Lizzy October 2014
Neuropathy is that painful, numb feeling in legs, hands, and feet. Because the extremities are numb, you can also hurt or cut yourself and not even know what. We asked our Facebook friends how they cope with it. Here’s what they said:
Shirley E: I have neuropathy and vasculitis which I have numbness to my knees. I stopped Lyrica due to blurred vision. I take Tylenol for pain and also potassium gluconate for cramps. I find sleeping on my back and elevating my legs on pillows at a 45-degree angle helps. It relieves numbness and back pain. I pray and read my Bible right before sleeping and find that praising the Lord gets my mind on Him and He helps me get my mind off of my problems.
Sonya L: Lyrica, Alpha Lipoic Acid, B12, and stronger depending on if I can’t deal with the pain. As for shoes, Crocs have been my go-to of choice.
Victor S: I need to be careful to not let my feet or hands get too cold.
Jeanine M: Alpha lipoic acid, b-12, b-2, b-6. Marinol
Chris P: Lyrica and Crocs
Julie B: Neuropathy was first “symptom” of multiple Myeloma—both in my arms and hands, later legs and feet. Worse after sct and tx. Numbness, burning, shooting pains and sensory loss. Also had extreme swelling. Pain meds help. I have learned to live with it. Massage helps and seems to desensitize feet and hands especially. I take plaquenel (a malaria med) for swelling and inflammation, which has mostly resolved that.
Frances V: My hubby had it bad. He took Lyrica. He would not let me touch his feel to rub them with anything. Pain meds helped some.
Patti S: Howard has it in his hands and feet. He takes tramadol and gabapentin. He wears a fentynal patch and takes oxy for the breakthrough pain. Sounds like a lot, but keeps it down.
Julie W: I’ve had it forever it seems and it’s HORRIBLE!!! Started out on Amitriptyline and Neurontin. When I maxed out on those, they changed me to Lyrica. The Lyrica worked GREAT, but made me a disoriented mess and I couldn’t drive! But I had to go back to original meds, but they didn’t work anymore! I was changed to Nortriptyline and Neurontin and have gotten about 80% relief! I had my first visual of how bad my feet have gotten yesterday. I bumped my foot on a chair. It didn’t hurt at all. I went to the bathroom, came back out and when I reclined in my chair, I noticed that half my nail was gone on that toe! I didn’t feel it at all…still don’t!
Pamela C: My husband Sam has neuropathy in his feet… That’s actually how we found out he had multiple myeloma. Thankfully, it’s been three years and two back-to-back transplants later, but the neuropathy hasn’t worsened. At night he puts Vics Vapor rub on his feet and slips some socks on. I breathe better and he sleeps better. Sounds weird, but it helps the stinging.
Donna D: Cymbalta 60 mg every other day. Walking and exercise.
Kathy C: I just have smoldering multiple myeloma – MRI’s a few weeks ago show no myeloma and lab work O.K. But I have the peripheral neuralgia and lots of arthritis pain. My doctor put me on cymbalta about 6-8 weeks ago but I hate the dizzy groggy feeling (60 mg).
Sandy W: I got neuropathy in my feet and ankles from taking thalidomide. I take Lyrica for it. I was taking 600 MG a day but I cut back to 150 at night and just live with the discomfort during the day.
Lillie K: I take neurotin 300 mg 3 or 4 times a day. It helps some. I can sure tell when I haven’t taken the neurontin. I have the burning pain yet numbness. It is worse in my feet and hands. My back hurts very badly.
Dorothy G: I take 400mg 4x a day of gabepentiin every day, I also take topamax along with that, 200mg every day.
Chris G: I take gabapentin and duloxetine (Cymbalta) and that helps as long as I am not on my feet for too long on hard surfaces. I have not found any shoes that I can tolerate very well. The cushioning always seems to be in the wrong place…the heel, not the ball of the foot.
Joanne V: Yup and nothing works. I will not put anymore toxins in my body.
Julie v: I had neuropathy really bad for months after my auto SCT. It slowly subsided over the years, but never fully disappeared and continues on, as I continue on with Revlimid 10mg. Best advise I have… keep moving as best you can! WALK, walk, walk!! And HYDRATE all the time! Water, water, water and I also mix 100% cranberry/juice blends with water and sparking water.
Lin C: I did, as I get further out from chemo, it seems to be dissipating. I feel blessed!
Sharon H: gabapinten
Londa L: I take Neurotin 600mg 3 x a day
Ginger F: My hubby has neuropathy really bad from his thighs to his feet. He uses flex aril to help and a heating pad when it get really bad.
Olga G: I take Gabapentin 300 mg 3 times daily. My symptoms are numbness, burning sensation, and sharp pain.
Patty S: My husband takes neurotin and amitryptaline
Sherrill F: Neurontin
Vicky N: I am on Tylenol 4 x5 a day minimum
Beverly M: I have it in my toes, I massage them a lot, and love summer when I can wear open shoes, which feels much better.
Frederick D: For neuropathy make sure that you take ALL B VITAMINS. They are important for nerve function. STANDARD PROCESS is the gold standard for quality vitamins. Their vitamins are 100% all natural and contain B4 which is missing in most all commercial vitamins. Alpha or R-Lipoic Acid, N acetyl cysteine, l carnitine– excellent anti oxidants to prevent free radical damage. Also consider taking serrapeptase or nattokinase for proper blood circulation.
Diana L: gabapentin
Dave F: I take Gebapentin, which takes the edge off of it but I still have numb toes. I was prescribed EMLA cream and it works ok but it’s a bit messy to apply.
Lizzy S: Peppermint essential oils mixed with fractionated coconut oil rubbed on my feet and calves every morning. I never go barefoot. In the summer, I live in flip flops and in the winter, it’s Uggs all the way.
Mike H: I had neuropathy so horribly by the time I went home after ASCT I couldn’t return to work. Tried gabapentin, lyrica & cymbalta. I finally went to a higher dose of cymbalta to keep it reigned in, but still need oxycodone to be able to have a sort of normalcy.
Angela W: I take metanx or L-methyl B6-B12. It seems to help some. I still use a pain patch that I hope will come off soon.
Bianca B: I’m using Bebapentin. It does help but I still feel it, especially at night.
Migdalia B: My husband takes oxyconden and oxycontin for the pain!
Aliece T: I take the OxyContin and Lyrica when pain is at its worse, which is usually in middle of night. My husband has to massage my hand and I run it under hot water.
Sarah L: I have neuropathy in my forefoot. Fortunately it’s the numb kind, not the pain kind, but occasionally the nerves get irritated and it itches like crazy. The only thing that helps that is Bert’s Bees hand salve. I think the eucalyptus oil in it is soothing to the nerves.
Kim S: Vitamin B6 has helped me. I was also told fish oil and amino acid helps.
Kevin G: I have it BAD as well. I went to a pain doctor and I’m doing a thing called NEUROSTIMALTION THERAPY. It basically tricks your brain from feeling the pain. Two small (50 cent piece size) probes in your back. One up by the shoulders and the other by other hips. Sends electric pulses that you can control the speed and strength to your hands and feet. No need for Fentanyl patches or OxyContin anymore. It does wonders for the pain
Mark B: I have it bad after my recent stem cell transplant. I have tried icy hot patches on my feet, tylenol, and nuerontin. I was also told to try riding an exercise bike to increase blood flow which help a little but that was before my transplant. I haven’t found a solution.
Kevin G: Exercise helps me (walking and riding a bike), lots of WATER 12oz an hour that is what I try to do. I’m in the restroom a lot.
Lisa K: I do IVIG and I take 1800 Gabapentin. I also take 15 MG morphine sulfate as needed at bed time 50 Nortriptyline.
Maria P: My husband has it really bad to the point where it’s too painful to walk. Gabapentin did not work. Lyrica was 150.00 on my insurance (couldn’t afford it). Heating pad works temporarily. He takes morphine 25mg in the am and 25mg in the pm, also dilaudid 4mg as needed, b complex and lots of water. He’s up trying to walk a little more than before. We were told not to be inpatient it will get better.
Donna F: Gabapentin works for me. It was so bad in my feet I couldn’t even walk. If I try to cut back I can tell the difference right away!!
Michael C: I had neuropathy and they prescribed Gabapentin. Had it for about 3 months then it just went away.
Sonya L: Lyrica, Alpha lipoic acid, oxy…
Teddy T: I use Gabapentin too and I also wear socks to bed and that helps at night. If your feet are worse when lying down then what’s happening is it’s in your back that’s triggering the neuropathy. Our vertebrae deplete with MM and it might be causing a pinched nerve that’s hitting your feet. I notice if I move around and add more pillows, I can get comfy. If you get up and the pain goes away when you walk around, then it’s in your back so tell the doctor and maybe they can get you some shots of steroid from a pain clinic. It works for me and I also noticed my Neuropathy isn’t as bad.
Donna P: I have had C.I.D.P. (Chronic Inflammatory Demyelinating Polyneuropathy) for 15 years and I was having I.V.I.G every 3 mounts. I had a stem cell transplant because of my Multiple Myeloma and now my C.I.D.P. isn’t as bad, my doctor has me on Neurontin 300mg twice a day. So far it is working.
Joni S: Using Gabapentin 1100mg 3x a day, for bilateral peripheral neuropathy. I take 150mg Elavil at night. Fentanyl 25mg patch change q48hrs. Oxycodone 5mg as needed for breakthrough pain. When I do my Neupogen injection I have increased pain in bilateral femurs & sacral pain (had pathological stress fracture across my sacrum).
Sara G: My mother has reversed her mild neuropathy with toe tapping. She does it twice daily as often as she can.
Liz S: Mine is much better thanks to accupuncture, neurotin, alpha lipoic acid.
Michelle L: They’re starting me on lyrica
Peter W: I am using lyrica, morning and night to mask neuropathic pain in my feet. It works fairly well masking about 75% of the pain.
Cathy S: I’ve been using gabapentin, three times a day. Doesn’t take it away completely but I’m satisfied.
Karen K: I got severe neuropathy from valcade five years ago. I take neurotic three times a day. It is helpful but I can’t exercise like I want to. Bike riding is the best for me.
Janice R: Mine started with chemo, and got really bad at the sct. Both feet and legs, both hands and fingers. Gabanentin caused hallucinations. Nortriptyline helps a little. Can get insurance company to approve Lyrica. Went to a program with a chiropractor that was 3 months, not covered by insurance was 4k. Had vibration, laser and tens electrical. Had some exercising. It also helped a bit. Now have it in feet, and ankles, and fingers above the last joint. Hard to walk, picking up things is hard, but at least I don’t have the constant pain. I feel lucky with no pain.
Rhonda T: They gave me lyrica but I haven’t started yet. I have it bad in my feet. It caused me to have a bad fall on the sidewalk. I had to use a cane for a month.
Barb M: After my SCT my legs started to get better – now almost 6 months post – I have very little discomfort. You will get thru it – it sucks right now but try to take as many breaks as possible and don’t put yourself in a situation that you can’t sit down right away. Good Luck.
Susan D: My husband has peripheral neuropathy in both feet. He is 7 years post auto sct. 10mg maintenance revl. Walking walking walking helps. Recently having a little dizziness on standing but passes. Then out with the dog again.
Silvia O: Oxicodone, massage and walking helps a little but I think there’s no cure for neuropathy.
Kathy A: Neurontin 300mg TID and cutting Velcade to 50% dosage has helped greatly. Just a little annoying numbness in toes now. Tart cherry juice at bedtime and I’m sleeping better than I have for years. Which helps my energy level, too.
Joanne L: I take 300mg of Gabapentin 3 times a day for the neuropathy. I have it mostly in my hands and arms. It’s a real pain. I have to stop every 10 minutes or so and let my arms hang until the numbness goes away. Some days are better than others, but when it’s bad…it’s bad!!! Stay Positive and stay strong!
Susan A: I got some neuropathy from Velcade, some numbness in my feet. After SCT it was worse. 2+ years later it has gotten much worse with sharp pains and all over aching. Tried neurontin and Lyrica, which did nothing. Now on Cymbalta which may be helping a little. Doctor gave me a compounded cream.
About Lizzy
Lizzy was diagnosed with Multiple Myeloma in January 2012. Upon learning of her illness, she promptly left her husband and moved to Utah with her two children and entered treatment. Following a tandem stem cell transplant regiment, she is doing well and is in maintenance therapy. She chronicles her journey at www.lizzysmilez.blogspot.com.
http://www.myelomacrowd.org/neuropathy-feet-hangs-legs-help/
I have played piano for years but am now finding it hard to keep my foot on pedal due to neuropathy numbness. Has anyone else struggled with this or found any way to work around it?
ReplyDelete