problems; I may drop food on the floor from a shaking fork due to my essential tremors; I may not be able to hear someone unless they are close and facing me … even with my hearing aids on; I may only see blurry images and words without may glasses on; I may find it very uncomfortable to sit in a normal chair due to pain from my back problems; I may get lost searching for words numerous times in a discussion due to brainfog; I may have to refer back to get spelling of a word, going back and forth writing every syllable due to my memory problems; I may be deeply depressed or have exaggerated feelings in what I call my Bipolar Brain; I may get incredibly nervous before being around other people due to my anxiety; I may find myself feeling the pull of my addiction.

    Whether it’s one of my multiple physical health problems and/or one of mental health struggles, they are all just part of my daily challenges. So have I “earned” the ability to park in a handicap parking spot? What do I think? Does it bother me when people stare? I have learned I have to do whatever it takes to take care of myself. I have learned to not worry what other people think. It might be a day dealing with one of my “invisible illnesses” or things I am struggling with inside. I look just fine on the outside with what you can see. (except when I’m walking with my trekking poles so I don’t fall), I may be dealing with challenges that they can’t see, can't be seen, and things they can’t even be aware of.

    So it's hard for others to know what it's like for me to live with such challenges! Because I am embarrassed and hide them so nobody can know about them, nobody can judge me because of them … but then nobody can understand, nobody can love and support me. I hide them all alone and it’s a very heavy load to carry!

    ———————————————————

    I just spent a whole weekend with my friends on vacation. They were kind and concerned and often offered a hand or reached out to help me …but I declined…

    ,.. because I have got to practice. I have got to be able to get myself off the floor if I fall when I am home alone. But I think it is also because having them support or assist me means I am unable to take care of my challenges myself, unable to do so because I’m dis-abled! A tough label to own and accept!

    #MentalHealth #Disability #Depression #Anxiety #Migraines #COVID19 #BipolarDisorder #RareDisease #MightyTogether #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #ChronicPain #ChronicIllness #TheMighty #mighty #Selfcare #Selflove #IfYouFeelHopeless #Hope #PTSD #HIVAIDS #BackPain #Addiction #AddictionRecovery #MemoryLoss #ParkinsonsDisease #Tremors #balance #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #DistractMe #PeripheralNeuropathy

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    Super Excited!

    Hey Hey Hey Today is the Day Mighties. So nice to share this space with such a supportive community. I’m very excited to be meeting with you in a couple of hours. For anyone who may be having a not so good day, I totally get it. Sending you comforting vibes! See y’all soon! #CheckInWithMe #MentalHealth #MightyTogether #Anxiety #Depression #PTSD #HIVAIDS #PeripheralNeuropathy #HidradenitisSuppurativa #AdrenalInsufficiency events.themighty.com/events/details/the-mighty-mental-health...

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    Has anyone tried ketamine infusions?

    Hi all, I’m reaching out as I’ve just seen a new pain specialist who has suggested I try ketamine infusions to help with my fibromyalgia, peripheral neuropathy and chronic migraines. There is very little information on the internet about ketamine infusion therapy so I thought I’d reach out to you all for any advice on it or please let me know if you’ve tried it? #Fibromyalgia #PeripheralNeuropathy #ChronicMigraines #ketamine #KetamineTreatment 🇦🇺

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    Intercostal strain / Fibro

    This past week I have managed to strain both sides of my intercostal ( ribs ) muscles and let me tell you how painful it is. I can’t move certain ways, sometimes breathing brings on a sharp pain, and if I sit or lay in a certain position it is excruciating and it also makes the muscle spasm. Has anyone else evoerienced this? I also have Lupus and MS among other things, but this apparently is due to Fibro? #Fibromyalgia #Lupus #MultipleSclerosis #MyalgicEncephalomyelitis #PeripheralNeuropathy #HeartConditions #HashimotosThyroiditis #ChronicIllness