I am so over SHUT DOWNS due to FM & all its sx's. I feel like that little guy thats all humped over on the movie Lord Of The Rings but i cant jump around like him & a weathering stick constantly shaking & unstable when I go down. Did a MAC truck hit me or what?

I had 3 good days...felt kinda poopy this morning & all day klingy to Phil, then POW. Now in bed crying in pain with a sudden complete shut down. Hoping it doesnt last the rest of the trip cause these can go for weeks. This is crap!

The constant RSD throbbing, swelling, heat to cold instantaneously, electrical shocks, my leg & foot numb & toes tingling, the sciatica, the imbalance, the headaches, the noise levels, the frustration, the anger, the crying...

Researching while laying in bed. There has got to be more for us out there with all this.

Dear olecyn,

It sounds like you need to implement a flare up plan and quick. Little steps are ok to get you going. Do you have a flare up plan? If not I posted some info on the subject a few days back. PM me if you need a buddy to help you get going.

MsL

Cyndy,
It seems that you don't have your pain controlled well at all.
I think we all shut down occasionally, but not for weeks.
(well, I've just been down for a week)..........

This change in the weather, and any stressors add up on us.

Talk to your doctor.
You should have enough meds to save some up for "break through" pain!

pete

Hi Cyndy,
I'm so sorry you are feeling so rough. This is a bad day for me too. We dropped 20 degrees in one day. Besides RSD, I also have Fibromyalgia. I found a good Dr. 5 years ago when I went full body. I was having terrible electical shocks dailey and every night.3200 mg of neurotin put a stop to them. I hated the feeling in my head and weight gain, but glad to stop the shocks, spasms, etc. About a year ago, I asked my Dr. if I could go off of them. So he gradually took me off, and I didn't get the shocks, spasms back. I've lost some of the weight and working on the rest.
Journaling helps me emotionally. Listening to favorite music also helps. Do you take any anti-anxiety meds? I take lorazepam 1 mg 3 times a day. I was on 2mg 3 times a day, but was able to cut back when I started sleeping well-10 hrs a night. The restorative sleep also helped with the nerve pain, and was able to cut back on vicodin too. My Dr. is a neurologist, psychiatrist, and pharmacologist. He just finished a 200 person study for the pharmaceutical company for seroquel-and seroquel effect on fibro patients.I take 300 mg. The sleep has been so good for me. I was staying awake all night till 5-6 a.m. Now I sleep 10 hrs. It has helped so much.When his report is published, I'll post it here.
I know it is difficult, but trying to walk, swim, exercise is some way, keeps us mobile. I wasn't diagnosed for 4 years. I got it following surgery. I got frozen shoulder, and couldn't move arm at all. Physical therapy-100 treatments and 100 massage therapy treatments got use back. The torture was worth it. In fact, went into remission for at least a year until it moved into other shoulder. The therapist told me that might happen. No one said RSD and I didn't understand how that could happen, but it did. More therapy and remission again. Then I felt a pull in my hand while water skiing. Misdiagnosed-dr. said I had rheumatoid arthritis. I knew that wasn't right, so found a good sports injury hand Dr. and he diagnosed me in 1 minute.
Education of Drs, therapists is key!!!! My neighbor is a retired Dr. that teaches at the medical school. He has invited me to speak to his class of students and I am going to this fall-winter.
I wish we could get RSD on one of the talk shows, Dr. Oz, The Doctors, Dr. Phil, Oprah, etc.
Cyndy, hang in here. I have a scented candle going, watching The Doctors, or listening to music this afternoon. I am going to make up some invitations to a chocolate tasting we have every Wednesday. It's a healthy Dark Chocolate.
Cyndy, do you have any pets? I find them so comforting. After our only daughter got married, we got a kitty.She loves sleeping with me. Our daughter and son in law moved to Chicago for a year, when he was hired by one of the commercial airlines. We missed them so much. They moved back last December and are staying with us. Lucas flys to Chicago on Wednesday and comes home Saturday. It's so wonderful they are staying here. Our daughter is a court reporter and self-employeed. She has a flexible schedule. She works for a firm that has 20 reporters, She does her own transcripts so is home a lot. We are very close. They have a little min pin. The dog and cat aren't compatible. The dog wants to play with the cat, but the cat doesn't want anything to do with the dog.So they each have their own floor and special times outside.
So glad you found this wonderful group of friends. I have learned so much and been comforted by others. Take care, loretta soft hugs

Hello,

If I go by your joining date your not new to this monster. If your like me your going along with managed pain and then it flares. The pain is so awful you forget all the things you know will get your through the pain.

Make sure you are taking your meds correctly and increase the ones you normally would through the flare up. DRINK LOTS OF WATER!!!! Tell yourself you will get through this flair like you have the others. The weather is killing all of us right now and it's the one thing we can't control. It was 78 today and yesterday the high was 57. There is a storm moving through tonight and then our temps should be back to normal. I have been on fire all day and I look like I have been out in sun and have a 2nd degree sunburn.

RSD/CRPS can no doubt knock us off our feet. We have to allow for some down time and pay close attention to taking care of ourself so we can get back us swinging so to speak.

Take care of yourself,
Sherrie

RSD FLARE-UP plan? I have those with weather & just trying to use my hands, arms, function, increased cardio, u name it. I can feel it throbbing throughout my system even head when laying down especially at night.

FM SHUT-DOWN plan? It just happens & especially when my .

All the sx's are consistently present 24/7 while on ER Opiods unless I have Botulism Denerviation for the TOS, then it increases for 1-2 weeks, then calms down the muscles & nerves. I have a few weeks of, dont breathe, dont move, let this last. I used to go to PT 3x a week, used to get trigger injections that helped but ins wont pay for it. We are so beyond financially suffering with me not working & the medical credit cards piling up. Another stressor. Gotta get myself walking & on the bike for 20 min 3 x's a week according to the National FM website. I felt so much stronger going to therapy even though the pain was still there. Guided imagery helps & increased IR opiod meds & Valium & whatever my pharmacy closet of meds will do the job. Its like a migrane of doing absolutely nothing in the dark but sleeping it off & then start back all over again.

I am guessing I have it full body now after reading posts?? My stomach/constipation from the Opiods will trigger it, walking too much, standing or sitting, cardio, weather, stress. O God this is awful putting it all down.

Loretta, yes to all the above u mentioned. U have been so kind to me. I just have to get myself to USC. Thats the key here THANKS to all of ur recommendations.

Comprende MSLADY
Yes...olecyn does exactly what your stated for CRPS. The ole Edgelow protocol of diaphramatic breathing is a constant ritual along with visualization of riding the bike since I cannot move. Contrast showers are a must for me. I too cannot take mucho medication. Highly sensitive. Personally on ice all the time for the throbbing & pain. Its what my inner thermo is conditioned to since my injury in 2000. NO heat for this one.

As for the FM shut-downs. No handle on this one except for calm, hypnotherapy & CD's, quiet, dark, bed & breakthrough meds & days of slowly I turn. I have a great support system, my hubby. But then there r times I wanna ring his neck for not being there or doing or saying the right thing. Poor guy lives his life by my pain. Isnt that sad for all our caretakers? I'm suppose to be the strong one for him.

Can u believe after all these years it is just now clicking in what is an RSD flare-up vs a FM shut-down? I should have been on here long ago not recognizing the sx's difference of CRPS.

U guyz are AWESOME! xxoo