What meds help you both as needed and every day?
 

I know we are all different but in form of meds especially the type like neurontin etc but also as needed meds what have people found the most helpful and how long did it take to feel a difference? Thank you.

The biggest single change I made, almost 20 years ago (had rsd since 83), was to be put on "Methadone".
A "Life Changer".
It doesn't fade in efficacy. (I don't have to keep increasing it over the years). I've been started
@60 mg, been down to 10-15, up to 100 (2nd accident), now I'm back to 50-60/day.

Funny story, my first wife said "I'm not going to be married to a "drug addict". I replied, I'm not going to live my life in pain. She split, and three months later, called, screaming at me why I'm not begging her to come home?

Huh?
You filed for divorce! I decided to not live in pain, nor with one!

Oh well.
Life does go on!

Pete
Asb

Hi Daniella,

I use Atvian .5 mg twice a day. It helps control my anxiety/stress level. Which for me is a pain aggrivator. When I am flared I take an additional .5 mg.

I also see a Chiropractor 3 times a week. He doesn't use his hands he uses an activator. It's a small spring loaded insturment that he places on the area of my spine that needs adjusted. He DX my RSD and helped me find the doctors that treat my condition. I know he is the reason I don't use a lot of narcartics. Dr. S in Philly said it's one of the best things I could be doing for myself.
Take care,
Sherrie

Hi Daniella,
 

I second the Methadone. I love it. It works great for the pain. I took it for 6 years and now only take it when needed. The only side effect I found was some sweating but I do that anyway.

I also use the lidocaine patch when the pain is just in an area or a few. You can use 3 of them and they do help.

Ada

Thank you so much. Aintsobad I am glad you can joke now. I am glad you found something to work. I was suggested methadone by one pain but then it got ruled out. I am going to ask on Mon with my new doc. The lidocaine patch and the lidocaine infusion made me worse pain wise. You know my mom is on ativan and not for pain but for sleep/anxiety it really helps. I have huge sleep issues of course like many here. I am on klonopin though and my psych said you can't mix the two but she was wrong on other but maybe someone knows? I am also on serequel which I find useless in all aspects and is costly so am going to ask about that to.

I am just feeling somewhat better from the pain flare that I have endured for over a week..so here goes:

Meds that I would not give up:

Neurontin, Opana ER, Ultram, Xanex, Cymbalta, Diovan/HCT, Prontonix

Med that doesn't seem to do anything: Mobic 15 mg( anti-inflammatory)

Others I choose to keep close at hand:
TENS UNIT
Lidoderm Patch
Flector Patch

What soothes me instantly:
heating pad
X-tra Warm Epsom Salt Bath

Sleep is a real problem, and at one time, I was taking AmbienCR, it stopped working so I don't take it anymore.

When I am sleepless in Oklahoma, I will work on my art of paper quilling or watch classic movies on TV or my computer. This last flare, I went on a Bette Davis classic movie marathon by way of youtube, in comfy jammies and my heating pad and blanky:p

Yes, youtube now has movies:)

Hope this helps:hug:
Dew

the meds that i take on a daily basis are

fentanyl in my pump
zanaflex 4mg 3 pills up to 3x's daily
nortriptylne 25mg at night


and thats it.. for me.. but i have to have the zanaflex period i cant live with out it

carrie

You guys are on some strong meds. I am so sorry for your pain.
Dew I can relate to the sleepless nights. I watch so many old reruns it is unreal. Makes for long days and nights. I watch a lot of TLC too it is light hearted and often shows people with struggles who have such a good attitude. Angel thank you as well
I may be trying hbot but am going to ask my doc though he does not do it but if there is a possibilty that it can flare me up like the lidocaine infusion and the block so will see.

I only take two meds, generic vicodin 10mg and baclofen. I can't and would not care to try and live without the baclofen. It holds the uncontrollable jerking at bay. Not that I would want to try and live without some sort of pain med either. LOL Been there, done that when I was a wc case.

Other than the above, I keep my mind busy researching, writing, reading, and doing crafty things. :-)

Hugs,

Karen

I also have been saved by Methadone. I only take 15 mg a day, and I'm afraid to take more because I'm too busy - I still drive, work, take care of my kids, etc. It does not get rid of all of my pain. But I am SO much better off pain wise than I was.

I take 3-4 percs a day for breakthru. I've been taking them a while and they are loosing their effectiveness.

There's a long list of other meds and vitamins that I take, but those are the main pain relievers.

Good luck to you.

meds
 

Neurontin (1800 mg/day) and Cymbalta (60 mg/day) are essential. For flare-ups, I usually take a long hot shower and/or extra Neurontin (followed by a long nap).

Thanks again. I take a long list of supplements too. Also at times baths for me help. I do agree keeping ones mind busy is helpful as well. Many thoughts

2 things I can't live without....sorry 3.

1. Opana ER 20 mg 2 x a day

2. Opana IR 5 mg. for as needed

3. Cymbalta 60 mg. (I need more) :D

Hugs
Mary

combos
 

Oxycontin 40mg twice a day, percocet 7.5mg for breakthrough pain, 4 daily, if needed, serax 15mg, 3 daily for panic attacks/anxiety (real bad flare trigger), soma 350mg, three daily, although I am slow to take all three, make me sleepy, I time them away from my other meds, only take half of one at a time, and welbutrin for depression, 150mg once daily. Tried two 150s daily, but I got way twitchy, made me too amped and the pain consequently got worse. I know it sounds like I ought to be living in a daze, but the truth is quite the opposite. The pain puts me into a fog that I'm not even aware of until my meds kick in, and then I can actually see a thin foggy kinda thing evaporate over a few minutes, my head clears, and I can think. Tried Neurontin and most all of the other new drugs that are available and they messed my head up worse than the 'evil opiates'. I have fairly good pain relief from this combination, although I can always feel the pins and needles and such, but it's a damn sight better than the weak help the new stuff gave me. It seems to be easier to moderate the pain, taking a half of a perc and half a soma and knowing that within an hour life will be better. Sometimes I need another half a perc, but that's rare. I was concerned when this all started that I'd be living as a zombie, and I hated the idea I'd be addicted to the meds, but aside from feeling like crap for a half an hour in the morning if I sleep too long and most of the meds wear off, I haven't a complaint. Not a zombie, not jonesing for a 'fix', just living my life. God Bless my doc, he's a good guy, doesn't assume I'm a liar or a doper, just a man in pain who needs his help. May you all find your own combo and live pain free, or better yet, be healed of this nasty business. Later all, Smoke

Hi thank you to your response on this thread too. I am glad you like your doctor. I finally have one that I have a better feeling and at least works with me. Like I stated though my doctors are not into the opiates and I have seen many for other opinions that deal with rsd. I am not saying for you this is wrong because I feel what ever gives you a better quality of life. You know another person I know was stating the same how they can take opiates but not meds like neurontin. Well sending thoughts

I can't say as I blame the docs trying drugs that are more dangerous than opiates first, although I find it in contradiction to their oaths. They must be very careful not to have someone play them for drugs, there's a lot of people out there like that, for example; a friend of mine has this 'wife', and I use that term only in a legal sense. She cheats on him, blatantly, hooks for cocaine and whatever else, bugs the ****out of a person if she knows they have pain meds, she's really a piece of work. I found it amusing when I had the pain coming and going, before this last time, if she knew I had some pills, she'd all the sudden have a terrible flare up of 'fibro'. If I didn't have any, well, she was all the sudden fine. She went to the extreme of having spinal shots to convince the docs she had it, and I know ****** well she doesn't. She threw herself down the stairs to get meds, punched a window to get some, you name it, the woman is insane. Her familiy has a history of schizophrenia, so I guess she got it naturally. The best/worst was when her husband had to have some nerves in his back chemically killed. I drove him to the first appointment when they figured out which nerves needed killed, and after we left, he in horrid pain, he called her. She called back, and asked what he got for the pain. Not 'how are you?' or 'oh my poor baby', no no, what did you get, and hurry here (at work) so I can get them. He's a ****, she's worthless, yet she still scams docs out of meds. People like her make it hard as **** for people actually in pain to get relief. Another time, he was lying on the couch, on methadone and several other painkillers, still crying in agony, and this ********* tells him to get her some chips from the kitchen...and he did it! She'd steal his meds, and he'd be in agony for two weeks out of the month, and yet he stayed with her. I simply don't understand that. Anyway, the point is that docs need to be careful, but the scorched earth policy of some who will not script any opiates at all is unethical, and directly goes against their oaths. Sorry I wrote a novel, but just thinking about her makes my blood boil. She's currently a resident of the state, bad checks, false id to a policeman, wrecking a car wasted on xanax, and it couldn't be a better thing for her hubby and their son. There are more insane things she did, but I've already gone on for too long. Oh, and in case anybody was wondering, I avoided her like the plague even though he is a good friend. Lost a great deal of respect for him, and just being around her makes me think unchristian thoughts. I know I didn't see him for a good two years prior to her getting locked up, she's just too much for me to bear. Later, Smoke

Smoke,
You simply need to STAY AWAY from trash like that.
Even though you draw blame on her, her husband (your friend) is directly liable for putting up with it.
STAY AWAY! for your own good, OR, you'll find yourself not being able to get the meds, that YOU NEED!

Pete
Asb

I understand docs have concerns for addictions but that has not been in my case though I did meet a few people at the Cleveland program that had chronic pain but also had addiction issues. The thing I saw with them though is they also used other not rx meds. The docs though feel for me that since this would be for long term that it actually makes the brain more sensitive to pain in the long run. I understand this but I need something better in terms of pain control when I get into the crying pain. I already wait to long to take as I had the same vicodin bottle for more then the year. I am sorry about those people in your life. I agree that people who do abuse rx drugs are not just harming themselves but also people who are in chronic pain because it does impact our care. That is why when the stars on tv have abuse like this and there is such a negative focus on meds it even sheds more of a negative light. I am not sure the answers but I do feel that if one can be given proper pain meds for times but it can be given in small amount like even 2 weeks worth and then to revalutate. Anyhow many thoughts

Staying away
 

Not a problem. Even though she's in prison I haven't seen him other than in passing for at least two years, probably more. I lost a great deal of respect for him because of his putting up with her insanity, and just seeing his face makes me think of her. Makes my blood boil.

An aside; I used to watch Nascar a good bit, but after I heard her shrill voice proclaiming 'loser! loser! what happened to your boy!?!' I simply can't watch anymore. I used to like to watch Gordon, although Stewart is my favorite driver, (good aggressive half a fifth in his head, gun in his hand on the beltway kinda style), Gordon's clean style of driving makes one see the control he has over his machine, but...she rooted for him. Haven't watched a full race in three years. Can't get her ugly voice out of my head, and that too ****** me off. I should hope she comes to her senses, as does he, but it's too late, if I see her again it will be too soon. As far as her keeping me from getting the meds I need, well...I think I'd be on CNN, in a bad way. For that reason, if no other, I'll avoid her like the plague.