HELP - Struggling With Peripheral Neuropathy

NittanyLion
on 2/18/19 8:56 am

Good Morning. I was a active participant in 2005-2007. In total I have lost 177 Lbs. But it wasn't easy as many of you can attest.

In 2010 I had to have my gallbladder removed so for the newbies - don't be surprised if this happens to you. Just don't put off going to your surgeon like I did. It almost ruptured and I became septic.

I'm back to ask for help and see if there is anyone who has been out at least 10 years keeping the weight off. The past 2 years I have been going through lots of dr appointments trying to figure out why I have lost the ability to walk farther than 40 feet and loosing muscle strength in my legs.

My Internal Medicine Dr and I have been doing lots of research to figure what's going on. I had my surgery when I was 50. Now I'm going to be 63. At first we thought it was related to my age but after the research it appears that Long term malnutrition is linked to peripheral neuropathy - which in the long run goes back to my surgery.

Tons of blood work has been done and tomorrow I'll find out the results of the 8 tubes they took from me on Saturday. I have not been able to work since 1/14/2019 and that was the last time I received a paycheck and I've blown through my savings. I've filled my income tax return and I'm waiting for my return to be deposited in the next few weeks. Until then I only have $43 to my name.

i single and alone so life pretty much sucks. The next test is an EMG which I am really dreading I'm also having balance issues associated with this and it makes it twice as bad. I've had 3 really bad falls resulting in 3 concussions.

Anyway. If anyone has any experience with peripheral neuropathy I would greatly appreciate any information you can share.

Thank you so much for taking the time to read my sad story LOL. Laughing through tears

Kathy S.
on 2/18/19 9:56 am - InTheBurbs, XX
RNY on 08/29/04 with

I normally say welcome back but not for the reasons you posted. We are so sorry for all you are going through. If you have not done so can you go see a bariatric surgeon? Or someone in the field that may have some experience with these issues? I normally post a lists of things to do for getting back on track and back to the basics. Sounds like you may have some other things going on other than making bad choices. Here is my list for what it's worth and know we are here for you and want the best for you


Planning/Preparing

Remember when we were preparing for surgery? How many meetings, classes and such did we attend? We were told the more prepared we were the better our chances were for success. And they were right. Go through the house, car and work place and get rid of trigger foods. Stock up on foods that will keep you on track. I removed every bad carb/sugar temptation and replaced it with lots of protein, veggies, grains and fruits.

Journaling

Get back to journaling. This will help you identify when you feel like eating, stress factors and any triggers in your life. Once you identify these factors, this will help you put tools in place to keep you from eating. It became clear I was not taking time for me anymore. I worked my day job and then spent the rest of my time caring for my husband. It was easy to reach for fast, prepackaged food. Since I purged my home I have to eat clean as there are no other options LOL

Use a tool to track you're eating and exercise like Getting Started with Health Tracker. Once I started to track ever bite and drink it became clear why I had gained.

Goals/Rewards

Make a list of goals for yourself. Make them realistic and small. Some of mine were move more, purge all junk from my home, eat more protein. If you didn't make a Weight Loss Surgery bucket list when you first had surgery do it now. GREAT reminder of all the things you can enjoy in life after losing weight.

Food

In general, a long term post-weight loss surgery eating plan includes foods that are high in protein, and low in fat?, calories, and sugar. Important, vitamins and minerals are provided as supplements. (if you had a different surgery adjust this to your food plan).

Water

Water is our Best Friend. I have to say I never went back to pop or any bad drinks, however I was drinking tea like crazy. What is wrong with drinking tea? I was either using sugar or 3 equals and 3 sweet n lows per 32 ounce glass. I found once I started carrying one of the metal bottles of water to keep it cold I drank water all day.

MOVE!

I can't say enough about how key this was for me. The reason I kept my weight off for almost 10 years was no matter what, I kept moving. If I could not go to the gym I would walk. Grab a cart and walk all the isles at your local box store. I loved Zumba, bootcamp workouts, lifting weights. When I stopped, the weight started coming back. So for me I am starting slow to avoid injury by walking and using some of the workouts on my Demand TV. Find something you love to do and it won't feel like a pain in the *** to do daily.

Support

If it's an option "run" don't walk to a support group. Come here on OH daily for support and participate in one of the food threads. It helps you be accountable and also great ideas for food prep.

Keep me posted on how you are doing.

HW:330 - GW:150 - MW:118-125

RW:190 - CW:130

NittanyLion
on 2/18/19 10:28 am

Kathy.

Thank you so much for the warm welcome.

Yeah I've been back to my surgeon's practice. I'm not sure what it says but I'm their most successful patient and they have not had any experience with their other patient's keeping the weight off. I'm also one of their first patients and they have not had experience with long term patients getting to goal weight. The county I live in is the most obese in the state. Of all the people who were in my monthly counseling sessions before surgery I'm the only one who has met goal and kept the weight off all these years

Also I know stress can be a factor in Peripheral Neuropathy and I lost my son (8 yrs in the Corps) and served in Iraq) in October to self inflicted gun shot wound. My grief counselor has been great but she's clueless about gastric bypass surgery and long term effects.

Well Ill keep you updated on the results of the blood work tomorrow.

Pammy

PS I love your list. I wish they had that available when I had my surgery. It was trial and error until I got my footing and got into my groove and everything has been great until 2 years ago when these symptoms started.

Amy R.
on 2/20/19 9:48 am

I'm just so sorry for your heartbreaking loss. Intense grief can manifest physically in all sorts of ways as I'm sure you already know.

As for the EMT, have you had one before? They can be a bit painful but I had no problems whatsoever during mine. And it really helped the docs isolate the areas and causes of my constant pain.

Hoping things get better for you and that you get some more feedback here in OH.

Kathy S.
on 2/25/19 6:13 am - InTheBurbs, XX
RNY on 08/29/04 with

I am lucky that I have not experienced Peripheral Neuropathy and can't advise or suggest but my husband suffered from it with diabetes. I hope you get the help you need soon as it was a challenge daily for him.

You are welcome on the list, I know you were not looking to get back on track but wanted to share with you what has kept me from going back to 330 and maybe some of them can help you when you get work through your pain.

I have never lost a child (lost my husband of 49 years in 2015) but have a close friend that lost her daughter and there are no words for the pain... There is stress eating and then there is getting through the day. I am so thankful you are getting help to deal with your loss. PM me anytime and we all are here for you

HW:330 - GW:150 - MW:118-125

RW:190 - CW:130

Karil G.
on 2/23/19 11:30 am - IL
IamevilHomer
on 2/18/19 4:04 pm
VSG on 06/01/16

Have they checked your vitamin B12 levels? Low B12 can cause peripheral neuropathy symptoms. Hope you get some answers soon.

Mary Gee
on 2/18/19 4:21 pm - AZ
VSG on 05/14/14

Hi. I have peripheral neuropathy too. My symptoms appeared before surgery. I've been on Gabapentin, which never really helped.

I was obese for years but still considered myself "healthy" -- despite back pain and shortness of breathe. Then it seems like one day "Boom!" I started having problems with my legs/feet. First diagnosis was Achilles tendinitis. Put into casts, first right leg, then left. No relief. Then I had issues when standing up. I would stand and have to wait for feeling/circulation to return before I could take a step. I had trouble lifting my leg. To turn away from desk, I would have to shuffle my feet, first slide my toes to the right, then the heels, then the toes, etc. I would often catch my toes when walking and stumble.

I was very fortunate to have disability thru work. I ended up on Social Security Disability. Perhaps you should look into that. I was approved on my first round...no appeal necessary. I don't know where you live, but in some states (Massachusetts, for example) you can go on "Welfare" while your SS application is pending. You need a doctor's note for it.

After I lost a lot of weight, my symptoms lessened. I still have leg weakness and balance issues. I also experienced tingling/pins and needles. Just today I had a nerve block and the tingling, etc. disappeared. I'll be getting an ablation within a week or two. Weird not to have the tingling sensation after so many years of it.

I've written a book. Don't know if it's helpful. Hope things get better for you.

       

 HW: 380 SW: 324 GW: 175  

 

 

 

 

 

 

 

Laura in Texas
on 2/18/19 6:26 pm

What are they testing for with only 8 vials? My normal annual bloodwork is around 15 vials. Have you taken your vitamins/supplements regularly over the past 13 years? Have you had your labs run yearly?

I hope your doctor can help you find some relief.

Laura in Texas

53 years old; 5'7" tall; HW: 339 (BMI=53); GW: 140 CW: 170 (BMI=27)

RNY: 09-17-08 Dr. Garth Davis

brachioplasty: 12-18-09 Dr. Wainwright; lbl/bl: 06-28-11 Dr. LoMonaco

"May your choices reflect your hopes and not your fears."

Cris1976
on 2/20/19 12:10 pm

Laura,

What exams do you do regularly?

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