Peripheral Neuropathy

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    I am new here!

    My name is Samuel. I have been diagnosed with 20 different illnesses and/or diseases over the years. The last one, early stages of Alzheimer’s. I am emotionally drained most days. It feels like my memory is being erased, besides having problems communicating and process thoughts, emotions, and ideas, etc. The other issues worsen the situation as these still need to be managed, but they have a severe impact on my mobility, comfort, and other human basic needs. Anyway, thank you for listening.














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    I’m new here!

    Hi, my name is ladywissues. I'm here because I need support from others who have peripheral neuropathy and depression, rare diseases and chronic pain.

    #MightyTogether #Depression

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    The article below is full of great ideas on how to find a good new doctor…please add your own experiences, tips and suggestions

    Great article that talks about the importance of good bedside manner, doctors that listen, checking your insurance at the start of your search, asking good questions and do your homework of course! It has lots of good ideas especially at the end under “Finding a good fit”…like…

    “…During that first visit, think about how the doctor and office staff make you feel, HHS advises. If the doctor doesn’t make you feel comfortable, show respect for what you have to say, know your medical history, and spend enough time with you, then they might not be the one for you.”

    #MentalHealth #Depression #Anxiety #Disability #PTSD #Selflove #Selfcare #ChronicIlless #ChronicPain #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #COVID19 #Migraine #Headache #PeripheralNeuropathy #Concussion #BrainFog #ParkinsonsDisease #balance #EssentialTremors #Memory #Addiction #AddictionRecovery #HIVAIDS #longtermsurvivor #ADHD #RareDisease #ChronicFatigue #IfYouFeelHopeless #Hope #Faith #FuriouslyHappy #Belief #Love #help #GettingHelp #InsideTheMighty #TheMighty #MightyTogether #DistractMe

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    Concussion, Migraines, major Balance issues, Parkinson’s, tremors, Neuropathy, shoulder/neck pain, back pain, brain fog, poor memory, and no appetite.

    (PART ONE) Please send me prayers, good vibes, healing energy and keep me in your thoughts. It would really be appreciated. It is very hard for me to ask for help…but bedrudgundly I have been parking in handicap parking spaces and recently began using a walker. To be honest I’ve had to! I had four falls at the end of December and I am constantly catching myself from falling over and having to regain my balance and re-direct myself. It is very challenging in my apartment where I have no support and very often find myself leaning against walls and always being very conscious to make slow turns part by part like a clock, and get up from a sitting position very carefully the special way I was taught.

    Just this past February I was diagnosed with Parkinson’s with Essential Tremors and balance problems, and had to stop a med I took before bed for over 10 years that may have been causing it and then without it I didn’t get a good night’s sleep for over a month and woke up 3-4 times every night.

    Two and a half months ago I had a bad fall at my mom’s, scared her half to death and injured my neck and shoulder. I had just started PT for that when I had another big fall … hard, and my head snapped back as I hit the ground. Later that week I was diagnosed with a concussion and I have seen 5 doctors and had about 10 appointments so far since then and been to a concussion clinic. Then I saw another Neurologist and he confirmed what another said…that my symptoms from my concussion likely will last up to 6 months!!! Thankfully it’s already been 6 weeks but there is 4.5 months ahead. But he was optimistic about the progression I’ve had and said I am on the Path to Recovery! But it sure is a rocky path!

    Other symptoms I have had are really bad brain fog and memory issues which have left me having to stop and take a long break to find the right words or even remember where I am in a conversation, and having to look up the spelling or meaning of simple words. These two things are very scary and embarrassing…(please continue to Part Two below)

    #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #Selflove #Selfcare #Concussion #balance #ParkinsonsDisease #EssentialTremor #PTSD #COVID19 #Migraine #MigraineBrainFog #Memory #HIVAIDS #longtermsurvivor #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #BipolarDepression #ADHD #TheMighty #MightyMinute #MightyMoment #MightyTogether #DistractMe #IfYouFeelHopeless #Hope #relief #Love #PeripheralNeuropathy

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    Concussion, Migraines, major Balance issues, Parkinson’s, tremors, Neuropathy, shoulder/neck pain, back pain, brain fog, poor memory, and no appetite.

    (PART TWO - please read Part One above first)

    …and the Neuropathy and Migraines I already had have gotten much worse. I had started a new daily med for my migraines and I was having much fewer and less intense ones whenever I did have one. But since the concussion I went from only 4 a month back to 12 migraine days in December. They can really hijack a whole day from when I wake up til bedtime, with bad light and sound sensitivity leaving me in the dark with no sound and very sensitive to movement. I have had Neuropathy since I first started my HIV cocktail in 1999 but it had gone from being bedridden to manageable. Since the concussion I have struggled even before I got out of bed, and I also have no appetite at all. I was about 205 before when I got Covid two years ago but weighed in at 192 when I got out of the hospital and rehab where I did PT and OT but I just weighed in at 178. This is too much weight loss!

    This week I started PT for movement /balance and will do so 2x/wk for 8 weeks plus OT. I have been doing the exercise I was given so far 3x/day. (Please see the Update at the bottom about a new fall recently that was probably another concussion). And with the newest med I’m on I have gotten some good night's sleep. Every 2-3 nights but still some are better than none. I use a walker everywhere I go for necessary support and have started drinking two Ensure drinks a day to get protein I need with limited eating.

    I definitely am not a patient person but this 6 month scenario has me putting up with challenges for 4.5 months more and adapting to my limitations. When it’s not one thing, it’s another. It’s really helpful that I have had serious pain and lived with other limitations much of my life, so sadly it’s not unfamiliar ground and I just hang on. I enjoyed watching football this weekend while stuck in my lazyboy recliner like usual and tomorrow I will park in a handicap parking spot and use my walker to get to yet another appointment. I try not to dwell on the limitations instead I choose to remember I am on a Path to Recovery and I won’t be like this forever.

    UPDATE: Sadly, I was going to post this 3 days ago, but just fell again and face-planted and hit my head very hard. I have a gash under my eye in the shape of my glasses which rammed into my face. I cut my lip pretty badly and both places are very swollen and bruised including a nasty black eye. Just the week before my Neurologist was so happy to see I was using a walker because he said “I’m glad you’re using it because the last thing we want is for you to get another concussion” I fear (and feel) that is what I just did!

    #MentalHealth #Depression #Anxiety #Concussion #ParkinsonsDisease #ChronicPain #ChronicIllness #Disability #Limitations #Selflove #Selfcare #COVID19 #Migraine #PeripheralNeuropathy #HIVAIDS #PTSD
    #BipolarDisorder #BipolarDepression #Bipolar1Disorder #Bipolar2Disorder #ADHD #Tremors #balance #fall #TheMighty #MightyTogether #MightyMinute #IfYouFeelHopeless #Hope #Love #Belief #happy #DistractMe #BrainFog #Memory

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    Some things in life can really make you mad

    Brain fog from new supps recommended by the results of the private lab test recently received has me feeling like I’m in a state of arrested development. I can’t easily get out, and I’ve become a pariah to most who know me. I’ve written about this before… many people don’t know what to say to me, so now they simply say nothing at all.

    But that doesn’t make it hurt any less.

    Feeling like if I’m not whole and actively participating in life, I am not worthy of their time. It cuts ever so deeper when I realised that when I had nothing left to give, I lost most of my family. Many are apparently “there for me” but in an abstract way only that doesn’t require them to do more than send me texts. I have been relegated to acquaintance status. And I find my health problems are conveniently diminished by the use of reductive phrases like me being “sicky-poo”. One; I haven’t been “sicky-poo” since I was a toddler and two; I know this is a means to downplay the severity of my illness, because you don’t have to show up for someone who you refuse to acknowledge as being chronically ill.

    Then there’s the people who treat chronic illness like it’s a competition.

    I’m sure you know the type. If you complain about sleep problems, they instantly bemoan their own. If you’ve stubbed your toe; they’ve broken their own. When I was hospitalised with chest pains and high blood pressure, a family member had to change the conversation to them having visiting the hospital for an ingrown fingernail. Apparently routine outpatient treatments are equatable to being admitted to a cardiac assessment ward.

    Being chronically ill, brings out the worst in most people.

    And to add injury to insult, I find myself having to self treat and order my own lab tests to try and improve my health. Of course, the first thing doctors will say is that I shouldn’t self treat or self diagnose, yet in their unwillingness to help me, what else am I supposed to do? I’ve lost count of the number of times I’ve been declared to be the picture of perfect health based on basic bloods. Yet the advanced lab tests I have done reveal a completely different picture.

    Worse, poorly informed doctors can hurt patients with bad advice. Case in point; the private GP who told me that I should treat my heavy metal poisoning with graded exercise therapy (GET). Never mind that it’s been scrapped from the treatment guidelines for people with CFSME, moreover, my body is so depleted of nutrients and my detox pathways so overloaded with oxadative stress, forced exercise would undoubtedly make me so much worse.

    And I am no exception to the conditioning that society attachs to looks and our worth.

    Which makes my continued hair loss and the burning peripheral neuropathy, yet another assault on my everyday life. It’s hard to feel like you matter when you know you are an afterthought to the people who proclaim to care about you, have doctors invalidate your illness, and feel the eroding effects of your condition on your body. I feel suspended in time, yet time is taking it’s toll on me nonetheless—both physically and mentally.

    I’m not entertaining any thoughts of ending it all, but I can’t help but think of what my funeral might look like. A staged event with all these people rushing to say wonderful things about me after I’m gone. Virtue signalling writ large. There may even be some tears. All this from people who can’t be bothered to speak to me while I’m still here.

    As always I find that whatever I’m going through, there is someone who has covered similar ground and in this case I find myself thinking of Monty Python’s “Always Look On The Bright Side of Life” from Life Of Brian. Specifically this part…

    “Life's a piece of shit, When you look at it, Life's a laugh and death's a joke, it's true, You'll see it's all a show, Keep 'em laughin' as you go, Just remember that the last laugh is on you.”

    #MentalHealth #Thoughts #MyCondition #HairLoss #Neuropathy #PeripheralNeuropathy #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #BrainFog

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    Truth Is A (Brain) Fog

    “The truth is a fog, in which one man sees the heavenly host and the other one sees a flying elephant.”

    I love an opportunity to quote the late great Terry Pratchett and my brain is so thick with fog today, that it would probably not surprise me to see a flying elephant.

    Since the catalyst event that has seen me bed bound going on four months now; two trips to the hospital, admitted for one week, seen countless doctors, all of whom seem to be wielding hammers and determined to make my symptoms into a nail… I’ve taken matters into my own hands and just ordered a deluxe bells and whistles urine test. This baby tests for neurological markers, mitochondria function, metabolism, gut dysbiosis, vitamins, minerals, amino acids, methylation and more (oh my!) It even comes with diagrams to show where the blockages may be 🔔

    So I’m doing a “no-tox”. Basically instead of detoxing, I have had to push pause on taking all of my supplements, potions, pills, plus my plans to make a Faustian pact with the devil. He keeps ghosting me anyway 🤷‍♀️

    It’s rough going, considering all these things I take are like duct tape—holding my universe together. But, and it’s a pretty big BUT… I am just so tired of doctors telling me different things with zero evidence for these “professional hunches.” My all body hair loss, cardiac symptoms and peripheral neuropathy have been variously attributed to trauma, menopause, hypochondria, heavy metals, hyperthyroidism, taking too many supplements, alopecia, heavy metal poisoning, and many others that the brain fog prevents me from recalling in full; yet zero scientific evidence has been presented to back up any of these off the cuff diagnoses.

    At this point I trust doctors as much as I believe I will ever see a flying elephant so I’m putting myself through the worst in the hope that on the other side of all this fog, there will be light—hard, cold, can’t ignore it, evidence kind of light.

    Today is day 1 of 2 of my no-toxing, then it’s urine sample day. Given the proximity to Christmas, all I want is to find some answers or at least get some direction with this test so please keep your fingers crossed for me that my Christmas wish comes true 🤞

    #BrainFog #MyalgicEncephalomyelitis #ChronicIllness #ChronicFatigue #PeripheralNeuropathy #MyCondition #InvisibleIllness

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