I have been in the middle of a flare for the last week and this is only the 3rd big one that I've had on a little over a year. I have doctor's appt. today,so he gets to see me at my worst. It's my GP, and I have to get refills. I don't even feel like going and it's taking everything I have to type this. I just needed someone to understand. My family is slowly, but surely coming around, but it still takes a lot out of everyone when it's this bad. How does everyone else handle them?
Cindi

Cindi -

Sorry to hear what you're going through. This may be a good time to get a referral to a pain specialist, if you don't have one already. (Strong recommendation.)

As far as flairs go, I know a lot of people find that it really helps to "double-down" on their Neurontin for at least a couple of rounds, if you're taking it a number of times a day. (It really helps me.) That, and throw as much of your analgesic medication at it as you responsibly can. Then just rest in a quiet area, if possible keeping any and all CRPS affected extremities elevated.

Finally, it's important to take note of the circumstances that may have triggered the flair in the first instance, stress is a common one, so that you may be able to take measures to sidestep them in the future.

Mike

Hi Cindi,
I'm very sorry you are in this flare. I agree with all that Mike mentioned, especially a Pain Management Dr. and a Psychiatrist. I see 1 Dr. who has degrees, diplomat -neurology, psychiatrist, and pharmacologist. I feel his understanding of neurology and meds along with psychiatry has done wonders for me. I have seen him once a month for 5 years. Now its every two months.
I tell my family I'm in a flare. That helps, they understand my need of alone time in my 'pain room' Music helps me, I have essential oils I use under heat. Scented candles, meditation, prayer, journaling, epson salt bathes or with lavender oils etc. heating pads
help me. my kitty. Reading if I don't have a terrible headache. I also have trigeminal nerve disorder. It's very very difficult to even make my Dr. appointment in a flare. Any appointment for that matter. Besides pain meds, do you have anti-anxiety meds? For me, that helps keep my sympathetic nervous system calm. I also use vitamins, anti-oxidants, eat well. The website rsdrx.com is good from a retired Dr. in Florida. Under puzzles, is 140 questions and answers, including diet. Take care and hope your floare ends soon, loretta soft hugs

I just got back form the doctor and he is so great. My blood pressure was up and he knew what was going on. I do have a pain management dr, but my GP has MS and he knows what it's like to feel like crap.

Thanks for the input, Loretta and Mike. I do almost what you are saying. We have no kids here this week, so my hubby is taking good care of me.

Hi - this probably isn't in the books - but I try to walk a little more when I am in pain, when it is quiet and cool out. Either in the early morning or in the evening. And I try to eat some of my favorite illicit fods - Poptarts (brown sugar cinnamom is my favorite!!), mint choc chip ice cream (right from the container with a spoon!), Skinny Cows, Choc bars of any kind, etc. Not a lot, but a just a little makes me feel better. And then I retreat to my room where its quiet with my little dog, who is my true best friend, where I turn off the phone so it can't ring and make noise, and I put on the overhead fan for some quiet white noise and try to rest. A cool cloth on my forehead can help, too.

Flares really stink. Pain meds are the most important part. THEN you need to chill and try to creat a routine where you take care of yourself. I like Loretta's idea of an anti-anxiety med, I haven't been prescribed one but many on this board have.

Take care and good luck, Sandy

Cindi,,,ditto to what mike said,,,,,elevate,,stay calm,,a antidepressanet and relax,avoid stressfull people,and avoid over doing any activity,,,also lack of activity will trigger a flare,too,,as well as a certain time of day[for me its between 4 and 6 pm ]i get flares for no apparent reason,,,,,,,,,,,,,,,,,good luck,,,,,,,bobber

Hey Sandy,
Anti-anxiety med made a huge difference for me. I told my Dr. I'd rather do with out pain med than anti-anxiety med if I had to choose. He agreed. Now that I'm getting restorative sleep by changing sleeping med, I've been able to cut both anti-anxiety and vicodin. The seroquel was my Drs. trial study-200 patients using a low dose to see how it affected fibromyalgia. Sleep was a side benefit. The low dose is 300 mg. It's much higher for what the drug was made for-bi-polar and schizophrenia. The report when it comes out will be amazing. I am still sleeping 9 hours restorative sleep and the result on my body is amazing. I am driving again, going to the grocery store, took my daughter and son in law out to lunch. I pray that it stays this way forever. I just can't believe it.
Your treats during a flare sound so comforting. And of course your quiet room with your little dog. What kind is he? My daughter and son in law have a miniature pincher. I just love her. Her name is Roxy. I have kept her for a week twice when she was young, while my kids went on vacation. They travel a lot, as Laura is self-employed and Lucas can work his schedule around a lot. They moved in with us in December when they came back from Chicago. Our house is big-2 story. Roxy wants to play with our kitty, Sabrina, but Sabrina doesn't want to p lay. Roxy is 9 lbs and Sabrina is 15 lbs. with her claws. So we keep them apart. I have a special room too. My office, downstairs with daybed, tv, stereo, laptop and printer, fans, It's the room I kept Victorian, pictures etc. We had a victorian home in Oregon we designed and built. Arizona , they don't fit in. We also had a home built in the 1800's we remodeled on the historical society register. We made 5 apartments in it. Porches, lap siding. You can tell I still love building, had lots of good years.
Especially during flares, I like scented candles, essence oils heated over candlel. music, heating pad in the winter, my kitty of course. Just a quiet room is so nice. My family understands when I close the door and dont take it personally.
Take care, your friend loretta

I am going to say this a million times on the forum- "thanks so much" It feel so nice to know that I am not alone. My GP gave me refills on everything, Something he doesn't do often. I got a script for a higher strength Xanax and Elavil to go along with my other meds. I cannot take any seizure meds and until they find one for me, I will have to grin and bare it. I have an appt next week with my PM doctor and my neuro.

One thing that I didn't say in my original post was that I also have Cerebral Palsy to go along with the RSD. I have had to resign my position as an Autism Mentor and severe behavior aide because of the stress, I've been doing it for over 24 years and it really stinks to have to quit. I have found a job on the internet and I blog a lot, so we are very fortunate in this economy.

You all are the greatest and I feel I am among friends

Cindi

Cindi,

I know the signals of a pain flare and I do not procrastinate in getting my person in a stress-free zone. I have used the same med techniques Mike wrote about, and they work.

I meditate on a daily basis, and find my stress-free zone within myself ( my safe, peaceful place)..and let go of stuff I can't control. I talk myself down before the anxiety consumes me,totally.

The sympathetic nervous system has a mind of its own, and it seems to kick in overdrive, for me, when I feel helpless, trapped, and out of control. I have learned to accept that it is best for "me" to withdraw from an atmosphere that is negative..be it people or the environment.


Dew

Hi. I am sorry for your flare up and can relate. I guess for me I try to remind myself that I get horrid flare ups and then in time it settles down. I just need to do the best I can to get through the bad days eaning self nurture,reaching out to people,meds,holding to hope,etc. My pain doctor now says on the days you can do do as much as you can on the days you fell horrible do the best you can. I am glad you have some doctors who are assiting you that is very key. Please take care and I hope you get a break soon