Hopeless and Discouraged, again! Seeking any advice.

Posted by annregister @annregister, Apr 26, 2023

I was diagnosed with sensorimotor Polyneuropathy and small fiber neuropathy. I have tried everything, with really bad side affects. Just today….I went to pain management (1st time) and I was told that it looks like I’ve tried all the “go to” medications. What they suggested was to lose weight, exercise, get my diabetes under control. Well….my primary Dr. took me off of my diabetic meds because he said I had my A1C under control and I would love to get back to my life….walking three miles a day, chasing and teaching first graders, and driving. So now what????? I am out on disability through work but that only last a year. I’m so stressed out. I’m in extreme pain 24/7, in my hands and feet. I don’t know where to go to from here. Why won’t drs. listen instead of making us feel like it’s our fault that we’re sick and in pain? Any advice???? I will listen and try just about anything at this point.

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I have Raynaud's disease, and I sometimes have hand swelling from a Radical Mastectory and Full shoulder Replacement. Occassionally my hands swell and become very stiff and become quite painful. At these times I put on my compression gloves. The fingers are out so I can go on doing whatever chores I like. It is remarkable how soon my hands are back to normal, and no pain. The gloves also warm my hands, and this is an additional great plus to the situation. Hope this maybe some help to you
Gina5009

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@ssjohns

Hug received. Thank you. I am so glad I joined this group. It helps to talk about your experience and vent a little with those who completely understand.

Sandra

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Stay with us...we need you as much as you need us.

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I'm also an ex-Marine and VN vet. I was living abroad when I went to see a dr. about all the symptoms I was experiencing: every PD symptom except being "frozen." I went back to the states only to find out that our government had taken away half of my Social Security for the rest of my life because I never bothered to sign up for Medicare Part B--useless outside of the U.S. They deducted 10% of my Social Security for each year that I hadn't paid into it. l was recently evaluated by a VA contractor for health factors relating to Agent Orange exposure or from drinking toxic water while stationed at Camp LeJeune. I did receive a 20% service-connected rating for the chronic pain and nerve damage from shrnapel wounds to my arms. I could have received this compensation back in 1971, but didn't think I deserved to get the money that someone much worse off than myself should receive. Anyway, I'm still waiting for a decision from Veteran's Evaluation Services on getting a higher disability rating than the 20% which has gotten much worse over the years. I'm not one who complains about pain--am still able to practice martial arts (modified versions), go surfing (without being able to pop-up on by board), and play tennis (even though my serve is a major liability when playing matches). I've gotten much worse lately, awake at night with pain if I roll over in my sleep or jump up from lucid nightmares; and my wife notices when I fall--I explain to her that it's from hip injuries from many years ago) or exhibit signs of dementia--both side effects of PD. I've never told her how much pain I'm in as she worries enough. If I do get compensated, as I well should be, we're going to move out of this stinking country ASAP. I was a draftee; never enlisted to fight in a war whose only purpose was to make large corporations and their investors extremely wealthy, while the middle-class gradually disappeared and the working class, of which I am a member, become annihilated due to taxation and expensive out of pocket healthcare costs--the VA hasn't been a decent source when it comes to providing for its vets; although, in some places in the U.S. it's at least acceptable. I find that putting on a happy face and saying hello to all those I meet, helps to make life much better for all concerned parties.

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@horowitz71

I'm also an ex-Marine and VN vet. I was living abroad when I went to see a dr. about all the symptoms I was experiencing: every PD symptom except being "frozen." I went back to the states only to find out that our government had taken away half of my Social Security for the rest of my life because I never bothered to sign up for Medicare Part B--useless outside of the U.S. They deducted 10% of my Social Security for each year that I hadn't paid into it. l was recently evaluated by a VA contractor for health factors relating to Agent Orange exposure or from drinking toxic water while stationed at Camp LeJeune. I did receive a 20% service-connected rating for the chronic pain and nerve damage from shrnapel wounds to my arms. I could have received this compensation back in 1971, but didn't think I deserved to get the money that someone much worse off than myself should receive. Anyway, I'm still waiting for a decision from Veteran's Evaluation Services on getting a higher disability rating than the 20% which has gotten much worse over the years. I'm not one who complains about pain--am still able to practice martial arts (modified versions), go surfing (without being able to pop-up on by board), and play tennis (even though my serve is a major liability when playing matches). I've gotten much worse lately, awake at night with pain if I roll over in my sleep or jump up from lucid nightmares; and my wife notices when I fall--I explain to her that it's from hip injuries from many years ago) or exhibit signs of dementia--both side effects of PD. I've never told her how much pain I'm in as she worries enough. If I do get compensated, as I well should be, we're going to move out of this stinking country ASAP. I was a draftee; never enlisted to fight in a war whose only purpose was to make large corporations and their investors extremely wealthy, while the middle-class gradually disappeared and the working class, of which I am a member, become annihilated due to taxation and expensive out of pocket healthcare costs--the VA hasn't been a decent source when it comes to providing for its vets; although, in some places in the U.S. it's at least acceptable. I find that putting on a happy face and saying hello to all those I meet, helps to make life much better for all concerned parties.

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I trust that you have applied for compensation for being exposed to the bad water at LeJuene.

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I've been through it all. I can't get pain meds even from pain doctors. To sleep I use Medical Cannabis and if you can get it Tramadol is good for the pain. Sorry I know exactly how you feel.

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@horowitz71

I'm also an ex-Marine and VN vet. I was living abroad when I went to see a dr. about all the symptoms I was experiencing: every PD symptom except being "frozen." I went back to the states only to find out that our government had taken away half of my Social Security for the rest of my life because I never bothered to sign up for Medicare Part B--useless outside of the U.S. They deducted 10% of my Social Security for each year that I hadn't paid into it. l was recently evaluated by a VA contractor for health factors relating to Agent Orange exposure or from drinking toxic water while stationed at Camp LeJeune. I did receive a 20% service-connected rating for the chronic pain and nerve damage from shrnapel wounds to my arms. I could have received this compensation back in 1971, but didn't think I deserved to get the money that someone much worse off than myself should receive. Anyway, I'm still waiting for a decision from Veteran's Evaluation Services on getting a higher disability rating than the 20% which has gotten much worse over the years. I'm not one who complains about pain--am still able to practice martial arts (modified versions), go surfing (without being able to pop-up on by board), and play tennis (even though my serve is a major liability when playing matches). I've gotten much worse lately, awake at night with pain if I roll over in my sleep or jump up from lucid nightmares; and my wife notices when I fall--I explain to her that it's from hip injuries from many years ago) or exhibit signs of dementia--both side effects of PD. I've never told her how much pain I'm in as she worries enough. If I do get compensated, as I well should be, we're going to move out of this stinking country ASAP. I was a draftee; never enlisted to fight in a war whose only purpose was to make large corporations and their investors extremely wealthy, while the middle-class gradually disappeared and the working class, of which I am a member, become annihilated due to taxation and expensive out of pocket healthcare costs--the VA hasn't been a decent source when it comes to providing for its vets; although, in some places in the U.S. it's at least acceptable. I find that putting on a happy face and saying hello to all those I meet, helps to make life much better for all concerned parties.

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Have you checked with the DAV regarding the penalty you had to pay. I have had some excellent help from these veterans and they seem to be very knowledgeable. Do you have a Veteran Clinic where you live. If there is one near you, the care is free, and you can get your prescriptions there also. All of this helps a lot. If you leave this country, where would you go that is better. I am a Gold Star Wife, and I have volunteered at the Veteran Facility. I use to impute the Veterans medical records into the computer. War is Hell! and too many of our boys never came home.
GINA5009

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Hello my name is Illa and believe me I have been there and am still there at times. I don’t have diabetes but I am obese. I got Progressive Neuropathy just out of the blue I believe that it was a medication but of course the Dr.s would never admit to that. I have problems walking, standing and basically getting around in general. It has been extremely stressful so I truly understand but for me getting closer to God and staying prayerful has been my only hope. I promise that has been the only thing that has been and still is pulling me through. I was told there was nothing they could do and sent home after several test and that’s where I was left. However I am not healed but Mentally I am trusting God and trying to rebuild my life . I truly hope and pray that this will make a difference for you as well.

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@gina5009

Have you checked with the DAV regarding the penalty you had to pay. I have had some excellent help from these veterans and they seem to be very knowledgeable. Do you have a Veteran Clinic where you live. If there is one near you, the care is free, and you can get your prescriptions there also. All of this helps a lot. If you leave this country, where would you go that is better. I am a Gold Star Wife, and I have volunteered at the Veteran Facility. I use to impute the Veterans medical records into the computer. War is Hell! and too many of our boys never came home.
GINA5009

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I'm a DAV member/supporter and get better care from the VA than I do from my Medicare plan. After visiting the local VA hospital and having written letters to both the VA and state politicians, my LEP penalty was dropped. The VA will back up its vets. I get all my prescriptions from the VA. Until three years ago, the government did not consider the VA as a legitimate source for medication. At least some things in life are getting better. Thank you for your reply.

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I am on Qutenza and I am getting great relief. Still a little tingling but no pain or burning. I am am able to get to sleep. I am confident in suggesting it.

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Have you tried melatonin? I've just discovered it's helping with pain through the night and daytime. Taking 3mg one hour before bed. Some people need less, some more mg before bed.

https://www.painscale.com/article/melatonin-supplementation-as-a-treatment-option-for-neuropathy#:~:text=Melatonin%20may%20help%20with%20nerve,to%20touch%20and%20temperature%20changes
🤞

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