Hello @agentorange1967, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There is another discussion where you can meet other members discussing Agent Orange related conditions.
I'd like to add my welcome to you as well. As John, @johnbishop, mentioned in his post to you Connect does have a discussion group about persons affected by Agent Orange. I would like to invite @johnjames and @macbeth to this discussion so that they can share with you their experiences.
I have been dealing with fibromyalgia and small fiber neuropathy in my legs and feet. The best way to describe the sensations I feel- it is like my skin is bubbling and boiling. NON STOP. For me there is was no break in the pain. I have been stable the past two years with a tolerable level of pain as the result of high dose Lyrica and a Butrans opioid patch. I am now able to function, take my dogs for walks, and take care of my family.
I have been dealing with fibromyalgia and small fiber neuropathy in my legs and feet. The best way to describe the sensations I feel- it is like my skin is bubbling and boiling. NON STOP. For me there is was no break in the pain. I have been stable the past two years with a tolerable level of pain as the result of high dose Lyrica and a Butrans opioid patch. I am now able to function, take my dogs for walks, and take care of my family.
I also have severe neuropathy pain in my feet, legs, hands, and feet 24 hours per day. I have been taking 4mg of Buprenorphine (pills you dissolve under your tongue) twice a day for almost a year. It helps take the edge off somewhat, but my pain level is still high. Have you also tried the pills or just the patch? I am wondering if the patch would work better for me.
I also have severe neuropathy pain in my feet, legs, hands, and feet 24 hours per day. I have been taking 4mg of Buprenorphine (pills you dissolve under your tongue) twice a day for almost a year. It helps take the edge off somewhat, but my pain level is still high. Have you also tried the pills or just the patch? I am wondering if the patch would work better for me.
My doctor has never tried the pills. I was already on a fairly high dose of Lyrica before I was put on the patch. I think he went with the patch for convenience. I really love it. It seems to give me steady pain relief. No troughs. Everyone seems to be all excited about IVIG possibly for SFN. My neuro told me that even if my insurance paid for it he would never recommend it for me. He said it is not a cure. I would have to be on it the rest of my life and even though many doctors say it is safe, he said there still is potential for serious side effects. Not sure how other peoples doctors feel about it.
Are you talking about the steroid IVIG? I was on a low dose of steroids (pills, not IVIG) for awhile. It seemed to help a little but I was worried about future side effects, so I went off of it. Are the Buprens patches expensive? What does are you on?
Are you talking about the steroid IVIG? I was on a low dose of steroids (pills, not IVIG) for awhile. It seemed to help a little but I was worried about future side effects, so I went off of it. Are the Buprens patches expensive? What does are you on?
I have been on 7.5 mcg patch for the past two years. No, I don't think it is a steroid IVIG as far as I know. Is there another kind of IVIG? I remember when my mother in law was battling severe RA . She asked her doctor to put her on steroids. He told her he would rather she be on opioids. He said long term opioids won't kill you, but steroids will. For those of us who are responsible with our medications, we are being harmed by the addicts who are making it harder and harder for those of us who really need it, to get pain relief. I get so angry.
Connect
Connect
Like
Helpful
Hug
Hi @silverapple, Here are a couple sites that I use to learn a little more about different medications.
Lyrica: Uses, How to Take, Side Effects, Warnings - Drugs.com: https://www.drugs.com/lyrica.html
Pregabalin (Lyrica): Basics, Side Effects & Reviews - GoodRx: https://www.goodrx.com/lyrica/what-is
-
Like -
Helpful -
Hug
1 ReactionAnyone out there have agent orange induced neuropathy ivewent thru all the tests and it was deemed that it was my exposure in i67&68 in Vietnam
-
Like -
Helpful -
Hug
2 ReactionsHello @agentorange1967, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There is another discussion where you can meet other members discussing Agent Orange related conditions.
Agent Orange and Neurological Disorders: https://connect.mayoclinic.org/discussion/agent-orange-and-neurological-disorders/
You may also be interested in reading other members journeys with neuropathy and treatments they have found helpful - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Are you able to share a little more about your symptoms and any treatments you have tried?
-
Like -
Helpful -
Hug
3 ReactionsHello @agentorange1967
I'd like to add my welcome to you as well. As John, @johnbishop, mentioned in his post to you Connect does have a discussion group about persons affected by Agent Orange. I would like to invite @johnjames and @macbeth to this discussion so that they can share with you their experiences.
Please take some time to read many of the posts about this unfortunate side effect of serving in the military. Once again here is the link that John shared earlier, https://connect.mayoclinic.org/discussion/agent-orange-and-neurological-disorders/
Are you currently receiving Veteran's Benefits for your neurological problems?
-
Like -
Helpful -
Hug
1 ReactionThank you @johnbishop you are very kind.
-
Like -
Helpful -
Hug
1 ReactionI have been dealing with fibromyalgia and small fiber neuropathy in my legs and feet. The best way to describe the sensations I feel- it is like my skin is bubbling and boiling. NON STOP. For me there is was no break in the pain. I have been stable the past two years with a tolerable level of pain as the result of high dose Lyrica and a Butrans opioid patch. I am now able to function, take my dogs for walks, and take care of my family.
-
Like -
Helpful -
Hug
2 ReactionsI also have severe neuropathy pain in my feet, legs, hands, and feet 24 hours per day. I have been taking 4mg of Buprenorphine (pills you dissolve under your tongue) twice a day for almost a year. It helps take the edge off somewhat, but my pain level is still high. Have you also tried the pills or just the patch? I am wondering if the patch would work better for me.
My doctor has never tried the pills. I was already on a fairly high dose of Lyrica before I was put on the patch. I think he went with the patch for convenience. I really love it. It seems to give me steady pain relief. No troughs. Everyone seems to be all excited about IVIG possibly for SFN. My neuro told me that even if my insurance paid for it he would never recommend it for me. He said it is not a cure. I would have to be on it the rest of my life and even though many doctors say it is safe, he said there still is potential for serious side effects. Not sure how other peoples doctors feel about it.
Are you talking about the steroid IVIG? I was on a low dose of steroids (pills, not IVIG) for awhile. It seemed to help a little but I was worried about future side effects, so I went off of it. Are the Buprens patches expensive? What does are you on?
I have been on 7.5 mcg patch for the past two years. No, I don't think it is a steroid IVIG as far as I know. Is there another kind of IVIG? I remember when my mother in law was battling severe RA . She asked her doctor to put her on steroids. He told her he would rather she be on opioids. He said long term opioids won't kill you, but steroids will. For those of us who are responsible with our medications, we are being harmed by the addicts who are making it harder and harder for those of us who really need it, to get pain relief. I get so angry.