Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@dwilkin

Totally agree with this and I’ve had the same experience. Eliminating inflammatory foods – totally eliminating, has made a big difference. It takes a lot of discipline. No sugar, gluten, dairy. That also means no wine or store bought juice, processed foods, fast food, etc. it works!

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Makes such a big difference on how I feel and amounts of sugar I have consumed. Also if I have had less food as it gets close to going to sleep and lighter food I find I don’t burn, tingle feel like I’m being electrocuted as much.

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Hi Colleen, Thank you for letting me join the group. I already appreciate some of the article I read that came from John. Just trying to stay informed because I need to look out for myself. After a car accident in 2009 had surgery woke up and had erb’s palsy. Have more movement after physical therapy but has never regained strength and struggle to even hold a coffee mug. Because of the nerve damage I also have PN And really bad pain everywhere chronic pain, chronic, fatigue.
Doctor just checks and does normal things but pretty much told me find your new normal and except it. I’m trying and don’t want things not to get worst so I am listening and seeing what others have tried and what I tried and we all have to say.

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@mictim

Hi qball2019,

Your experience and information is good. I have used Miralax sometime ago and it somewhat worked. However, it is made with Peg3350 and totally a commercial/industrial chemical. I use Magnesium Citrate in an emergency and it works very well indeed. I found out to buy the most expensive brand as the taste is much better-to me anyway. Yes, take it cold! My view point is these two are good for a one time localized events.

PEG 3350 is a polymer that is too big to be absorbed by the intestine. PEG 3350 it temporally remains in the gut and holds water.
It should only be used on a temporary use. Phillip’s Milk of Magnesia (magnesium hydroxide, Bayer) or mineral oil my have a better safety profile. Mineral oil is not absorbed in the gut and works well. Never give Peg3350 to children as it may adverse events including neuropsychiatric symptoms with extreme long term use and it is totally not natural. We need to listen and gain knowledge from others and learn what is best to do for ourselves. Humm… lets see Natural vs Synthetic big Pharma.

This is way I shared with the group a more natural way that your body can get used to using. I really think that it is better to give our bodies something good to work with instead of one time event and something to react to thru force. It has taken many years for us to get here and one might consider to make simple steps to reverse our condition. Yes you are right that MC works well and that is good, thank you for sharing your experience as it is very valid. Everyone have a great day and eat more fruit!! MicTim

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@mictim

I absolutely agree with your view on natural vs synthetic and supporting big pharma. There are several shows on Netflix that everyone in the world really need watch. These include What The Health, Forks Over Knives, Cowspiracy, and a couple others (can't think of the titles right now but will look for them if anyone is interested) that shows how the healthcare system and big pharma work together all for the sake of the American dollar (not so much for helping patients). If everyone was more educated in these areas lives would change and disease and death tolls would plummet just to name a couple of the many changes we would see.

I am fairly new to the integrative/holistic approach as I found an integrative pain specialist that has her own personal experience with the Tarlov cysts that I have. I'm learning and slowly switching over as we find things that are helping me.

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@cocodab

Hi Colleen, Thank you for letting me join the group. I already appreciate some of the article I read that came from John. Just trying to stay informed because I need to look out for myself. After a car accident in 2009 had surgery woke up and had erb’s palsy. Have more movement after physical therapy but has never regained strength and struggle to even hold a coffee mug. Because of the nerve damage I also have PN And really bad pain everywhere chronic pain, chronic, fatigue.
Doctor just checks and does normal things but pretty much told me find your new normal and except it. I’m trying and don’t want things not to get worst so I am listening and seeing what others have tried and what I tried and we all have to say.

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@cocodab

You are not alone! There are many helpful people on here so you're in the right place! Sometimes it just feels good to chat with someone that is going through the same things you are. Here is my advice to you.

Your team of doctors will probably need to include a PCP that supports your issues and strives to find treatment for you, a pain management doctor, a neurologist, and a physical therapist. Integrative/holistic providers will do a world of wonders for you as well. You may also want to consider a mental health provider if your symptoms are causing depression or anxiety. Find a good physical therapist that is up to date on new procedures, and continues to take classes to learn more. The right one will help with the neuropathy & muscle pain. Also, maybe it's just time to look for a new doctor. Research them online and read their reviews. In my area I've found that the good ones are booked out a couple months but probably worth the wait. I'm currently looking for a neurologist. Ask all questions you have and don't settle for a doctor that ignores your concerns! You are your own best advocate! The more research you do, the more questions you ask, the more answers you'll get. Hang in there & take care!

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@qball2019

@cocodab

You are not alone! There are many helpful people on here so you're in the right place! Sometimes it just feels good to chat with someone that is going through the same things you are. Here is my advice to you.

Your team of doctors will probably need to include a PCP that supports your issues and strives to find treatment for you, a pain management doctor, a neurologist, and a physical therapist. Integrative/holistic providers will do a world of wonders for you as well. You may also want to consider a mental health provider if your symptoms are causing depression or anxiety. Find a good physical therapist that is up to date on new procedures, and continues to take classes to learn more. The right one will help with the neuropathy & muscle pain. Also, maybe it's just time to look for a new doctor. Research them online and read their reviews. In my area I've found that the good ones are booked out a couple months but probably worth the wait. I'm currently looking for a neurologist. Ask all questions you have and don't settle for a doctor that ignores your concerns! You are your own best advocate! The more research you do, the more questions you ask, the more answers you'll get. Hang in there & take care!

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Hi cocodab:

There is almost nothing more powerful than experience. In fact there is a Scripture that says the educated are at the mercy of one who has experience! That was Not a quote! Doctors learn and remember from lessons and books and if you can find one who will listen you are most fortunate! From my experience to find help with Neuropathy issues & muscle pain, find a good pain doctor unless you have a good amount of nerve damage a neurologist usually will do very little. Again that's my opinion. Like you said, finding a good physical therapist is a good idea. Learn to use topical pain lotions and analgesic creams is probably a good idea. As from what I have learned is to learn to live with your new normal.

One of the main items for me anyway it to get some good solid sleep and not too much from drug induced. That is not easy when you are in pain or from SFN. Anyway get informed as you stated. Have a great sleep tonight. As always be thankful for your breath. MicTim

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@qball2019

@cocodab

You are not alone! There are many helpful people on here so you're in the right place! Sometimes it just feels good to chat with someone that is going through the same things you are. Here is my advice to you.

Your team of doctors will probably need to include a PCP that supports your issues and strives to find treatment for you, a pain management doctor, a neurologist, and a physical therapist. Integrative/holistic providers will do a world of wonders for you as well. You may also want to consider a mental health provider if your symptoms are causing depression or anxiety. Find a good physical therapist that is up to date on new procedures, and continues to take classes to learn more. The right one will help with the neuropathy & muscle pain. Also, maybe it's just time to look for a new doctor. Research them online and read their reviews. In my area I've found that the good ones are booked out a couple months but probably worth the wait. I'm currently looking for a neurologist. Ask all questions you have and don't settle for a doctor that ignores your concerns! You are your own best advocate! The more research you do, the more questions you ask, the more answers you'll get. Hang in there & take care!

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Thank you for this advice. You are so correct.
This will take some time I am on SS Medicare and I find many limitations.
You have to be your best advocate and one has very little energy.

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I want to know if there are positive outcomes to nerve pain in leg that’s not resolved 4 weeks post spinal fusion

Liked by grandmaR

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@gmaoffour

I want to know if there are positive outcomes to nerve pain in leg that’s not resolved 4 weeks post spinal fusion

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@gmaoffour
Happy Sunday!
I had surgery on L3/4.
I had an X-Lift spinal fusion.
No, I do not know if there are differences.
I assume it's the WAY it is done.
Anyway, I had HORRIBLE leg pain after the surgery for about 2-3 months!!!
It was so bad, that when I awoke in the morning, I'd get into my chair, put pillows under my leg and my hubby would bring me ice packs for my knee area and groin area.
There were also times, (please pardon the TMI) that I would be sitting on the toilet and get such spasms of pain, he'd have to come and get me off.
Seems that when the surgery was done, there was a lot of movement of leg muscles and a bit of cutting.
I didn't know this beforehand.
My recovery was HORRIBLY painful and felt like it took for ever.
But now, for the first time in over a decade, I am PAIN FREE!!!!!
If you asked me then if the surgery was worth it, I would have laughed in your face.
Now, I say FOR SURE!!

Give it time to heal. The internal healing can that you cannot see or feel, can take 12 -18 months.
I had my surgery Oct. 2018 and I still baby myself…..no lifting, bending, carrying anything heavier than a gallon of milk, no hyper-extentions, etc.

Good luck!
Ronnie (GRANDMAr)

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@grandmar

@gmaoffour
Happy Sunday!
I had surgery on L3/4.
I had an X-Lift spinal fusion.
No, I do not know if there are differences.
I assume it's the WAY it is done.
Anyway, I had HORRIBLE leg pain after the surgery for about 2-3 months!!!
It was so bad, that when I awoke in the morning, I'd get into my chair, put pillows under my leg and my hubby would bring me ice packs for my knee area and groin area.
There were also times, (please pardon the TMI) that I would be sitting on the toilet and get such spasms of pain, he'd have to come and get me off.
Seems that when the surgery was done, there was a lot of movement of leg muscles and a bit of cutting.
I didn't know this beforehand.
My recovery was HORRIBLY painful and felt like it took for ever.
But now, for the first time in over a decade, I am PAIN FREE!!!!!
If you asked me then if the surgery was worth it, I would have laughed in your face.
Now, I say FOR SURE!!

Give it time to heal. The internal healing can that you cannot see or feel, can take 12 -18 months.
I had my surgery Oct. 2018 and I still baby myself…..no lifting, bending, carrying anything heavier than a gallon of milk, no hyper-extentions, etc.

Good luck!
Ronnie (GRANDMAr)

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Hi @grandmar

I'm glad that you provided a good time period for healing from this kind of surgery. We are all sort of expecting instant fixes, but your experience is good to help us all understand that deep healing can really take time. Thanks for your post!

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@gmaoffour

I want to know if there are positive outcomes to nerve pain in leg that’s not resolved 4 weeks post spinal fusion

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Welcome to Connect, @gmaoffour,

Unfortunately, neuropathic pain after spinal surgery, (also called failed back surgery syndrome FBSS), happens all too often. @sheriatrapidcit @jenniferhunter @suerc @lynn12 @salsa @beckyann @tom2017 and many others have recently shared their experiences in this discussion, as well:
– Chronic pain and spinal fusion https://connect.mayoclinic.org/discussion/chronic-pain-and-spinal-fusion/

@gmaoffour, could you share a few more details? How are you managing the pain? Has anything helped to give you temporary relief?

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@hopeful33250

Hi @grandmar

I'm glad that you provided a good time period for healing from this kind of surgery. We are all sort of expecting instant fixes, but your experience is good to help us all understand that deep healing can really take time. Thanks for your post!

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@hopeful33250
Hi Teresa,
You are very welcome.
Sadly, many people who have any kind of surgery will start to do things 'they shouldn't' because they are feeling better or the outside scars have healed.
Even if the post-op tests show you are healed, we have to remember that the cut areas are weak.
They are not as strong as they were before you were injured and/or operated on.
Way back, I had surgery on my left shoulder to repair a tear (thank goodness, not my rotator cuff).
When I went back after a few weeks and some time in PT, the surgeon said I was healed and could return to my usual exercise activities which included weights.
My PT said NO!!!!
Guess who I listened to?
My surgeon.
I felt good and wanted back to weights.
Within 3 months, I was back at the surgeon with pain in my shoulder.
You guessed it, I reinjured my shoulder and needed another surgery.
This time, the surgery was going to be worse because the tear extended further.
That is when I learned my lesson about being patient and waiting.

Happy Sunday!
Ronnie (GRANDMAr)

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@kanaazpereira

Welcome to Connect, @gmaoffour,

Unfortunately, neuropathic pain after spinal surgery, (also called failed back surgery syndrome FBSS), happens all too often. @sheriatrapidcit @jenniferhunter @suerc @lynn12 @salsa @beckyann @tom2017 and many others have recently shared their experiences in this discussion, as well:
– Chronic pain and spinal fusion https://connect.mayoclinic.org/discussion/chronic-pain-and-spinal-fusion/

@gmaoffour, could you share a few more details? How are you managing the pain? Has anything helped to give you temporary relief?

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@kanaazpereira
Hi!
That is very interesting!
I had cervical surgery the end of February 2018.
I had C5/6 replaced.
My pain went away and all the other symptoms.
The recovery was a snap.
Then in June 2018, I noticed, when my foot was flat, that I could not move my foot from side to side.
I also noticed my big toe felt a bit numb.
I started to feel like my toes and the ball of my foot were getting numb, but I was still able to move my toes.
I couldn't however, stand on my toes or the heals of my foot.
I then had my lumbar surgery October 2018.
My legs became weak, my big toe no longer moves and my toes and the ball of my foot are numb, but I can still wiggle my toes a bit.
I am now having issues with my left foot, too.
It is not as bad as the right foot, but I am sure it will catch up.
My neurosurgeon is stumped.
He sent me to a neurologist for an eval and for nerve tests.
I do have severe nerve damage in both legs, but not the ones that lead to the feet.
He send me to a vascular surgone for an eval and vascular tests.
I do have a blockage in each leg but that only accounts for the swelling.
I had an ablation on my right foot but it did not seem to help.
Will see the doc again, soon..
As a last resort, I am having a brain scan to make sure I haven't had a stroke or that there is something else going on in there.
I am just waiting for the insurance to approve it.
I've also had a bunch of other tests.
I am mystifying the docs!
So, I wear a brace when I do a lot of walking and that helps a lot!
I am sure I'll need one for my left foot, too, sooner or later.
I also use a cane.
I am going to start PT, again, this time to try to help with my balance since I've fallen a few times.

Well, that's my story and I'm sticking to it (LOL)!
Have a great evening!
Ronnie (GRANDMAr)

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Here’s a more recent article that describes "Neuropathic Pain after Spinal Surgery" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5573860/

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@johnbishop

@amaze02, @bloufitz – Mayo Clinic has a good explanations and a starting place to learn about peripheral neuropathy on their website:
http://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/home/ovc-20204944
Also here is one of the best and easy to understand explanations of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin:

Mayo Clinic info on Trigeminal neuralgia:
http://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/basics/definition/con-20043802
Hoping other Connect members will also share what works for them.

John

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Good video! Would my nerve conduction studies reveal the information above? My neurologist is leaning toward a Parsonage Turner Syndrome but has now encouraged me to go to a Mayo Clinic for further diagnosis.

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@kimchi19

Good video! Would my nerve conduction studies reveal the information above? My neurologist is leaning toward a Parsonage Turner Syndrome but has now encouraged me to go to a Mayo Clinic for further diagnosis.

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@kimchi19, that would be a good question for your neurologist. I think it's great that your neurologist is recommending that you go to the Mayo Clinic for further diagnosis. Can you get a referral from your neurologist to the Mayo Clinic?

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

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