Hi everyone. I've had Sensory Neuropathy for a few years now and can't obtain any help from any consultants. Anyone have any advice for pain relief or a cure?
Hi Jenny, what tests have they done on you to evaluate your condition ?
like have they done a 3 or up to 5 hour Glucose tolerance to test for prediabetes, some doc's think that a simple fasting glucose test will show up diabetes [ a major cause ] but some don't realize that nerve damage can happen even in a prediabetic state, tests for vitamin deficiencies like b12, b1, b6 and vitamin E, folate, toxins, some medications and even to much alcohol or Gluten sensitivity can cause PN and the list goes on and on.
If any of those very basic tests above have not been done, i would find a neuro that specializes in neuropathy to give you the best chance of finding the cause, the cure remains in finding the culprit that's causing your nerve damage.
Some meds may lesson the severity, like Tramadol SR, amitriptyline or anticonvulsants, NSAIDs, Lyrica, if burning is present some have found relief from using Biofreeze and or B1 [thiamine ] taken in divided doses during the day and Benfortamine [ a very strong b1 ]
Hi Aussie. Well done on the info. As much or more than from health profesionals. A Neuro did blood tests and even checked for leprosy due to living in Ecuador and Brunei. I suggested excess alcohol - from net surfing - living in weird countries, water not safe! Diagnosis - SN due to cause unknown prob. virus and cure unknown. Have tried Acupuncture, Hypnotherapy, Massage, Physio to no avail. Have stuck with yoga and swimming. Am taking Benfotamine and using a footbath nerve rebuilder. Am managing to walk - just - but legs increasingly numb and weak. No regular alcohol. Thanx for help. Jenny. Orkney Isles.
Hi Ali. Good to hear from you. I had a sudden onset of symptoms over about 1 week.Tight bands round my ankles and felt like walking on large smooth pebbles. Temperatures were confusing. Cold tiles or water felt hot.Loss of balance in the dark. And I also crashed my car.My husband was away working in South America and I was living on red wine and twiglets but the G.P diagnoses SN due to virus cause unknown and cure unknown. Had useful info from Aussie 100 which may be useful and read my reply to him.I was a supervisor in a nursing home and overnight went to looking after others to needing help myself. Bit of a shock.Can't accept my limitations have always been active and stil try and play a bit of golf but can't manage matches anymore. Use ski poles cos I won't yet use a stick. Best Wishes Jenny Orkney Isles.
Jenny,Our symptoms are very similar and like you, I have been dealing with this for several years. At first there were subtle things like muscle twitches, loss of balance, and my feet burning only after exercise. In January of 2006 the numbness set in first affecting my face and after 5 months it was pretty much wide spread. I still have numbness in a stocking-glove distribution of arms and legs. I also still have numbness in my face and experience weakness on my right side. I am happy to say that the weakness and balance problems have improved but the other issues remain. My biggest challenge is my feet. It is like my temperature regulators from knees down no longer exist. Do your feet or legs turn red, feel hot to touch, and burn?
When this happens I am in total misery and have to put cold packs on them to get relief. I am currently taking 400mg of Lyrica, which has worked well for me. I also take 50mg of Nortriptyline, All-Flex,a muscle relaxer(prn), and darvacet(prn). I have to manage my life to the extreme, always being aware of my surroundings and that is hard b/c it is so different from who I was before. Thanks for writing me back.
Dear Ali. Looking back, although the main onset of symptoms was sudden I had had weird things over some years. 1yr. I bought 3 pairs of golf shoes thinking the feeling of crinkled paper or lining inside was the shoes fault and one night after a party a sandal strap had cut my toe quite badly and I hadnt felt a thing.It wasnt the shoes but my feet! Do you have good support from health care professionals and family?Going from very active to not Ive put on weight and so has my husband and I feel guilty that my condition is affecting my husband in this way.Monday tomorrow so off to the pool - that I can still do tho. its a problem getting out! Best Wishes Jenny
Ali - another thing. Aussi100 who also replied to me mentioned Biofreeze for burning sensations. I get more stabbing pains and tingling from my toes to midrif but mostly my legs are numb and feel huge and swollen and Im just so clumsy. Jenny.
I have been told that swimming might be a good exercise b/c it takes most of the weight off of your body. i went to the gym for a while and used a recumbant bike and did minor weights to help strengthen my muscles. I think the recumbant bike was good but for days after a minor workout i would be exhausted. planning to get a bike for my home really soon. I don't know if you can ever get use to the constant numbness. my neurologists says that is the one symptom of neuropathy that can't be addressed. I really don't have much hope of regaining the sensation that i have lost because of the length of time that has passed. personally, i have found that rest is a key ingredient for making it through another day with this condition. Ali
Have had no obvious improvement with the rebuilder or any of the other things Im trying but then how long is a piece of string? Would I have deteriorated more had I not been using the rebuilder, taking B12, Manuka Venom Honey, Acupuncture, Hypnotherapy et al. You can't give up but neither can you continue to throw money at it ad infinitum.If I were honest I haven't had any improvements with anything Im trying but would get very down if I dwelt on it. Keep giving myself goals i.e. Hope I can still walk to go to that concert or on that holiday and now we're moving house next week. How much help will I be for that.Am going to start real excercise programm after house move. Keep smiling.
I was diagnosed with ME/CFS about 13 years ago and had numbness around my groin area and bottome of my back. As the ME/CFS fatigue subsided the numbness continued to get worse. 13 years on I feel I am rid of the cfs but still can't budge the numbness. It is really weird as the sensory thing I am missing is touch, I can feel pain and hard scratching but it feels totally numb if I touch those areas.
I had like attacks of really strong numbness, this would subside and leave me with loss of sensation that is the only way I can describe it. I have been rules out of having multiple sclerosis etc so I don't really know what is causing this....all my tests are normal. What is worrying me now is that my left leg is becoming weak and I am starting to feel slight burning, the numbness has been spreading gradually to different areas over the years.