Tasia W
04-19-2008, 04:05 PM
Hi Everyone!
i am having a flare up right now and I have been experiencing it since early January. Actually think that it is starting to subside. I have been having frequent and extreme stabbing pains in my right thigh, all my fingers and all my toes (especially the big ones) Burning and stabbing pain in my neck that taravels down my spine,then leaves a tingling sensation. I think one of the worse fellings was the stabbing pain on the tip of my tongue. It felt like I stuck my tongue into a jar full of needles (ouch). The nerve pain seems to be happening all over my body and will sometimes stop me in my tracks. I am extremely fatigued and seem to be catching every little bug this year (not like me)
Actually didn't realize that I was having a flare up until I saw my neuro in April. She perscribed me Gabapenten for the pain. Scared to have perscription filled out due to possible side effects. Would appreciate any comments from anyone on this med or a med like it.
Also will be having another MRI and will be visiting ms clinic in a local town. My neuro gave me the choice of two ms clinics one is one hour away the second is 5 hours away. naturally I chose the one closest. She informed me that the clinic in Vancouver (the one I did not choose) is more progressive and now I am thinking that maybe I should go there instead. She said the one that I chose seems to be more reluctant when starting patients on ms meds. I have not gone yet and am still waiting to hear. I am wandering if I should have chosen the one in Vancouver. I can still change my mind.I am not on any ms drugs right now and up till now have made the choice not to start any. I am realizing now that I probably should cause I sure do not enjoy the way that I am feeling right now.
I have not posted in quite a long time here...for me it has been work work work and family obligations and not much time for anything else...when I can I sleep. I just wanted to reconnect with you wonderful group of people because I value and appreciate the support!!
Tasia
i am having a flare up right now and I have been experiencing it since early January. Actually think that it is starting to subside. I have been having frequent and extreme stabbing pains in my right thigh, all my fingers and all my toes (especially the big ones) Burning and stabbing pain in my neck that taravels down my spine,then leaves a tingling sensation. I think one of the worse fellings was the stabbing pain on the tip of my tongue. It felt like I stuck my tongue into a jar full of needles (ouch). The nerve pain seems to be happening all over my body and will sometimes stop me in my tracks. I am extremely fatigued and seem to be catching every little bug this year (not like me)
Actually didn't realize that I was having a flare up until I saw my neuro in April. She perscribed me Gabapenten for the pain. Scared to have perscription filled out due to possible side effects. Would appreciate any comments from anyone on this med or a med like it.
Also will be having another MRI and will be visiting ms clinic in a local town. My neuro gave me the choice of two ms clinics one is one hour away the second is 5 hours away. naturally I chose the one closest. She informed me that the clinic in Vancouver (the one I did not choose) is more progressive and now I am thinking that maybe I should go there instead. She said the one that I chose seems to be more reluctant when starting patients on ms meds. I have not gone yet and am still waiting to hear. I am wandering if I should have chosen the one in Vancouver. I can still change my mind.I am not on any ms drugs right now and up till now have made the choice not to start any. I am realizing now that I probably should cause I sure do not enjoy the way that I am feeling right now.
I have not posted in quite a long time here...for me it has been work work work and family obligations and not much time for anything else...when I can I sleep. I just wanted to reconnect with you wonderful group of people because I value and appreciate the support!!
Tasia
Sponsor
MSJayhawk
04-19-2008, 04:31 PM
If your pain is emanating from your nerves (nerve pain), meds may or may not work. I was given a pain killerand told to stop if it did not help after 3 days. Nowadays, I have found either heat pad or ice compress on the painful zones to work for me. WHen I had extreme pain in my hip and thigh, I used a heat pad and over stimulated the area of pain. The nerves shutdown until the area cooled. I kept the heat going for nearly a month before the damage healed. My neurologist also suggested cortisol injections on the pain area, but she cannot do it on my most painful spot- my head- because the pain is below the bone without an opening nearby.
As to clinics, if your nearby clinic is pro-active and will work with you, stay close to home. I drive 2 hours to my clinic every 6 months. 2 hours, for me, is a long drive, but well worth it when I compare it to the closer alternatives which did nothing for me. 5 hours to Vancouver could be a beneficial trip, but you need to make that decision from your perspective.
As to clinics, if your nearby clinic is pro-active and will work with you, stay close to home. I drive 2 hours to my clinic every 6 months. 2 hours, for me, is a long drive, but well worth it when I compare it to the closer alternatives which did nothing for me. 5 hours to Vancouver could be a beneficial trip, but you need to make that decision from your perspective.
MSNik
04-19-2008, 11:56 PM
Hey Tasia, just alittle more info on Gabapenten....this is the generic drug name for Neurontin....it is a nerve pain drug, but it is actually an anti-seziure drug...its also the first drug they always try for nerve related pain. It might work for you..it didnt, for me. I got no relief at all from it and it made me a zombie...it really does make you sleepy..I dont know what dose they gave you, but they usually start very low and work up to full strength...low can be 100 mgs a day, once or twice a day...I know of people taking 400 mgs 3 times a day! For them, it helps....
The one thing you need to know about this drug is if you start it and dont stay on it, dont stop it cold turkey..it can induce seizues...talk to your doctor about the best way to wean yourself off of it if you decide not to stay on it...but if you are having pain, it might be worth a try. Its not addictive, and it really is widely used...its just a hit or miss thing whether it will help you or not...FYI, Lyrica is another one they prescribe for the same thing- its more expensive, no generic to date- and again, dont stop it cold turkey..
Hope this gives you more insight...
Nikki
The one thing you need to know about this drug is if you start it and dont stay on it, dont stop it cold turkey..it can induce seizues...talk to your doctor about the best way to wean yourself off of it if you decide not to stay on it...but if you are having pain, it might be worth a try. Its not addictive, and it really is widely used...its just a hit or miss thing whether it will help you or not...FYI, Lyrica is another one they prescribe for the same thing- its more expensive, no generic to date- and again, dont stop it cold turkey..
Hope this gives you more insight...
Nikki
Nenu
04-20-2008, 06:21 AM
Mouth pain has to be the worst thing I've encountered with MS. Mine has not stopped yet, it's improved, but I'm dealing with it daily.
Anything from mild burning up to shooting pain in my face/gums. I originally thought I may have gum disease or an infection. Turns out it's neither. Usually the right side of the mouth (top row of my gums) and in my cheek, but occasionally I get similar pain on the left side of my mouth/face.
I've had burning mouth so bad before, that it was nearly impossible to sleep. It was aggravated further by stress (before diagnosis). Not fun at all! Drinking/eating seems to calm it, even brushing my teeth, but I can't do that all day long ;).
Pain killers do nothing to help it either. I just have to deal with it as best as I can and try to forget about it.
Anything from mild burning up to shooting pain in my face/gums. I originally thought I may have gum disease or an infection. Turns out it's neither. Usually the right side of the mouth (top row of my gums) and in my cheek, but occasionally I get similar pain on the left side of my mouth/face.
I've had burning mouth so bad before, that it was nearly impossible to sleep. It was aggravated further by stress (before diagnosis). Not fun at all! Drinking/eating seems to calm it, even brushing my teeth, but I can't do that all day long ;).
Pain killers do nothing to help it either. I just have to deal with it as best as I can and try to forget about it.
MSJayhawk
04-20-2008, 02:16 PM
Major ditto's to what MSNik said about stopping cold turkey. Many nerve pain drugs are designed to deaden the nerve receptors or the nerve connections. If your pain is due to sheath damage which is not located at the pain receptor or nerve connection, then there is a higher probability for the pain meds not to work.
Tasia W
04-21-2008, 09:34 PM
If your pain is emanating from your nerves (nerve pain), meds may or may not work. I was given a pain killerand told to stop if it did not help after 3 days. Nowadays, I have found either heat pad or ice compress on the painful zones to work for me. WHen I had extreme pain in my hip and thigh, I used a heat pad and over stimulated the area of pain. The nerves shutdown until the area cooled. I kept the heat going for nearly a month before the damage healed. My neurologist also suggested cortisol injections on the pain area, but she cannot do it on my most painful spot- my head- because the pain is below the bone without an opening nearby.
As to clinics, if your nearby clinic is pro-active and will work with you, stay close to home. I drive 2 hours to my clinic every 6 months. 2 hours, for me, is a long drive, but well worth it when I compare it to the closer alternatives which did nothing for me. 5 hours to Vancouver could be a beneficial trip, but you need to make that decision from your perspective.
Thank you for your advice. I tried the heat pad however, I had to stop it before I could feel any results. My skin did not like the heat. I am now going to try using ice instead. If I can't kill the pain at least I can numb it right and I am very used to being numb so that shouldn't be a problem
Thank you for taking the time to reply and the great advice!
T
As to clinics, if your nearby clinic is pro-active and will work with you, stay close to home. I drive 2 hours to my clinic every 6 months. 2 hours, for me, is a long drive, but well worth it when I compare it to the closer alternatives which did nothing for me. 5 hours to Vancouver could be a beneficial trip, but you need to make that decision from your perspective.
Thank you for your advice. I tried the heat pad however, I had to stop it before I could feel any results. My skin did not like the heat. I am now going to try using ice instead. If I can't kill the pain at least I can numb it right and I am very used to being numb so that shouldn't be a problem
Thank you for taking the time to reply and the great advice!
T
Tasia W
04-21-2008, 09:42 PM
Hey Tasia, just alittle more info on Gabapenten....this is the generic drug name for Neurontin....it is a nerve pain drug, but it is actually an anti-seziure drug...its also the first drug they always try for nerve related pain. It might work for you..it didnt, for me. I got no relief at all from it and it made me a zombie...it really does make you sleepy..I dont know what dose they gave you, but they usually start very low and work up to full strength...low can be 100 mgs a day, once or twice a day...I know of people taking 400 mgs 3 times a day! For them, it helps....
The one thing you need to know about this drug is if you start it and dont stay on it, dont stop it cold turkey..it can induce seizues...talk to your doctor about the best way to wean yourself off of it if you decide not to stay on it...but if you are having pain, it might be worth a try. Its not addictive, and it really is widely used...its just a hit or miss thing whether it will help you or not...FYI, Lyrica is another one they prescribe for the same thing- its more expensive, no generic to date- and again, dont stop it cold turkey..
Hope this gives you more insight...
Nikki
Hi Nikki,
nice to hear from you and yes this gives me more insight! I knew that it was an anti-seizure med however, I was not told to wein myself off of it and for that info I am very grateful. last thing I need to have is a seizure. I have been perscribed 300mg for three times a day. Still, I have not had my px filled but am willing to give it a try now as the pain is becoming quite unsettling. I know that I should not drive until I know how it affects me and so I will be taking the good ol bus to and from work. The neuro warned me that it could make me sleepy and that is the last thing I need is to be more sleepy. Oh well, I will give it a try. Once again thanks for all the great info
Tasia
The one thing you need to know about this drug is if you start it and dont stay on it, dont stop it cold turkey..it can induce seizues...talk to your doctor about the best way to wean yourself off of it if you decide not to stay on it...but if you are having pain, it might be worth a try. Its not addictive, and it really is widely used...its just a hit or miss thing whether it will help you or not...FYI, Lyrica is another one they prescribe for the same thing- its more expensive, no generic to date- and again, dont stop it cold turkey..
Hope this gives you more insight...
Nikki
Hi Nikki,
nice to hear from you and yes this gives me more insight! I knew that it was an anti-seizure med however, I was not told to wein myself off of it and for that info I am very grateful. last thing I need to have is a seizure. I have been perscribed 300mg for three times a day. Still, I have not had my px filled but am willing to give it a try now as the pain is becoming quite unsettling. I know that I should not drive until I know how it affects me and so I will be taking the good ol bus to and from work. The neuro warned me that it could make me sleepy and that is the last thing I need is to be more sleepy. Oh well, I will give it a try. Once again thanks for all the great info
Tasia
Tasia W
04-21-2008, 09:46 PM
Nenu
Sorry to hear that you too are experiencing this. The pain has travelled from the tip of my tongue to my right cheek. I find that I keep biting my cheek to try and dull the pain and burning sensations. I do know that over the counter pain meds don't work but now am willing to try the gabapenten with much caution. Thank you for your response...very much appreciated and hope that you are feeling relief soon!
Tasia
Sorry to hear that you too are experiencing this. The pain has travelled from the tip of my tongue to my right cheek. I find that I keep biting my cheek to try and dull the pain and burning sensations. I do know that over the counter pain meds don't work but now am willing to try the gabapenten with much caution. Thank you for your response...very much appreciated and hope that you are feeling relief soon!
Tasia
Nenu
04-21-2008, 10:46 PM
Nenu
Sorry to hear that you too are experiencing this. The pain has travelled from the tip of my tongue to my right cheek. I find that I keep biting my cheek to try and dull the pain and burning sensations. I do know that over the counter pain meds don't work but now am willing to try the gabapenten with much caution. Thank you for your response...very much appreciated and hope that you are feeling relief soon!
Tasia
For my burning mouth, I found that brushing with Biotene helped, flossing twice daily, and keeping liquids going (water is great). Least that helped with mine. And for some reason, the B12 sublingual tablets I got that I thought I may be allergic to (I'm not) help dull the pain.
Sorry to hear that you too are experiencing this. The pain has travelled from the tip of my tongue to my right cheek. I find that I keep biting my cheek to try and dull the pain and burning sensations. I do know that over the counter pain meds don't work but now am willing to try the gabapenten with much caution. Thank you for your response...very much appreciated and hope that you are feeling relief soon!
Tasia
For my burning mouth, I found that brushing with Biotene helped, flossing twice daily, and keeping liquids going (water is great). Least that helped with mine. And for some reason, the B12 sublingual tablets I got that I thought I may be allergic to (I'm not) help dull the pain.
Tasia W
04-22-2008, 01:51 AM
Hi Nenu
This may sound stupid but what is Biotene?. Tonight while eating my dinner I had a difficult time it suddenly felt like the inside of my bottom lip was full of canker sores and I do not have any sores and the area does not look irritated. I guess the only thing irritated is me lol
Tasia
This may sound stupid but what is Biotene?. Tonight while eating my dinner I had a difficult time it suddenly felt like the inside of my bottom lip was full of canker sores and I do not have any sores and the area does not look irritated. I guess the only thing irritated is me lol
Tasia
Nenu
04-22-2008, 02:17 AM
Biotene is a really mild toothpaste, which also helps with dry mouth. I found it to be a huge help.
Might have to look around a little bit. I found mine at Shopper's (noticed you're in Canada!), but I had to go to one of the larger stores :)
Might have to look around a little bit. I found mine at Shopper's (noticed you're in Canada!), but I had to go to one of the larger stores :)
Tasia W
04-22-2008, 12:08 PM
Hi Nenu
Luckily we have a Shoppers where I live, I will check it out thanks again!
Tasia
Luckily we have a Shoppers where I live, I will check it out thanks again!
Tasia
Nenu
04-22-2008, 03:59 PM
Hi Nenu
Luckily we have a Shoppers where I live, I will check it out thanks again!
Tasia
Best of luck in your shopping! If you can't find it there, you may want to check other drug stores in your area, or if you have a homeopathic store, they may carry it as well.
Luckily we have a Shoppers where I live, I will check it out thanks again!
Tasia
Best of luck in your shopping! If you can't find it there, you may want to check other drug stores in your area, or if you have a homeopathic store, they may carry it as well.