I am new to this community. Ifeel the same way. Ihate all of the meds that Iam on, however Ihave to be able to work and take care of my son without lying down to rest all of the time due to pain. Ihave nerve pain also, from a shingles episode. Have you tried a TENS unit? Ice also helps me. I don't know where your pain is. Iam looking into a spinal cord stimulator or a pain pump infusion of lidocaine. Idon't know if anyone else has had luck with these. The meds Itake now, make me hot and swollen. Tegretol and Nucynta.
Have you already tried Lyrica and gabapentin? They are for nerve pain specifically. Nucynta is a pain reliever usually after surgical procedures and works on most pain receptors in your body. The other two drugs I have mentioned are specifically nerve pain. Do you keep up with a good Vitamin b-12 and magnesium, calcium supplement they play a big role in nerve function. I also take a good Co-q10 for muscle pain.
I use a magnesium (Epsom Salt) spray on my legs. I swallow a mix of water and gallium nitrate. I take Low Dose Naltrexone. I mix iodine into water. I take melatonin. Benadryl keeps some nausea away. I take several vitamins. I eat salt with water, and seaweed (seaweed has iodine in it) I don't know why, but my Albuterol inhaler helps with pain over all. I use Kava kava root during flares, and my period. Magnolia Bark has helped. Garlic, and DMSO have helped. I take a specific vitamin B, because my body can't handle other types. Tumeric and ginger can be helpful, but don't taste great. Menthol rubs can be helpful. I hope something works for you! =) T
Wow. What do they think caused the nerve damage? Was it just the immobility, or something else? I have met some people w the same problem. Neuropathy t/o body after being in a coma. I wonder if the Botox injections would help you. Does ice help? How many years have you suffered with this? Is it getting better, staying the same, or getting worse? What do you find helps your pain? Do you have muscle weakness too and pain, or only pain? Numbness and tingling? Do any of the "nerve" medicines help you? They do make a TENS unit (it may be NMES too) specifically for feet and lower leg neuropathy. A company called EMPI makes it. The latest treatment that Ihave seen medically is using the Botox. My neurologist wants to inject me w it in the place of my PHN. OMG, that scares me, but if it helps to control the pain so Idon't have to take as many meds, Iam game for almost anything. Ialready get Botox for my migraines. It really helps them. Thanks for talking w me Triquetra. No one understands nerve pain, unless you are suffering from it.
Well I have been suffering for 7 years now it ate up so much of my muscle (I think they call it atrophy) that i can no longer use my foot or most of my bottom leg on the left side. I thought I was tollerating it well but recently its been kicking my butt Im in so much pain but do not want to take pain killers. I was 18 when they put me under for pheumonia that quickly turned into double pheumonia. Also had ecoli in my blood stream they are not sure what caused the nerve damage still to this day.so many ppl told me it was temporary now 7 yrs later I also have foot drop and frozen joint have not been able to stand for Im not really sure i am 25 now and use a knee walker to get around.. better than a wheel chair at least. Its been a long hard road for me I am however on some nerve meds such as lyrica , gabapentin, tramadol , and elavil. Also have muscle relaxers and 800 mg motrin. I was doing okay not great for thelast year now its like full blown attacks like being elecruted over and over. Ice or anything cold burns also anything too hot. I was born with my left hip turned inwards they say maybe it was in my genes but mostly I just get a bunch of theories. As for injections I am petrified of needles of hospitals too lol. I told them no and continued telling them no.now im not sure maybe i cant do this alone maybe its making it worse. Im going to stop playing super woman and give in to something .. anything. Im pretty stuborn as you can probably tell. I have been in and out of physical therapy since I awoke from my colma most has just given me false hope. Now sciatic nerve in my left hip has come to play .. I go to therapy for that mostly. I keep being told that its not likely I will ever walk again and as I look down at my left leg and foot thats skinnier and smaller than my right. I think they might be right.
That's awful! I assume that you have a tried a MAFO, or it is too painful to wear. There is an AFO, too (metal uprights attached to a shoe) that would help you walk, but Iam sure that you have already gone there... Ialso don't know what your quad strength is like. What are the "attacks" like? How long do they last? Do you have any idea what can set them off? Was surgery ever considered for your back? Interesting that the TENS unit made it feel like it was on fire. Are they addressing your pain in PT? I hope that they are treating you well. :) Can you bear any weight on your L foot? Have you tried aqua therapy (making sure it is in a therapeutic pool w warmer temps.) Good luck, and hang in there! Nerve pain is so brutal. I was told by an MD once, that nerve pain is "pain at its purest".
Triquetra have you tried heat moist packs . I make mine by using 2 large wash cloths sew three sides together add just plain white rice you don't want to make it too full. Sew up 4th side I usually put in the microwave on 3 min. Put it where it is hurting get under the cover it seems to stay warm for approximately 3 hrs.@ a time frame. You can heat for less time if needed.
Oops hit the wrong button lol. I can't take the cold on my joints or muscles either. I have a Syrinx inside my spinal cord called Syringomyelia, I also have osteoarthritis and Fibromyalgia as other medical problems. I hope this helps you.
Yes I have tried a brace.. hurt alot and could put no weight through my foot . Surgery was brought up but quickly dismissed for theres no guarantee it wouldnt come back. And would put me through more pain than I am in now. These past few nights have been the worst for me. Attacks can last days and come in waves . I've tried all kinds of therapy .. its just so fruitless they put you in pain to get no results of months and months of hard work. I am going to talk to my Dr. bout maybe some kind of injections. Havnt tried that yet been to scared . I had a nerve block done in 09 thats when everything got worse plus it ft like I was being stabbed in my spine. The nerve damage got severe thats how I was diagnosed.