cookie51
05-27-2004, 11:42 PM
Hi,
I was just told I have neuropathy, also fibromyalga, but my question is, I had surgery on my ankle(fracture- pins and plates ) on both sides of my ankle due to a fall from foot drop, my question is has anyone with neuropathy ever had buring viens? I have a blood clot due to foot surgery, and have my blood drawn every week for 6 mths. and when they stick the needle in my vein, it burns like a hot poker. Anyone ever hear of that ?
Thanks Cookie
I was just told I have neuropathy, also fibromyalga, but my question is, I had surgery on my ankle(fracture- pins and plates ) on both sides of my ankle due to a fall from foot drop, my question is has anyone with neuropathy ever had buring viens? I have a blood clot due to foot surgery, and have my blood drawn every week for 6 mths. and when they stick the needle in my vein, it burns like a hot poker. Anyone ever hear of that ?
Thanks Cookie
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iamemak
05-31-2004, 02:17 AM
Hi. I am new here.(tonight) I have been reading several of the catagories and don't know exactly where I belong.
When I saw your post, I had to respond. I really don't know where to start but I do know the kind of burning pain you are talking about !!!
I have that pain often. Not everyday but it is really part of my chronic pain that I have had for over 4 years now.
That Burning, Stabbing pain, I don't have to be stuck with a needle to get it., but I truely understand that pain.
It is a terrible pain.
When I decide exactly where I belong, I will post and tell you all my pain/ and problems. I don't know what one to put it under but... I have damaged nerves........................so........ ..... where should I go to post??? any suggestions? ok?
Thanks.
and
When I saw your post, I had to respond. I really don't know where to start but I do know the kind of burning pain you are talking about !!!
I have that pain often. Not everyday but it is really part of my chronic pain that I have had for over 4 years now.
That Burning, Stabbing pain, I don't have to be stuck with a needle to get it., but I truely understand that pain.
It is a terrible pain.
When I decide exactly where I belong, I will post and tell you all my pain/ and problems. I don't know what one to put it under but... I have damaged nerves........................so........ ..... where should I go to post??? any suggestions? ok?
Thanks.
and
cookie51
06-02-2004, 12:12 AM
Hi Jamie, Just read your post, I think this site is good for your nerve pain, also like me mine is from back surgery and damage to a nerve and I have drop foot, which caused my neuropathy, so I sometimes go on different sites, I think I can really go on most of these sites because I have so many things wrong with me I to dont know where to start. Back to the burning with the blood draw, I was surprised, it burnt so bad, they had to do it again because the blood was not coming out so they did it again, and that to hurt like fire. I never had that happen before, but I have fibromyalgia,so i think that has something to do with the burning pain. Well I hope all is well with you and will post later.
cookie
cookie
NancyH
06-02-2004, 12:52 AM
I know this is the place for chronic burning stabbing pain, I mean that's what neuropathy is all about right? I have left and right ulnar nerve neuropathy as well as neuropathy in my feet do to the pernicious anemia I was diagnosed so late with back in 96. I to have damaged nerves called polyneuropathy and perepheral neuropathy. This is not fun to have it is horrific pain at times and just what does everyone else here take for this pain? I haven't found anything that works enough to make me want to party but I do take an analgesic to take the edge off. Curious as to what others have been able to find that helps with nerve pain.
plkelly
06-02-2004, 04:24 PM
Like some of you, I also visit different sites. I was originally diagnosed with trigeminal neuralgia almost 9 years ago. The past couple years, I've had TMJ problems, so I visit both the sites. Until Easter I had been pain free for nine months after starting orthodontia treatment. Wore a splint 24/7 for about 6 months, then got upper braces last September, then lower in January. But recently I have had the worst pain ever--can't even swallow or sip coffee or talk in the mornings without those horrible lightning bolts going off in my jaw. Sometimes in the afternoon after my meds kick in I guess, it calms down a little. I have started on Tegretol again, and this morning saw the doctor--she thinks I have both TN and TMJ and is switching me to Neurontin. I see the acurpuncturist again tomorrow. One of the worst things about this type of pain is that others don't understand what it's like. I get a couple words out--'can't talk now'--and they start asking questions. Or the fact that when I don't have the pain, I really have no pain at all. It goes through 3-4 month cycles. (Except for the last time when it lasted for 7 or 8 months, but never like this. I could talk, just had to be sure not to hit a trigger point).
Patsy
Patsy
cookie51
06-03-2004, 06:09 PM
Hi Patsy,
My sister had that tmj last year and she said the pain was so bad she wanted to die. We took her to emergency room and they gave her a shot in her face, it helped. Every now and then she feels like it is coming back and gets so scared, it has not got to the point she has to go back to the hospital ,she takes pain meds. and muscle relaxers anything to stop it before it gets that bad again. The dr. told her it was from her fibromyagia, and there is nothing they can really do for it, because fibro affects the muscles and you never know where it will strike you. Hope they can help you and if they tell you something that will help my sister let me know.
thanks cookie
My sister had that tmj last year and she said the pain was so bad she wanted to die. We took her to emergency room and they gave her a shot in her face, it helped. Every now and then she feels like it is coming back and gets so scared, it has not got to the point she has to go back to the hospital ,she takes pain meds. and muscle relaxers anything to stop it before it gets that bad again. The dr. told her it was from her fibromyagia, and there is nothing they can really do for it, because fibro affects the muscles and you never know where it will strike you. Hope they can help you and if they tell you something that will help my sister let me know.
thanks cookie
sugarleaf
06-05-2004, 09:29 AM
Hi NancyH
Have you seen a neurologist and had various tests? Have you never been given anything for your pain? Has B12 deficiency been mentioned to you, because it could be a major contributory factor. What about drugs such as Neurontin or Elavil (Amitriptyline) ?
I have painful sensory peripheral neuropathy in my feet and ulnar compression affecting my left hand and elbow. I have conversed with suffers such as yourself on other forums. If you can answer the above questions I maybe can direct you to some experts.
Jake
Have you seen a neurologist and had various tests? Have you never been given anything for your pain? Has B12 deficiency been mentioned to you, because it could be a major contributory factor. What about drugs such as Neurontin or Elavil (Amitriptyline) ?
I have painful sensory peripheral neuropathy in my feet and ulnar compression affecting my left hand and elbow. I have conversed with suffers such as yourself on other forums. If you can answer the above questions I maybe can direct you to some experts.
Jake
cookie51
06-05-2004, 10:33 PM
Hi Jake,
I too have neuropathy, just told that after a fall 6mths. ago, a result of foot drop, and my ankle gave out and bent and broke on both sides, now have pins and plates. As a result now I have nerve damage and burning in my leg and shines. My foot also gets red and hot, Dr. said I have neuropathy, not alot they can do for it, I take vicodin for the pain in foot and at night I take elival, comodon, ( blood clot from foot surgery) and sleeping pill. I also have fibromyagia, which does not help any,What do you do for your neuropathy? any special treatment? Thanks for any help.
Thanks again Cookie
I too have neuropathy, just told that after a fall 6mths. ago, a result of foot drop, and my ankle gave out and bent and broke on both sides, now have pins and plates. As a result now I have nerve damage and burning in my leg and shines. My foot also gets red and hot, Dr. said I have neuropathy, not alot they can do for it, I take vicodin for the pain in foot and at night I take elival, comodon, ( blood clot from foot surgery) and sleeping pill. I also have fibromyagia, which does not help any,What do you do for your neuropathy? any special treatment? Thanks for any help.
Thanks again Cookie
plkelly
06-06-2004, 07:27 PM
Cookie--
I know how your sister feels. It can be unbearable pain. A week ago Wednesday when mine hit really hard, my husband found me in the kitchen sobbing and pounding on the counter. I get mad at doctors who tell me there is nothing they can do, and would like to give them five minutes with this pain. I'm taking Lexipro to help with the anxiety--I feel like anxiety and fear sets up a vicious cycle that is hard to break--the more you fear an attack, the tighter your muscles become until it finally causes one. In addition I'm gradually going off Tegretol while I increase Neurontin. I had a great night last night and am much better today. You might suggest to your sister that she ask for something for the anxiety. And one of the meds suggested for nerve pain. I don't have fibromyalgia, so I really feel for her.
So far, at least, it hasn't effected my smile muscles!
Good luck to you both--
Patsy
I know how your sister feels. It can be unbearable pain. A week ago Wednesday when mine hit really hard, my husband found me in the kitchen sobbing and pounding on the counter. I get mad at doctors who tell me there is nothing they can do, and would like to give them five minutes with this pain. I'm taking Lexipro to help with the anxiety--I feel like anxiety and fear sets up a vicious cycle that is hard to break--the more you fear an attack, the tighter your muscles become until it finally causes one. In addition I'm gradually going off Tegretol while I increase Neurontin. I had a great night last night and am much better today. You might suggest to your sister that she ask for something for the anxiety. And one of the meds suggested for nerve pain. I don't have fibromyalgia, so I really feel for her.
So far, at least, it hasn't effected my smile muscles!
Good luck to you both--
Patsy
sugarleaf
06-06-2004, 07:56 PM
Hi Patsy
May I ask what your diagnosis is? Also where is your pain? You should never have to suffer pain like that.
I used to be on Tegretol but it blew me away. That was some years ago and after that my neuro put me on Neurontin with a small amount of Elavil before bedtime. I find this much better for taking the edge off the pain and I sleep better.
Neurontin does have some side effects as I told Cookie but they are usually mild.
I’m glad you feel a little better – keep smiling. :)
Jake
May I ask what your diagnosis is? Also where is your pain? You should never have to suffer pain like that.
I used to be on Tegretol but it blew me away. That was some years ago and after that my neuro put me on Neurontin with a small amount of Elavil before bedtime. I find this much better for taking the edge off the pain and I sleep better.
Neurontin does have some side effects as I told Cookie but they are usually mild.
I’m glad you feel a little better – keep smiling. :)
Jake
NHone
06-07-2004, 12:29 AM
Just was reading through some of you r posts and wanted to check on TMJ. Fibromyalgia can be caused by low magnesiumm, and so can TMJ, as well as depression. I done a lot of research on magnesium so I wanted to give you the web site that I thought would explain the symptoms in a little more brief form. I like the explanation on www.drmccarty.com/magnesium.htm. TMJ and low magnesium is a little harder to find (but its here), but fibromyalgia and depression due to low magnesium has a multitude of info on the internet, and it is from reliable sources. You can't just have a normal blood test for magnesium, (but your doctors will probably tell you that you can. There is less than 3% of your body's mangesium in the blood. THe blood will do everything it can to maintain itself, this includes stealing magnesium from the rest of your body. Spectracell in Houston does intracellular tests. Most of your magnesium is intracellular;therefore, you can show normal magnsium on a blood test will the rest of your system is starving. One thing about magnesium.There is no such thing as a little low. It is like being pregnant. Either you are or you're not. Magnesium kinds of works like gasoline in the body. It provides energy. You're never just a little out of gas in your car.
plkelly
06-07-2004, 12:29 AM
Hi Jake--
I was diagnosed 8 years ago with trigeminal neuralgia, a disorder of the fifth facial nerve. It spasms and causes debilitating pain. That's what the Tegretol was prescribed for. I tolerated it quite well for years. Over the past year and a half, I have decided based on my own research that my main problem is TMJ with involvement of the trigeminal nerve. The doctors don't agree with my diagnosis (imagine!) and think I have both. But after going into treatment for TMJ with a splint and braces, I was pain free for 9 or 10 months. Then suddenly it came back really hard. And when I went back on the Tegretol it really upset my stomach, etc.
I read an ad on-line for some sort of machine for foot neuropathy. Do you know what causes your problems?
Hope everyone here has a good day tomorrow!
Patsy
I was diagnosed 8 years ago with trigeminal neuralgia, a disorder of the fifth facial nerve. It spasms and causes debilitating pain. That's what the Tegretol was prescribed for. I tolerated it quite well for years. Over the past year and a half, I have decided based on my own research that my main problem is TMJ with involvement of the trigeminal nerve. The doctors don't agree with my diagnosis (imagine!) and think I have both. But after going into treatment for TMJ with a splint and braces, I was pain free for 9 or 10 months. Then suddenly it came back really hard. And when I went back on the Tegretol it really upset my stomach, etc.
I read an ad on-line for some sort of machine for foot neuropathy. Do you know what causes your problems?
Hope everyone here has a good day tomorrow!
Patsy
sugarleaf
06-07-2004, 12:44 PM
Hi Patsy
I hope you get on OK with Neurontin, it has far fewer side effects for most people than Tegretol.
My neuropathy is called idiopathic – meaning no one knows! :eek: About half of all forms of PN are classed this way. Pain treatment is all that is on offer.
The foot machine you referred to may be either the Rebuilder I put the website for this on my posting above to Cookie. The other one is possibly the Anodyne treatment. If your doctor agrees you can get a course of this treatment in your local clinic. Many people I have met on the net have found success, even if only limited with either or both of these treatments.
The Anodyne site is:- www.anodynetherapy.com
Good luck :)
Jake
I hope you get on OK with Neurontin, it has far fewer side effects for most people than Tegretol.
My neuropathy is called idiopathic – meaning no one knows! :eek: About half of all forms of PN are classed this way. Pain treatment is all that is on offer.
The foot machine you referred to may be either the Rebuilder I put the website for this on my posting above to Cookie. The other one is possibly the Anodyne treatment. If your doctor agrees you can get a course of this treatment in your local clinic. Many people I have met on the net have found success, even if only limited with either or both of these treatments.
The Anodyne site is:- www.anodynetherapy.com
Good luck :)
Jake
cookie51
06-14-2004, 01:17 AM
Hi Jake,
Been off computer a few days, but just read your post, I am interested in that foot treatment you are talking about. I used the tens unit for my nerve damage and pain in my back, but it seemed to make it worse. I think because it tingles, which my leg does on its own from the nerve, it really did not help, but I would be open to the foot rebuilder, where do you get one and do you need a dr. to write a script for it? I would love for something to help with the burning and pain in my feet, I take vicodin, elivil, ambim to help me sleep. When you have time, please fill me in on your foot treatment.
Thanks Cookie
Been off computer a few days, but just read your post, I am interested in that foot treatment you are talking about. I used the tens unit for my nerve damage and pain in my back, but it seemed to make it worse. I think because it tingles, which my leg does on its own from the nerve, it really did not help, but I would be open to the foot rebuilder, where do you get one and do you need a dr. to write a script for it? I would love for something to help with the burning and pain in my feet, I take vicodin, elivil, ambim to help me sleep. When you have time, please fill me in on your foot treatment.
Thanks Cookie
sugarleaf
06-14-2004, 10:00 AM
Hi Cookie
If you did not like or think that the Tens was for you due to the tingles then I am afraid the Rebuider would give you the same feelings. :eek:
The other treatment which is available in a lot of US hospitals and clinics is Anodyne. Your doctor can prescribe a course of treatment for you and I understand that Medicare and other insurers often pay for the treatment. It is totally non evasive – just infrared light pads strapped to the parts that hurt.
I would see what your doctor says. It’s worth a try. The Anodyne site if you want a look first is www.anodynetherapy.com
In my case I find the Rebuilder helps for a while along with a multitude of vitamins and supplements. Sorry I can’t be of more help.
Take care :)
Jake
If you did not like or think that the Tens was for you due to the tingles then I am afraid the Rebuider would give you the same feelings. :eek:
The other treatment which is available in a lot of US hospitals and clinics is Anodyne. Your doctor can prescribe a course of treatment for you and I understand that Medicare and other insurers often pay for the treatment. It is totally non evasive – just infrared light pads strapped to the parts that hurt.
I would see what your doctor says. It’s worth a try. The Anodyne site if you want a look first is www.anodynetherapy.com
In my case I find the Rebuilder helps for a while along with a multitude of vitamins and supplements. Sorry I can’t be of more help.
Take care :)
Jake
cookie51
06-14-2004, 02:19 PM
Hi,
Just read your post. Yes I am interested in finding out about anodyne, its a light ray, so do you wear it all the time? Do you need a scripe from your dr.? I am going to find out about it. No the tens was not for me, they want to do spinal cord implant, but I wont let them, after my fall this dec. and braking my ankle, I got a blood clot in my lung as a result of the surgery, so surgery of any kind is not what I want to do, I am too afraid, plus it was so hard on my family, my children and husband went thru alot, so to take achance of another clot is not what I want.
Thank you for your response, cookie
Just read your post. Yes I am interested in finding out about anodyne, its a light ray, so do you wear it all the time? Do you need a scripe from your dr.? I am going to find out about it. No the tens was not for me, they want to do spinal cord implant, but I wont let them, after my fall this dec. and braking my ankle, I got a blood clot in my lung as a result of the surgery, so surgery of any kind is not what I want to do, I am too afraid, plus it was so hard on my family, my children and husband went thru alot, so to take achance of another clot is not what I want.
Thank you for your response, cookie
sugarleaf
06-14-2004, 04:44 PM
Hi Cookie
Yep you will need a script to get it under your insurance, if you have one. No you do not wear it all the time just for about an hour each session at the hospital. You can buy a unit but they are very expensive. Do have a word with your doctor.
While I understand your plight no one can promise the Anodyne will work for you. Have you been to their website I gave you on my last posting? It will tell you all about it.
Keep in touch cookie, if things don’t work out post again and I will send you to a different Neurological forum which may offer you more help as it has many experts.
I am not an expert by any means but I will do all I can to help you.
Take care and sleep well :)
Jake
Yep you will need a script to get it under your insurance, if you have one. No you do not wear it all the time just for about an hour each session at the hospital. You can buy a unit but they are very expensive. Do have a word with your doctor.
While I understand your plight no one can promise the Anodyne will work for you. Have you been to their website I gave you on my last posting? It will tell you all about it.
Keep in touch cookie, if things don’t work out post again and I will send you to a different Neurological forum which may offer you more help as it has many experts.
I am not an expert by any means but I will do all I can to help you.
Take care and sleep well :)
Jake
cookie51
06-15-2004, 06:24 PM
Hi Jake,
Just read your post, I will look up this site on anodynetherphy, any help will be great. I think when your in pain so much you are willing to try almost anything. I would like to find some help for this nerve pain, without surgery, because if that is my only course, I will live with pain. But I think talking to other people who have tried different methods is better then what the drs. tell us. They always want to do surgery, I have been thinking of trying to find some natural ways, who knows maybe that would be better than being on meds. all the time.
Once again thanks for information, cookie
Just read your post, I will look up this site on anodynetherphy, any help will be great. I think when your in pain so much you are willing to try almost anything. I would like to find some help for this nerve pain, without surgery, because if that is my only course, I will live with pain. But I think talking to other people who have tried different methods is better then what the drs. tell us. They always want to do surgery, I have been thinking of trying to find some natural ways, who knows maybe that would be better than being on meds. all the time.
Once again thanks for information, cookie