Pain Meds?

[FlowerLady]

I'm battling constant pain - some parts of my body more so than others. I've tried Lyrica and Cymbalta which in combo were not good for me. I would be interested to hear about other strategies.
Yoga is a part of my daily life, but some days I just want to be still and not move at all - all rather depressing! During my professional life I was very active so I'm having trouble wrapping my head around all the changes. It's so hard to know when to push a little extra and when to easy off.
Any and all info would be helpful.

[babygirl_vic]

I've tried the Lyrica two seperate times, and not had any luck with it either.

[garrysgirl]

I am constantly hurting as well and none of the meds have done anything for me. I went to a pain clinic today and they suggested trigger point or botox shots neither of which I can afford with no insurance. I ended up with a script for lidocaine (numbing) cream. I hope you find some relief soon.

[Ihb7337]

New to this but it is about pain meds


My name is ilsa. For the past few years I have had odd symptoms that, by themselves, could be various afflictions. In 2005 my first frontal lobe lesion appeared. I was watched every two months for a year (MRIs every two months to look for changes.) After the first year, with only the one frontal lobe lesion, I was decreased to two MRIs per year then finally only one each fall. All along I had been having these odd things happen to me that I had just written off as odd things.

Severe limb pain, mainly arms at first but then to legs ( never torso). Pain was horrible but I also suffer from migraines so always had percocett around for headaches so would just have to take an extra now and then for the limb pain. I play a lot of golf, so I am out in the sun quite often. I would get these foggy, unbalanced feelings while out on the course, but wrote them off as heat problems and once I got back to golf cart and got it moving, creating the wind to cool me down, I would rally and keep going.

As many of you have noted, there are so many doctors out there that cannot explain what is happening so they label it " anxiety". Right! I have been tested for every imaginable illness to explain my on going headaches and severe body pain and all came back negative. Finally in the fall of October 2010 my second large lesion appeared in my speech center. I only have a couple of times during the year when my speech gets slurred which is good.

I did finally find a wonderful immunologist who was the first one to believe that my pain was real. He tested my for lupus and all kinds of things but no conclusions, til this second lesion appeared. The immunologist prescribed percocet three times a day! Yep three times a day. Have been taking it for almost a year regularly and it has helped tremendously. I wish I could take regular nonsteriodals but they make me I'll. The problem with the narcotics is what has happened to me lately and I don't think I can go through this again.

There have been a couple of bouts of pain tha blow through the three percocet a day, requiring me to take a fourth a few times. What that does however is have you end up needing your script written sometimes three days earlier than is scheduled. What then happens to me is that I am never allowed to talk to the doctor ( only his nurse and she decided whether what I am calling for is justified to talk to him which it has never been), or I get a medical assistant who outright refuses to talk to the doctor about a 2-3 day early refill or she argues with me that I must be mistaken, my meds could not have been filled when I am saying they did x( as I am looking at the bottle) and she adds days as though she is punishing me for even bothering them with the request.

I'm not sure who has ever been on narcotics for any period of time, but abrupt termination of them causes such a horrible withdrawal, with chills, sweating, nausea, headache and shaking....and my point is that it could be so unavoidable ! The damned doctor is the one who wanted me to take them three times a day for months ( automatically creating an addiction) and then creating periods of withdrawal, once you end up 2-3 days short, since you had to add extra tabs during a pain storm! I am so glad I get to see a new neuro guy tomorrow to try to get al l of this figured out and have just one provider rather than a couple .

Has anyone ever gone through this narcotics withdrawal before ? Or had royally rude and *****ing, lacking in compassion clinic staff treat you so rudely as though you are a drug addicts? I'm 54 years old. My partying days are so long overdue. If I didn't need something for pain, my God, I wouldn't take it. Thanks for listening, can't wait to report on my new guy at the med college in Milwaukee.

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[BTJenkins]

Ask your doctor about Nuedexta. Supposed to be very good for neuropathic pain. It was recently approved by the FDA for Emotional Liability but it has undergone extensive testing for neuropathic pain related to MS and ALS. No off-label prescribing restrictions for your doctor. The company that makes it says the next FDA approval for the drug will be for MS Pain.

It can't hurt to try it.

[jmm9503]

I'm currently taking Tegratol for the pain and itching 4 times a day. Doesn't get rid of either completely, but makes life doable as long as I take it on a regular schedule. Good luck to all with this problem as it is extremely frustrating and difficult to explain to regular mortals (those without MS).

[wkikta]

Nuedexta (dextromethorphan hydrobromide and quinidine sulfate) is FDA approved for Pseudobulbar affect (PBA). It is a symptom treatment medication along the lines of Ampyra for MS. Hopefully it will work for some other problems.

[tommylee]

In no hurry to jump on that boat. It really sucks to live like a junkie.

That is why I use MM or reefer.
It does not kill the pain as well but it does allow me to function, eat, work-out, clean the house etc without feeling totally wasted.

Physical training, eating well, trying to challange myself in little ways daily seems to help most. Small doses of MM seem to let me do that without the heavy drug fog most narcotics seem to give me. (and no withdrawls if I skip it.)

If its available to you and you try it, start slow. it takes some getting used to and some people don't like it at all.

It's legal in my state but I'm pretty sure it's available in all 50?

It's not a "cure all" or miracle drug but it seems to be just enough to keep me going without knocking me out. (I don't tollerate most drugs very well.")

Good luck. living with constant pain is difficult and part of it seems to be a mind-set. You just have to expect to feel bad and keep going anyway.

[barryrado]

pain

hey all, i have injuries in my hips and ablown disc in my neck, from falls i've taken. when my pain is severe i can't walk, because the spasms drop me to the ground. the only thing that helps is a strong narcotic. barry

[FlowerLady]

Pain Meds

Thank you for all the information & confirmation. Some days I feel like I'm a crazy person so It's good to hear from you. I do use narcotics when I must, but try to keep it to a minimum. Nuedexta sounds promising and worth a try. I will mention it to my neuro the next time I see him. Until then I'm seriously going to work on the MS Recovery Diet and see what happens. Gluten does make my pain worse so now I need to find out if any other foods are in the same category. With your help, new meds, and better diet I feel more confident in living a quality life. THANK YOU!!!

[girlgriffin711]

It's legal in my state but I'm pretty sure it's available in all 50?

It may be "available" in all 50 states...but it sure isn't legal in all 50!

[palmtree]

My name is ilsa. For the past few years I have had odd symptoms that, by themselves, could be various afflictions. In 2005 my first frontal lobe lesion appeared. I was watched every two months for a year (MRIs every two months to look for changes.) After the first year, with only the one frontal lobe lesion, I was decreased to two MRIs per year then finally only one each fall. All along I had been having these odd things happen to me that I had just written off as odd things.

Severe limb pain, mainly arms at first but then to legs ( never torso). Pain was horrible but I also suffer from migraines so always had percocett around for headaches so would just have to take an extra now and then for the limb pain. I play a lot of golf, so I am out in the sun quite often. I would get these foggy, unbalanced feelings while out on the course, but wrote them off as heat problems and once I got back to golf cart and got it moving, creating the wind to cool me down, I would rally and keep going.

As many of you have noted, there are so many doctors out there that cannot explain what is happening so they label it " anxiety". Right! I have been tested for every imaginable illness to explain my on going headaches and severe body pain and all came back negative. Finally in the fall of October 2010 my second large lesion appeared in my speech center. I only have a couple of times during the year when my speech gets slurred which is good.

I did finally find a wonderful immunologist who was the first one to believe that my pain was real. He tested my for lupus and all kinds of things but no conclusions, til this second lesion appeared. The immunologist prescribed percocet three times a day! Yep three times a day. Have been taking it for almost a year regularly and it has helped tremendously. I wish I could take regular nonsteriodals but they make me I'll. The problem with the narcotics is what has happened to me lately and I don't think I can go through this again.

There have been a couple of bouts of pain tha blow through the three percocet a day, requiring me to take a fourth a few times. What that does however is have you end up needing your script written sometimes three days earlier than is scheduled. What then happens to me is that I am never allowed to talk to the doctor ( only his nurse and she decided whether what I am calling for is justified to talk to him which it has never been), or I get a medical assistant who outright refuses to talk to the doctor about a 2-3 day early refill or she argues with me that I must be mistaken, my meds could not have been filled when I am saying they did x( as I am looking at the bottle) and she adds days as though she is punishing me for even bothering them with the request.

I'm not sure who has ever been on narcotics for any period of time, but abrupt termination of them causes such a horrible withdrawal, with chills, sweating, nausea, headache and shaking....and my point is that it could be so unavoidable ! The damned doctor is the one who wanted me to take them three times a day for months ( automatically creating an addiction) and then creating periods of withdrawal, once you end up 2-3 days short, since you had to add extra tabs during a pain storm! I am so glad I get to see a new neuro guy tomorrow to try to get al l of this figured out and have just one provider rather than a couple .

Has anyone ever gone through this narcotics withdrawal before ? Or had royally rude and *****ing, lacking in compassion clinic staff treat you so rudely as though you are a drug addicts? I'm 54 years old. My partying days are so long overdue. If I didn't need something for pain, my God, I wouldn't take it. Thanks for listening, can't wait to report on my new guy at the med college in Milwaukee.

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

My heart goes out to you. I'm in the same boat. My life before MS did not include drugs. Even when I had excruciating pain in my knees and neck and carpel tunnel...
I never asked for pain medication. I'd rather endure having my leg cut off without anesthesia than being treated like an addict. I always liked that solid feeling of leaving a doctor's office holding my head up high.

Then after my first attack with ON, my doctor said, "you're going to have pain in that eye. It's better to take the medication because the pain puts too much strain on your system." I got 3 percocets a day and managed to get by with one or two for many months. Then, in November, the pain in my eye started to get worse and worse. I started taking the perks every 8 hours, watching the clock to make sure I didn't abuse them. Now they don't work.

I thought my doctor would be prepared to increase my dosage because it's inevitable that we build up a tolerance to narcotics. But no. She wrote me her last script and sent me to a pain clinic. I don't have my appointment yet but I'm so scared they are going to put me through some kind of hell. Yesterday I was walking around the hospital looking for the place in the rain. I felt like a street person wandering around looking for drugs.

If you have to go through withdrawls, leave a post and I will give you my email. We may be going through this together and I'd be willing to support you every minute.

[FlowerLady]

Another Week

After another week of nasty pain & the ups & downs of Lortabs, my neuro has prescribed an new form of narcotics - Butrans. Since I feel decent today I'm hesitant to start, but one good day out of five isn't a great average. Will sleep on it and see how things go tomorrow before I try the transdermal patch. The saga goes on!!!

[Ihb7337]

My heart goes out to you. I'm in the same boat. My life before MS did not include drugs. Even when I had excruciating pain in my knees and neck and carpel tunnel...
I never asked for pain medication. I'd rather endure having my leg cut off without anesthesia than being treated like an addict. I always liked that solid feeling of leaving a doctor's office holding my head up high.

Then after my first attack with ON, my doctor said, "you're going to have pain in that eye. It's better to take the
medication because the pain puts too much strain on your system." I got 3 percocets a day and managed to get by with one or two for many months. Then, in November, the pain in my eye started to get worse and worse. I started taking the perks every 8 hours, watching the clock to make sure I didn't abuse them. Now they don't work.

I thought my doctor would be prepared to increase my dosage because it's inevitable that we build up a tolerance to

narcotics. But no. She wrote me her last script and sent me

to a pain clinic. I don't have my appointment yet but I'm so

scared they are going to put me through some kind of hell.

Yesterday I was walking around the hospital looking for the

place in the rain. I felt like a street person wandering around

looking for drugs.



If you have to go through withdrawls, leave a post and I will give you my email. We may be going through this together

and I'd be willing to support you every minute.

Thanks palm tree.....my immunologist told me that if I started to break through with pain that I too would have to see a pain specialist. He explained that he is limited to writing scripts for percocett ( or a med similar) but if I required anything stronger that I'd have to see a doctor who was a pain specialist. I tell you, I'm not really frightened of the codeine , it's all the damned Tylenol that are in the percocett that I would rather not take. Codeine by itself works well for pain, but for my headaches I need the combo including the Tylenol

I think all of us have to buddy up and try to get through this together. We have to remember to share good days too. Like yesterday was a fab day for me...pain and sx free. Today not so much but will get through it and tomorrow is another day that could be good! Thanks for your support. I will do the same for you!

[Ihb7337]

My heart goes out to you. I'm in the same boat. My life before MS did not include drugs. Even when I had excruciating pain in my knees and neck and carpel tunnel...
I never asked for pain medication. I'd rather endure having my leg cut off without anesthesia than being treated like an addict. I always liked that solid feeling of leaving a doctor's office holding my head up hiThen after my first attack with ON, my doctor said, "you're going to have pain in that eye. It's better to take the medication because the pain puts too much strain on your system." I got 3 percocets a day and managed to get by with one or two for many months. Then, in November, the pain in my eye started to get worse and worse. I started taking the perks every 8 hours, watching the clock to make sure I didn't abuse them. Now they don't work.
I thought my doctor would be prepared to increase my dosage because it's inevitable that we build up a tolerance to narcotics. But no. She wrote me her last script and sent me to a pain clinic. I don't have my appointment yet but I'm so scared they are going to put me through some kind of hell. Yesterday I was walking around the hospital looking for the place in the rain. I felt like a street person wandering around looking for drugs.

If you have to go through withdrawls, leave a post and I will give you my email. We may be going through this together
and I'd be willing to support you every minute.

Hi palm. I use an iPad for posting so, as cool as the darn thing is, it makes it difficult to respond to posts like I am now....it's a weird thing where I have to hit return a bunch of times blah blah blah....so if you want to talk to me privAtely write to. *****]. I don't know how to private message on this board and I figure it's ok to leave my email address on here. Sort of a trusting person I guess. Hope this finds you having a better or maybe a good day!!! Ilsa

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