How do you manage through the pain spells?
 

I have been getting so frustrated with my pain lately....i take the meds for a month and feel it does nothing so i stop taking them and its like three times as intense within one day, so i start taking them again.

I took my kids to the movies tonight and an hour into the movie,it starts in HARD...i felt as if someone shoved a fire red hot rebarb into my ear, down my neck , into my shoulder and out my back....so im sitting there in the dark and to myself thinking "breathe, breathe, breathe" .....hoping it will pass quickly,....it was all i could do not to just scream, it hurt so bad! It didnt really subside until about an hour later. The burning is always there but never has been that intense before.

I am not on any true painkillers, nor do i want to be...i run a business and have kids, and a husband at home.

What methods do you use to get through the hard stuff? I dont have a dr. appointment for another three weeks.

Talk to your doc about Lyrics. That's what I take because it's non-narcotic
and effective on pain...

DON'T SKIP MEDS!!!

I had just really started treatment after having this for 10 yrs last March. Then I got pregnant and have been off all treatment since beginning of May. I know your pain. I have a 2 yr old, a husband and 4 4legged brats that depend on me. I can't do any treatment till after this little one is born. I do take a Norco 5/325mg when I hurt so bad I want to curl up in a corner and scream. I use a heating pad on my legs, and I have a heated throw that I use. I try to take warm baths also. Doesn't always go well with a silly 2 yr old trying to climb in the tub with me. I have a lot of extra weight right now so that doesn't help me either. When you can through out the day elevate your bad area, and watch some tv. Depending on the age of your kiddos you can also have snacks and toys close to hand for them so you can rest some. I've been having to employ all of these tactics lately with the nasty cold we've been having. I've been trying to stay as warm as possible. I don't want to have to take a Norco so I deal.

I get nerve blocks about every 3 weeks and I guess that's what keeps me from getting those extreme flares because I did get those in the early days.
Doesn't it just suck that everything is a guessing game with this monster disease?
That really is double hard with kids because they don't understand.
The burning used to feel like you describe but now the worst of the burning pain is dialed down to feel like there's tabasco poured next to my bones. I also take Lyrica when I can tolerate it and Cymbalta. Topical Ketamine cream helps the surface "burning".

HI
You should stay on the meds because if you stop it comes right back. I take morphine but it doesn't take all the pain away. I will always feel something. Medication isn't a 100% solution. I never use the phrase "The medication works" I say "The medication helps."

For me, medication and preventing pain are the most important thing.

Feel better soon!
Heather

meds.
 

I have had so many meds..even better Celebrex.. I have a problem where meds.work for alittle while,then change..I know we should not drink with meds...but I have to tell you,if I am really bad I sit with my heating pad and a glass of wine..and a funny program...It helps..:grouphug:

meds
 

You are so right..I take 4 meds.now was on 5..For really bad moments I take hydrocode..It sometimes takes the edge off...The other side effect to me when I use it,,I am hyper,,and cannot sleep

As everyone said... Do NOT stop taking your meds. If you do you will end up in the situation you are now.

I find Cymbalta has helped a lot for the burning pain. It also helps with the depression that comes along with dealing with this monster.

I'm on 3 oral medications that are not" true" pain killers, along with Percocet and Lortab.

You could try lidocaine patches as well. I also have a ketamine compound cream you could look into something like that for flare ups.

I also think none of us "want" to be on pain killers... but you need to do what you can to make things bearable. The pain will never be gone, it is about keeping it at a manageable level if possible.

None of us want to be on any meds as far as that goes. I can't take percocet so my choices are a little more limited. If you skip , eds you can have some really nasty side effects, like really bad withdrawal, torn up stomach, really bad flares, and a lot more. I got a really bad migraine that lasted a week. I mean hide in the closet with light out and sound proof earmuffs and no help. Take the meds as prescribed they are to help some with this disorder. Your Dr wouldn't have you on them if they didn't think they would help.

I was prescribed Celebrex also but didn't care for the side affects...

The joys of drugs hahahahahahaaha I'm on lyrica 100mg 3 times a day, and hydrocodone 1 or 2 every 4 to 6 hours basically when I need them, it all helps but the side effects suck, the more hydro the less sleep and now it makes me groggy and I feel high or drunk in the mornings but it helps the pain

When my pain levels are higher than usual, I take extra pain meds as prescribed by my pm dr. I then go to bed with a cup of hot tea, chocolate and a heating pad. Then I watch a comedy to try to distract me from the pain until the meds start to help numb the pain. I hope this helps you out a little.

Are you sensitive to vibrations? Loud noises? Flashing lights?

If so, the movies might be difficult for you. Especially a crowded theater with an action movie, for example. I rarely go anymore, and when I do, I choose a time with few others in the audience, and try to choose more mellow options.

meds.
 

Ya I was tired a lot ,so take them at night..With 2 other meds..I also have the katemine cream but I cannot take the pain from trying to apply..I did not see it helping anyway..Then changed to something higher does of meds.mixed into a cream..that did not help either,so I stopped ..