Peripheral Neuropathy

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The Invisible Illness Trap

I often think about the things doctors say to us, and how different their response would be if they could see our ailments. The caption to this self portrait of Van Gogh, is something a doctor said to me when I was so unwell from medication induced hyperthyroidism that it caused me to develop a near fatal cardiac condition. I was so nauseous, losing weight and struggling to keep any food down, that I begged him to help me even after he gave me this dressing down.

I can’t help but wonder what the doctor would have said if I’d walked into my appointment, with clear indicators of being physically unwell. And I don’t mean things like needing a walking stick or a wheelchair, because those were later used against me as “evidence” to prove that I was using my symptoms to get attention.

Van Gogh cutting parts of his ear off… might raise some mental illness questions to this day. But I think it’s unlikely that any doctor would ignore the state of his ear, tell he’d brought it upon himself, and that he needed to go away and “live with the consequences” of his decision in quite the same way.

#ChronicIllness #Hyperthyroidism #HashimotosThyroiditis #MyCondition #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #EhlersDanlosSyndrome #Endometriosis #Arrhythmia #Dysautonomia #PeripheralNeuropathy #Migraine #PosturalOrthostaticTachycardiaSyndrome

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We have reached 2,222 members🎉!! Thanks for being a part of this journey! (There is a special appeal to ALL members below.) Please read! 🙏🫶🤗Moshe

We are growing fast …just passed 2,200 members a few months ago and are at 2,222 today and growing strong! (If you are not a member yet please consider joining us!) This is really exciting to me, we have all put in the effort and as a community we have grown, flourished and have built a sacred place where I hope you all feel at home! You have shown you care for each other, are there for each other and trust each other. This makes me very happy and proud. I envisioned the group would be a place where members would empathize with each other, ask for support, and offer support to others. When we are operating smoothly this experience is so exciting to watch spread & expand.

However, to be honest, I have been very frustrated that there is less activity recently and as our membership grows steadily the number of comments & replies has actually diminished. Our old co-leader Chris is no longer with the group and we need to have others step up and make up for her commitment to regularly respond to posts and comments. This means a collective effort from everyone in the group! I have had numerous layers of serious physical & mental health challenges recently and have had to step back and focus on self-care. This is a time when you can all help me by checking in here and see if there are new posts and hopefully respond.

My last post about hobbies with the image of all the colorful people doing different fun things only got ONE response. And Laura made a great post about disability after that and it got only two responses. When new members have the courage to open up and introduce themselves we want them to feel welcome and supported. Please especially respond if you share some similar health challenges and hopefully offer acknowledgement and encouragement!

This is OUR group everybody and it functions best when members support other members. We all have our varied health histories and with them the knowledge and wisdom we’ve garnered along the way! PLEASE let’s share these with each other. This communal empathy and understanding makes us strong.

Offering your own posts provides more content for the group and can generate great conversations. Write about if you are struggling and need support, encouragement and/or information. Write about how great things are going and share things that are helping you. Pose a question to the group which can excite others to chip in. Or just share a great meme you have found. It can be really powerful for others to see your post as they can then empathize and relate! I would be happy to support your effort if you want to run things by me before you post, I can help finding memes or images if you like, and I will comment on your posts to get the responses going to best support your efforts. I’m here for you and really enjoy the whole process, so please reach out to me if you need assistance or encouragement. I have made well over 100 posts since I started the group and learned a lot along the way! (Please scroll down back in time to find my other posts, you might find some of them helpful😉)

I believe in the power we have as a group and the community we have built. I am so thankful you have joined us and we are all on this journey together!

In service,

Moshe Adler

P.S. ✡️Happy Rosh Hashanah✡️ -The Jewish New Year. May today mark a time of new beginnings for us all.🌦️⛅️🌤️☀️

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression #ADHD #PTSD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #RareDisease #HIVAIDS #PeripheralNeuropathy #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #TheMighty #MightyMinute #MightyQuestions #Concussion #BrainInjury

@laurascardigno @texassonrisa @xokat @sparklywartanks

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We are in need of a new co-leader for MHC to encourage, empower, & support our members. I make a APPEAL to current members - PLEASE read below!

We are currently looking for a new Co-Leader for the Multiple Health Challenges group. We are growning fast and just passed 2,200 members. This is really exciting to me, however to be honest, I have been very frustrated that there is less activity recently and as our membership grows steadily the number of comments & replies has actually diminished. Our old co-leader Chris is no longer with the group and we need to have others step up and make up for her commitment to regularly respond to posts and comments. This means a collective effort from everyone in the group! I have had numerous layers of serious physical & mental health challenges recently and not been as active as I would like in order to step back and focus on self-care. This is a time having another co-leader to pick up the slack is essential!

My last post about hobbies was actually first posted 16 months ago (when we had at least 1,000 less members) and it got over 200 ❤️ & 👍and 100 comments then! It got only ONE this time. And Laura made a great post about disability after that and it got only two responses as well. When new members open up and post to introduce themselves and then get very little response that is even worse. I fear that new members will see this and not be active moving forward. This is OUR group everybody and it functions best when members support other members. We all have our varied health histories and with them the knowledge and wisdom we’ve garnered along the way! PLEASE let’s share these with each other. Without this empathy and understanding this group is falling short of what I first envisioned when I started the group and what it’s capable of.

For a co-leader I am looking for someone to welcome new members, comment or respond to posts and other comments & replies, and make new posts to the group. It is important for the group to have distinctly different voices to support people because people might relate more to either 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. I can assist and support by offering to look at your new posts for feedback and editing before you post if you would like, will comment on your posts to get the responses going to best support your efforts, and I can help finding memes or images.

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.

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 your 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!

In service,

#Depression #Anxiety #MentalHealth #ChronicPain #ChronicIllness #Chronicpainwarrior #Disability #BipolarDisorder #BipolarDepression #BipolarIIDisorder #Bipolar1Disorder
#ObsessiveCompulsiveDisorder #ADHD #Schizophrenia #AspergersSyndrome #Autism #Dementia #Concussion #Addiction #AddictionRecovery #Cancers #TraumaticBrainInjury #BrainInjury #LossOfAParent #Grief #Suicide #ChronicFatigueSyndrome #DistractMe #HIVAIDS #MightyQuestions #DownSyndrome #IfYouFeelHopeless #Hope #Deafness #neckpain #BackPain #CongestiveHeartFailure #Migraine #COVID19 #PeripheralNeuropathy #LymeDisease #Diabetes #EatingDisorder #Headache #Stroke #Cancer #BorderlinePersonalityDisorder #Fibromyalgia #Disability #thankful #grateful #CocaineDependence #drugaddiction #Alcoholism #PTSD #EmotionalHealth #physicalhealth #PainAcceptance #Acceptance #relief #Selflove #Selfcare #MentalHealthHero #TheMighty #RareDisease #MightyTogether #RareDisease

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What are hobbies and healthy activities that have helped your mental health?

Typically when people think of self-care, they think of: getting enough sleep, exercising, eating well, taking a nap, meditating, taking a bath or shower, or even going to a spa. But what if a rock concert is more your speed? Or Rockclimbing? Bowling? Backpacking? Fishing? Gardening? Deep cleaning? We are each our own person. What works for you may not work for others, or vice versa. There is no “right” answer as to what hobbies can and do improve our mental health. By sharing what helps you, hopefully other members will be inspired to explore those or other new activities!

I like listening to or making music on my drum. Recently I’ve found listening to podcasts can be very enthralling…entertaining and even educating! At the beginning of Covid Stay at Home I got some Legos and making things with them was fun and a great distraction…so it was a new creative hobby …and using colored pencils filling in mandalas and tattoo flash in adult coloring books (yes, they have these! They can be quite intricate and challenging …or simple) These were surprisingly therapuetc and calming! I love taking the time to create something, finish it, step back, and see the end result of my efforts. It can make me feel really good…proud, accomplished and empowered!

What have you found works for you?

Here’s a quick check-in for if you’re feeling self-conscious about your preferences…

Q: Does [insert hobby here] help you when you’re down?
A: Yes!

Conclusion: Then you’re doing it right, my friends! I am so glad you have found things that help you. Keep exploring to find new hobbies to expand your possibilities and new ways that you can turn to when you’re down or need a boost!

Please share those hobbies activities below — let’s see who has similar ones, or maybe ideas people haven’t thought about but will help them too!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #RareDisease #HIVAIDS #PeripheralNeuropathy #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #mighty #MightyMinute #MightyQuestions #BrainInjury #Concussion #BrainFog #MemoryLoss


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When do you feel brave? When do you feel strong? When do you feel smart? … When do you wish you felt braver? feel stronger? feel smarter?

Being courageous and taking acts of faith requires self love. From self love we can do more self care. Then we can look for the moments when we have felt braver, stronger or smarter….and can start letting ourselves dig deep and find our inner strength that we all have. Without it we may not still be here today. Even when I’ve been physically weak and felt like I couldn’t do any more, contribute more, or just show up…l’ve learned to dig into the power I was born with. Over the years I’ve found myself losing my ability to do things I used to do (a lot) I have found that I have the power to dig deep and push through and have realized that I’m a warrior and I wouldn’t have survived all these years if I hadn’t tapped into my emotional strength and fought for my life, fought to overcome fear, worry, sadness, depression, lack of confidence and fought to try to ignore others judgements and negative thoughts. (Many of which are just my projections.)

I have the blessings of a support network of family, friends and amazing health care providers which has truly helped me survive. Over time I learned to accept their support, often only when I got the courage to ask for help. But my best support is what I have found deep inside me that I never knew (or believed) I had. I have learned to trust myself and just take one new day at a time, one challenge at a time, and fight through one type of pain at a time. Its a work in progress. Some days can be much harder than others, but I will keep moving forward on my journey of building self love..

YOU ARE ALL WARRIORS TOO! You have taken the risk to join The Mighty, and to join groups to find connections…to learn from others and then in the process have made the intention to better yourself as a person and found here that you are not alone. You may take medications, although often begrudgingly; you may go to doctors appointments, even if it takes all you have to get there; you may go to therapy, at first not knowing what to say… all in hopes of overcoming challenges, feeling better, and getting stronger. You have survived so much because you all have inner strength, courage and smarts you were not only born with, but you have built on and strengthened these powers from what you’ve learned along your paths of survival! So be courageous, be strong, be smart, and you will continue to survive and thrive and take leaps of faith!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression
#ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #MightyTogether #DistractMe

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It’s ok to not be ok! Health challenges can leave us physically & emotionally drained. Mine became too much & I had to step back to focus on self care

Like it says in this meme, I can feel upset, confused, frustrated, depressed, angry, despondent and especially lonely. … as I have spent too much time isolated and stuck at home due to my physical limitations. Recently I’ve had to step back from this group to focus on the layers of self care my body needs and the very regular doctor and health appointments I go to have really drained my energy. Meanwhile I have lost a close relative, a close friend and the branch of the men's group I’ve met with weekly for 6 years sadly officially disbanded & had our last meeting last week. At first these all became holes, empty spaces in my life. all people and a group where I felt very safe, felt loved and they were people who knew my past struggles and meandering path..and were always there for me.

It was really tough to lose all that support at the same time. I felt even more alone at a time when I have been in severely distracting pain and I’ve been physically and emotionally drained every day. I had nothing to give anyone else when I would usually have been supportive and always tried to be here for you.

Today my health is just a little better, and I’ll take small victories … My Physical Therapist just cleared me to go back for daily walks and/or go back to the gym. (I've been seeing him for my spine (neck/shoulder & back - injured in my second concussion) and ankle & foot (injured in an earlier fall) … and today the Neurologist specialist told me very confidently that I definitely don’t have Parkinson’s Disease, which we had feared. For almost a year I presented the same symptoms, and he stopped, changed dosages & changed meds very aggressively, did scans & tests and monitored me regularly. Yet he was very happy to see that my Essential Tremors are almost completely gone and my balance is better. I had other symptoms like brain fog, memory problems, very regular migraines, and worsened Neuropathy due to Covid Long Haul and then the brain injuries. With the more recent concussion all these things have intensified and the way I fell put pressure on my spine -neck down to lower back which have been the most troubling areas and triggers for the chronic pain.

I just keep doing the next right thing, treating what hurts the most first, then the next, and the next …and accepting my limitations; adapting my lifestyle; and I keep hoping that some symptoms will be over sooner than later. Over time I have settled into a routine of self care; and let myself to just BE, and not have to DO things all the time!

I’ve been worn out and missed many posts or comments here and haven’t supported you guys as much as I had been for over 3 years now. When I started this group I pledged to myself that I would respond to all posts, comments or replies. It has been an honor for me to help maintain this group and that you all trust me and each other. You all have helped me to create the safe “container” of this group where people feel comfortable enough to share, support each other and it has been rewarding to see the way people have connected with each other when they share things in common. We have grown into a strong, diverse and unique community!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #Bipolar1 #Bipolar2 #BipolarDepression
#ADHD #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #MightyTogether #DistractMe

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Point Of View

When I’m able to get out, I try to make an effort to submerge myself in fresh cold water near the aquifer. I don’t know why but I find it easier to take the plunge in the great outdoors rather than doing cold showers at home.

This was my view today under the crossing stones, while The Duke made himself comfortable on my towel above 💙

#ChronicFatigue #ChronicFatigueSyndrome #MyalgicEncephalomyelitis #Fibromyalgia #PeripheralNeuropathy #ChronicIllness

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Different Mobility Aids for Different Days

Hi there! I was only recently diagnosed with hEDS so I'm still new to the online communities, but I've been dealing with pain and symptom management for it for well over a decade now. I've used a handful of mobility aids, so I thought it wouldn't hurt to share some of my experiences with them!

I used to hate mobility aids because they made my invisible disability very much visible, and that tended to change the way people treated me. (I live in a very small, conservative town that still holds a lot of outdated views on minorities, including people with disabilities.) In recent years, though, I've pushed past that hatred and come to appreciate the benefit they provide in terms of not only mobility, but pain management! That being said, it took some trial and error to figure out what aids helped me with what pains/flares, and I just wanna give a quick rundown here.

Canes - These have served me well when dealing with mild injuries to my knees or ankles, or when my lower joints are feeling very, very unstable. They're beneficial in the sense that they're lightweight and easy to store when not being used, but they can cause flares in peripheral neuropathy or wrist/elbow pain when relied on too heavily or used too often.

Forearm crutches - These are actually a new discovery for me. Unlike canes, the pressure is distributed over your hand, wrist, and forearm, which lightens some of the pressure. However, most forearm crutches aren't adjustable and, if the angle isn't good for you, the benefits of the extra support are pretty much nullified.

SmartCrutches - A specific brand of forearm crutches that I can't recommend enough. Unlike a standard forearm crutch, the angle of the forearm cuff on these is adjustable. This has been so beneficial because I can shift it to lay almost flat, putting most of the weight on my forearm instead of my hand or wrist. It's easy to adjust when I need to redistribute the weight, too! They are definitely on the pricier side, but if alleviating pressure on your wrist is the goal, I strongly recommend looking at these instead of a standard pair of forearm crutches.

Walkers - These can be really beneficial when you need some help walking and need to be able to sit (if you get one with a seat) and rest your feet or wait out a POTS episode to avoid fainting. Despite that, I'm not the biggest fan of them for me personally. I'm not overly tall for a guy, but still above average height (5'10"), and most walkers are just too short for me. The only ones I've found tall enough for me don't have a seat built in which, for me personally, defeats the purpose of a walker. I also tend to walk fast and find they slow me down because they're a little clunky. But, that's just me! They might work really well for you.

Wheelchairs - First off, they're expensive, so I haven't been able to afford one for personal use. I have, however, had the privilege of making use of one in several places in my community where they are available for people with disabilities in need. Generally, I don't need one, but when the pain in my spinal column, hips, or knees gets to be just too much, having access to a wheelchair has been an absolute lifesaver. Having to wheel myself around does put strain on my shoulders though, which can be problematic if I need to do it for an extended period of time. I usually ask my husband to push me around, and when we do that, the wheelchair allows us both to enjoy our outing to the fullest extent without causing me any additional pain or injuries. I unfortunately can't speak on electric wheelchairs, but I'd imagine they're even more beneficial, albeit significantly more costly.

Bonus: Braces - Not technically a mobility aid, but I felt the need to add them anyway. Braces and splints have been a major saving grace for me. I've used them for my fingers/hands, wrists, ankles, knees, elbows, sacroiliac joints, shoulders, and even my neck. Each one provides additional stability to the targeted joint, but you do need to be careful that you're picking the right brace for you. Some will put more pressure on one area, some are less compressing - it's all a matter of what works best with that part of your body. I tended to try cheaper alternatives from Amazon and KT tape to test different styles before spending money on a higher quality one for more permanent use, and that worked out well for the most part. Just don't do what I did and use the cheap one for TOO long (I ended up with serious chafing on my wrists due to cheap material).

Oh dear, this got longer than I meant for it to, but I hope this information can be helpful to even just one person who isn't sure where to start with mobiltiy aids. I know I struggled choosing what was right for me in the beginning and wasted a lot of money on things that just weren't a good fit in the end, so I hope this saves you even just a tiny bit of trouble!

#EhlersDanlosSyndrome #MobilityAids #ChronicPain #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #Fibromyalgia #RareDisease

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I'm new here!

Hi, my name is Dawnr629. I want to learn more about living with chronic conditions.
Here are just a few of them. #MightyTogether #Anxiety #Depression #PTSD #Crohn #EDS #CoronaryHeartDisease #PeripheralNeuropathy #Lupus #ChronicPancreatitis

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