It does look like my Neuropathy is from Gastric Bypass and lack of vitamins......
 

HI!
I know this past week several of you said my Neuropathy pain could be coming from lack of vitamins because of my Gastric Bypass. My husband and I have wondered about that but most of my tests came back ok......except for the Carnitine, Vit. D and B12.....which I've increased in the past 4 months since all this pain started.
Yesterday in the Science Daily newletter, it had an article about this very subject: http://www.sciencedaily.com/releases...0525210340.htm
It says that even after upping the dose of these vitamins and supplements the Neuropathy continues :(
I'm going to talk to my Rheumatologist about all this on Monday.....but today.....I'm totally depressed about the whole thing :(
I originally had Gastric Bypass because several dr.s said that having that done would help with my servere acid reflux (which caused my Barrett's Esophagus) Needless to say...it didn't help at all. I now sleep sitting up in an adjustable bed.
Since my Gastric Bypass I've had to deal with one health issue after another...tho I did lose weight and no longer have high blood pressure and the Osteo Arthritis in my knee is much better....it's hard to weigh the odds as to if it was worth all the bad results or not...........Roxie

I'm sorry for your suffering and the issue your in. I read that and may of missed the part where it said the neuropathy continues. I thought that it meant if diet is adequate and with proper vitamins it can help prevent further. I had a long history of anorexia and my pn may be from the result of that. I have been told that the combo of meds and continue nutrition can help make me functionable again. I think I will always have pn but it may not take over my life if that makes sense. I hope you get some answers from your doc. I have also been thinking for myself to look into holisitc if they can do a combo with meds so diet/nutrients can be addressed. My nutritionist now says that it can take awhile for the body to get stable again after depletion.Good luck and try to hold onto hope.

Awww, Roxie
 

Roxie,
I'm so sorry Sweetie. There are some ways to help with all of this. But be sure to let the rheumatologist know and take your husband with you. You are stressed and may not remember everything he tells you.

Liquid vitamins can help and switch to the correct form of B12.

Discuss all of this with your doctor of course. Wish I had more direct help for you.

We will be waiting to see what your doctor says.

Billye

This is very unfortunate....
 

I am totally vexed by the medical establishment in regards to bariatric surgery, and the aftermath. Why do doctors ignore the facts about nutrition following this surgery?

We had another poster a while back who developed severe neuropathies and ended up at Mayo. She stopped posting however. At that time she had severe autonomic effects. I had one patient also recently who developed autonomic fainting spells due to nerve damage controlling blood pressure. She had a bypass too and used liquid vitamins.

I would think at this point you should be getting aggressive injections of B12 for the time being. However, fixing calcium, folic acid, iron and zinc is not easy either. The nervous system can repair, but it is a very slow process..requiring patience.

I hope you can find a doctor to help. You might need a special holistic physician with experience in nutrition to see positive improvements.

Many docs know very little about nutrition I have found. I have always had to go to specialists and even when I work with a nutritionist I had to find one that specialised in my area. So I agree about the holistic or possibly a nutritionist who work with gastric bypass patients. In my recovery I had way different needs then the normal person and I'm sure your body is the same.

Wow, every time I watch the Discovery Health channel and I see the morbidly obese and they have had these various kinds of bariatric surgeries, they lose 200 lbs or so, they look like different people, and they all go "oh wow, I should have done this years ago". And then many of them have the second part (taking off excess skin). I personally know several people who have had this surgery.

My friend Diane had the first of these over 30 years ago when they first came out. She weighed over 500 lbs. When I next saw her she was down 200 and I could barely recognize her. She did not want to have the excess skin removed because she wanted to have children (and she was told that if she had a tummy tuck, she could not become pregnant. She eventually married, had a baby and gained back all the weight and then some.

I have a cousin John, and he and his girlfriend both had the operation. John lost 100 lbs. His girlfriend did not lose any. Now how can that be?? I asked him and he said "sometimes it doesn't work on everybody". Can this be true??

And Alan has a cousin who had this operation and he's been in and out of hospitals with complications ever since.

I guess when you are over 500 lbs this operation can be life saving, but no one tells you about after -effects such as neuropathy. I wouldn't wish that on anybody!!!

So Roxie, I hope things turn around for you. I really do. You sound like a sweetheart!!!

Melody

There is no excuse for that ignorance. Even most docs who don't know the first thing about recent decades of research regarding B12 know that gastric bypass or other digestive surgery is a cause of B12 malabsorption. Shame on them.

When the cause of nerve damage is removed, it is very common for at least some of that nerve damage to repair over time.

It takes time.

rose

I'm so sorry you're going through this Roxie. A relative of mine has a lifelong eating disorder, so I know the desperation you must have felt before getting the surgery, and your hopes that the surgery would give you a better future.

You can turn this around.

Besides vitamins (especially B12, B-complex, D, E, C), your nerves need minerals (especially calcium, magnesium, and potassium), protein and essential amino acids, and the correct fatty acids to heal.

It is impossible to recover from trauma, including the trauma of surgery and nerve damage without exercise. Pick something you enjoy, start slow, build up strength and endurance slowly, until you reach the equivalent of at least a half hour of moderate exercise a day. It can be broken up into three 10 minute sessions, six 5 minute sessions, etc. or all at once. Then continue that as long as you live.

Finally, reduce the stress and anxiety in your life. This will involve taking the long view ("In the end it's all small stuff"), the spiritual view, living for and giving to others, avoiding the negative and finding the positive, having fun and smelling the roses, and whatever else rings your bell.

You're sick now, and probably grief stricken and bitterly disappointed. But if you are bound and determined and persevere, you can and will turn your life around. What is the alternative?

We are all pulling for you here. Consider this, my first posting to you, a heartfelt hug.

Roxie,

The good news is they have found a likely cause for your neuropathy and they can treat this. They can, if they need to give vitamins IV, but, that is a last resort.

You may have to do some homework here and find out what you are malabsorbing, and how to best get it in your system. I would love to tell you the medical system is well prepared regarding nutrition, but they are not. I can't give you a reliable source for guidance, as your case is unique. That is the problem with many drugs out there as well as surgeries. Many drugs interfere with absorption of nutrients as well as surgeries.

Nutrition is one of the most ignored areas of western medicine.

Don't fret over what was, concentrate on what is and what is to be.

Good nutrition is a battle for me too, as I get bouts of gastroparesis, have hypoglycemic unawareness, and usually not a good appetite. It sounds like you need supplementation over and above the usual. If your stomach is the problem then they had better figure out what the right route is for absorption. Your doctors should be able to find you a resource or check the net for a good, reputable nutrition consult.

Then you need to make every calorie count for nutrition and that is hard...it is good juice instead of diet soda. It is veggie or fruit juice. It is a protein drink if I can't eat meat that day, or an egg. For me a multiple vit is still OK, plus a few other things I take, but, that may not apply to you. To feel half way decent, I have to put a lot of thought, work and energy into eating and exercise of some sort....and it is hard work. I envy people who whip up delicous food...I generally have to sit on a stool to cook, as standing up gets me hypotensive.

I am a big proponent of yogurt, lol.

When you make decisions regarding surgeries you do it with the info you have at the time. I am sure there are many things we all would not do again, and we can't cry over spilled milk;) ....I can tell you I would never have another selective spinal nerve root block...it totally botched up my spine....:mad: but it wasn't intended to do that, so, it is a consequence of a procedure meant to help.

Like David said, you need to make lifestyle changes and those are difficult to make, but they are doable. You may even be lucky enough to experience some healing and restoration of function if you feed those nerves and use them. You have an 'enemy' to fight, and a way to do it....go girl!

You just reminded me to make a trip to the kitchen for a healthy snack...thank you!

As the nerve endings become damaged, the brain scrambles to make sense of the goofy signals from the feet, legs, hands, face, or wherever the damage occurs. The brain finally settles on an interpretation of the signals as pain: aching pain, burning pain, stabbing pain, creepy crawly pain, electric pain, usually all of those.

Then the areas of the brain that get the signals from the damaged peripheral area and the main nerves that carries the signal to those areas of the brain become hypersensitive to any stimulation from the area. That is what neuropathic pain is; it starts in the feet or hands or wherever, but its even more so in the brain and main nerves to the brain.

Healing is a two step process. First, stop further damage to the peripheral nerve endings. Know that the damaged nerve endings will continue sending inappropriate signals until they heal, regrow, or die off (experienced as total numbness in the area).

Second, train the brain and main nerves to settle down. Anticonvulsant drugs help, but in themselves don't retrain the brain. They just put a partial lid on the hyper-sensitivity. To retrain the brain and main nerves, I know of only two things that work. Both are rhythmic, and impose order and proper function to what is chaotic. The first is exercise: walking (left right left right, etc.), swimming (up down up down, etc.) etc. The second is electro-stimulation with a pulsed micro-current, about 5-8 pulses/second. I've posted about this several times, including this week, so you can use the search function to find the postings.

Rox
 

Whew it''s so hard,and i'm sorry,but always look forward. You
sound like you have a loving and caring husband,take him with you
2 memories are better than one. You can do this,we are a pretty
tough group here and we are behind you,whether you want us or no. Sue

HI All......Thank you for all the encouragement and information about nerve damage. I'm going to start walking each day. I used to do that before I started feeling so bad. I take Lyrica for pain but it's not covering it well....and it's making me gain weight.....that's another thing that's really killing me!...besides the worry and depression.
My bariatric surgeon has a nutritionist that works with his patients and I have taken all the vitamins and had the blood work every 6 months as required after the surgery.....every thing has always looked good! I thought "I" was doing good! I had NO idea I was getting sicker and sicker each day......till this past Feb. when I started having the terrible aching and feeling like I had NO energy at all! I was trying to work each day (I work in a Special Education Life Skills classroom and it's a very demanding job!) and then I started missing 1 day a week because I just couldn't put one foot in front of the other!
Anyway.....now I have to get well......or at least feeling better so I'm better able to cope.
I've been going to counselor for the past month.....but after seeing her today I've decided not to see her any more. I might try a different counselor....I don't know at this point.
Thank you to everyone who posted today......it's SO nice to know that there's people out there who understands this pain and what I'm going through. I'll see my Rheumatologist on Monday ......with my husband who is SO great with all of this.......and I'll let y'all know what I find out! Roxie

Wow, you have a stressful job and it sounds like you are doing a lot to help yourself...

I am sure you can get the nutritional component corrected, but it is disappointing to think that it went on and wasn't caught sooner...

There is a study out that cycling of all things improved Parkinson's. It is on the Parkinson's forum. Now that is not for every one, as if your balance is impaired, you could take a digger...not to mention if you don't have a safe place to ride, I don't recommend it, plus it is fairly aerobic, unless you really know how to use gears and have a lightweight bike.

Walking and swimming are sure bets. Walking has the added benefit of weight bearing to prevent osteoporosis, where swimming has the benefit of weightlessness if you are injury prone....and start easy.

I live in an area where cycling is rather chic....even in winter...tried that when I was younger...it didn't work for me then and it will not work for me now...thing called black ice. It hurt 20 years ago. :eek: Now it could land me in a nursing home.

The other thing is you can make the exercise social...doing walks or rides for causes. You meet people and get lots of tee shirts...eventually you have lots of rags!!

One big thing is making sure your body doesn't have any postural issues...in otherwords, one leg shorter than the other, or 'falling arches' hyperpronation etc. Regardless how much you exercise, if you are not doing it right or need some correction, you will hurt yourself. I developed a tibial plateau fracture due to uncorrected hyperpronation prior to my diagnosis with PN....I had no idea I hyperpronated...I do now.

This is where a good physical therapist comes in....without orthotics I would be toast...and I need new ones, I can tell...that is not all I need new!:D

I tried cycling 4 yrs ago.....bought a great bike and rode around the neighborhood...I took a corner too closely (I was on the sidewalk at this point) and caught some gravel......slide and landed down a driveway right in front of car! Scared me to death and the poor driver of that car! LOL Since then my bike has been parked. Now I have OsteoArthritis in my knee so it doesn't bend well :( So I think I'll stick with the walking......tho we don't have a great walking area here in our neighborhood because of the way the houses are built. I wish I could find someone who wanted to walk with me.....it's always more fun to walk and talk.
As for my job.....yes it's very stressful. We had 11 kids in our room this past school year and 9 had Autism.....it's an epidemic! Hopefully when the scientists find a cure for PN they'll figure out Autism too! Roxie

No kidding it's demanding. I have multiple Special Education credentials in California, and taught middle school LH classes for years, then became a Resource Specialist. I got totally burned out after 14 years of teaching, and so got a BS in Computer Science and became a programmer for another 17 years.

My family urged me to go back to teaching when I quit programming, and "coast". Some teachers did that, and that was one of the reasons I changed careers. It turned me off so having to work with them.

Teaching, especially special needs children, was a somewhat holy calling to me. Kids need their teachers, look up to their teachers, and only feel physically and emotionally safe in a classroom with a dedicated teacher who works their butts off for them and their parents. If a teacher doesn't come home exhausted every evening, and isn't in a haze of fatigue come June (but never show it to their kids), they're not doing their job properly in my opinion.

Your statement that teaching is a "very demanding job!" says a lot of good things about your character. It's great for me to hear another educator say that. I hope and pray you can continue working with your students as long as you want to.

HI David!
Thank you. I do love working with the kids.....esp. the kids with Autism. They are a special breed....so to speak. I love them.....tho they are difficult at times but when you get them on 'your side' you have it made. They can be a lot of fun. Roxie

Oh Roxie,

Best stay off the bike. Maybe you can start a walking group?

(I won't tell you how many diggers I have taken. I have the scar from a shifter that hit my calf, back when the shifters were on the downtubes of bikes. I also went over my handlebars when mtn. biking. Oh and once my foot came out of my cleats, and got stuck in my back wheel..I did some races into my late 40's then I got sane.

Road rash is for healthier people than me now, altho, I assume due to my devotion to the sport, I will get more. Right now, my sacrum is too sore to sit on, so my bike is temporarily parked until they figure this problem out. I cringe when sitting down and cringe when standing up, and I am sitting on a heating pad.)

I walk on a bike trail...have to drive there to walk.

Does your school have a fitness center? Not as much fun as a walk outside but a treadmill can be a lifesaver.

A thunderstorm put the kabash on our solstice program at the archeological park near my house....I better get off this computer before I get zapped.:eek:

Roxie, I am so, so sorry to hear that this has happened to you. It is so hard to understand why nothing about this is brought out in the shows and articles that cover this type of surgery. The surgery is made to sound so easy... This really is terrible!

My neighbor had this done some time back and has lost quite a lot of weight. I am almost afraid to forward this article to her, for fear it will scare her to death. I have thought that maybe I might be healthier if I too had this surgery to lose some of my Prednisone weight. Think I will pass... I am having enough trouble...

I was wondering if your vitamins could be injectible, rather than IV as was mentioned above. I know some of the vitamins come in injectible form, but I don't know if all of the ones you need do...

I hope something can be done to help you in some manner.

My best,
Cathie

HI Cathie,
I am going to ask my Rheumatologist about what I need to do now to get well. I'm SO tired of feeling like this.
I'm sending this article to all of my friends who's had this surgery. They need to know that they need to increase their vitamins.....not just take the amounts the dr.s suggest....like I did!
It's not an easy surgery to recoup from but now finding out all these other issues that come with it......is just overwhelming! The worst part is I didn't have this surgery to lose weight! I did it to lessen the acid that was irritating my Barrett's Esophagus!.....and it didn't even do that!
I hope you are having a good evening........Roxie

Hi. I'm currently on the hunt for better meds and I wonder if Lyrica is not for you or maybe you need a combo? I'm really sorry again and you know I was thinking its such a hard call on issues like this or other problems where there are risks to trying to get better. Its switching one issue for another. I had recommend a book that I think may be helpful for you call nutrients for neuropathy . My friend I was inpatient with was thinking too of this surgery but feared many of the side effects and I could understand why and the more I hear too. On a side note are you able to eat actual food properly now? I don't know with the injections but I know that its very important to also fuel with food so that nutrients can absorb from supplments. I may be wrong but what I was told. Stay strong and I give you a lot of credit for working hard too.

Hi Roxie, this is a rotten thing to happen as a lot of us seem to put to much trust in the medical field but you can turn this right around in time in your favour.
I don't know much about injectable vitamins and minerals for nerve health but i do have shots of b12 [ Hydroxocobalamin ] that was ordered from my neuro and i continue to have them and what a differance it has made.
The cause of my PN was low B12 & Prediabetes, i had to fully change my eating and drinking habits and exercise, i couldn't walk for to long on a pavement because of my burning feet would kill me, so i went to the local swimming pool and just walked up and down the unused lane of the pool [non weight bearing ] i used to get there when they opened at 6.am, best time because one, its wasn't full of normal swimmers, two there were surprisingly quite a few others doing the same for all sorts of med problems and it helps talking to others as well.
I changed my diet to a healthy high fibre diet, stayed away from sugary carbs and stopped drinking alcohol [beer] as its full of sugar and the alcohol is a well known nerve irritant as well.
Now, i am fast fowarding this to these days, 4 years later.
No burning 98% of the time, no pain, prediabetes is gone, complete numb spots on my feet have regained feeling, i can wear leather shoes and boots no problem, everywere my neuro tests he gets a positive reactions, i feel alive again all day long and feel full of life, a complete opposite to what i was originally, when i struggled to make it to lunch time, so so tired all the time.
So if i can do this so can you, keep in mind whilst healing, flaring of symptoms is common but our bodies have got a remarkable ability to repair itself.
good luck
Brian :)