I was told that I have Neuropathy in my arms and legs, the most in my right leg. Lately, my legs have been hurting and feeling heavy. Unless I’m sitting or laying down. Even if I am just standing, I have to sit down after only a short time. I feel like my legs are just so exhausted, they will just buckle at any moment. I have also been having worsening lower back pain. I do have some demyelination in my brain. Has this happened to anyone else? I already take 4800 mg of Neurontin.
Suggest you talk with your neurologist about other alternatives, Cameron. The max recommended daily dose rate for Neurontin is 3600 mg/day. I'm amazed that you are able to walk at all on 4800. See http://www.rxlist.com
Regards, Red
Have same symptoms. Terrible pain and neuropathies legs and arms. Tried over the counter b complex vitamins from walmart which I didn’t have much faith in. To my surprise fixed it 80 percent. Also now looking to get b12 shots. Looking for dr to explain why he didn’t tell me though I’ve complained of huge pain for years. Never even did blood tests to check levels. I am on vit d also from previous dr but he’s ignored simple obvious help of vitamins.
Made an error it should be 600 mg twice a day then 1200 mg before bed equalling 2400 mg altogether.
I have terrible pain going through the left side, ( from hip to toes) taking Lyrica- 300mg a day,
This pain and horrible weakness in my legs started happening not too long after starting vitamin b12 pill form. Also I get very exhausted just cleaning my bird cage. Today I decided to see how I felt doing it all while in my wheelchair. I felt like I did nothing!! I was not the least bit tired!!
I take Cymbalta too, and Morphine 30mg and Valium 10mg for breakthrough pain.
I had all this stuff going on. Albeit, a mild case. But I went out and bought a Drive, Nitro walker--very fancy. The walker is very sturdy and safe. As a result, I'm walking much more and my legs are stronger (main purpose of getting it was to walk my dogs--ended up helping me). Don't take meds because it's so mild, but strong enough that I need adaptions.
Hey Cameron. Just wanted to let you know I understand and you’re not alone. I have extreme lower back pain that came with shooting pains down both my legs but mostly right leg as well. I basically couldn’t walk at all for a month my legs were so weak every time I tried to get up I could feel the weakness in my legs. It sucks. Somehow the leg pains kind of just went away. I was put on valium and hydromorphone for pain and it helped a ton. I did some physical therapy for my lower back which may have in turn helped my legs get better. Hope things get better for you!
Thanks dkel and emily, Hey dkel I am always hot except my hands and feet which feel freezing to me but to others they feel warm. The only time I am cold is when I get a fever. I also get that horrible burning on my right leg and can’t have anything touch it but at the same time it is numb. I was worried about having Lupus Myelitis because of the demyelination I have in my brain.
Yes. I have had the same problem. I was afraid I was going to have to get a wheelchair. I did end up getting a handicapped parking pass for days my legs would just give out. I was never sure how long I would be able to walk. I have back pain as well. I am also on neurontin. It has helped my legs. When they were bad, I did water aerobics because it was a great way to keep active and falling is ok in the pool 
My back seems to hurt always. I think rhuemie is going to send me for some scans or x rays of my spine.
I have had full range of nerve testing in my legs. The neurologist found no problem with the nerves themselves. He determined it was the lupus affecting my legs.
Dkel I do have Raynauds but that isn’t what is affecting my legs. Steinfadt, I had the nerve conduction test on my arms and legs. That’s how they diagnosed me with the Neuropathy.