I was diagnosed 1991 with CMT type 1(a)
I am 67 now and had my knees replaced , my toes staightened etc etc.
I get periferal neuropathy pains on just one toe. It last for 3_4 days and by using the T.E.N.S machine it allows me to get some sleep. Is there anything out there that would be helpful ? I walk with a cane and very clumsy and slow.
Neurontin and Lyrica are medicines used for neuropathy. I take Lyrica for neuropathy caused by Multiple Sclerosis and it works well for me. If the T.E.N.S. unit works well I would try sticking with it, as long as it works, instead of taking a medication.
Do you have drop foot also Tandarts ?
Yes and it was operated years ago, my feet are very unstable , my balance is bad etc etc
Do you wear braces on your feet? My husband does and they keep his feet from dropping. He didn’t want to wear them, at first, but I told him that if he fell and broke a hip he would have to go to a rehabilitation center until he could get around by himself again because I can not lift him. He got the braces and has worn them for many years. They really do keep him from tripping so often.
Hello to Tandarts...... Yes, I also suffer from that dammed Peripheral Neuropathy pain in both feet whilst trying to sleep: Currently I take 100mg of Amitriptyline taken 1 hour before bed: It doesn't stop the pain completely, but does help reduce the ongoing burning feelings: My strange tip ? When the pain gets to much, I move my foot, (sometimes both) out from below the bedclothes, and let it/them hang down towards the floor for 15/20 minutes: I do not know why but I get relief, perhaps hanging improves the blood circulation to our feet ? It's worth a try ? John (Glasgow) ......
Thanks John, will try it
Hello again to Tandarts...... Ps..... Forgot to add, ask your GP to refer you to your Local NHS Health Trust's Orthotics team, and ask them to fit you up with a 'lightweight' aluminum "ELBOW-CRUTCH": What a positive improvement it made to my walking mobility, although whilst it is still slowly deteriorating: I possibly may need 2No. crutches at a future date ? ? ? John (Glasgow)
If you only have peripheral neuropathy pain a few days at a time consider yourself lucky. My pain, burning, pins & needles and stabbing pain started in 2015 and has not let up since. I see a pain management doctor. As it got worse he increased my pain meds. Last year I had a spinal cord stimulator implanted. If you are not familiar with these they send a vibration to your legs and feet. It does not take away the pain completely but it does give me about 30 percent relief. With a remote control you can adjust the stimulation. I still take pain meds just not as many. Living with chronic pain is a #!\=&×"+:. I couldn't think of a nice word to call it. It was just this last year a wonderful neurologist diagnosed me with CMT. So now things are adding up. High arches, hammer toes, drop foot and plenty of falls including a trip over speed bump in a parking lot which tore my Achilles tendon. Then there was my clumsy childhood. Well, you all know those stories. This morning I am picking up my AFOs and shoe orthotics. Wish me good luck & better walking.
I feel for you, slept with my TENS machine connected the whole night. Use 500mg of Lyrica each day , keep up the fight ,
Just ignore the pain, I understand it sound rude. That is what I do for 20 years.
Me too but now in my 60s getting more difficult
Hi Tandarts. Did you find the toes opp helped and in what way pls. I’m 61 with h toes but not sure how opp wld help?
Advice needed! Have you ever been to a private orthotist?
Red blotches on legs and feet
Feeling Devestated and Low
Stop your pain different ways