Living with Neuropathy - Welcome to the group

@sunnyflower
Thanks Sunny. You did mention this before but I had forgotten about it. I will check them out to see if they allow a trial membership. If they would let me check it out a bit first I would certainly be more interested. I have a high skepticism ratio but you are really keen on them and I put a lot of stock in what you say so I will take a look at their site. Thanks, and hope all is well, Hank

@straightaway22
Hi, have you started taking Maximum strength Neuropathy support formula? If you want to try it, it does not appear to me to have anything harmful in it. It will either help you or not. After the first bottle, if you have not gotten any benefit, just move on. It has a few of the things my wife takes for her neuropathy, i.e. lipoic acid, benfotiamine, acetyl l carnitine, b12, turmeric and others. Of these, she has noticeable benefits from her turmeric (curcumin) supplement more than some of the others, but some people swear by lipoic acid (we take r lipoic acid), b12, it's kind of all over the map depending on the person, just like everything involving neuropathy. It also contains some herbs such as feverfew, skullcap, and others, which might be good, I do not know. The question I would have would be to the quality and source of each different component, which is why we take things individually after researching them. Best, Hank

Hello Everyone, whenever I want to introduce a new supp to my arsenal, I call the pharmacist (they know more about drugs than doctors per my pharmacology continuing medical education). They often tell me that the supp has contraindications with one of my meds. Often the supp can either diminish or augment the therapeutic dose of one or more of my meds which could be dangerous. So please make sure you do the same, even if you are only taking one medication! I give them the info on the bottle they need and they can always find that supp, at least so far over the years. It can be potentially serious. Be safe, stay well and many blessings, Sunnyflower 😊

Hello Everyone, whenever I want to introduce a new supp to my arsenal, I call the pharmacist (they know more about drugs than doctors per my pharmacology continuing medical education). They often tell me that the supp has contraindications with one of my meds. Often the supp can either diminish or augment the therapeutic dose of one or more of my meds which could be dangerous. So please make sure you do the same, even if you are only taking one medication! I give them the info on the bottle they need and they can always find that supp, at least so far over the years. It can be potentially serious. Be safe, stay well and many blessings, Sunnyflower 😊

Hello, I have just been diagnosed with small fiber neuropathy and still going through testing to determine the cause. My life drastically changed after returning from a run back in November. My foot felt numb and then the next morning I had burning pin in my buttocks and across my shoulder blade area. The burning numbing pain has spread through by entire body. I am on gabapentin 300 mg 3x a day. When I increase to 600 mg the bloating is beyond painful. Learning to deal with not being able to wear most clothing as it causes such pain, especially a bra, socks and underwear. I am lucky for the time that I am working from home, but if called back in, I am not sure what I will do. Sitting in the car for a hour commute just will not be doable let alone sitting at desk. At home I have a standing desk and can frequently change positions and wear a bathrobe. Learning to cope has been an adjustment as I was extremely active - running 3 to 5 miles, biking 10 to 20 miles on week. Now walking is painful on my feet. I find that mornings our better. Any information anyone would like to share would be helpful and appreciated!

Thank you for such a warm welcome, I appreciate it. This disease has progressed for me so that it frightens me. I am hopeful to find any treatments that are new or helpful. I hope to contribute in any way I can, if just to listen and commiserate with others.

Beth - I have been fighting my neuropathy for 50 years. Typically, it waxes and wanes for younger people, but it has hit me hard the last ten years. Five years ago, as I was googling the disease and treatments, I came across a study done in Europe that stated success with IVIG. Success defined as less pain and slows the disease down. I showed it to my neurologist and he checked into Medicare coverage. Yes, Medicare covers it. But, very expensive. I have Medicare/TriCare for Life and that covers everything. But a friend here only has Medicare and she cannot afford to have the treatment every month. I spend six hours for two consecutive days each month receiving the treatment at an infusion center. Knocks the pain down from 9+ to bearable 4 to 6. After three weeks, pain starts to ramp up again, which is common based upon my research.
Nerve diseases are extremely tough to treat. That’s the verdict from my five neurologists. Think MS - a nerve disease that gets a lot of money for research. Nothing yet. Treat the pain. I used to be a long distant cyclist, a racket ball player, and a runner. Three years ago I was down to walking several miles per day. Lost that. But I still have my arms and I took up swimming. Legs don’t work in the pool, so I use those neoprene swim gloves to compensate. Park my walker and slip into the pool. Looks funny with my big gloves and my Pull Buoy between my legs, but it works. More exercise = better sleep = less meds at night.

Eric

Beth - I have been fighting my neuropathy for 50 years. Typically, it waxes and wanes for younger people, but it has hit me hard the last ten years. Five years ago, as I was googling the disease and treatments, I came across a study done in Europe that stated success with IVIG. Success defined as less pain and slows the disease down. I showed it to my neurologist and he checked into Medicare coverage. Yes, Medicare covers it. But, very expensive. I have Medicare/TriCare for Life and that covers everything. But a friend here only has Medicare and she cannot afford to have the treatment every month. I spend six hours for two consecutive days each month receiving the treatment at an infusion center. Knocks the pain down from 9+ to bearable 4 to 6. After three weeks, pain starts to ramp up again, which is common based upon my research.
Nerve diseases are extremely tough to treat. That’s the verdict from my five neurologists. Think MS - a nerve disease that gets a lot of money for research. Nothing yet. Treat the pain. I used to be a long distant cyclist, a racket ball player, and a runner. Three years ago I was down to walking several miles per day. Lost that. But I still have my arms and I took up swimming. Legs don’t work in the pool, so I use those neoprene swim gloves to compensate. Park my walker and slip into the pool. Looks funny with my big gloves and my Pull Buoy between my legs, but it works. More exercise = better sleep = less meds at night.

Eric