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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 23, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

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Hi @gailfaith and @jimhd,

Just thought I'd share my thoughts...I use Arnica regularly for pain relief, especially any bruising, swelling, muscle aches and injuries – and now, arthritis! It has worked well for me, but i also wanted to mention that it is a homeopathic medicine. I believe you can buy Arnica as an ointment, gel or sublingual pills (pellets that taste like sugar balls); I've found that the gel or ointment works best for pain, while the pills are good for relieving swelling after dental procedures or stomach cramps.

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Mentor
Jim, Volunteer Mentor | @jimhd | Sep 24, 2017
In reply to @sstouten "Hello; I am new here and have been dealing with Neuropathy pain for several years. I..." + (show)
@sstouten

Hello; I am new here and have been dealing with Neuropathy pain for several years. I go to a rheumatologist and take several medications but still get very little relief. Any tips from others would be appreciated.

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@sstouten

The one thing I would say is that I think you should see a neurologist instead of a rheumatologist, or in addition to. Would you mind telling me what medications you're taking now?

Jim

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Mentor
Jim, Volunteer Mentor | @jimhd | Sep 24, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

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Thanks for the information, @kanaazpereira

I've been using Voltaren gel for arthritis in my hands. For neuropathy pain I have Lidocaine cream, which I don't use every night because it's so expensive. I do use it if my feet are hurting from too much walking or standing, and the weight of the blankets is painful. I have a blanket lifter, but we got a new mattress that's too tall, and I haven't yet come up with a way to make it work. That requires energy, which is in short supply. Right now I try to keep up with the absolute necessities to maintain. Having pain under control, more or less, helps me get moving.

Jim

REPLY
sevey41 | @sevey41 | Sep 24, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

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I forgot when I posted before I did have the spinal stimulator thought sure it would work it did not work my pain got worse and by that night my neck was so stiff and painful I had to go to ER and get a shot. I may go see a neurologist again I went once some time ago and he said you have all the symptoms of neuropathy. With them I tried many medicines also physical therapy, cortisone shots but all to no solution. The last MRI I had some years back said my back was full of arthritis. I too use ointments even canibus sa

REPLY
Mentor
Jim, Volunteer Mentor | @jimhd | Sep 24, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

Jump to this post

@sevey41

I've tried every medication for neuropathy pain that's available, and many others that are off label (usually prescribed for something else, but it sometimes helps with neuropathic pain), including narcotics. I haven't attempted street drugs, though several of my meds are controlled substances, and are sold illegally. Right now, I'm tapering off morphine and Cymbalta. I tapered off morphine once, before I had the spinal cord stimulator, and the pain became way worse, so I went right back on it.

Do you know what type of neuropathy you have? The neurologist is doing tests now to pin down which type I have. I'm hoping that knowing more precisely which one it is will give a more informed treatment decision.

Jim

REPLY
kevinking kking | @kevinking | Sep 24, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

Jump to this post

I don't have any suggestions for medicine that effectively eliminates the pain, but I have noticed that drinking alcohol, especially red wine, increases the pain in my feet. I have eliminated alcohol, and it seems to pay off.

REPLY
sevey41 | @sevey41 | Sep 24, 2017
In reply to @sevey41 "Hi I am new to this sight I live in Oregon. I am now 76 years..." + (show)
@sevey41

Hi I am new to this sight I live in Oregon. I am now 76 years young.. I have suffered with leg pain all my life they called it growing pains. I used to just periodically have leg aches but not all the time. As I have aged it's gotten worse and worse. When I turned 60 noticed new system numbness in my feet along with pain. My diagnosis is severe restless legs(take Myrapex for this) and Nuropathy caused from my back they think I do not have diabetes my circulation is good my bones strong. I deal with this daily I mostly wear tennis shoes with good support,if I wear any other type shoe even really good ones I have leg aches and terrible pain and feet. I have been to many Drs all kinds no one knows what causes the naropothy but agreed I have it. Lots of arthritis in my back they had me on strong pain pills but do not like them. Just manage by being active but pain every single day is what I live with. There is no drug or treatments acupuncture, shots, physical therapy every kind of drug including cannabus every kind of medicine but nothing helps. Wonder if anyone else has this same problem? Myrapex helps but I am OCD and the medicine makes my OCD so much worse.

Jump to this post

They do not have a name for it it's some kind of neuropathy that is connected to my back in some way. I do not have diabetes and good circulation my blood pressure is great. So they do not know what causes it . I take Myrapex for the restless legs that keeps the jerking under control but the pain in my feet and legs is every day. It's been really bad for 16 yrs plus. There doesn't seem to be an answer I just have to get through each day. If I wear any shoe but good tennis shoes I really have a bad spell then. That gets old because a woman likes to dress up a little some times.. Good luck hope you get some answers soon...

REPLY
sstouten | @sstouten | Sep 24, 2017
In reply to @sstouten "Hello; I am new here and have been dealing with Neuropathy pain for several years. I..." + (show)
@sstouten

Hello; I am new here and have been dealing with Neuropathy pain for several years. I go to a rheumatologist and take several medications but still get very little relief. Any tips from others would be appreciated.

Jump to this post

I do also see a neurologist. Just saw him last week. He sympathized with my pain but did not offer any new suggestions. Said to come back in 6 months and he would check me again. I am on Cymbalta twice a day, methotrexate for rheumatoid arthritis, Orencia IV once a month, vicodin as needed, which I only take at bedtime. My hands and feet are painful most of the time with little relief from meds. I seem to get small relief with ibuprofen.

REPLY
sstouten | @sstouten | Sep 24, 2017

I was recently diagnosed with Waldenstrom Macroglobulinamia. Are there any others on here with Waldenstron? Maybe some of my pain is caused from the Waldenstrom. I get terrible leg cramps at night that wake me up.

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loisogden | @loisogden | Sep 24, 2017

I have severe peripheral neuropathy in both of my feet, that has come on very quickly over the last 6 months and is quite painful. I'd like to know what to expect and how to deal with it. I have type 2 diabetes. I also have spinal stenosis and the doctors that I have seen don't seem to be able to determine what is causing the neuropathy. I also have osteoarthritis which complicates the whole picture. I look forward to taking part in the group as I get to know more about the whole process, for now I'm probably just going to watch and listen and see if there's anything that would apply to me.

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