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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
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.
Replies to "Hi I am new to this sight I live in Oregon. I am now 76 years..."
@ jimhd , gailtfaith here. I notice there are many topical things that people are referring to on Connect for their neuropathy, but I don't remember seeing anyone using Arnica (Arnicare) by Boiron. It is NOT a Rx item. I've even seen it for sale in the grocery store along with other analgesics. . Some years ago someone mentioned that product to me and I use it, BUT I do NOT have a neuropathy. Just back pain and for other misc pain. I only have used the cream, but I just learned that it also comes in a gel formulation. My local pharmacist only carries the gel so that may give some indication which formulation works the best.
Gail, @gailfaith . I do remember someone mentioning Arnica about 4 years ago, but I don't think I ever tried it. I think that I'll get some tomorrow when I go to church. Thanks for the reminder.
Jim
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.
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
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
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
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.
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...
Boy, do I know about the shoe problem. I have enough shoes for 10 men, but I'm going through them now and getting rid of the ones that hurt my feet. I wear a pair when I have to go to town, which always means a lot of walking. That's my test. I have a lot of insoles that help cushion my feet. I've started buying shoes on the large side, to leave plenty of room for whatever insoles, or combination of insoles, work best. I keep some shoes that I know I can't walk far in, for days when I just sit in meetings or the recliner. I have one pair of slippers that have just the right amount of cushion that I put on as soon as I step in the house. I make myself only wear them indoors so they'll last longer.
Anyway, shoes become a big deal. The style now is to wear casual shoes with a suit. I haven't made that plunge yet, but I may soon.
Jim
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Welcome to Connect, @sevey41 .
I have neuropathy, as well. It's most noticeable in my feet and almost to my knees. I tried every medication, but not acupuncture. I've been taking morphine sulfate and Cymbalta for a few years. In June, I had a spinal cord stimulator implant to relieve the pain in my feet, and the pain is about 80% better. Now, I'm almost tapered off the morphine and Cymbalta, and the pain hasn't gotten worse.
Have you considered having a spinal cord stimulator implant? I'm certainly an advocate for it. The new Burst DR doesn't cause any vibrating sensation and is MRI compatible. In the past decade of my 67 years, I've had several MRIs, so that was a consideration for me.
Yesterday, the neurologist took 3 puncture skin biopsies to determine what type of neuropathy I have. The only pain involved was the shot of numbing medication. It will take 2 weeks to get the test results back, and I think it will help him know better how to treat me, and it may tell me what to expect as far as the progression is concerned.
If you haven't already, these are a couple of things you might talk with your neurologist about. One thing that helps me is Lidocaine cream. It numbs the pain for a couple of hours, but it's quite expensive, so I mostly only use it at bedtime. Someone I know swears by Blue Emu. I hope your neurologist will do everything that's available to help you.
Jim