My name is Mark. I'm new to this forum but not to Neurotalk. I usually hang out in the Reflex Sympathetic Dystrophy Forum. Was just recently diagnosed with MS. I guess you could say it's the icing on my cake. Dang it!! It better be!! Anyway, what I am curious to know is what types of pain meds you all are on. I am currently on:

250 mg of Oxycontin per day (pain med)
100 mg of Vicodin per day as a booster (pain med)
1200 mg of Zonnegran per day (nerve med)
20 mg of Lexapro per day (pain/anti-anxiety med)
40 mg of Celabrex per day (joint medication/non-inflammatory)
1200 mg of Neurotryptaline per day and last but not least (sleep med)
300 mg of Tagamet per day since I no longer have a stomach left from all the meds. (digestive med)

My doctor says that I am now "Opiate Sophisticate which she says means that being on the pains meds for so long that I have to take stronger and stronger doses to get any relief. My pain levels pretty much hover at 9 or 10 all day and night 24/7.

Is anyone else in my boat or can you offer me suggestions on meds that you find to be more tollerable and effective. I have already been on

Neurontin
Topamax

And of course my mind is so blank right now. Probably half the pharmacy. But I'll still be happy to take your suggestions. Thank you all for you help. Your the best! Chin Up!!

Mark

Hello Mark and Welcome to the MS forum.

You seem to have a great attitude, not sure I would have one in your place I think I would be kicking and screaming "stop it, enought already"

I can't even come close to what you take -

Cymbalta 30mg - anti-depressant/anti-anxiety/nerve pain
Klonopin as needed - panic attacks/spasticity/pain - it's in the catagory of valium.

Baclofen is a med I have used before and it will help with stiffness and pain.

That's it, that's my list.

Hi Mark,

Welcome to our gang, but sorry to hear about the dx.

I wonder if you wouldn't mind telling us what type of pain you are suffering from, how long you've had it, and any effects, ie. clawing, etc.?

I had terrible sensory pain for several years, and nothing I took touched it. The way I understand it, it is like a "phantom" pain (lack of a better word), so pain killers have nothing to "fix".

The other MS pain I have suffered with is spasticity, and that too went on for years. It had actually gotten to the point where my limbs were curling in a fetal position and I had to use braces to keep them straight. The braces did actually did help the pain, somewhat . . .

I started on LDN (Low Dose Naltrexone), which is a NON-mainstream drug that many MS'ers are now trying in an attempt to slow progression/reduce relapses/reduce symptoms. Of course it doesn't work as well for everyone, but it has been a miracle for me; I have only had a few days of (far less) pain in the last 17 months since starting on this drug.

That is the ONLY drug I take for MS now, and I am doing very well. I sure hate to see how many drugs you are on; it would be almost impossible to figure out which symptoms you have are actually CAUSED by some of these drugs.

Tell us more about your history, etc., if you don't mind? Are you still dx with Reflex Sympathetic Dystrophy too then?

Cherie

H Mark, I already welcomed you in the welcome sticky thread, which everyone seems not to see.

You mentioned Tagamet and there are many interactions with other meds. Here is one list:

Welcome Again, Mark...I hope you find some help for your pain.

Hi Mark and welcome to the group! So sorry you have to add yet another one to your 'resume'.

Being diagnosed in 1990, I'm now promoted to SPMS and use a 'chair'. Also have fibromyalgia and deal with the severe daily pain like you. So far I haven't found anything that touches the pain except general anesthesia!! I'm thinking about trying Lyrica (nerve pain) -- have you tried that one?

Like Cherie, I'm also on LDN, but haven't seen the same results. It does help some with the bladder issues and fatigue. That's the only thing I take for my ms since everything else had intolerable side effects.

Sorry I can't be of help in the meds department, but maybe it will be of some comfort knowing you're not alone. Please keep us informed if you find that "magic pill". This pain is really taking a toll on my life and probably yours too.

Take care.......Judy

Hi Mark,

WELCOME TO THE NEUROTALK FORUM COMMUNITY!

Glad to see you've found us but sorry about the diagnosis. At least now you know what has been causing all of your symptoms and you can now go on treatment for them.

Again, welcome.