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What medications help you the most?
Hey everyone, I hope ya'll are doing well today!!! Me? Not so great... I've really been having a lot of pain issues and mobility issues...
I don't usually discuss the types of medications I take because it's so easy for others to judge us without spending time in our shoes.. My pain has gotten a lot worse over the last few months and I was wondering if I should ask my doctor to increase them or maybe try something else? I've been on the same dosage for about 2 years now...
I take: Methadone 10mg 6 x per day, Cymbalta 60mg 1 x per day, Baclofen 10mg 6 x per day, Amitiza 8MCG 2 x per day, and Oxycodone 30mg up to 8 x per day... I also give myself weekly B12 Injections...
The few people that do know what I take for the most part understand but there are a few that tries to say there is no way I need that much medication... I do not lay around and sleep all day, my speech isn't slurred any more than anyone else with MS, and I staggered long before I started taking any medication... It definetely helps with my pain, depression, and all those horrible jerking spasms though...
The problem is for the last few months my pain medication will last about 2 hours... By the time the 4 hour mark rolls around, so I can take more, I'm hurting so bad that it takes the rest of the day to get it under control... I'm afraid to take them any closer because that would make me end up running out at some point, or it could also be very dangerous to my health, such as it is...
Does anyone have any suggestions? Will he think I'm drug seeking? Am I already on too much now and maybe need to try a different route? I know, way too many questions... lol
I would really appreciate it if anyone has any comments, good or bad!!! Thank you all for your time...
I'll be praying,
Carol
I don't usually discuss the types of medications I take because it's so easy for others to judge us without spending time in our shoes.. My pain has gotten a lot worse over the last few months and I was wondering if I should ask my doctor to increase them or maybe try something else? I've been on the same dosage for about 2 years now...
I take: Methadone 10mg 6 x per day, Cymbalta 60mg 1 x per day, Baclofen 10mg 6 x per day, Amitiza 8MCG 2 x per day, and Oxycodone 30mg up to 8 x per day... I also give myself weekly B12 Injections...
The few people that do know what I take for the most part understand but there are a few that tries to say there is no way I need that much medication... I do not lay around and sleep all day, my speech isn't slurred any more than anyone else with MS, and I staggered long before I started taking any medication... It definetely helps with my pain, depression, and all those horrible jerking spasms though...
The problem is for the last few months my pain medication will last about 2 hours... By the time the 4 hour mark rolls around, so I can take more, I'm hurting so bad that it takes the rest of the day to get it under control... I'm afraid to take them any closer because that would make me end up running out at some point, or it could also be very dangerous to my health, such as it is...
Does anyone have any suggestions? Will he think I'm drug seeking? Am I already on too much now and maybe need to try a different route? I know, way too many questions... lol
I would really appreciate it if anyone has any comments, good or bad!!! Thank you all for your time...
I'll be praying,
Carol
Thank you all so much for your comments... I'm going to the doctor next week and I'm definitely going to discuss this with him... I feel like I've tried almost everything but I'm sure there are many more things left to try... It just gets so discouraging knowing that tomorrow wont be any different from any other day... The only difference between my days is how bad the pain is that day...
I truly think if I didn't have GOD in control I would never have made it... He never gives us more than we can bare and to me that's comfort... Only thing is he thinks I'm a lot stronger than I do... lol...
Ya'll have yourself a beautiful pain free day and always remember you have MS ~ MS doesn't have you!!!!
I'll be praying,
Carol
I truly think if I didn't have GOD in control I would never have made it... He never gives us more than we can bare and to me that's comfort... Only thing is he thinks I'm a lot stronger than I do... lol...
Ya'll have yourself a beautiful pain free day and always remember you have MS ~ MS doesn't have you!!!!
I'll be praying,
Carol
Granny Carol - as always I seem to miss you when you 1st post - then boom, your gone :(
You've been given more advice than I could ever have. So, just wanted to be sure to send you a big cyber hug because tell you I've missed you and think of you often.
I'm sorry to hear current dosing is not managing very well for you. Feel like the others you should ask about it and don't worry about increases because you just have to be able to enjoy your life best you can.
xoxoxo
-Shell
You've been given more advice than I could ever have. So, just wanted to be sure to send you a big cyber hug because tell you I've missed you and think of you often.
I'm sorry to hear current dosing is not managing very well for you. Feel like the others you should ask about it and don't worry about increases because you just have to be able to enjoy your life best you can.
xoxoxo
-Shell
Oh, and one thing more. I misread your oxycodone as being oxycontin. Try looking up the differences between these since I know little about narcotics, but one of the few things I do know is that the 'contin' in oxycontin stands for 'continued release.' So maybe that would get you a smoother delivery. It's worth asking your doctor about.
ess
ess
Here's another thought. I know RSD can be extremely painful, and maybe that part is not being treated correctly, since it's neuropathic pain. For that, the best meds seem to be anti-epileptic types such as Neurontin or Lyrica.
I can't say how pleased I am to be on a high dose of Lyrica. It has reduced my truly awful nerve pain by a good 90%. I am still suffering a great deal of musculo-skeletal pain from my ankle problem, but am working on that largely through PT. I had 3 shots of cortisone the other day, as well, and am getting to be more physically active again. I'm avoiding strong pain meds.
Of course, my situation is temporary (I hope I hope), and yours I fear is not, and I know yours is far worse. So do whatever you need to, but don't eliminate the PT aspect, if at all possible. A skilled therapist can really help with pain. Your insurance may cover someone coming to your home.
Sending more hugs and good wishes,
ess
I can't say how pleased I am to be on a high dose of Lyrica. It has reduced my truly awful nerve pain by a good 90%. I am still suffering a great deal of musculo-skeletal pain from my ankle problem, but am working on that largely through PT. I had 3 shots of cortisone the other day, as well, and am getting to be more physically active again. I'm avoiding strong pain meds.
Of course, my situation is temporary (I hope I hope), and yours I fear is not, and I know yours is far worse. So do whatever you need to, but don't eliminate the PT aspect, if at all possible. A skilled therapist can really help with pain. Your insurance may cover someone coming to your home.
Sending more hugs and good wishes,
ess
Okay, your sweet note has me smiling, too. You are a very kind and prayful woman. Thank you for letting me off the hook so easily.
I wish the best for you and hope you find a way to calm your pain.
Hugs,Sumana
I wish the best for you and hope you find a way to calm your pain.
Hugs,Sumana
Oh my, please don't worry about it at all... I'm the one that is sorry for jumping out at you so hastily... It's just I feel this is the one place I can come to and not be persecuted... I know you where in no way doing that but I did feel a little judged... Let's just laugh it off and forget about it...
I love this forum so much and all of the people here... It has got me through a lot of bad times... Back In January when I had my Ileostomy Surgery the encouraging words, cards, Computer from Quix, and prayers are for sure what got me through it...
I truly hope if anyone reading this is new to our forum that you log out at night knowing you do have friends that understand you and what you are dealing with...
Now, I'm laughing it off and reading some more...hahahahahahahahahahaha...lol...hahahahahahahahahaha...
I'll be praying,
Carol
I love this forum so much and all of the people here... It has got me through a lot of bad times... Back In January when I had my Ileostomy Surgery the encouraging words, cards, Computer from Quix, and prayers are for sure what got me through it...
I truly hope if anyone reading this is new to our forum that you log out at night knowing you do have friends that understand you and what you are dealing with...
Now, I'm laughing it off and reading some more...hahahahahahahahahahaha...lol...hahahahahahahahahaha...
I'll be praying,
Carol
Carol, I did a bit of reading and found that the dose you are on is NOT after all so high. In fact, I was shocked to find they go as high as 150mg to 640mg in cancer patients. So I apologize to both you and your doctor. I honestly had never heard of someone on such a high dose. I take 5mg so it just sounded so high...so very high...to me.
And I am feeling awful that I sound like your family and friends. I have been on this board and had members with MS treat me the same way. I have always found it hurtful that where I come for understanding I was slammed. Mine was always over the amount of steroids my doctor gave me monthly. It hurts to not have the backing of those we turn to when none other understand.
I have no words, except it was pure being uneducated on the issue. I hope you can forgive me and we can move on. Maybe next time I will learn to do a little research before opening my mouth.
And I am feeling awful that I sound like your family and friends. I have been on this board and had members with MS treat me the same way. I have always found it hurtful that where I come for understanding I was slammed. Mine was always over the amount of steroids my doctor gave me monthly. It hurts to not have the backing of those we turn to when none other understand.
I have no words, except it was pure being uneducated on the issue. I hope you can forgive me and we can move on. Maybe next time I will learn to do a little research before opening my mouth.
Thank you all so much for your suggestions... I actually have been to 2 different pain management clinics and both experiences was horrible... Neither place even got close to controlling my pain... I've also tried physical therapy which only made things worse...
My doctor has also diagnosed me with RSD on top of the PPMS... At times it's so debilitating that getting out of bed is not even an option... Sumanadevii, what you posted is exactly what some of my friends and family tell me... All I can say at this point is if 8 - 30mg oxycodone per day gives me a couple of hours that I'm able to get out of bed and enjoy my grandchildren then addiction is the last thing on my mind... I'm sorry and I don't by any means mean to sound hateful but when a person is in chronic pain 24/7 all we care about is an hour or 2 of relief, not weather we will become addicted or not...
Yes Ess, it has been a while and I've really missed ya'll so much... I know without a doubt logging on here makes me feel better... Just talking to people who understand is so nice once in a while... I guess I should get a lap top and then I could get on here more... Most of the time I just don't feel like sitting here...or I'm just too lazy...hahaha
Love ya'll and I'll try and stay in touch more often...
I'll be praying,
Carol
My doctor has also diagnosed me with RSD on top of the PPMS... At times it's so debilitating that getting out of bed is not even an option... Sumanadevii, what you posted is exactly what some of my friends and family tell me... All I can say at this point is if 8 - 30mg oxycodone per day gives me a couple of hours that I'm able to get out of bed and enjoy my grandchildren then addiction is the last thing on my mind... I'm sorry and I don't by any means mean to sound hateful but when a person is in chronic pain 24/7 all we care about is an hour or 2 of relief, not weather we will become addicted or not...
Yes Ess, it has been a while and I've really missed ya'll so much... I know without a doubt logging on here makes me feel better... Just talking to people who understand is so nice once in a while... I guess I should get a lap top and then I could get on here more... Most of the time I just don't feel like sitting here...or I'm just too lazy...hahaha
Love ya'll and I'll try and stay in touch more often...
I'll be praying,
Carol
Hi Carol,
I am in total agreement with Ess regarding the pain mangement. I go to a pain management clinic and it has relieved a lot of my pain. I am still not pain free and I've just about given up on that idea as it is going to be a constant companion,,,we just need to learn to live together.
I am undergoing a trial which involves IV infusions of ketamine. The theory behind the ketamine is tha it teaches the body to find pathways for the old pain and I will say that it does give me relief. Curretnly the dose needs to be altered but that is usually handled on a monthly basis with my infusion,
Pain management does have a lot of tricks up thei sleeve and I believe it is worth giving it a try. I am lucky that my pain clinic is directly across the hall from the MS clinic so thet have plenty of experience eith MS pain.
Good luck with everything. I do know how it is to live with constant pain and it not on my list of fun things to deal with. Let us know how things go. PM me if you would like more info.
Ren
I am in total agreement with Ess regarding the pain mangement. I go to a pain management clinic and it has relieved a lot of my pain. I am still not pain free and I've just about given up on that idea as it is going to be a constant companion,,,we just need to learn to live together.
I am undergoing a trial which involves IV infusions of ketamine. The theory behind the ketamine is tha it teaches the body to find pathways for the old pain and I will say that it does give me relief. Curretnly the dose needs to be altered but that is usually handled on a monthly basis with my infusion,
Pain management does have a lot of tricks up thei sleeve and I believe it is worth giving it a try. I am lucky that my pain clinic is directly across the hall from the MS clinic so thet have plenty of experience eith MS pain.
Good luck with everything. I do know how it is to live with constant pain and it not on my list of fun things to deal with. Let us know how things go. PM me if you would like more info.
Ren
I take Tegretol, Baclofen, and Tylenol. I posted this earlier:
People with MS usually have to deal with two types of pain:
Nociceptive Pain - Pain caused by physical actions like muscle or tendon pulling as in spasticity.
Neuropathic Pain - Caused by MS affecting the central nervous system involving the somatosensory system. Think of "short circuits" where touch or sensations of movement becomes pain.
Nociceptive Pain responds to analgesics and narcotics while Neuropathic pain responds the drugs that alter the "activation thresholds" (anti-seizure drugs like Lyrica, Gabapentin, Tegritol) in the nervous system.
I agree with Ess, that a pain management specialist may be the best bet. Treating underlying spasticity and other problems may negate the need for some of the narcotics.
Bob
People with MS usually have to deal with two types of pain:
Nociceptive Pain - Pain caused by physical actions like muscle or tendon pulling as in spasticity.
Neuropathic Pain - Caused by MS affecting the central nervous system involving the somatosensory system. Think of "short circuits" where touch or sensations of movement becomes pain.
Nociceptive Pain responds to analgesics and narcotics while Neuropathic pain responds the drugs that alter the "activation thresholds" (anti-seizure drugs like Lyrica, Gabapentin, Tegritol) in the nervous system.
I agree with Ess, that a pain management specialist may be the best bet. Treating underlying spasticity and other problems may negate the need for some of the narcotics.
Bob
Hey there, Carol. So nice to see you! It's been a good while, hasn't it?
My suggestion is that you try a pain management center. If they have all your relevant medical history they won't think you're drug seeking, just trying for pain control. It's awful that you have to wait hours for the next dose.
Your're taking a lot of opioids there, between the methadone and the oxycontin, and you've surely built up quite a tolerance. That's the big problem with narcotics. Ultimately the effective dose becomes the lethal dose, as I know you understand.
Maybe you need an entirely new pain evaluation, which pain management doctors can provide. Possibly you could be put on a pain patch, which delivers relief consistently so you don't have those ups and downs.
I'm sure no expert on these things but I've been reading a lot about it, also had to go to pain management myself this year because of severe neuropathic pain.
Here's hoping you find a new and safe way to get the relief you so deserve.
Hugs,
ess
My suggestion is that you try a pain management center. If they have all your relevant medical history they won't think you're drug seeking, just trying for pain control. It's awful that you have to wait hours for the next dose.
Your're taking a lot of opioids there, between the methadone and the oxycontin, and you've surely built up quite a tolerance. That's the big problem with narcotics. Ultimately the effective dose becomes the lethal dose, as I know you understand.
Maybe you need an entirely new pain evaluation, which pain management doctors can provide. Possibly you could be put on a pain patch, which delivers relief consistently so you don't have those ups and downs.
I'm sure no expert on these things but I've been reading a lot about it, also had to go to pain management myself this year because of severe neuropathic pain.
Here's hoping you find a new and safe way to get the relief you so deserve.
Hugs,
ess
Personally, if I were being given 30mg Oxycodone eight times per day, I would worry about the doctor prescribing it. Now these are my own personal thoughts. I am not any type of medical professional.
The dose seems too high. I would surely be worried about addiction. Maybe you need to see another doctor.
The dose seems too high. I would surely be worried about addiction. Maybe you need to see another doctor.
Hi, my name is Kelli. I was just dx about 2 months ago. I'm sorry about all the pain you are going thru. I have no advice for you on that one, because I am new to all of this.
I hope you find something that helps you. This is such a great place to ask these kinds of things. So many smart, loving people on here!
Huggggs for you!
Kelli
I hope you find something that helps you. This is such a great place to ask these kinds of things. So many smart, loving people on here!
Huggggs for you!
Kelli
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