Is there anyone my age with this condition with children that can tell me their experience? I’m scared one day I’ll be unable to care for them.
Help a mama out and respond anonymously on our forum. Scared about a recent bad diagnosis, can anyone give me hope?
I am 30 and told it’s no curable and now im on medicine. I also have 5 kids age 2-9. I also have fibromyalgia, massive nerve damage in my spine. My tail bone is curved now due to being broken and not fixed…
I’m 29 with it in my legs, plus fibromyalgia. I’m on gabapentin for it and it helps alot.
I have vein issues with my legs and im on gabapentin, it only helps so much. Supposed to get surgery to close my veins but its 2300 a leg
I have it and I takse lyrica and its manageable
Not trying to down play any part of this but while there is not a “cure” for this loads of people have this and it’s just a numb feeling I have it in the outside of my right leg from damage and it’s just numb leg. They do have prescriptions to help if there is pain involved so please don’t give up or make this worse than it is. Just keep going one day at a time just like ya do with everything else. It’s going to be okay.
I don’t know much about neuropathy but I hear it’s painful. Sending support!
I have fibromyalgia but I’m not on meds I hate them
It’s neuropathy not noropathy. There are many many ways to treat it… It can be painful but you can tough it out and get through.
I was diagnosed with Guillian Barre’ Syndrome in July 2018 where I was completely paralyzed from the neck down in the hospital in ICU where I would end up spending 2 weeks there and a month at an inpatient physical therapy rehab. My daughter was 2 at the time when this happened. I have since been diagnosed with CIDP where it’s an autoimmune disease and the myelin sheath attacks my nerves like would an illness. I’ve been in and out of the hospital since when it flares up it causes me to fall down all of the time and I currently feel my right foot at all except severe nerve pain l. My daughter is now almost 6. It’s not easy but she understands I have good days and bad days. When I have a flare up which my current one has been going on since April this year she knows there are things I can and cannot do. My friends and family help me out a lot with her when I need it
I am starting to have signs of it I’m 30 my mother and grandfather had it its genetic
Mine turned I to fibermayia no real cures meds that help pain but it slow ly kills off nerves n causes num.bness all over
I have neuropathy and have had it for 15 years. It’s not pleasant, but I have found an amazing doctor and I’ve gone from being sedentary to biking 10 miles a day and walking 3-5 miles a day.
I’m in 900mg of gabapentin 3 times a day. It’s helped along with the exercises my physical therapist gave me to do.
There are good days and not so good nights…make sure to drink plenty of water and most of all, explain to your kids slowly what is happening with mom. I did and it helped ease their anxiety and fears over time.
My mom is a diabetic and has had this for years. She was still able to raise 3 children and cook and clean all the time.
I am 29 (was 23 when diagnosed kids were 5 & 5 months) with a dead thyroid, incurable rare neurological muscle disease known as Myasthenia Gravis, migraines, Pars Defect in back, spine and tail bone are slipping. Uhm I had a dead gallbladder sit inside of me for 9 years because everyone thought I was lying, ended up turning jaundice it took 3 surgeries to remove it, still suffer due to my abdomen being nothing but scar tissue. I have depression and anxiety to the point idk if I’m coming or going. I sleep maybe 4 hours a night. AND I am prediabetic.
My therapist has been my life saver! Also remembering you are here for a purpose. Don’t give up! There’s a blessing behind it ❤️🔥
Almost All drugs are experimental…doctoring is a guess by symptoms. Never stop questioning
Try. Using horse vetanary. Linament. It works. On horses. It will work. For you. When I was young all the old. People used it.
It is called neuropathy. Therer are a lot of medications that work, like gabapentin or lamictal. Find a neurologist in your area, if you can’t afford one call your local health department and make an appointment with them andsee if they can get you a referral. There are several specialist that will see patients on fixed or low incomes. The best thing you can do is follow up as soon as possible. Can be due to many things like diabetes, vitamin B-12 deficiency, if a person has had cancer, chemotherapy is such a powerful drug, that can cause side effects like neuropathy, if you work somewhere that has a lot of chemicals, that exposure can cause it, an injury like a broken bone that a bone fragment has moved can cause it, some times infections can cause it, kidney disease as well as an inflammatory disease like being gluten intolerant which is also known as Celiac Disease, and then there are some that are called idiopathic neuropathy where the cause is just not known. No matter what, keep pushing for answers, and good luck.
I have it and I don’t have any real advice. You learn to live with it.
My husband has neuropathy. Hes getting stents put in soon in Left leg,hes had it done to right leg successfully. Get angiogram and stents it helps.We have adult children. I care for my husband its rough but he walks every day a little ways around our apt.He has cane and walker uses them only when needed.Pt and ot soon and they work.
Eat all low fat foods ,dont smoke and move around best you can,exercise.
I suffer with tumor/demylination(Usually that MS)/ fibromyalgia. Diet with low sugar helps my legs/1 sided weakness. It sounds stupid but spending time on my hair/self helps. Be leary of cymbalta it helps nerve pain but drs dont tell you how sad/mean you are when go off cymbalta
My mom’s diabetic and had had it for atleast 12 years!
I have this too for over twenty years. Magnesium oil after a shower, stretching, walking and I have always taken gabapentin too. Don’t stress too much it can be manageable
They treat the symptoms when you have brain/nervous system probs most arent cureable.
I’ve had neuropathy for years. I take no meds for it. Some days it’s not as bearable as others but I still function basically normal.
My mother has had it for years and tried many things with little relief until we finally talked her into CBD lotion. She said it has helped her with that and her arthritis pain
I’m i the same boat as you are, just thee kids less. I have Lower body neuropathy, I have recently been diagnosed with lupus. I’d get in to a Rheumatologist.
My advice is do what you can, your house doesn’t have to be spotless. You will have good days, and bad. Just one day at time.
Are you Diabetic, that can cause it. I’m 64 and have nerve pain of Sciatica
Take vitamin B12. My neurologist told me to take it. I also take Gabapentin.
I have neuropathy and mines worse when I’m sedentary. Idk if it’s different because mines from injury, but my PT told me if you keep the nerves firing and connecting they will retain memory, but if you dont you’ll lose that memory and that’s when the neuropathy gets worse
Epsom salt baths are also helpful as it is magnesium sulfate.
I’ve been diagnosed with this when I was 15 I’m now about to be 43. Thankfully my kids are 19 and 23 but yes the pain has gotten worse over the years, I had surgery 11 years ago to help with the pain is it helped for a few years. I’ve had to be on really strong narcotics for 14 years now to help deal with the pain. The best thing I can say is keep active because it’s important to keep the muscle in your legs because once it’s lost you won’t be able to get it back and the pain will be a lot worse with no muscle mass. I try and get out for at least 30 min walk each day to keep active. Also maybe try physiotherapy it did help me years ago but now my pain is far beyond that but at the beginning it does help and also ask about getting pain injections once the pain start getting bad because those help many people also. I have issues with my back also but my leg pain is worse then my back most days. Good Luck hopefully you can find what works best for you.
I have peripheral neuropathy arms and legs. I have 5 kids. I’ve had it for several years. You will be ok It isn’t as scary as it sounds.
You can care for them as neuropathy can be treated.It doesn’t go away and someday will be worse then others but you will need to walk a little more as that will help
My 15 year old son has Neuropathy.
I don’t have your condition but I am a quadriplegic (hands and legs paralysed). Life gave me a curve ball and the position of having to care for my two boys on my own when my husband died, they were 4 and 7 and no it’s not easy but it’s possible. One day at a time doing the best you can the way you know how.
Years ago, in my late 40s I was diagnosed with poor surface circulation in my legs. I had a ding that got sore on my left leg and didn’t heal for months. I also had cold feet and tingling in my toes, and couldn’t walk barefoot in my home anymore. I also couldn’t wear flip-flops or any shoe similar. The doctor dignposed my poor circulation gave me scripts fir toeless support stockings. Later when I ask fir the script fir them my GP sent me to the medical supply for support thigh high dress stockings. (Nylons) I now wera the knee high black extra support stockings all the time and my legs and feet do nor puff up or ache. I was finally diagnosed with neuropathy in my feet after realizing that was why my feet were always cold. I want to get some support thigh high I saw on Facebook but haven’t found them recently. My support knee high cut into my legs just below my knee and sometimes my leg below my knee itches. I like the support knee high and have black, navy and tan to wear. The tan look good and are not noticeable like the navy or black when I have on the stockings. Before wearing the support socks, I wore colorful ankle high socks with my shoes and sandles. When ask why, I said I had cold feet and needed the socks to keep my feet warm and had to wear a reusable callous pad on one foor to keep a corn from forming on the bottom of my foot and decided if I wore socks with my sandles I would get pretty socks. One lady on the bus who ask me why socks with my sandles called me a few days later on the bus and showed her ankle high socks with her sandles. She said while shopping at Walmart the past week with her daughter she saw the low, ankle high socks and got herself two packages to wear with her sandles or low shoes and liked them. I said that we are both over 65 so can wear what we like, we are entitled to at our age. She agreed. A fun memory.
I know I have had it for years the only time it really messes with me is at night
Boron supplements can help with this!
Yup im 27 have 4 kids have was diagnosed a year ago my pain is so severe now that it feels like im getting electric shocks and pins and needles constantly ive tryed so many nerve pain meds and ive now had to be put on codeine nightly just to make pain bareable
They should be grown before then I’m 73 had it for years
I have that and am pain free with taking gabapentin. Good luck
My grandma has it and it didn’t actually start effecting her till she was in her 60s. It’s different for everyone.
You could maybe try acupuncture. I know someone who’s had it and she said it’s helped with the pain/tingling from neuropathy. It doesn’t work for everyone and only lessens the feelings, it does not cure them.
Gabepentin, chiropractor and
I have chemo induced neuropathy. Garbapentin helped some but much improved when cymbalta added.
My dad had noropathy currently going on 8yrs since his diagnosis and the doctor said he had it for years prior and it went undetected. Prayers
When I married a 61 year old 12 years ago, my husband had it. He started taking blue-green algae and it did the healing trick!
He reversed the damage as he had no feeling from his knees down. He was starting to get the feeling back in his feet, but then died of a heart attack due to medical error…
You will notice that you will get those shooting pains, etc., after ingesting sugar of any kind - even artificial -
There is hope to turn i around and even get rid of it altogether -
I have nuropothy in my feet mainly
Neuranton is a great pain relief for it
At 31 I was diagnosed with Chronic Regional Pain Syndrome (CRPS), with 4 littles at home. Like you I was terrified of what that meant for my kiddos. Fast forward 15 years and we got through it. I had lots of different treatments, mostly I had to learn to speak in a language my kids would understand and I couldn’t be prouder of how we stuck together to overcome the obstacles.
Take each day as it comes. Look for the joy in every moment.
Don’t sweat the small stuff.
You’ll find your way!! Good luck & prayers sent your way!
Are you diabetic? That’s often the main cause unless you have been through chemo. Gabapentin is awesome. Also Lyrica. You’ll be OK. Just be careful that you don’t fall. Flat shoes. Use handrails going downstairs. Doctor could prescribe a stair lift. You can do this.
It’s very common. Lost of different things can cause it. It’s just nerve pain. It’s nothing to be upset about or worked up over. There are many simple ways to treat it. It’s literally not a big deal at all. Learn to manage pain and cope, use the meds if it bugs you that much. Find other ways to manage if you don’t like the meds
I watch what I eat and take store bought ibuprofen. I’m 37 and have been bad with it because of diabetes
My feet have been numb going on 3 years. I was diagnosed with ms March 2019. I was numb from thr waste down. Got everything back but my feet. I hate to say you get used to it. Same with the pain. I have pain everyday but it’s become my life. I take pain meds as needed. Had to stop ma treatment because I was diagnosed with lung cancer jan 2020. On trial study so no ms meds. Like I said it’s just normal life now. More bearable pain most day. If your a mom. You already deal with it and you don’t realize. Stay strong
There is actually something you can do at home with electrical stimulation.
I use it both professionally and personally.
We do it for my husband to give some relief and rewire the pain pattern.
He has rediculopathy in both legs which is incredibly painful as well.
There is always hope.
I’m 28 with multiple chronic and sometimes debilitating medical conditions. I’ve been sick since I was 12. I have epilepsy, dystonia, fibromyalgia, rheumatoid arthritis, and ibs. On the extremely bad days, I will lay down somewhere I can still be with my daughter and I get up to feed her and do the necessities while she plays or watches movies with me. More than not though, I’ve found ways to push through the pain in order to be a mom. A lot of it is a mind over matter thing, and you’ll be amazed at what you can do once you get in a “fight” mindset. I was told at a young age that I would most likely be wheelchair bound and on a lot of pain medication by the time I was 30-35. After working myself out of a wheelchair at 13, becoming a single mom after the absolute hardest trial of my entire life, and taking myself off all my pain medications, I’m healthier than I’ve been in years! You’ll learn that you have one of two choices: you can give in and give up, or you can fight and live to the best of your ability despite your diagnosis. Once you learn to fight, you’ll see what you’re capable of. If you ever need someone to talk to, please don’t hesitate to reach out! I get it because I deal with it too.
Did you have epidurals with your labors, they can cause nerve damage, I’ve got it my feet, but I’m diabetic
I have it in my left upper leg… Seems like it’s asleep …I did have epidurals with all 3 of my children… am not a diabetic…I’ve learned over time to just over look it…take ibuprofen daily and go on about my day.
My husband has it and takes Gabapentin.
My mom has it. Gabapentin and aloe infused socks !
Am 55 & still moving foreward. Keep living. You adjust but you be able to take care of them. I have had since the 90’s and it do get worse. Am THANKFUL every day am still making. Don’t be discouraged & enjoy life. The numbness come & go
Ive had it for years. Whats the problem?
Take gabapentin or lyrica and you will be fine. I wish I only had neuropathy……
My neuropathy was caused when I shattered my leg when I was pregnant with my son. He was walking before I was healed from the accident.
Neuropathy isn’t fun but it’s manageable. He’s almost 17. It never stopped me from doing anything I needed to do for him. I would just rest if I needed to.
Stay away from Gabapentin!!! There are other meds you can take for this
Get with a neuropath
Keep moving. Walk as much as you can.
CBD oil helps as well as different CBD salve. My son takes cymbalta for neuropathy as well
Cut. Out. Gluten. My neuropathy in my arms WENT AWAY after going strict gluten free. Celiac can cause neuropathy. Do not just accept their answer. I saw two neurologists and I made it go away MYSELF without their help/medication.
I’ve been taking gabapentin and ibuprofen for years but they are becoming less effective and I have a referral for pain management
My husband has that in his hands. It started when he was 28 and he’s 32 now. No major issues.
Find out I had it when i was 24 in my whole body. At the time my kids were 3, 1 and newly born. I am 40 now and I am still going. It does suck at times but my kids are fully aware of it. Talk with your doctor to determine a plan for you. Gabapentin is a huge help with it
I have been a diabetic since I was 16 and I have that neuropathy just take the medication and you’ll be fine
I have neuropathy in my hands and feet. My weight was the issue. Not saying that’s the issue for you, there are multiple causes of neuropathy, but for me, it was my weight. I was nearly 300lbs. I dropped to 155lbs and the issue went away. I’ve now gained a little weight back and the neuropathy is back. But it’s no where near as bad as it was at 300lbs. Now it’s just occasional and doesn’t really cause any issues at all.
I got diagnosed at 30 but I had been having issues for years it targets my hands and legs and feet . I also don’t have a underlying issue, it just happened. I tried meds the first year and nothing was helping and if it did it made me sick so I don’t take anything. Yes there is hope. If it’s in your feet the right shoes will help tremendously. All I wear is Birkenstock’s and if I do decide to wear a different shoes I can tell a big difference. It’s no fun and painful but I can promise you if you keep moving you will be fine. Also watch your weight. I have gained a crazy amount of weight and it makes it worse.
I’ve had it most of my life in my hands and feet. B 12 shots have helped alot and working out which helps with blood flow. I have lived with it for over 20 years. You’ll be fine and speak you concerns to your doctor. Physical therapy can help as well.
My mom is 44 now, she got it after a bad semi truck accident,where her rock-bucket rolled over. She’s had issues with her legs ever since, every so often she has to get a shot in her back to help with the pain. But for her she’s 44 now and she can’t really feely her toes,or feet,or legs, she describes it as, wind blowing against her leg, or a feather being dragged against her skin. She can walk and everything, but she can’t walk for too long, can’t really pick up heavy things. She can’t ride in a car for long times or she’ll start hurting.
Youll be fine plenty of us live with neuropathy and its not life threatening. Gabapentin will make it better. I recently went holistic and manage the condition just fine without any meds at all. Mine is/was/will always be very severe too and attached to bigger more scary diagnosis like MS. The neuropathy is the least of my worries!
I’m 31 and have a mild form of muscular dystrophy I was born with, which comes with neuropathy and also narcolepsy. I have 3 children under 8 years old and do just fine. I was also told I’d be in wheel chair by 30 - I don’t even use a walking aid yet i haven’t been able to feel past my knees in ten years or more… That being said there are people in wheel chairs or missing body parts and they are perfectly capable of raising children. It’s all in your mindset.
Possibly undiagnosed damage from l & d? Sometimes pregnancy can move vertebrae & cause pressure on a nerve…
I was diagnosed with this around your age. I’m 36 now. Mine was caused by untreated Lyme disease. (One part on one of my legs was caused from a tumor I had at 4 years old.) I still live normal. My legs can get a little tired but I just rest or push through. It’s not bad though. I do worry about the farther away future but I think my kids will be grown by then. I have went to physical therapy but I’m not sure if that’s for the neuropathy or atrophy. I would get checked for Lyme. About half the people never even remembered being bit by a tick plus it can be a mosquito etc that carries it. Good luck
Start taking vitamin B supplements and move around more.
I have freidriechs ataxia and a 7 year old. I’ve used a walker/wheelchair her whole life
I am 38 years old and found out I have neuropathy since I was 17. Since then I have had 2 handsome sons and care for them everyday. Best advice is don’t stop and don’t give up. A body in motion stays in motion. Enjoy being there and caring for them each and every day. The little things may seem small but to our children they are the most memorable
I have several neuropathy issues and a mom. It’s hard, and it sucks but this is now where you become your own advocate for your health. There is treatments and things that can help. You learn new ways to cope and parent. Be proactive in asking your doctors everyday. The nerve pain in my hip down my leg, compression stockings and a TENs unit are really helpful. Did you get a lumbar and lower body MRI?
I’m 28 & had it since I was a teenager from diabetes. I went through my pregnancy with it. You’ll be okay, to me it’s nice when I step on a Lego but can’t feel it
I dropped down to 73 pounds in 2012 and hot it in my feet. The Dr said it was my body had eaten all my muscle but when I gained my weight back, its so much better.
Look into herbs. Their healing. Don’t listen to what doctors say. Do your own research!
I have it due to diabetes… Now 61 was able to care for all 6 of my children… Now 16 grandchildren.
My mom has it, diagnosed younger than you and is65 and fine. You have to get a good dr to manage it