View Full Version : Neuropathy
gonegonzo
01-31-2019, 17:16
Does anyone here suffer from Neuropathy ?
I waited a long time to retire and since I have , I have been having problems with Neuropathy . I'm not a diabetic . I can push myself through some of the pain but an extended hike would be tuff . I want to start hiking the AT in sections . That has always been my goal .
Finding good doctors for treatment has been impossible . Does anyone know a remedy or at least somthing to make the pain more bearable ? I'm sure I'm not alone with this condition .
Tom aka Gonzo :confused::confused::confused:
Neuropathy is a term used for a broad array of nerve problems both voluntary and involuntary; both sensory and motor. Since you mentioned "pain" I would assume it is primarily a sensory issue in your case. If you can find a health care provider who actually cares that might be your best bet. Sometimes even simple changes in diet can make a difference. Usually neuropathies can't be reversed, but if the underlying cause can be discovered corrective action can be taken so it does not worsen. I'm not sure a message board for a bunch of hikers is a good place to get an answer.
Growing old is not for sissies ... we all experience a range of maladies.
NJdreamer
01-31-2019, 21:04
Does anyone here suffer from Neuropathy ?
I waited a long time to retire and since I have , I have been having problems with Neuropathy . I'm not a diabetic . I can push myself through some of the pain but an extended hike would be tuff . I want to start hiking the AT in sections . That has always been my goal .
Finding good doctors for treatment has been impossible . Does anyone know a remedy or at least somthing to make the pain more bearable ? I'm sure I'm not alone with this condition .
Tom aka Gonzo :confused::confused::confused:I think morton's neuroma is one form of neuropathy. Ice or cold water stops the pain, as does rest. I recently saw some exercises to help resolve morton's neuroma but haven't tried them. I have been told injections are an option but have read advice against them (dr internet).
Sent from my SM-G950U using Tapatalk
Greentree
02-01-2019, 08:45
You mention treatment so I don't know whether you have received a formal diagnosis or any investigation into potential causes. However, if not, it might be worth asking a Doctor to check your B12 levels. I'm not a Doctor but just thought I'd mention it since I was found to be B12 deficient after developing neuropathy symptoms two years ago and B12 supplementation seems to have helped in my case.
greensleep
02-01-2019, 08:56
Neuropathy is a term used for a broad array of nerve problems both voluntary and involuntary; both sensory and motor. Since you mentioned "pain" I would assume it is primarily a sensory issue in your case. If you can find a health care provider who actually cares that might be your best bet. Sometimes even simple changes in diet can make a difference. Usually neuropathies can't be reversed, but if the underlying cause can be discovered corrective action can be taken so it does not worsen. I'm not sure a message board for a bunch of hikers is a good place to get an answer.
Growing old is not for sissies ... we all experience a range of maladies.
Depending on where and how your "neuropathy" manifests, you may have a skeletal/spinal issue. An impingement on nerve(s) is possible.
stephanD
02-01-2019, 09:27
If you cannot find a doctor, then don't hike until you find one. You can cause yourself irreversible damage. Neuropathy has many causes and diabetes is only one of them .
gonegonzo
02-01-2019, 13:17
I've been to the Cleveland Clinic trying to get relief . They told me it was not reversible and to see my family doctor for medications for the pain . He prescribed Gabapentin but it didn't help .
My Neuropathy stems from working construction climbing on cold steel and standing on cold concrete for 8 hour plus days in the winter time .
trailmercury
02-01-2019, 13:30
I've been to the Cleveland Clinic trying to get relief . They told me it was not reversible and to see my family doctor for medications for the pain . He prescribed Gabapentin but it didn't help .
My Neuropathy stems from working construction climbing on cold steel and standing on cold concrete for 8 hour plus days in the winter time .
Have you followed up at all after the gabapentin was first prescribed? A dose adjustment could be the ticket. What about a pain clinic evaluation. There are other ways to treat your symptoms that are not "traditional" but may help, have you tried any alternative remedies?
stephanD
02-01-2019, 14:38
[QUOTE=gonegonzo;2236387]I've been to the Cleveland Clinic trying to get relief . They told me it was not reversible and to see my family doctor for medications for the pain . He prescribed Gabapentin but it didn't help .
In my experience as a RN, pregabalin (lyrica) is the most common medication to treat neuropathy. But it is a controlled substance, so some doctors may be reluctant to prescribe it. Also, pain is a very complex condition. See if you can get a referral for a pain specialist doctor, especially before hiking.
trailmercury
02-01-2019, 14:44
Lyrica is not used as much as gabapentin for non-diabetic neuropathy. I am only reluctant to prescribe it because insurance coverage is often an issue. The fact that it's controlled is not a barrier to me prescribing it. (Family doctor)
stephanD
02-01-2019, 14:54
Lyrica is not used as much as gabapentin for non-diabetic neuropathy. I am only reluctant to prescribe it because insurance coverage is often an issue. The fact that it's controlled is not a barrier to me prescribing it. (Family doctor)
Good point. Most of my previous patients (I'm not in med-surg anymore) were diabetic patients. Also, i worked in a public state hospital, so insurance was not an issue, as almost everybody was on medicaid. Anyhow, my advice for the OP is the same, that he should consult a pain specialist, especially if he plans hiking.
Not to cloud the issue, but..... some medications have a side effect of neuropathy. It can come on very gradually and therefore be difficult to diagnose as a side effect versus a separate malady. Statin drugs had this effect with my Dad, it reversed completely when he went of the meds. Another thing to research and discuss with your doctor. Best to you and your hiking goals!
gonegonzo
02-01-2019, 17:54
Stephan , I'll check in to see a pain specialist . I never considered it before your mentioning it .
Kestral , Are you saying that other meds have a side effect that reacts like Neuropathy ? Do you know what meds they were ? By the way , we were neighbors about 12 years ago . I used to live in Palm Bay .
stephanD
02-01-2019, 18:21
Stephan , I'll check in to see a pain specialist . I never considered it before your mentioning it .
Kestral , Are you saying that other meds have a side effect that reacts like Neuropathy ? Do you know what meds they were ? By the way , we were neighbors about 12 years ago . I used to live in Palm Bay .
So you moved from Florida to Ohio?:-? it is usually the other way around... Good luck
sorry I have no idea about that issue, except to say I would really wonder if a naturalpath (i think is what they're called) might do some good. I used to think chiropractic was a bunch of sillyness, but I've come to find great value in it for some things. As a mechanical engineer aI have to say that it just makes good sense in many ways. Often they share offices with acupuncturist (my wife swears by that method for her back pain relieve by the way), and acupuncturists also often seem to be heavy into herbal medicine, nutritional considerations and such.
I think a lot of that makes so much sense for general health. I just wish it was easier to pull together into a comprehensive program....both in a logistical sense and insurance/payment sense too. I would love to find either an individual doc, or a group, that blends all of these things together along with traditional western medicine.... like an MD or DO, an acupuncturist, a chiropractor, a nutritionist, and herbal med doc, etc...
Anyway, when I hear about folks with these more "obscure" issues like yours I really have to wonder if these alternative methods might be a great solution. Just seems so hard to pull together.
Quick internet search pulled up this list https://mcvitaminshealthproducts.com/medications-with-side-effects-of-neuropathy . Ironically, meds for treatment of neuropathy can exacerbate it! Not fair.
It does make sense that the anti statins can worsen nerve damage as nerves are coated by a layer of cells mostly made of fat. So much conflicting info out there. All meds can have side effects, even vitamin supplements. Not everyone has every side effect.
Medicine is science, ruling out differential diagnosis, trial and error, art, and a splash of luck. Always new information out there. Dr Berry said it best “half of what you learn in medical school is wrong, the trick is to figure out which half”. Don’t go off any meds without discussing with your doc. Some meds need to be weaned off or switched to prevent complications. I try to aim for minimal meds, maximum nutrition, moderate excercise. I don’t always succeed (currently eating cookies while on I pad while laying in bed)
fastfoxengineering
02-01-2019, 20:00
Not a cure. And not some hippie hiker stuff.
Try CBD gummies for 90 days consistently. The medicinal properties of CBD are excellent.
Sent from my SM-J737V using Tapatalk
peakbagger
02-01-2019, 20:54
I and many other folks got caught by the so called minor side effect from statins of sore swollen feet and screwed up joints. The drug companies and medical establishment downplay it but some studies indicate that up to 30% of folks taking statins (Zocor, Crestor Lioptor Etc). have it as a side effect. I used to have to go up one size of shoes for a couple of days after hiking as my feet would be swollen up so much. Felt like someone had pounded on my feet and my skin would be drum tight around my ankles and feet. My elbows would swell up with fluid and they had to drain them every few months and my doctor was sure I had carpal tunnel in my wrists. I knew a couple of folks who had to quit jobs due to statins as they couldnt walk. I have also run into several hikers who had to stop hiking. Once they stopped taking statins, the problems went away in a few weeks. Every time they come up with a new statin they say it has less side effects and some of the latest ones do seem to have less but they have other side effects like loss of mental clarity and for some folks like me an odd type of sleep disorder. Note the side effects do not happen right away it slowly builds up over weeks or months so a lot of folks do not make the connection.
There is a genetic basis for some statin intolerence but the US medical industry would rather keep pushing the profitable drugs. Most of the studies are paid for by the drug companies and of course they come to the conclusion that any side effects are minor. Even if you have moderate high cholesterol there is a test called ultraprecise CRP which measures the amount of inflammation in your blood, it you have high inflammation you are out of luck but if you have low then there is less need to aggressively treat the cholesterol.
It would be great it if was as simple as a drug side effect that but sounds like it an occupational related disability.
I and many other folks got caught by the so called minor side effect from statins of sore swollen feet and screwed up joints. The drug companies and medical establishment downplay it but some studies indicate that up to 30% of folks taking statins (Zocor, Crestor Lioptor Etc). have it as a side effect. I used to have to go up one size of shoes for a couple of days after hiking as my feet would be swollen up so much. Felt like someone had pounded on my feet and my skin would be drum tight around my ankles and feet. My elbows would swell up with fluid and they had to drain them every few months and my doctor was sure I had carpal tunnel in my wrists. I knew a couple of folks who had to quit jobs due to statins as they couldnt walk. I have also run into several hikers who had to stop hiking. Once they stopped taking statins, the problems went away in a few weeks. Every time they come up with a new statin they say it has less side effects and some of the latest ones do seem to have less but they have other side effects like loss of mental clarity and for some folks like me an odd type of sleep disorder. Note the side effects do not happen right away it slowly builds up over weeks or months so a lot of folks do not make the connection.
There is a genetic basis for some statin intolerence but the US medical industry would rather keep pushing the profitable drugs. Most of the studies are paid for by the drug companies and of course they come to the conclusion that any side effects are minor. Even if you have moderate high cholesterol there is a test called ultraprecise CRP which measures the amount of inflammation in your blood, it you have high inflammation you are out of luck but if you have low then there is less need to aggressively treat the cholesterol.
It would be great it if was as simple as a drug side effect that but sounds like it an occupational related disability.
just curious...when you were taking the statins and having these reactions were you also taking co Q 10?
I've been on a statin for several years now without any known issues. I had a doc try it once sometime earlier and I had some sort of minor reaction. I honestly don't remember what it was exactly, just some seemingly monor weird feeling so the doc had me stop. Years later and a different doc had me try it along with co Q 10. As I understand it, the statins have an effect of reducing this enzyme level in your body, so supplementing offsets it. I still don't like the iddea of taking this thing...or anything really long term...but it's one of those things....
peakbagger
02-02-2019, 08:20
co Q 10 did not make a difference for me. Many folks can tolerate statins well and maybe coQ10 will help some although unbiased research seems to be sketchy. There may be a placebo effect and it cant hurt so many doctors dont mind patients taking supplements if it keeps them on the statins.
My dad was involved with a study by a doctor on statin intolerance and genetic factors. People with french canadian heritage like myself (which is quite popular in the Northeast) have a higher chance of statin intolerance along low HDL which leads to low LDL to HDL ratios.
Lion's mane mushrooms regrow myelin on nerve axons and are being studied now for repairing nerve damage and neuropathy. There are lots of companies selling supplements of it now, and you can find it fresh in many grocery stores.
Niacin helps to increase blood flow to help get the lions mane to the extremities. A multi b-vitamin high in niacin would be ideal
High doses of CBD can help reduce inflammation and some say it helps with pain
Massage, chiropractic, and extensive stretching of the area around the pain could help
gonegonzo
04-16-2019, 15:20
My appointment with a pain managment physician is in 2 weeks . Wish me luck .
stephanD
04-16-2019, 17:14
My appointment with a pain managment physician is in 2 weeks . Wish me luck .
Best of luck. Chronic pain is a multi-facade condition and a good pain management doctor is worth his weight in gold.
My wife has had bilateral neuropathy in her arms/wrists starting in her 20's. We tried multiple surgeries and many medications (including heavy doses of gabapentin), but the thing that has helped them most were nerve block treatments that were administered by an anesthesiologist at a pain management clinic. She still has to manage her activity to not exacerbate the problem, but has been able to go off of all the meds for years now.
I wish you the best in your journey. Try not to be too discouraged by the docs who can't help, just keep looking for the one that has the right incite into your situation.
do the mushrooms work with diabetics. I am a type 2 and my neuropathy drives me nuts. BTW...my sugar is very well maintained and has been for several years since i was diagnosed. 5.1 A1C
nsherry61
04-27-2019, 21:39
FWIW: I have neuropathy in my feet, mostly numbness, not so much pain. My B12 levels are within normal, but on the lower side of normal. At my doctor's suggestions, I started taking B12 supplements and within days I noticed a notable improvement in the numbness of my feet. Sadly, the notable bit of improvement is all I got. If I stop taking B12, I immediately start getting more numb feet. If I take more than my regular daily dose, there is no further decrease in numbness. It is apparently likely that the long-term damage is permanent, but we have stopped the progression and improved things slightly with daily B12 supplements.
Good luck. I'd sure love a medication or supplement that would help improve my neuropathy, but, at this point, it looks like halting its progression it all we can do.
bighammer
04-28-2019, 13:22
About 21 years ago, I slipped and fell on some ice in a parking lot while getting out of my truck and blew out my L5-S1 disk. My whole left side from the waist down went numb pretty quickly. I was at the dentist for a filling and it felt like the Novocaine went to my leg as well. I had surgery 2 days later which corrected most of it, but my foot is still somewhat numb. I do seem to stumble and trip on things and turn my ankle pretty often, so when hiking with a pack, I use trekking poles.
I tried both Lyrica and Gabapentin after a botched sinus surgery that left me with chronic pain for about 3 years, didn't like either one. I suppose I could complain about my numbness, but I'm really thankful that it's not painful. Best of luck to you. I really hope you can find some relief.
gonegonzo
07-24-2019, 18:47
Just an update on my pain management . I received my first series of pain blocking shots 2 weeks ago . I go in for my second series the first week in August . I'm keeping optimistic as to the total results . The firsts series brought the pain level in my legs to zero and my feet from pain level 9/10 to 2 . My feet are still at 2 to 5 and my knees are at 8 . I'll keep you all posted . Hopefully I can at least hike the AT in sections .
So glad you are getting some relief. Knee pain may have different cause (osteoarthritis?) than leg and foot pain. Keep doing what works for you. Try to maximize nutrition, possible supplements in addition to your modern medical care. Hope to see you out there soon ��
CrumbSnatcher
12-14-2019, 14:07
5.1 is amazing... congrats
I would second the thought that a naturopath or chiropractor or acupuncturist might help. They know a lot about treating pain by means besides prescriptions. They might first examine your nutrition, lifestyle, and exercise habits. These are critical, but invariably ignored by most PCPs. You problem may be a vitamin/mineral deficiency, or side effects from prescriptions like statins. You need a whole blood panel workup done ASAP, especially if you eat SAD. (Standard American diet; flaccid processed foods).
Modern medicine is wonderful for acute injuries, but sorely lacking for chronic conditions IMO. Look elsewhere.