What meds do you take for chronic MS pain

[socrates2k1]

What medicines do you take for chronic MS pain?

When I had insurance, I took prescription meds, now that I don't have insurance, I have to rely upon
OTC pain meds, like acetaminophen and ibuprofen.

However, neither of these OTC's can even touch my pain.

Does this sound familiar to any of you?

[BOK2Bjan]

Boy have I ever been there, done that! It took a lot of soul searching to decide also, but I am titration off the opioids. I ended up on high doses yet still had pain.

During a recent Thoracic nerve ablation, while repeatedly getting IV fentanyl - and it not even touching the pain - I decided my tolerance had become too great and it was time to get off.

I'm almost there. I'm trying everything possible - but the leg pain due to severe spasticity and my spine pain from degenerative disc disease, stenosis, tarlov cysts, scoliosis, and facet joint arthritis, as well as pain from severe osteoporosis - aren't going to go away!

I like the medication idea, and wish I could afford accupuncture!

[maestro1959]

Hi.  I am currently using the Duragesic (morphine) patch.  I did not have any insurance when I began taking it.  Someone hooked me up with a program Johnson & Johnson has.  It pays for the patch in full as long as you are using the name brand item, not the generic.  There are forms that have to be filled out by your doctor, but it was not terribly difficult as I recall.

I am so grateful for it.  It is the only medication from which I get relief.  I was spacey when I first began using it, but my body adjusted and I do just fine now.  I have no idea what you need to do, but I would start at their website.  Best wishes on your search.

Most sincerely,
Beth

[COBOB]

Actually,  Oxycontin is oxycodone.

"Oxycodone (OxyContin and other brand names) is an opioid analgesic medication synthesized from opium-derived thebaine. It was developed in 1916 in Germany, as one of several new semi-synthetic opioids in an attempt to improve on the existing opioids: morphine, diacetylmorphine (heroin), and codeine."

http://en.wikipedia.org/wiki/Oxycodone

Bob

[Heather8]

I mean Oxycontin not oxycodone.

[Heather8]

I am on Methadone. It helps with pain but the pain is still there. It's the only other option Medicare gave me and my doctors. It's cheap. I was on percocet which helped alot but I was on it for a long time and wasn't working anymore and the doctor did not want to up it any more . They wanted me on Oxycodone but medicare wouldn't cover it and I have no money so I can not pay out of pocket.

[Ufrustrated2]

>>I tire of people thinking those on pain meds get some kind of a kick out of using.  

i've run into this often and attempt to educate them that i have real medical issues. most stop listening and then i stop talking to em about it.

i'd gladly dump this disease on them and they can have the constant battle. i'm weary of such people. a few mean well, and i listen to them. but the gossipers and character assassinators, i walk away from. way too many of em in this day and age

so, i can empathize is all i'm saying ...

[Sumanadevii]

I take Oxycodone with acetaminophen 5-325.  I take four pills a day.  Sometimes I half them.  Other times I take a whole one.  I have never ever felt HIGH.  It takes about a half hour and the pain calms.  It doesn't go away.  It is chronic and I don't expect to ever be pain free.  I have no fear of addiction because it is being taken for PAIN not recreation.

My doctor has discussed with me the possibility of my body needing a higher dose in the future.  If that time comes, I will made the decision if I want to go higher or stay on the lower dose.  I tire of people thinking those on pain meds get some kind of a kick out of using.  I was a young woman of the 60's.  I know what recreational drugs were about and how I felt taking them.  This...well this...is an entire different story.  Medications for real pain don't work that way.

[Ufrustrated2]

hydrocodone for MS pain and degenerative/neuro disk pain.

it helps dull the edge. baclofen is no longer working for me for neck spasms.

the hyrdocodone has never helped witht the right pain and its shooting pain to back of head. eye tests for the most part are normal although "the VA" suggests it could be due to MS.

have been doing my throw up spells for about a week now due to some kind of head/neck pain. these type episodes really drain me. the hydrocodone allows me a few hours to put on a socialable face then its back home to hide and not move much.

the VA gave me klonipin but i don't like it much. takes a long time to work. but  it helps with good sleep along with alternating with ambien. otherwise my sleep is horrible.

good luck

[PDMS]

I also have no insurance coverage and must use gabapentin (generic for Neurontin); however, I do not find it to be inexpensive.  If you have found it for $4 a month, please let me know where.  I am paying $78 a month for a 1-month prescription

[cpk777]

See if you can get on medicaid. Most states will provide medicaid coverage if you have a medical condition and limited income.  Gabapentin is cheap and doctors like to prescribe it because it is not a controlled substance.  It didn't work for me, but it might work for you.  On medicaid, it might be free or will cost no more than $4.00.  Good luck.

[Quixotic1]

I take carbamazepine for Trigeminal Neuralgia

Hydrocodone for a peculiar symptom called Sensitivity to Eye Movement - where when I am fatigued, everytime my eyes look left I get painful, disorienting, whirling zaps of electricity through my head.  They make me non-functional.  I know, I know, it sounds like a crock.  sigh.

Back spasm/spasticity - clonazepam

Quix

[socrates2k1]

Carol,

My apologies, you misunderstood my statement.

I was correlating a "high" with being "pain free"

My apologies, I mean pain free (or in many cases, just "less pain"), I do not in any way mean that the pain medicines any of us take, for pain, gives us a "high".  Please forgive me, if you misunderstood that, I apologize.


Take care and God bless,

Socrates

[grannyhotwheels]

I disagree with the statement of getting a high feeling. I take several different pain medications and I never have a high feeling but I do get pain relief.  It never all goes away but it does become tolerable.  I currently take Methadone 10mg 5 x per day, Oxycodone 30mg up to 8 x per day, Baclofen 10mg 6 x per day, and I also take Cymbalta which I believe helps some with pain.  I take Oxybutinin for bladder spasms also.  I know this seems like a lot but it's been upped several times since I started taking it all.  Most of these are pretty expensive without insurance except for the Methadone which helps a lot and is pretty cheap.  You might talk to your doctor about the Methadone for your pain.

Like I said earlier, I don't get a high feeling and because some of my meds are extended release there is always some in my system so I don't have worse pain between doses.  You need to find a good Pain Management doctor or else a good PCP (which is what I have) that will help get the dosage right so it will help with the pain and not give you a high feeling at the same time.

I'll be praying,
Carol

[Deb61]

Before my MS diagnosis, I took a drug called Tramadol/Ultram.  I took it for several years, I think about three years, every single night.  At the time, I was being treated for the pain of fibromyalgia (which my neuro says was a bogus and lazy diagnosis for me).  I stopped taking it, cold turkey, when the pain level went down to a tolerable level, but had no problems at all.  

It really did help with the muscle aches (or the muscle spasms of MS--or whatever the h*ll it was) I was experiencing.  I had a horrible time with pain.  I still have pain, but it's not every single day at an OMG level.  The pain from TN, was at an OMG level, but the Gabapentin that I was prescribed helped, and it was less than a week.

If I have that level of chronic pain again, I would ask the doctor about Ultram.  It was obviously non-addicting for me, and from what I understand carries only a mild addiction risk and made the pain tolerable.  Plus, when I took it at bedtime, I didn't feel medicated.  

Deb  

[socrates2k1]

Jana,

Listening to what you said, about pain meds, reminds me of a lesson I was taught way back in high school, about drugs.

We had a police detective from the narcotics squad, come and give us a lecture about drugs, and it fits prescription to OTC to street drugs.

Think about your body, as running normally (yes, even with pain).
When you take the pain medicine, it relieves your pain
(gives you a "high" pain free, if you will).

Now, when you come down from your "high" (i.e. the pain returns), then your pain is actually worse, than before you took the pain medicine.

You see your body, when the pain medicine wears off, does not return back to "normal", it falls below normal, meaning there is more pain then before.

So, if you take the same amount of pain medicine, you actually do not return to the previous pain free "high", and each time (you take the same amount of pain medicine), when the pain medicine wears off, you end up with more and more pain.
It's a vicious cycle.

Therefore, you eventually end up taking more pain medicine, or you change to a different pain medicine.

Once you "max out" dosage wise on one medicine, you move up to a more powerful pain medicine, and begin the course all over again.

Eventually, you run out of pain medicine to take, or quit taking pain medicine.

End of lesson.

Take care and God bless.

Socrates

[AtlantaJana]

Socrates...I have a "maybe" dx for MS and currently undergoing studies; however, pain is pain.  I have been suffering wildly for 13 years.  I have cervical and spinal stenosis, had spinal myelopathy, have rotor scoliosis, spondylosis, DDD, polyosteoarthritis, and a couple other things.  I had a sympathectomy for RSD. Pain, at times, has made me suicidal.

  Having said that, I have been on everything from darvocet to morphine (now), and used fentanyl patches up to 200mgs over 72 hours.  One thing I have learned, the more you use, the more it takes.  I was up to 3400mgs of Neurontin when I quit.  I have tapered from 13 prescriptions (unGodly amount, but needed at the time) down to four.  I even hate taking those every single day.  Sadly, even morphine barely helps the back, neck and leg pain I am now experiencing.  So, in my mind, why take it at all?  The only time I know it works at all is when I stop taking it and I do titrate down as to avoid withdrawal.

I, like some others, am titrating down so that I can try cognitive therapies.  I have tried biofeedback in the past with limited success but am willing to try again.  I am looking at accupuncture (my pain dr.studied eastern medicine and has an open mind), massage (though cost prohibitive right now) working into very light exercise, even shots of sunshine when there is some..lol...

I want to live a life.  The heavier the medication I take, the more it seems I am looking at life through a fish lens.  It makes me sleepy and I don't eat right.  It has taken me 15 years, 15,000 tears, and lots of sleepless nights to decide to get off meds.  I may not make it, but I am going to give it my best.  It is a very, very tough decision.  I even had my intrathecal pain pump removed.  When the pain gets so bad I want to scream, I may cave, but for now, being "there" when my kids are around, when it's a holiday, or many other reasons, I will tolerate the pain as much as possible in order to get back into the human race.

I am DEFINITELY NOT AGAINST MEDICATIONS FOR PAIN.  I am just tired and this is only one person's perspective.  Take it if you need it, but be careful and have a responsible physician who listens, watches, and truly cares.

Good luck!
Peace....
Jana

[Adnvwsti]

Socrates, if you are able to get a prescription for Gabapentin, shop it around.  Call all the drug stores in your area to get the cheapest price.  Don't rely on Walmart to be the cheapest.  It's not.  And as Gabapentin dosages go up, the price goes up, of course.  I'm taking 4 300 mg. tablets per day of Gabapentin, which does help some, but it's costing me about $90 a month without health insurance.  For breakthrough pain, I'm prescribed baclofen or flexeril as a muscle relaxer (flexeril is cheaper) and then Darvocet and Vicoden.  The Vicoden I save for the evening when the activity of the day has caused the pain to reach an intolerable level that Darvocet cannot touch.  We have to be careful with the Darvocet and OTC acetominophen because these drugs can damage the liver, and you already know you have liver damage.  Like you, I also have degenerative disc disease, neck and back, so I know the pain you're describing there, but that doesn't mean that my pain matches yours.  Yours may be way beyond mine.  I will pray you are provided medical care for this.  You must have it, I think.  jo

[HVAC]

I have had MS for many years. I also have a messed up neck, shoulder, knee, lower back, and have bad head aches. Hypnosis helps. Exercise and stretching help me, but I have to work up to it slowly. I have to walk no matter what or I lock up.

Alex

[Jason732]

For a long time I tried to manage my pain with OTC meds but they never seemed to help. My neurologist put me on Lyrica and it made a big difference. It quiets down the dysesthesia and paresthesia in my arms and legs very well except during a relapse.

[steph74]

If you don't have insurance, look for rx drugs that are available in generic formula.  I don't know what kind of pain you have, but neurontin is available as a generic (gabapentin) and it's very inexpensive.  I think I paid ~ $4/month with insurance.  Even w/o insurance it still probably won't cost more than buying a months' supply of ibuprofin.

Good luck.

Stephanie

[DawnYM]

I hear ya!!! Nothing can touch mine either, if I find something I will let you know!!! Oh, just remembered, did anyone here ever try those pain patches!!! I've used 3 at a time down my spine and they do help!!! They have a hotness and coldness at the same time, I gotta get me some more of those, you can get them at the drug stores in store brand names!!  Here's to feeling better kids!!! Fingers crossed!!!

[socrates2k1]

Mary and Dennis

[Well, I also have a liver problem (NASH, Non-AlcoholicSteatoHepatitis), which basically means my liver has damage like someone who is an alcoholic.]

As far as my pain, I have degenerative disc disease in my lower back, and upper neck, but also have MS hug pain, and the "stabbing pains" that are punctured into my body, at random times (MS twister, if you will), lower rib pain, and pain throughout my body (like someone has taken a baseball bat to your entire body, and finally painful headaches (including stabbing pain through your skull into your eye).

Working on Social Security and SRS (SRS help until I get Social Security)

Socrates

[Sailorsong]

Since I can't take a lot of pain medications (liver, kidney problems) I use a form of meditation to help with my pain. Of corse I have been dealing with this pain for over 20 years and it have become almost second nature for me. While laying down in a dark room I concentrate on the pain and I guess force a sensory overload to my brain so it stops receiving the pain signals. I started doing this with the lower level pains and now can block out most of the more severe pain this way. While it doesn't really stop all of the pain, it does make it tolerable.

Dennis

[twopack]

What kind of pain are you having and where?  I'm not a very good herbalist but do know there are some good pain relief substances available from nature.  They aren't any more risk free than OTC or prescription meds though so you would need to seek advice from someone who is knowledgeable.

Alex has often mentioned how helpful hypnosis is.  I had quite a bit of success with that prior to my joint replacement.  Relaxation and guided imagery can go a long way towards relief but take some practice.  

Are you unable to get any type of assistance with health care costs?

Mary