pamelaz - I see a lot of folks on here experience pain and to me, the neuro doc has to (hopefully) have the ability to prescribe a med that will offer some relief. Personally, I have all numbness lower legs and feet due to axonal PN. I have lower back pain but that's something else. I really feel sorry for many with pain due to PN.
@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.
Hi Chris, Any suggestions to relieve the burning pain 24 hrs a day? It has been ten years now and relief would be wonderful!!! I have no balance also and use a walker. I used to show and ride my horses also but don't believe that effected this problem Need relief!!!!!!
Hi Chris, Any suggestions to relieve the burning pain 24 hrs a day? It has been ten years now and relief would be wonderful!!! I have no balance also and use a walker. I used to show and ride my horses also but don't believe that effected this problem Need relief!!!!!!
Good evening @madgemgunia.........you must be exhausted from fighting pain for 10 years. I received my diagnosis 10 years ago also. I started with Nortriptyline and Gabapentin. At the same time, a nurse friend introduced me to medical cannabis. I have been able to control most of the burning pain with a sequence of different options that have been developed and offered for pain, numbness, and the burning from tingle tangles.
If you choose this route, you must be your own prescriber unless there is a cannabis pharmacologist associated with the dispensary you use. I use only tinctures and topicals and only from Papa and Barkley. It might be worth your while to visit their site as they explain their products and the nature of medical cannabis very well. They have two sites
papaandbarkley.com and papaandbarkleycbd.com. I have always used products that are a combination of CBD and THC. For example, I might use a topical of 3:1 CBD/THC for chronic "burning" and numbness. I also keep a jar of 1:3 CBD/THC for any acute pain that creeps up on me.
The same strategy can be used with a liquid tincture. In fact, I don't think I have had a day in my life without medical cannabis for 10 years. It does keep the door open to pleasure and happiness as long as I anticipate and look for joy in every day.
Is this something you have access to and are willing to try?
May you be free of suffering and the causes of suffering.
Chris
Hi Chris, Any suggestions to relieve the burning pain 24 hrs a day? It has been ten years now and relief would be wonderful!!! I have no balance also and use a walker. I used to show and ride my horses also but don't believe that effected this problem Need relief!!!!!!
Hopefully you can get to a large teaching hospital, like Mayo, or something closer to you. Pain 24/7 isn’t something a good neurologist or pain doctor will tolerate. They will work with you to ease this suffering. Please don’t accept that this level of pain is necessary! Find the right medical center for you!
Exercise seems to help the lack of feeling in my feet and hands. I was referred to physical therapy to perfect my exercise prescription, and I'm pretty dedicated to it. Improvement is small, but ongoing. I notice gait and grasp, in particular, improve as day goes on. Best wishes for finding what helps you!
I have constant pain on the scalp have tried everything blocks ,Botox ,meds. Nummular persistent daily headache. Anyone ever had this and did it ever go away or get better?
I have constant pain on the scalp have tried everything blocks ,Botox ,meds. Nummular persistent daily headache. Anyone ever had this and did it ever go away or get better?
@rozmuhr sounds like what I have, Occipital Neuralgia.
I have problems with scalp, jaw, teeth, ear pain. I also have headaches and sometimes eye pain.
There are ways to treat this through physical therapy. It is caused by a misalignment of your neck and skull.
I changed my pillow, and do exercises that stretch and strengthen my neck muscles.
@rozmuhr sounds like what I have, Occipital Neuralgia.
I have problems with scalp, jaw, teeth, ear pain. I also have headaches and sometimes eye pain.
There are ways to treat this through physical therapy. It is caused by a misalignment of your neck and skull.
I changed my pillow, and do exercises that stretch and strengthen my neck muscles.
I had a nerve block for occipital neuralgia it did not help. You should try this block. I will try PT again I already did 3 months it did not help . Thanks for your concern.
I had a nerve block for occipital neuralgia it did not help. You should try this block. I will try PT again I already did 3 months it did not help . Thanks for your concern.
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pamelaz - I see a lot of folks on here experience pain and to me, the neuro doc has to (hopefully) have the ability to prescribe a med that will offer some relief. Personally, I have all numbness lower legs and feet due to axonal PN. I have lower back pain but that's something else. I really feel sorry for many with pain due to PN.
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Helpful -
Hug
6 ReactionsHi Chris, Any suggestions to relieve the burning pain 24 hrs a day? It has been ten years now and relief would be wonderful!!! I have no balance also and use a walker. I used to show and ride my horses also but don't believe that effected this problem Need relief!!!!!!
Good evening @madgemgunia.........you must be exhausted from fighting pain for 10 years. I received my diagnosis 10 years ago also. I started with Nortriptyline and Gabapentin. At the same time, a nurse friend introduced me to medical cannabis. I have been able to control most of the burning pain with a sequence of different options that have been developed and offered for pain, numbness, and the burning from tingle tangles.
If you choose this route, you must be your own prescriber unless there is a cannabis pharmacologist associated with the dispensary you use. I use only tinctures and topicals and only from Papa and Barkley. It might be worth your while to visit their site as they explain their products and the nature of medical cannabis very well. They have two sites
papaandbarkley.com and papaandbarkleycbd.com. I have always used products that are a combination of CBD and THC. For example, I might use a topical of 3:1 CBD/THC for chronic "burning" and numbness. I also keep a jar of 1:3 CBD/THC for any acute pain that creeps up on me.
The same strategy can be used with a liquid tincture. In fact, I don't think I have had a day in my life without medical cannabis for 10 years. It does keep the door open to pleasure and happiness as long as I anticipate and look for joy in every day.
Is this something you have access to and are willing to try?
May you be free of suffering and the causes of suffering.
Chris
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Helpful -
Hug
3 ReactionsHopefully you can get to a large teaching hospital, like Mayo, or something closer to you. Pain 24/7 isn’t something a good neurologist or pain doctor will tolerate. They will work with you to ease this suffering. Please don’t accept that this level of pain is necessary! Find the right medical center for you!
-
Like -
Helpful -
Hug
2 ReactionsExercise seems to help the lack of feeling in my feet and hands. I was referred to physical therapy to perfect my exercise prescription, and I'm pretty dedicated to it. Improvement is small, but ongoing. I notice gait and grasp, in particular, improve as day goes on. Best wishes for finding what helps you!
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Like -
Helpful -
Hug
9 ReactionsI just started using compression socks at night with some relief.
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3 ReactionsI have constant pain on the scalp have tried everything blocks ,Botox ,meds. Nummular persistent daily headache. Anyone ever had this and did it ever go away or get better?
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Like -
Helpful -
Hug
1 Reaction@rozmuhr sounds like what I have, Occipital Neuralgia.
I have problems with scalp, jaw, teeth, ear pain. I also have headaches and sometimes eye pain.
There are ways to treat this through physical therapy. It is caused by a misalignment of your neck and skull.
I changed my pillow, and do exercises that stretch and strengthen my neck muscles.
Susan
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Hug
3 ReactionsI had a nerve block for occipital neuralgia it did not help. You should try this block. I will try PT again I already did 3 months it did not help . Thanks for your concern.
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Helpful -
Hug
5 Reactions@rozmuhr I find if I keep up the exercises I can feel better.
Good luck!
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2 Reactions