Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
Hi it is actually Valor II
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I put the brand in the previous email. I’m not at home right now or I’d look it up for you
Hi – I’ve had peripheral neuropathy in my feet and now legs for a little over 10 years. I’m probably more fortunate than most since mine is mostly numbness and tingling and no sharp pains. My doctors had me on gabapentin for awhile but it did nothing for me and when I discussed it with a new doctor team I was told gabapentin is only for pain and not numbness. I had to have an ECS and MRI before I could meet with a neurologist. The tests confirmed I have nerve damage but we still don’t know the root cause. I have an appointment for May 2nd with the neurologist and I’m hoping to find out what type of neuropathy I have which may help when talking with other people with the same type of neuropathy who have found what works for them. Two excellent sources of information are the MN Neuropathy Association (http://www.neuropathy-mn.org/) and the Foundation for Peripheral Neuropathy (https://www.foundationforpn.org/).
Thanks for the links. And keep us informed on how your neurologist turns out. You have had neuropathy for a long time. Mine has been about 4years and seemingly came out of nowhere. Take care.
Liked by John, Volunteer Mentor
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
Hi I have had peripheral. NeuropThy for about 4 years. It seemed to come from nowhere it was just there. I have been looking for a place to connect with others who have the same problem to see what works for them and mAybe I can help some one else.
Liked by robertlclark, grammydove, jewel8888, keeptrying ... see all
I have been dealing with painful peripheral neuropathy for about 10 to 12
years. My main pain is in the bottoms of my feet but the neuropathy has
worked up to my knees. You talk about a frustrating experience. I
have tried every prescription, compounds, Anodyne therapy, Acupuncture and
Spinal Cord Stimulator. I am on a new and improved Spinal Cord Stimulator
now. I was told when all else fails the last thing they can do is a Pain
Pump. Well I have had that for about 2 years and get a steady dose of
Hydromorphone, Fentanyl and Bupivicaine every day, all day long. I can
also take up to 4 Hydrocodone a day and I also take Lyrica. I have had
Bilateral Endovenous Laser Ablation in both legs and Tarsal Tunnel surgery
on both ankles.
My average pain level is 5 to 6 every day. Now my only hope is that one
of the programs of the new Spinal Cord Stimulator will help. I am
seriously considering going to Mayo Clinic. Would be an expensive trip
Thanks, according to the Doctors and the Techs, the new Stimulator is
supposed to be working wonders on some people. They told me last week
that most patients will get relief within the first programs, I have just
had my 11th and still nothing. But with this type stimulator there are
supposed to a lot of potential programs so maybe there is one out there for
me. The Doctor did say that they would consider it a success if I got 40%
relief. I would gladly accept that.
Gabapentin does nothing for my pain, but makes me weak. Fentanyl
patches do nothing either. I am jealous of people who get relief and
do not have bad side effects.
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Thanks again John I will ask about the patch. Do you also have heavy legs and clumsiness.
My doc tells me to walk but I feel so weak I don’t walk straight. Clumsy like I was drunk. So I do t walk do you get any form of exercise?
You do need a cane for off balance walking or can have bad fall. Might
even need a walker. I have to use one or the other.
Fentanyl always works. You might not be using enough.
I’ve been on a Fentanyl patch for years for my peripheral neuropathy. It’s the only thing that works to keep the burning pins and needles feeling at bay. My strength on the patch is 100 mcg/hr. I replace it at the same time every three days. I really can’t survive without it.
@Pain warrior, My Dr won’t increase the strength of my fentayl patch from 50mcg/hr. In the summer, he’ll let me change my patch from every 3 days up to every 2 days. This is because of extra sweating, swimming, etc. The patches come off sometimes and I need to replace it. This strength is barely adequate and I have to dole them out carefully. I don’t know how long I can be on patches but I can tell you within a few hours when I need to change it. I start “buzzing” and feel listless. Gabapentin seems to “fill the gaps” at 4500 mg a day (1500 mg 3-times a day). I’m wondering how I’d feel with the 100mcg you are on? Any side effects? Loopy, dizzy, rashes? Glad it works for you? Neuropathy is tough and it happened to me instantly. One moment I’m a strapping 60-year old male at the peak of my retirement and the next moment…THIS!
John thanks for your reply. The cause is unknown in my case. But I have constant tingling on legs and arms. Of course it is worse at night when trying to sleep. Sometimes I get a strong pain in my right leg near the knee and one in my thigh. I use a tens machine for the pain but the tingling and numbness doesn’t stop. I also have restless legs and take requip for that along with tramadol. It helps with the rls but no the tingling and numbness.
@rabbit10, That’s the way my neuropathy started. Fought it for months. My Dr didn’t know what it was or how to treat it. I finally went to a rheumotologist/neurologist at Mayo Clinic in Scottsdale. They not only diagnosed the peripheral neuropathy but that I had vasculitis (Wegeners) that caused it. He put me on different meds to see what helped. Finally I settled on gabapentin, cymbalta, fentanyl, (neuropathy), and cellcept (Wegeners). I’ve been doing much better but can’t skip my meds!
My wife’s Dr recommended trying a homeopathic method for her RLS first. I found them on Amazon for less than $10 (50 ct), Hyland’s Homeopathic Restless Legs. When she feels it coming on, usually at night, she dissolves 2 tabs under her tongue and within 10-15 min the symptoms sudside. She & her mother suffered their whole lives. We both had our doctors check it out prior to trying the Rx. No side effects, safe and controls RLS now for over 2 yrs!
I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I’m seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.
salena, I tried around for the Duragesic 50mcg/hr patches which for me stick better and dispense the med well. Other brand not so much. I found them at Walmart, however the pharmacist told me you have to be standing there when their shipment comes in or you are SOL. It goes extremely fast and it’s first come first served.
I have been getting my fentayl Rx filled at CVS, but they are not my insurance co.s “preferred” pharmacy?? So my co-pay is more, $35. Medicare is fine. However, no one else carries that brand. My doctor is a 75 mi round trip (Mayo) so they can only mail my Rx directly to me every month (federal law). I physically have to go down once to drop it off, and again to pick it up, if their order is in. CVS does text me when it is filled but they won’t even accept my Rx until the actual day of. Getting your pain meds is going to get even harder because of the black market and some drs over prescribing. Feds are clamping down.
John, My neuropathy was caused by vasculitis (GPA Wegeners) after extensive nerve testing including surgery to remove a portion of the nerve in my ankle for biopsy (I don’t remember the exact terminology). That was an extremely painful process & recovery as well. My nerves are mostly damaged and not much chance of rejuvenation. Catching it early, especially with Wegeners (incureable) is crucial to your future over-all health. I hope this helps and you can determine what is causing the neuropathy. Keep us posted.
About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I’ve come to regret it a little since it’s gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I’m waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it’s associated with pre-diabetes but I’m not buying that diagosis just because I’ve had it for a long time and do not have diabetes. I think it’s related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I’m really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening…praying that you all will find some relief.
Autoimmunity caused mine, which is now severe. I have Sjogren’s Syndrome but a number of autoimmune diseases can cause it. Just a thought.
Liked by John, Volunteer Mentor, pinkmk
Hyland’s pills for RLS at Walmart (50ct) costs $6.54. FYI…
Thank you for your reply. The one thing I’ve learned from everyone is to keep searching and trying new treatments until you find something that works since most only work for 20 to 25% of people with neuropathy. Hoping you are able to get some relief too.
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