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JUDITH1654's Photo JUDITH1654 SparkPoints: (551,440)
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3/21/21 6:11 P

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My name is Judith (not Judy) and I've had neuropathy for a couple of years now. My doctor put me on Lyrica but it upset my stomach. I am now on Gabapentin and it has done the trick....unless I forget to take it at night, which is the worst time for me.

I firmly believe part of the reason my neuropathy is so bad is because I worked on my feet for almost 20 years in retail. That may not have caused it but I don't doubt it contributed.

Funny enough, when my feet do hurt, if I stand and walk on them for a bit, it seems to help. I've had people tell me that doesn't make sense to them but I think it's the pressure that alleviates the pain. But hey - I'm no medical doctor, I just know what works...at least for me.

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8HABIT's Photo 8HABIT Posts: 7,513
4/23/18 8:36 A

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I was diagnosed with neuropathy last December and saw a neurologist last week finally. I want to do everything I can to get better. My feet go to sleep at the worst time like in the middle of a big store.

Ellen from Kansas
"Anything one does every day is important and imposing and anywhere one lives is interesting and beautiful."
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LINDAF49's Photo LINDAF49 Posts: 14,980
7/8/16 4:14 P

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Hi, I'm Linda from Washington State - 67 and neuropathy has become daily challenge for my activities of daily living and seeking ways of treating, preventing progression of the dis-ease, how to cope with limits on life-style and hope for my future.
Started several years ago with numb feet then feeling of bee stings in toes and gradually moved up legs to knees. Had surgery Dec 1,2016 to replace discs and fusion in lower back, clear the spinal cord channel and try to save mobility. Too severe to help much - in fact lost all mobility and have regained some but require cane of some walking and two canes for most. But counting blessings because I am NOT in a wheel chair and not wearing diapers ...safe thus far. Came to learn and share life.



Linda in WA state ***John 10:10b Jesus came to give me life, an abundant life!
*Gluten free, Heart Healthy, Anti-inflammatory, Diabetic Low Carb way of eating and life structure
Jan 1 2021 immediate goal of 199.5# = ONEderland Long term goal of 170#


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CD12240591 Posts: 10
3/24/16 3:01 A

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KATER-C's Photo KATER-C Posts: 887
3/19/16 3:19 P

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Hello,
I've been on SparkPeople for a few years, but not active lately. I joined because I wanted to lose weight and get stronger. I've developed a habit of working out and am certainly stronger than I was five years ago, but have lost very little weight. I was just given a diagnosis of neuropathy (right leg and foot) after tests by a neurologist. I am not diabetic. According to the neurologist, who finds it hard to believe, my A1-C results are well within normal limits.

I'm just in the process of trying to understand and figure out coping, so happy to find this team.

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ASICH8 SparkPoints: (29)
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9/4/15 8:46 P

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i am [andy] a new team member and i have neuropathy of the feet.i am new to this problem.looking for others for all the help i can get to deal with this.
my doctor put me on lyrcia
hope it works
take care team members
andy

Edited by: ASICH8 at: 9/4/2015 (20:50)
CD15174725 Posts: 1,677
6/14/15 5:53 P

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My name is Tony. I have Type II Diabetes. I was diagnosed in 2004 & at that time I was just using medications to control it. Funny thing, my feet went numb long before I was diagnosed but my doctor at the time said it was b/c of my size that my circulation was bad, hence, the numbness in the feet. And he never checked & I never thought to ask to have me tested for diabetes.

In 2012 I got very ill with Sepsis. I near died. When I awoke in ICU 3 days later my left leg from thigh to knee went numb. I have not been tested but my docs in the hospital thought it was peripheral neuropathy. This is very hard for me to live with. I get an itch & scratching does nothing. It is most annoying. Painful but mostly a nuisance.

Anyway, I hope I can get some answers here & contribute to the Team as well.


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9/16/14 10:17 P

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ROBINRC1 Posts: 151
9/16/14 2:37 P

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Welcome I am not on here a lot ,but saw your post. I am so sorry you are in so much pain. I have Idiopathic Neuropathy which means they have no idea what causes it. The pain can be so crazy at times. When I am at my worst I can only manage to do some light Yoga. I don't mean the twist you in a pretzel kind ,but the easy stretching kind.They have lots of different one to choose from I try to stick to one that are gear towards people with chronic pain. I have found Spark People site has always been good for ideas.Hear is wishing you pain free nights & days filled with laughter. emoticon emoticon

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9/14/14 8:48 P

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TOPOHOKO's Photo TOPOHOKO Posts: 59
8/23/14 1:22 A

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Hi we are glad to have you hear with us. sorry to hear that you are having so much trouble. Can you share what you are doing now and the things that have seemed to help. again we are so glad to have you.
Penny

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KPBURTTRAM's Photo KPBURTTRAM Posts: 23
8/14/14 9:43 A

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Hi, I'm new to this group. I've been off and on with SPARKPEOPLE since 2008. I am diabetic and have neuropathy in my legs and feet.

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CD14866502 SparkPoints: (2,895)
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7/11/14 7:29 P

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Hi! I am new to sparkpeople. I have neuropathy along with osteoarthritis in my spine and hip. I am happy to have found this group.

TOPOHOKO's Photo TOPOHOKO Posts: 59
7/9/14 7:56 P

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Hi MISSMANATEE11
I'm sorry that you are going though this. From what I have researched you develop neuropathy from many things. The best thing i can tell you is check your blood sugars often as you can, take your glucometer with you to your next appointment then he can see that your sugars are under control. If you don't think that this doctor is going to listen and work with you then it is ok to switch doctors. I suggest that you read other post in different areas. I learned a lot from them and some times it takes awhile to get answers and the correct medication that works for you. Good Luck and if there is anything i can do for you let me know.

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MISSMANATEE11 Posts: 14
7/9/14 12:26 A

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Hi. I was just diagnosed with moderate motor and sensory neuropathy today after a couple of tests by a neurologist. He seems to think it is due to years of untreated diabetes but I have had blood tests for years and have never had any thing but blood sugar and A1C levels in the normal range. I do have Lupus and think this is a more logical explanation. He thinks I am in denial about the diabetes and wants to see me in 6 weeks. He seems to think if I get my blood sugar under control, I'll not have any progression of the neuropathy. I checked my sugar level when I got home and it was 101. An hour after supper it was 139. I do not see the sugar problem. Anyone else have neuropathy from an auto-immune disorder or am I looking in the wrong direction?

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TOPOHOKO's Photo TOPOHOKO Posts: 59
6/26/14 2:18 P

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Hi Judy,
Welcome to the team. As excited as we get to have new members it is also sad because we know the pain and suffering that goes with neuropathy. I have read that sometimes it takes so much time to find out what why and how our conditions. I have read and chatted with you before so I know that you have faith and pray for others. We will do the same for you. Some times at night when the pain is so bad reading my scriptures helps me through. Keep positive and sometimes it's ok to let others pamper us.
With love,
Penny


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CD14315421 Posts: 7,739
5/23/14 5:44 A

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Hello, I am new to this subject. I have been told that I have some type of neuro/muscular disorder, but they really don't know what the problem is. I have Neuropathy in the left side of my face and arm and leg and part of the right side. This started in January after a cardiac cath was done to find blockages in the heart. There were none. BUT within 24 hours I noticed my face getting numb on the left which gradually went down my left side. Stroke, I thought. I called St. Thomas Heart Institute where the cath was done and was told I was having a stroke to get to the ER. Anyway, ER said stroke, but it did not show up on CT or MRI. So I stayed over night and they sent me home. Since that time I have had these attacks four times. Neurologist who saw me the first time now says MS, maybe but as of 2 weeks ago, when she did the nerve conduction study on the left and partial right sides of my body, she says no strokes but some type of Neuro/muscular disorder, not sure what, but I do have Neuropathy. Tomorrow I start steroid infusions in home health care from the Home Health Care group that is doing my P/T. I can not control my balance or my left leg. So that is my story nutshell. (Not going into the white spots on my brain which are increasing). Frightened? A little. Giving up? Never.

Anyway, I was glad to find this team. Hoping maybe some of you can give me some insight into what I can expect. I am the Leader of a team called Keep Walking With Jesus and I keep myself busy there and abide in the faith of my Lord. I invite you to see my Sparkpage to learn a little more about me, if you would like.

I am looking forward to getting to know some of you. God bless and have a wonderful Friday and great weekend. Judy

RENIESSPARKIN's Photo RENIESSPARKIN Posts: 9,153
1/14/14 3:29 P

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Hello, again. I just realized I forgot to join any teams when I started posting Huddle comments on here. Duh! Is it possible to have Neuropathy of the brain? Actually, from what I've read you can have it anywhere in the body. You can get it in the ears, etc.

I'm still having a lot of problems with my GASTROneuropathy. Drinking a lot of water seems to be the only thing that helps, but it can still take hours.

If you're able try to do walking or even climbing stairs to get exercise. Altho, my peripheral Neuropathy is also pretty tough to deal with, I do better if I can walk. I also have Fibromyalgia and Diabetes (shots) and Sleep Apnea.

Take care, everyone,
Renie

Irene
Leader~I_Need_Sleep
Leader~Living_with_Neuropathy
Leader~Living_with_Gastroparesis
was-Leader~RLS/Wilks_Ekbom_Disease but everyone got "Restless" and left! :D


Good food, good sleep, good friends create a Spark for Life!

I've lost 45 lbs since the pix below with daughter & g'sons was taken.

Let's all have fun and encourage others while getting healthy!!


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TOPOHOKO's Photo TOPOHOKO Posts: 59
1/14/14 2:29 A

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Hello all, my name is Penny, I have had neuropathy for around 10 years. I am sorry to hear all your personal experiences. It is so hard to get people to believe how much pain and nerve twitching and tingling goes on. I had to quit work from lack of balance I worked in a daycare and would fall and drop things, working mostly with infants and two year olds, I was scared for them. Its a great group to be in because only if you are going threw this can you understand. And yes its hard to lose weight on the meds that help, it gets so frustrating but try to keep something that makes you laugh around because someday you real need a good laugh. I hope I made sense emoticon

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SUGARBABY60's Photo SUGARBABY60 SparkPoints: (0)
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10/5/13 8:55 P

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Hi I'm Sherry. Been on Spark about three yrs and looking for an active team to help me get my focus back on good health. My neuropathy is in hands legs and feet. Been on gabipentin three times a day for about four years. Dr tried me on lyrica after a week I was passing out at work , had a seizure at home felt drunk all the time so I tossed the things out and went back to gabipentin I still have periods of numbness and tingling daily but since I retired few months ago do not have medical insurance. Will be Medicare eligible April of 2014. So.hope to get things under better control...unfortunately I have been gaining weight like crazy the past year. Hope to get a better focus soon.

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8/19/13 4:23 A

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Hello everyone, I am Amy. I have peripheral neuropathy in my legs and feet and a little in my hands. I developed it after having chemo 16 years ago. I suffered a stroke 4 years ago. Since February of this year I have been having numbness and weakness attacks on my entire right side. I haven't been able to see a neurologist as of yet due to no insurance at this time. I have no idea if I am having mini strokes or if is tied to my neuropathy. My Dr. isn't sure which.

2004SILVERADO's Photo 2004SILVERADO SparkPoints: (0)
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6/15/13 10:57 P

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Hi SNOOPER,

Welcome to the team. Afraid to say this isn't a very active team.

You have really had a hard go of it. I hope things are better for you now. You are lucky to have such a caring boyfriend.

I do try to try to respond to most posts. Hope to hear from you soon.

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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SNOOPER9's Photo SNOOPER9 SparkPoints: (0)
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6/14/13 7:08 P

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I'm new here, I was on Spark a couple of years ago,the people on the team would post once or twice and poof thier gone. I got discouraged. But now I'm on Insulin about 4 shots a day,wasn"t as bad as I thought all these years. Maybe it was worst back when. I hardley feel a thing and I thought my boyfriend would have to give me the shots, nope I have no problem. But I do have Neuropathy,glad I can see it ,to spell it,lol Mostly its bad in both feet. It feels like I'm wearing Dishrags especially in the shower. My boyfriend works 11 hours a day and still comes home and asks Want me to rub your feet? I swear I'd probably lost some toes long ago.a couple of years ago I had a attack of nerves down one whole side. I couldn"t even sit up in a car. I've had open heart surgery 10 years ago,3 stent surgeries. Lost all of my teeth. Don"t smoke but I have a cold beer once a year,lol. I love animals,have a few,keeps my mind off the pain alot. I hope I picked a good place to stay.snoop

Your here for a good time,not a long time


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2004SILVERADO's Photo 2004SILVERADO SparkPoints: (0)
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5/28/13 11:11 A

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Hello BJM2GO,
Welcome to the team. I hope you can make yourself see that you are worth the extra work it takes to do your exercises and manage your food choices. It is hard but you will benefit so much by doing so!
It would be nice if you posted your weekly accomplishment on the Chat thread. That way we could be your support team.

Hope to hear from you soon:)

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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2BEBARBAGAIN's Photo 2BEBARBAGAIN Posts: 10
5/28/13 10:08 A

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Boy, it's difficult to curb sugar in the diet. It's hidden everywhere. However, that's the "last thing" I can manage at this point -- that and being more disciplined about even doing chair exercises. I do wear leg braces and walk very poorly without them (clutching to walls). When neuropathy (the loss of nerve health) affects the muscles, it gets harder and harder to walk. So it gets harder to get the heart rate up,too. I'm back on SparkPeople again today and hoping to check in at least weekly to report on better eating and the effects of doing chair exercises with weights to build some muscle. Hope people join us and continue to share their successes and victories in regaining sensation. One girlfriend is following a Paleo diet basically and has been regaining feeling in her feet. I believe she's also using a Rebuilder to stimulate nerves. Blessings to everyone today.

I'm here to learn, share and encourage others.


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2004SILVERADO's Photo 2004SILVERADO SparkPoints: (0)
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4/25/13 6:34 A

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Hi MJ
it sounds like you need to talk to your doctor about that problem. It doesn't sound like neuropathy to me


Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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MJLUVSANIMALS's Photo MJLUVSANIMALS SparkPoints: (135,070)
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4/24/13 12:02 P

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Hi team, I am MJ

Thinking it was 26 years of improper foot wear. I really never had the support I needed, and my job was walking a floor, rarely ever sitting. And that floor was solid cement.
But then I saw different people discussing Neuropathy, which I knew nothing about, and started thinking "Could I have it"? Actually not sure of the symptoms, most people say it's pins and needles feelings, and numbness. I still have sensation in my feet, they just feel a little stiff, I mean I can still move them, but more than anything it's a bit annoying. I do get this jolt of pain in my left foot to the big toe. I did have a sciatic episode last September (first time) it just took me down, I could barely move, and I am thinking is this part of that? They say that it could be. I still have occasional pain in my back, but nothing like the initial pain I experienced.

Edited by: MJLUVSANIMALS at: 4/24/2013 (12:02)
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2004SILVERADO's Photo 2004SILVERADO SparkPoints: (0)
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4/22/13 2:26 P

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Hrei GIAROSE welcome to the team
We are glad you joined us
I don't think I could do without my meds
Come join in on the other threads

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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CD11202870 Posts: 127
4/22/13 10:48 A

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Hi everyone, I've been living with Idiopathic neuropathy (PIN) for about 10 years. I've had all kinds of tests, and the result is small fiber neuropathy. The doctor told me it's called idiopathic because the idiot doctors don't know what causes it or how to cure it...ah huh!

It is mostly in my feet, and has slowly gotten worse over the years. So far, I am trying to live with the pain and the burning in my toes without the help of medication. I can only wear sandals most of the time. Sometimes it feels my feet just don't want to go in the same direction as the rest of me.

At night when the burning is at it's worse, I use a topical lotion with some peppermint oil added. That is enough to be able to get to sleep.

We just have to keep on keepin' on! emoticon emoticon

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4/21/13 11:20 P

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Welcome to the team
I wish I could help. It sounds very challenging. Do you have knee braces? What about physical therapy?
Good luck and keep us updated

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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2BEBARBAGAIN's Photo 2BEBARBAGAIN Posts: 10
4/21/13 9:18 P

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Hello, everyone. I live in the Midwest and have had a gradual increase not only in neuropathy (they diagnose it as axonal sensorimotor peripheral neuropathy) but increasing muscle loss. Without leg braces, it's getting hard to walk. Has anyone dealt with this and overcome it well? I guess first on the list is eliminating any sugar from my diet. And I'm learning how to use a juicer. Only 90 lbs to go! Love reading your entries. They're encouraging. Thanks so much. emoticon

I'm here to learn, share and encourage others.


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2004SILVERADO's Photo 2004SILVERADO SparkPoints: (0)
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3/27/13 9:45 A

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Hi Renie,
emoticon to the team! I already know you from another team emoticon and am glad you joined us.
I understand how your legs/ feet and arm/ hand feel, I have the same problems. Not the stomach ailments though. Isn't there anything to take to help you digest the food faster?
I do hope you will post with us often. We have a couple of threads you might enjoy. If you just want to blow off steam, check out the 'Venting' thread. 'Spring Chat' is where you just talk, and we would love it if you posted in 'Getting to Know You'
Fingers starting to tingle.
Again welcome aboard.

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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RENIESSPARKIN's Photo RENIESSPARKIN Posts: 9,153
3/26/13 9:49 P

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Hi, Team. I'm Renie and I have diabetes, neuropathy of the legs, stomach (Diabetic Gastroparesis), and left arm. Right now I'm trying to deal with the Gastroparesis. The food doesn't go fast enough through my stomach and digestive tract, so my blood sugar goes high and stays there. I've been told to drink a lot of water while eating to help the food go thru. It seems to help, but I'm still having to wait hours before the food digests and goes through. I've had some days when my blood sugar was 431 and then dropped to 40 within 3 hours. Not fun.

Anyone else having to deal with this?

I find that my legs and feet are cold when I go to bed and they hurt like crazy. But if I lightly massage them to warm them up, it does help. However, if you're like me, after a few hours, my feet and legs are too warm. Some folks are never happy. :D

As for my arm, it makes it great to get shots in my left arm because I can't feel 'em. However, the pain goes down the outside of my arm and into my pinkie and ring finger. So, if I do a lot of typing, they sort of freeze up and ache.

Talk to you all later,
Renie

Irene
Leader~I_Need_Sleep
Leader~Living_with_Neuropathy
Leader~Living_with_Gastroparesis
was-Leader~RLS/Wilks_Ekbom_Disease but everyone got "Restless" and left! :D


Good food, good sleep, good friends create a Spark for Life!

I've lost 45 lbs since the pix below with daughter & g'sons was taken.

Let's all have fun and encourage others while getting healthy!!


 current weight: 180.4 
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SWEETBELLA1 Posts: 16
2/20/13 8:29 A

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Thanks for responding 2004Silverado. I have done some research online and the reviews are mixed. For every positive review there were probably at least 2 negative reviews. I will see my PCP tomorrow for a referral for a second opinion. I am trying to avoid surgery as my body does not respond well to any type of invasion. I'll keep you posted.

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2004SILVERADO's Photo 2004SILVERADO SparkPoints: (0)
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2/19/13 6:49 P

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Hi & WELCOME to the team,
I have read just a little about it online, but not in any detail. I would suggest looking it up. And finding all the information that you can before having it done.

If you do have it done, let us know how it works:)

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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SWEETBELLA1 Posts: 16
2/19/13 12:33 P

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Hi, I am new to this team. I have been dealing with neuropathy in my left foot for about 9 months. The problem was caused by a herniated disk pressing on the nerve. Surgery was done to release the pressure on the nerve and the pain has really increased. I cannot take many of the newer medications for pain and also have reactions to steroid injections. I have had some nerve block procedures that were unsuccessful and now the doctor is wanting to implant a nerve stimulator to reduce the pain. Is anyone familiar with this procedure. Any information would be welcome.

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1/5/13 9:21 A

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Hi Susan,
Yes I have the same, its called hypersensativity. For me, when it strikes all i can do is remove any article of clothing, bedding etc and hope it settles down. Rubbing the skin makes mine even worse so i cant even try your baby lotion idea. my meds don't do any thing for this part of my pain either.
I wish you luck with it and hope the baby lotion carries on working.
Sonic

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12/27/12 6:39 P

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Hello Susan,
I have that same sensation at times. I use cold water or lotion.

I hope your meds keep helping and you find what works best on the burning feeling.

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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12/27/12 5:49 P

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Hello everyone, my name is Susan, I am 55 years old and feel like I am 95 most of the time. I have lived with chronic pain since a work accident that occurred when I was 21 years old. I now have neuropathy in my feet and legs which the doctors tell me is partly due to my back injury but also partly due to diabetes. My feet and legs ache, I get tingly sensations and little pinches in certain areas of my legs and feet. Cramping, sharp stabbing pains. You name it, I get it. What drives me the craziest though is the pain on the surface of my skin. Along my shins I get this sunburn sensation. It feels just like the uncomfortable burning feel like you have when you get a sunburn. My pain meds, currently tramadol and gabapentin, don't help with this at all. The only thing that relieves it is rubbing lotion on it. I have tried several different types of lotions and the one that seems to work the best is, believe it or not, Baby Magic's Lavendar and Chamomile Calming lotion. Has anyone else had this type of pain? Is there anything else I can do to help it? I hate trying new drugs, I take enough as it is and the pain meds I am currently on do help with the other body pains. But I am open to any thing to relieve the burning. Thanks.

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11/29/12 12:31 P

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emoticon to the team. Glad to meet you. Sadly enough, the damage is here to stay. But I hope you find relief from the pain.

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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MUSHIRA's Photo MUSHIRA Posts: 205
11/29/12 10:21 A

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Good day fellow Spark People. I am new to this group. I have persistent neuropathy both both legs (confirmed by nerve conductive test) and left hand, the neuropathy attacking my body does not seem to be related to my pre-diabetic condition, instead the doctors believe it is related to L4, L5 vertebra which are "out of whack". So I went to physical therapy for it recently. The physical therapy group was a joy. I completely went with the program for 12 weeks. My back felt greatly improved, It's just good to associate but the neuropathy remains. It is going to fell good to have relationships here on Sparkpeople with the people I have so much in common. Namaste

The only constant in life is change.


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11/15/12 10:32 A

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Welcome to the team.
I know how you feel, I have it in the same places. Hope you find some relief!

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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CD13266454 Posts: 122
11/15/12 10:04 A

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hi im new and have it in my hands and feet

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11/8/12 3:51 P

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Hi Debbie.

Welcome to the team. I am glad that you found some relief from the burning pain.

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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DEBBIERNSRMC's Photo DEBBIERNSRMC Posts: 462
11/8/12 2:55 P

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Hello there. My name is Debbie. I am 40 years old and i have been living with neuropathy for the past 5 to 6 years. My problem stems from a car accident. I was driving and was rear ended. I hit my knees on the dash board and had nerve damage to both knees. I have had many things done in an attempt to resolve my pain. but in the end it was determined that i have nueropathy to both. At one time i would sit at my desk and my legs would hurt so badly. I felt like i was sitting next to a bon fire too close. it was quite awful. I finally was able to be seen by pain management and started on nuerontin. After many tries with medications, insurance issues, i was put on elavil and cymbalta. It doesnt completely relieve the pain, (i have arthritis as well) but the burning and misery is gone. Its so much better. If i had to go back to the days before, i am not sure i would make it. I am so thankful for the medication that keeps me mobile and gives me peace... I look forward to talking and meeting people with similiar concerns.

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POSUNLMT's Photo POSUNLMT Posts: 21
6/17/12 5:08 P

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I am relatively new to neuropathy, but I would request a consult with a Pain Specialist. That is where I was diagnosed with RSD (Reflex Sympathetic Dystrophy) also know as CRPS (Complex Regional Pain Syndrome). I had never heard of either of these before October of 2011. My primary doctor just kept saying "It can't hurt that much), the pain specialist diagnosed it in the first visit. I would suggest to look up RSD and CRPS and see if it sounds familiar.
Good luck.

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Finding this team (especially today) is a God send. I have finally found others who know how I feel.

Today the pain is especially bad, I decided to search groups, and as I typed in neuropathy, I hoped that there would be a search result.... and there was. {deep sigh of relief as I wipe away the tears}

I injured my elbow (at work) over a year ago, it was swollen and bruised. I went to my doctor and he told me it would hurt for a while. I kept going back and complaining. Went to physio until I wasn't allowed any more. Had an X-ray, a few months later a EMG and a few months after that a bone scan. My constant complaints to the Dr. remained the same, my elbow hurts, my fingers are numb. A few months ago I was started on different meds trying to find the one that may help with the pain, I one I'm still on has had the least amount of side effects except for weight gain. Now I'm waiting for a Sports Med Dr to see me. I had been taking OTC NSAIDS daily, but they caused me to have chronic headaches- like a headache every day, lasting for over a month at one point...And the pain in the elbow/arm/hand wasn't even dissipating.

A great side effect of the current Rx is weight gain, so I have had a moderate weight gain since starting it (about 15lbs ontop of the other 30 pounds I really should lose), which I am trying to lose (with only a small amount of success) and I have almost constant pain, aching or numbness in my elbow, forearm and fingers.

I need a specialist to refer me for a MRI (enter Sports Med Dr) so that the cause of the pain can (fingers crossed, please, please,pleasepleasepleasepleaseplease) be identified. [I have text book symptoms of Ulnar nerve compression.]

I walk for weight loss (or at least for physical activity if the weight isn't going to budge) and do only a few of the strength exercises as I can't do push ups planks ect.... for obvious reasons, some of the exercises I can modify to not use my injured arm, that is very few of all of them. I also pedal on my recumbent bike when the weather is bad or if my two walks a day aren't meeting my calorie burn goal.


I am hoping for others that can share with me what has worked what hasn't helped and what they have done to keep their spirits up.

Just like POSUNLMT, sorry for rambling on, but I am really happy to have found this team.

Edited by: CD12378167 at: 6/14/2012 (14:09)
POSUNLMT's Photo POSUNLMT Posts: 21
6/11/12 9:25 P

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It was good to hear from you. I also am too young to have mobility issues (I am 44).
I have had knee pain off and on since highschool, I hyperextednded my left knee while skiing. I have been able to do ok all these years by using the other leg more. My right leg is the one with the RSD so I can no longer baby my left knee.

I do not have severe balance issues yet. I am not as steady getting in and out of the boat as I used to be. I don't let that stop me. I spent half of yesterday fishing with my husband of 22 years. However, we have had to stop going many of the places where the going is tough for me. We have just started to find new places to fish and to try using a boat in the nearby river. We have gotten to some new spots this way.

Today I pushed the lawn mower around the yard for about 75 min. ( I will probably regret this.) It is painful when stuff hits my leg, but otherwise it seems good to be able to do it. The lawn is not done yet, maybe I can do more tomorrow. My husband could get it all done in about 1 hour. So I'm slow - I don't care. I am lucky the horse didn't kill me.

My family has adjusted to my decreased speed. When we go to a store, they have gotten good at going slow and also waiting for me to catch up. I used to say "slow down so I don't look so dumb". Sometimes, when my leg is sore or tired I stagger a little or drag my foot. I don't care if I look dumb- but I do think I look drunk sometimes. My family and friends so I don't, but I think they are being nice. I can hear me steps being weird.

Sorry to be rambling-- I have needed someone who understands to tell all this to. Be thankful for all you can do and look for new ways to do old things. We are lucky to be alive.

Good luck with your diet plans this week.

Annette

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LAFAY1977's Photo LAFAY1977 Posts: 201
6/10/12 12:19 A

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Posunlmt, in October I learned that I have a harniated (sp?) disk and a bulging disk. If thats not enough I learned in March that I have neuropathy. Although my back bothers me from time to time. the purpose of all of the testing was because I wanted to know why my limbs were numb. This week my symptoms got worse which is why I started looking for support groups. It stinks when you can't move the way you want too. Especially when you are use to pushing your body to the point of no return. It doesn't help that I am only 35. If one more person says I'm too young to move the way I do I will scream. Nah actually I'm going to tell them I have neuropathy. I don't care if they are a stranger. People will continue to say things out of ignorance if we don't educate them. I am also on a mission to find work outs that I can do.

Any who it seems like we both want to loose about 60 lbs. We can encourage each other along the way. My goals for next week is to try yoga and to complete a whole aquatics class. I am also goin to try to do some laundry. I know it sounds simple but my balance stinks and the washer and dryer are in the basement. I also want to eat on plan at least 5 days this week. If I can do that. That will be awesome.

Well, I'm looking forward to getting to know you.

http://www.beachbodycoach.com/breakingplat
eaus

www.facebook.com/lafay1977



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POSUNLMT's Photo POSUNLMT Posts: 21
6/9/12 1:36 P

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I also do not have diabetis, but did have an injury. On March 19, 2011 horse fell over on me and crushed my right thigh. No bones were broken. As the swelling decreased, the neuropathy began. My primary physician kept saying "It can't hurt that bad." She finally sent me to a pain specialist in October. I was diagnosed with RSD. Light touch is painful. I have found that if I wear legging-tights under my pants I am not as painful because it stops the gentle brushing against my leg.

Which of your limbs are effected? What is your diagnosis other than neuropathy?
Since we both have a relatively new diagnosis- maybe we can help each other.

Edited by: POSUNLMT at: 6/11/2012 (20:47)
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POSUNLMT's Photo POSUNLMT Posts: 21
6/9/12 1:25 P

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My RSD is not to the same degree as many members. I am to walk, but sometimes with a limp or a slight dragging of my foot. My pain is somewhat under control with lumbar sympathetic blocks and medication. Mostly I feel like I am being stung by wasps. I have at times felt like my leg was wrapped in an electric fence. I am not able to kneel on anything (even the bed is painful). This makes my job as a Licensed Veterinary Technician difficult - I can't kneel in lower cages while caring for pets. I have had to give up going to Curves as it was aggravating my condition. On the positive side I can sometimes be used as a weather device. I know when it is going to rain. (Currently where I live has been stuck in rain every day for the last week.)27

Edited by: POSUNLMT at: 6/9/2012 (13:27)
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LAFAY1977's Photo LAFAY1977 Posts: 201
6/8/12 2:37 P

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Hello! I am Lafay and I just found out three months ago that I have neuropathy. I do not have diabetes nor was I in an acident. I tend to be very active. I love spin and bootcamp classes but I am no longer able to do those activities without pain. The meds the doc has given do not work. I was on lyrica and something that began with a letter n. They both made me worse. This time when I stopped taking the lyrica my condition stayed at that point. I'll see my neurologist today so maybe he can calm my nerves. I feel like my body is shutting down on me.

I decided to find a SP on my condition because no one understands. People always say I am too young or why am I moving like this. I am starting to gain weight since am not able to do my same aerobic activities. I had lost 50 lbs but gained 10 back. My goal is to loose 100 lbs. I am glad I found a team that will understand what I am going through.

http://www.beachbodycoach.com/breakingplat
eaus

www.facebook.com/lafay1977



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6/1/12 1:22 P

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Hi POSUNLMT! Its nice to meet you. I'm glad you have returned to Spark People and found this team. We are a supportive and encouraging group. I would be thrilled if you could join in our Chat thread. I'm getting ready to turn from Spring to Summer Chat so watch for it.

I just recently was talking to a friend with RSD and was pleased to discover that hers is now reversing itself after many years. She is once again gaining her ability to walk. I hope your condition is such that you have some mobility.

As you ask about exercise opportunities, I suggest you look up The Chair Exercise Team. We have an awesome leader and a zillion resources for those of us with limitations. Additionally, SP has recently begun a Mobility Limited resource page. Coach Nicole does a few chair exercises there too.

Come back soon and post often. Lest you have forgotten, that is the way to glean the most opportunity from this online support. I look forward to getting to know you better.

vicki

vicki

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Some mistakes are too much fun to make only once. -Anonymous

If life is a bowl of cherries, what am I doing here in the pits? -Erma Bombeck


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POSUNLMT's Photo POSUNLMT Posts: 21
5/31/12 8:54 P

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Hi, I have been away from sparkpeople for a couple of years. I just started back up, but with a whole new me. I have RSD (Reflex Sympathetic Dystrophy). Mine was caused by an injury-- On March 19, 2011 I was training my sister's horse. The horse slipped in the mud, bucked and went over backward landing ontop of me. The saddle horn and prommel pressed into my right thigh as the horse rolled off of me. I was removed from the mud by a wonderful volunteer ambulance crew. My leg was not broken, but the muscles of my thigh were crushed. I developed "Crush Syndrome". My leg swelled to the point I was sure the skin would split open. I began to have burning-electrical sensations as the swelling decreased. i was finally diagnosed with RSD as of October 2011. I have since been on an assortment of meds and have had 5 sympathetic nerve blocks. I think I have finally come to terms with it, but would love a support group. I also need to learn how to exercise-- I have been medically suspended from my Curves membership. (Strengh training has worsened my leg.) I look forward to the team!

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5/29/12 11:50 P

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Thank y'all for the warm welcome. NSAIDS just barely help. I tried something weird last night. I put lidocaine on a cotton ball and rubbed my feet down with it. It helped alot.I will have to check and see if it messes with any of my meds.

I will check in on the chat topics tomorrow. I am running behind today, I look forward to being a member of the team.

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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5/28/12 6:07 P

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Hi Kathy - sorry to hear you've been diagnosed with Peripheral Neuropathy. I know from experience just how uncomfortable it can be. I had succeess with ibuprofen before the pain meds became necessary. In fact, to this day I try ibuprofen and sometimes it helps before things get too bad.

Best of luck. Welcome to our Team. Come back soon and visit often. We are here for each other and depend on team members to participate on the chat threads.

vicki

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Some mistakes are too much fun to make only once. -Anonymous

If life is a bowl of cherries, what am I doing here in the pits? -Erma Bombeck


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STUDLEEJOE's Photo STUDLEEJOE Posts: 3,883
5/28/12 5:29 P

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Hi Kathy, I have found ibuprofin to help.

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5/28/12 2:41 P

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Hi !
I am Kathy. I was recently diagnosed with peripheral neuropathy brought on by hypothyroidism and a B-12 deficiency. My Dr. said he would start me on meds when the pain got to be too much. It is about to that point. But, from what I read, the usual treatment is antidepressants and they interfere with my thyroid meds. Anybody know of any inexpensive, readily available alternatives?
I look forward to getting to know y'all.

Kathy
A child of God.

Start date: 10-01-2011
1st goal: lose 25 pounds, met on 02-20-2013
2nd goal: lose 15 pounds, met on 11-08-2013
3rd goal: lose 5 pounds, met on 12-23-2013
4th goal: lose 5 pounds, met on 02-02-2014


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CD12231153 Posts: 60
4/25/12 4:59 P

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thanks everyone emoticon

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4/24/12 11:53 P

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Welcome to the team Cyndi. Glad to have you with us.

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4/24/12 7:25 P

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Hi Cyndi - happy to meet you and have you join us on this journey. If you will go to the Team Page, you'll find several articals regarding our condition and in particular a couple on pain. As you might imagine, your dr is always your best source of information regarding how to overcome the pain.

I have a couple of pair of 'granny' shoes I found online. Brands I find wonderfully comfortable and supportive: Mushrooms and Dr Scholes. The comfort is worth the appearance. lol

Come back soon and post often. Would love to see you on our Spring Chat. I'll be watching for you there.

We are here for you...encouragement and support are what we make every effort to share.

Look forward to getting to know you better. Take a look at my Spark Page to get to know a bit more about me.

vicki

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Some mistakes are too much fun to make only once. -Anonymous

If life is a bowl of cherries, what am I doing here in the pits? -Erma Bombeck


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CD12231153 Posts: 60
4/24/12 3:12 P

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hi i am cyndi so glad you all are here im 56 married have 2 children and 2 grandchildren, what has helped you all with the pain, and what kinda shoes are the best thank you emoticon

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4/7/12 5:55 P

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Welcome to the Living with Neuropathy Team, Janet So glad you chose to become a part of this group. We are notorious for giving support and encouragement, so come anytime you wish and expect friendship.

I am sorry to hear of your balance issues. I also have major balance issues and have finally been reduced to using a walker all the time. The important thing is we can still get around. That beats the heck out of being totally immobilized or bedridden. Together we will fight this disease.

Come back soon and post often. There's usually someone around to answer any questions.

vicki

vicki

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Some mistakes are too much fun to make only once. -Anonymous

If life is a bowl of cherries, what am I doing here in the pits? -Erma Bombeck


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STUDLEEJOE's Photo STUDLEEJOE Posts: 3,883
4/6/12 5:28 P

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Welcome Janet, it is good to have you with us. Good luck with all your balance issues. We are all in this together

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SMIDGON's Photo SMIDGON Posts: 5,549
4/6/12 1:21 P

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Hello--I am Janet and I have Heritary Neuropathy.
I am able to trace it back 3 generations for sure. I affects mainly my balance. As did for my Dad' Grandfather [paternal]; and Great Grandmother [paternal].
My GGM ended up bedfast. My Dad and GF both used canes, GF full time, Dad at times. I am considered handicapped from it, and, have to use a cane part-time.
I have ordered a book that has balance articles in it.
Hoping I'll be able to improve.

Have a HAPPY EASTER!



"All things work together for the good of those who love the Lord, and are called according to His purpose."

Romans 8:28

~+~ Janet


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STUDLEEJOE's Photo STUDLEEJOE Posts: 3,883
3/19/12 10:22 A

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Welcome to the group. Looking forward to your chat.

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3/19/12 3:33 A

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HELLLOOO OUT THERE! ANYBODY WANT TO GET ACTIVE ON THE NEUROPATHY TEAM? We need to come together to make it happen. I know there is support available for a lot of us as we discover new friends experiencing the same symptoms.

Look on the Team Page for the DAILY SIGN IN. I'm starting a SPRING CHAT ROOM today also and hope that will give us adequate opportunities to join together. Hopefully, in looking through the articles we have many of you will find answers to some of your questions. At best perhaps you'll find some ideas to discuss with your dr.

I look forward to seeing y'all on the Daily Check In and in the Spring Chat Room! Wishing all a day of comfort and friendship....

vicki




vicki

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Some mistakes are too much fun to make only once. -Anonymous

If life is a bowl of cherries, what am I doing here in the pits? -Erma Bombeck


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STUDLEEJOE's Photo STUDLEEJOE Posts: 3,883
3/13/12 4:07 P

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Welcome to the group


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SUNNYSHINE-'s Photo SUNNYSHINE- Posts: 759
3/13/12 12:39 A

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Hello all...I have symptoms of meralgia paresthetica (but EMG/NCS testing showed "no evidence of meralgia paresthetica") so I guess I'll just say I have non-diabetic neuropathy of some sort. I am hoping that my first visit to the acupuncturist tomorrow will provide some relief of my pain, burning, and numbness. I am not currently on any medications and not doing any formal physical therapy so I can cleanly and clearly see what sort of benefit the acupunture itself has in store.

Starting Weight: 310 pounds

"When nothing seems to help, I go and look at a stone cutter hammering away at his rock perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that blow that did it--but all that had gone before."

~*Jacob Riis*~


 current weight: 260.5 
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STUDLEEJOE's Photo STUDLEEJOE Posts: 3,883
3/11/12 1:55 P

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Thanks for the welcome. Yes the Charcot only effects my feet. Do to the Neuropathy I cannot feel anything below my knees. It is just part of my life, can't worry about it.

 Pounds lost: 100.0 
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DEADEND-DREAMER's Photo DEADEND-DREAMER Posts: 1,972
3/10/12 2:32 P

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emoticon Welcome Steve!

I had to look up Charcot. Do you have it just in your feet? Sounds like a miserable thing to have. My daughter has degeneration of the bone in her knees. Hope you're having a great weekend anyway:)



~Dianna in WA is running to the light!

Challenged with fibromyalgia, diabetes T2, Myofascial pain syndrome, Osteo-Arthritis, chronic bursitis, glaucoma and severe dry eyes.

Medication reduced to 1 - 500mg tablet of metformin daily.

Love my grand baby!

"Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead." ~Louisa May Alcott



 current weight: 135.0 
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