Hopeless and Discouraged, again! Seeking any advice.

Hi Ann. It sounds like you're going through a lot. First off deal with your fears and feelings of despair and hopelessness. Try to let them go by feeling them and breathing. Try to meditate and check out clearing techniques to let go of emotions. The Sedona method is helpful. David Hawkins and others show ways to let go of painful and negative thoughts and emotions. Also have you tried binaural beats? Check out Good Vibes and try listening to Miracle nerve regeneration video. Try without headphones first. It helps a lot of people with their symptoms. Also practice envisioning your future with the health that you want. Practice that and try to feel grateful that you are already healed. Say positive affirmations to yourself. I am healthy, happy and whole now! Hang in there things will get better. We have to really deal with our thoughts and emotions because that can really have an impact. Take care

@annregister - Ann, to piggyback on what @dbeshears1 said about 5 hours back, she is absolutely right, this forum will help. I live in a small beach community and do not know one person with peripheral neuropathy. Then, I bumped into this forum and what do you know, there are others and many out there with similar issues and symptoms. I don't think the medical community can fix this problem; some are trying. I have sensorimotor axonal polyneuropathy as well both small and large fiber. My dx came thru Mayo. I am sorry to hear about the difficulty you are having. Would you consider professional counseling and if so, check with your insurance as some may cover the cost or you may have a small co-pay. Some are available by zoom. I wish you the very best. Remember, you are not alone in this.

Just wanted to say thank you for your service. My husband is a Vietnam Vet as well and was heavily exposed to agent Orange. Can any of your problems be from your service? I hope you have filed for benefits as they are constantly adding new things.

Have you tried compression gloves. I have Raynaud's disease, the blood just suddenly stops flowing to the ends of my fingers when I get cold. They are painful, and I can actually get Frost Bite if my hands are not warmed immediately. Compression gloves have been wornderful. I also make little hand warmers out of fabric for the pocket and rice for the filler. Put the packet in the microwave for about a minute, put it in your coat or jacket pocket and then your ands. Warm and toasty in minutes. Hope this may give you some help
Gina5009

I have Leukemia which was linked to the contaminated water at Camp Lejeune. The VA awarded 100% disability for that. Problem is I was already rated at 100% combined due to my combat injuries. So thanks for nothing. I was exposed to Agent Orange in Vietnam. I saw that stuff being sprayed over the DMZ and we went into that area a few days later. I’m waiting for the hammer to fall. Several of my friends who served with me developed Parkinson’s and/or cancer. You gotta love how we were treated while in the service. Expendable is my choice of words.

I have not tried compression gloves but I will order a pair just to see if they give me the same benefits that you have experienced. CMT is a hereditary disease that comes down on the X chromosome. Thanks mom and grandma. There is no cure for the various CMT diseases. Sensorimotor Axonal Polyneuropathy is an acquired disorder. Again, not curable. I do have two artificial wrists as a result of a gun shot wound while serving in Vietnam. My wrists, fingers and hands have always been an issue. But I’ll try the compression gloves.

Thanks

I am so sorry to hear about your wrists. I cannot immagine the pain and difficulty this must cause you. I have two knee and hip, replacements and a shoulder replacement but this was a decision I made, and a bad fall. Raynauds is another one of those diseases of unknown origin. It is apparently caused by the Sympathic Nerve System, and it is progressive. There is no treatment for it, except to be aware of what it is capable of doing and take the necessary precautions against Frost Bite. The little "Hot Pockets" are really helpful in the winter also.
I will remember you in my prayers.
Gina5009

Here’s an air hug for your and your husband’s journey. I get totally what you mean….doctors don’t talk amongst each other.

I do have a therapist that I talk to every Monday. He is helping me make since of this pain and process it all. I have learned through talking with him that I can endure a lot of pain but mentally, I’m not strong. I do not want to burden anyone so I have put a smile on my face for a long time. I literally can’t do that anymore. That’s why I made the statement….this pain is taking over my life. I just found this forum just by chance a week or so back and I’ve already learned so much and gain much more hope than I’ve had in a long while. Thank you for your kind words of encouragement.

I am truly SO sorry you had to deal with that type of behavior you describe. It IS so devastating and depressing to deal with such behavior, especially when you are already feeling frustrated, angry, etc. I had a situation where it took almost ten years from the time I started having a condition that was extremely painful - and invisible to others - saw several medical/dental specialists, had multiple therapies, surgeries, etc. I worked in a hospital and yet still was not believed including by co-workers.
I am hoping you can find some true relief in your near future.