Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@jjwest

I have been told by many Medical people that the pain is almost always worst when the sun goes down and late at night. Not sure why, same reason reseach shows that people diem have more pain and more babies are born in the late hours of the day. I am currently on 88mg gabapenten with 50 mg of tramadol every 6 hrs and to stay out of extreme pain in my feet calves and hands I have to keep this schedule. I have tried to make it longer in between but pay for later. I try to go longer because the gabapenten keeps geeting more expensive and now tramadol is considered an antioid…I wonder if any of these people have to deal with pain? I thnk no…it is all about politics…I started out with 200mg of gaba +tram and have advanced to this larger dosage. I pray every day and research all I can for an answer…if you find one PLEASE tell me?
Peace & Hope always…JJ

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I am currently taking 88mg every six hours with 50mg of Tramadol

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@jjwest

I have been told by many Medical people that the pain is almost always worst when the sun goes down and late at night. Not sure why, same reason reseach shows that people diem have more pain and more babies are born in the late hours of the day. I am currently on 88mg gabapenten with 50 mg of tramadol every 6 hrs and to stay out of extreme pain in my feet calves and hands I have to keep this schedule. I have tried to make it longer in between but pay for later. I try to go longer because the gabapenten keeps geeting more expensive and now tramadol is considered an antioid…I wonder if any of these people have to deal with pain? I thnk no…it is all about politics…I started out with 200mg of gaba +tram and have advanced to this larger dosage. I pray every day and research all I can for an answer…if you find one PLEASE tell me?
Peace & Hope always…JJ

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@jjwest My neuropathy (I have Gelsolin Amyloidosis ), and my pain is always worst early in the morning. Tramadol does not touch it. Tyenol Super does some after a couple hours.

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I'm new to the group. I have been diagnosed with RSD/CRPS.

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@oldkarl

@jjwest My neuropathy (I have Gelsolin Amyloidosis ), and my pain is always worst early in the morning. Tramadol does not touch it. Tyenol Super does some after a couple hours.

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Tylenol Arthritis works best for me. 2 put me right to sleep and helps me sleep thru the night. Regular Tylenol does nothing.

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@steeldove

@danm I too find that I tend to be pretty good until late afternoon when the pain in my legs, around my knees and in my thighs becomes really intense. I've been taking 400 mg or Gabapentin 3 times a day, and usually take 100 mg of Tramadol when the leg pain starts. The pain continues well into the night, but I've found some relief by lying in bed or sitting up in bed reading or watching movies on my iPad, with a heating pad on my legs and more Tramadol. It seems to be important to have the legs straight. Whatever works!!!

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@steeldove – I am so sorry for all the people, and their pain, I read about here. I do agree that for some of us the pain gets worse in the evening and night and that sticking to a schedule of meds helps… and the heating pad. Yesterday I made the mistake of having an MRI in late afternoon – should have taken the meds before – you can't lie still for an MRI of your lower back when the restless leg gets going. I love what @mlmcg says – "May your tomorrows be better than your todays".

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Hi All, I am back. I am a controlled diabetic and now suddenly have been having some neuropathy. I was also vitamin B12 deficient and don't know how long, which may actually have been the smoking gun. The strange thing is I have been having digestive issues, which seems to be usually very secondary or rare compared to the rest. The digestive symptoms started out as pain (thought it was kidney stones), but then it grew and now they think it is gastroparesis. I start with testing next week. I am very depressed. My life changed in a matter of weeks. I am only 48. Anyone else out there have a similar rapid decline or this kind of onset, dealing with eating issues… I have been reading about the Cleveland Clinic and if this turns out to be that, I will go there to work with doctor Cline. I have kids still I need to mother. My anxiety is through the roof. They also took me off my diabetes meds and said I to just manage it with diet. I am calling my ENDO today since this was a recommendation from the GI and my primary, whom I have dropped due to negligence (he should have been testing me for vitamin B 12 deficiency because I was on metforim). Doctors overbook and then don't do their homework to ensure they are taking care of you. I just had blind faith trust. He told me I was doing great.

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@johnbishop

Hi Jim (@jimhd), I'm really happy to hear the spinal cord stimulator is giving you some relief from pain. If it works it is so much better than the drugs used for neuropathy pain symptoms. The drugs just mask the pain and a lot of the times you have to up the dosage to keep the pain at bay. They really do not address the problem – damaged nerves which cause the pain signals to be sent to the brain.

I do not have the pain but I have had the numbness in my feet and legs for over 20 years. It was only last year when I started being more proactive that I became aware of how the drugs work. Because the numbness was just below my knees I started to worry and I asked my doctor about lyrica (you know all those TV ads glorifying it) for my undiagnosed neuropathy. She put me on gabapentin and after a month I went back and told her it wasn't doing anything for me. She had a consult with the Mayo primary care doctor team and another doctor quizzed me on my symptoms. When I told him I didn't have any pain but only the tingling and the numbness, he told me the gabapentin (generic lyrica I think) only addresses the pain and does nothing for the numbness. My primary care doctor had me get a couple of different MRIs and the EMG before I could see the neurologist. After I met with him, he diagnosed that I had idiopathic small fiber peripheral neuropathy and I was one of the "lucky" ones that only had the numbness symptoms without the pain. He also burst my bubble by telling me there are no topicals, creams, medications that will address numbness. I left that appointment pretty depressed and started my search to learn as much as I can about my SFPN.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it's up to you to do your own research and avoid scams. Fortunately there is a lot of information on how to avoid scams but it's out of sight, out of mind for a lot of folks. Here are the ones I've used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's HEALTH FRAUD PAGE
https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

You can also link to this great resource from NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it.
https://nccih.nih.gov/health/decisions

That said, I have found something that works for me and has helped a lot of folks with PN get off of the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was pretty high and thought it should be less. But again, I'm the one with the health issue and it's my body so I took his input and did some further research and found that it was within guidelines of the numbers for omega 3 supplements for treating what ails me according to information on the Mayo Clinic's website:

http://www.mayoclinic.org/drugs-supplements/omega-3-fatty-acids-fish-oil-alpha-linolenic-acid/dosing/hrb-20059372

This is the website for Facebook Group I found – Solutions to Peripheral Neuropathy Pain & Discomfort (501c3) – http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. It has been a blessing for me to find the group. I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I haven't made any more progress since December but I'm OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Others in the group with pain that had them bedridden have reported they are now able to live a normal lifestyle and have been able to taper off the drugs once they were on the full protocol and started feeling better. If you do decide to take a look and join the group, please read all of the information.

Hoping all of my neuropathy friends find a treatment that works for them!

John

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Hi John,You posted in a September 10 response a link of some kind. I have tried a number of times to access that link and all I get is "no page found"
Arnrob

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@nikkig

Hi All, I am back. I am a controlled diabetic and now suddenly have been having some neuropathy. I was also vitamin B12 deficient and don't know how long, which may actually have been the smoking gun. The strange thing is I have been having digestive issues, which seems to be usually very secondary or rare compared to the rest. The digestive symptoms started out as pain (thought it was kidney stones), but then it grew and now they think it is gastroparesis. I start with testing next week. I am very depressed. My life changed in a matter of weeks. I am only 48. Anyone else out there have a similar rapid decline or this kind of onset, dealing with eating issues… I have been reading about the Cleveland Clinic and if this turns out to be that, I will go there to work with doctor Cline. I have kids still I need to mother. My anxiety is through the roof. They also took me off my diabetes meds and said I to just manage it with diet. I am calling my ENDO today since this was a recommendation from the GI and my primary, whom I have dropped due to negligence (he should have been testing me for vitamin B 12 deficiency because I was on metforim). Doctors overbook and then don't do their homework to ensure they are taking care of you. I just had blind faith trust. He told me I was doing great.

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Hi, @nikkig, and welcome back to Connect. Glad to have you here. I merged your post with this one as there are many members here talking about neuropathy with whom I thought you'd like to interact.

I can hear some urgency in your post, and I'm sorry that you are now dealing with digestive issues, feeling very depressed and have anxiety through the roof, plus have been taken off your diabetes meds.

Here are a few threads you also might want to check out:

– About diabetes: https://connect.mayoclinic.org/discussion/type-two-diabetes/, if you have Type II, or https://connect.mayoclinic.org/discussion/type-1-surprise/, if you have Type I

– About gastroparesis: https://connect.mayoclinic.org/discussion/gastroparesis/

– About depression: https://connect.mayoclinic.org/discussion/depression-3/

Hoping that members like @jjwest @johnbishop @oldkarl @hosta @steeldove and others may have some insights for you as you are dealing with the neuropathy along with the other health concerns.

You'd mentioned previously, @nikkig, experiencing some pins and needles, numbness and sleeping problems. Is this what you are still seeing with your neuropathy, or are you having some different symptoms currently?

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@nikkig

Hi All, I am back. I am a controlled diabetic and now suddenly have been having some neuropathy. I was also vitamin B12 deficient and don't know how long, which may actually have been the smoking gun. The strange thing is I have been having digestive issues, which seems to be usually very secondary or rare compared to the rest. The digestive symptoms started out as pain (thought it was kidney stones), but then it grew and now they think it is gastroparesis. I start with testing next week. I am very depressed. My life changed in a matter of weeks. I am only 48. Anyone else out there have a similar rapid decline or this kind of onset, dealing with eating issues… I have been reading about the Cleveland Clinic and if this turns out to be that, I will go there to work with doctor Cline. I have kids still I need to mother. My anxiety is through the roof. They also took me off my diabetes meds and said I to just manage it with diet. I am calling my ENDO today since this was a recommendation from the GI and my primary, whom I have dropped due to negligence (he should have been testing me for vitamin B 12 deficiency because I was on metforim). Doctors overbook and then don't do their homework to ensure they are taking care of you. I just had blind faith trust. He told me I was doing great.

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@nikkig
You might want to consider being tested for gluten issues. If you have gluten intolerance or celiac disease, it causes malabsorption and that could be contributing to a Vitamin B deficiency. Stress also can cause gluten problems to start. This happened to me with the stress of going through my first surgery, and within a year the gluten in grains caused a leaky gut due to inflammation which created a lot of other food allergies that I live with. I had to figure things out with an elimination diet because at the time years ago. no doctor would listen to me or test me for gluten intolerance and I was told that I couldn't have this because I looked too good (not being emaciated from long term malabsorption). Stopping that and other foods that cause allergies helped a lot, and I get pretty sick if I have accidental exposure. Avoiding all my food issues stopped my unexplained pain. Here is some information. https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

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@arnrob

Hi John,You posted in a September 10 response a link of some kind. I have tried a number of times to access that link and all I get is "no page found"
Arnrob

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@arnrob do you remember what the link is about or what it said? I'm not sure which link it may be. Thanks! John

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@arnrob

Hi John,You posted in a September 10 response a link of some kind. I have tried a number of times to access that link and all I get is "no page found"
Arnrob

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The link does not work with the bookmark part in the address. Just click on the link and when the URL comes up, delete everything after the number, i.e. from bookmark on and then click to load that address and you will get to the page the link is for.

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@johnbishop

Hi Paul @paulfj067 , I agree with you but it's just my opinion and I have no medical background or training. Also, I only have numbness with my PN. I found something that works for me and has worked for others who also have pain with their PN. I don't know if it will work for you but it's an alternative to drugs. I decided to try it after a lot of research on my own and also the fact there are no drugs or topicals that work to get rid of numbness, I've tried them all. Drugs do nothing to fix or repair damaged nerves which is the cause of the pain and numbness. The drugs just block or mask the pain in your brain so you don't feel it and they come with some major side effects. You can read my story here if you want to give it a try:

https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

John

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John this is the post with the link that does not work. As I said in my other post, just delete everything from bookmark until the end and it will work.

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@jenniferhunter

@nikkig
You might want to consider being tested for gluten issues. If you have gluten intolerance or celiac disease, it causes malabsorption and that could be contributing to a Vitamin B deficiency. Stress also can cause gluten problems to start. This happened to me with the stress of going through my first surgery, and within a year the gluten in grains caused a leaky gut due to inflammation which created a lot of other food allergies that I live with. I had to figure things out with an elimination diet because at the time years ago. no doctor would listen to me or test me for gluten intolerance and I was told that I couldn't have this because I looked too good (not being emaciated from long term malabsorption). Stopping that and other foods that cause allergies helped a lot, and I get pretty sick if I have accidental exposure. Avoiding all my food issues stopped my unexplained pain. Here is some information. https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220

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Was tested with celiac, with a negative result. I can barely eat anything right now, partly due to being off my meds and partly because food is intolerable at this point. They gave me Lizness, but that is it. I am having an endoscopy/colonoscopy on Monday, then a gastroemptying test. I am also scheduled to see a neurologist. Trying to take it one day at a time. It's scary. I went from fine to being very, very ill.

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@johnhans

John this is the post with the link that does not work. As I said in my other post, just delete everything from bookmark until the end and it will work.

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Thanks @arnrob and @johnhans — not sure why but the link worked for me when I tried it. We have been some issues with bookmarks recently after an update so I changed the link to use the page/comment reference so that it should work now. I changed it to the following which takes you to my story of how I found what works for me for PN:

https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Hope this helps.
John

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Hi Old Karl @oldkarl — I thought about you when I received an email update from the Foundation for Peripheral Neuropathy and read the following info in one of the headings:

"On August 10, the FDA said it had approved patisiran (Onpattro) to treat polyneuropathy associated with hereditary transthyretin (hATTR) amyloidosis, caused by a gene mutation that leads to amyloid deposits in nerves and tissues.

In the phase III APOLLO trial, patisiran slowed peripheral neuropathy progression in patients with hATTR amyloidosis, improving neurological impairment and clinical manifestation by over 18 months."

The email had the following link to more info:
Patisiran Wins Two Firsts With FDA Approval — RNAi drug OK'd to treat polyneuropathy from hereditary transthyretin amyloidosis
https://www.medpagetoday.com/neurology/generalneurology/74525?utm_source=E-News+-+September+2018&utm_campaign=E-News+-+September+2018&utm_medium=email

John

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