I have been feeling horrible (worse than usual), for about 3 weeks now. I am stuck in the wheelchair and cant leave the house. I have RSD in entire right arm, hand, shoulder, and right foot/ankle, stomach, & heart. Sometimes I am able to walk small distances when not i a flare. My doctor temporarily doubled my Oxycodone 30mg to 60 mg 3 times a day....also take Oxycontin 30mg 2x day, Xanax 2mg x3 day, Cymbalta 30mg, Seroquel 600mg, Lamictal 100mg, Vistaril 100mg, Soma 350mg, Treximet, Compazine 10mg, Phenergan, Marinol 40mg a day, Zofran 8mg Dilaudid 4 to 8mg. I've tried all the blocks, SCS, pain pumps, PT, OT, aquatics therapy, chiropractor, Dynatron STS (moved to TX for 5 months to try this), HBOT, and I'm sure more that I can't remember. I've been taking it very easy, but trying to move around what little bit I can. Also tried epsom salt baths. The pain is absolutely unbarable. My doc wanted to hospitalize me for 3 days to get the pain under control with IV meds. He couldnt find a department that would hospitalize me for pain control. So, I went to ER couple of days ago to just get temporary relief w/ IM dilaudid & Ativan. My doc wanted me to get the ER doc to give me a shot of Prednisone & he called me in a script for Prednisone. The ER doc disagreed with the Prednisone, so I didn't fill it. He told me to only take the oral Dilaudid when thing get real bad. I just feel like I am om way too many meds, but I need them all, DON'T KNOW WHAT TO DO....PLEASE HELP!!! I have tried ALOT of other meds with no luck & also have horrible problems with nausea & vomitting. I am also bipolar, and have problems with anxiety and migraines. Thanks everyone...any ideas would be appreciated!!!

Firegirl,

Sorry to read about your flare up. I know you want answers but I don't have any, just wanted to offer support and prayers.

Hi Firegirl, My heart goes out to you. High pain like that is so difficult emotionally, mentally to deal with. The more you can move around, out of the wheelchair, the better, even for a couple minutes. How long have you RSD? I've had it 15 years and now full body and internally, entire pelvic/spine region. A flare is so miserable.
We are in the process of moving and the activity has actually lessened my pain. I overdid yesterday and ended up with a cane last night-so there is a balance. But, for me, activity, even a little bit, and a healthy diedt high in anti-oxidants plays a part in lowering my pain. Water therapy has layed a huge part in keeping me mobile. Remember the temp needs to be 86 according to RSDSA.
Do you belong to a support group? If you go to RSDSA and put in your zip code, they will give you closest support group with leader phone number.
Did HBOT help any? How many dives did you do? My Dr. just built two clinics in Arizona with HBOT and I'm going to try it.
Do you practice meditation, visualization, biofeedback, music, massage, -massage really helped me-I also did desensitizaton from the very beginning along with physical therapy.aromotherap, any form of distraction. even painting by numbers. I'm going to buy a digital camera and start a new hobby of pictures, sending to friends, Add to my albums.
Before RSD, I had lost my parents-was 25 when my mother passed from cancer, Then Dad 7 years later from heart issues. I went into therapy -2 plus years weekly. It helped me more than I can say. Then when got RSD, it helped me. But when I was diagnosed full body and neuro suggested seeing a psych-I found one who I have been seeing 6 years once a month.. He is also is a neuro and pharmacologist. Can't tell you how much he has helped me, getting me on the right meds and right amount. I actually have gone down or gone completely off some meds.
Being on this support group has helped beyond what words can tell. The love, compassion, support is amazing. I had withdrawn and isolated, which was not good at all. Now I feel being able to share and support different ones has brought me joy.
I still have my days of crying, breaking down in the 'closet'-The internal pain is rough. I've passed out for an hour and half, then woke up and got my husbands attention. Paramedic said I was dead. Passed out again and way to hospital. Several days in semi icu. Caused by low blood pressure. I've been where I didn't want to live, but would never consider suicide.
This is a dreadful disorder, worse than anyone should have to endure.
What state do you live in? Thankfully we live in Arizona, although the summers are pretty dreadful, especially with the internal 'fire' My gyn is trying to put together a compounding cream with the compounding pharmacy.
What heart signs do you have? I had irregular ekg and went thru tests with cardiologist. Do you have sleep apnea signs- I do. Have applied for SSDI. I lost my health insurance a few months ago when we sold our business. I can't work anymore, thus the need to move to smaller house. Am so grateful we can pack slowly. Our house sold just about the same day as we finished remodeling the smaller house. Still have over a month before this house closes. The movers will move heavy furniture. My husband has had a couple back surgeries and sheduled for surgery on his hand-am going to get him to delay it a couple weeks till we are completely settled. I worry about RSD for him. I think this is the 5th surgery on same hand. It started with broken wrist while I was teaching him to play tennis right after we moved her from Oregon.
Please stay with us, develop closeness with different ones. We really care about you! We also have a combined education that is awesome. Are you sleeping at night? My Dr. was doing a 200 person study on seroquel and it's affect on fibromyalgia and found it helped people sleep. I wasn't sleeping all night till 6-7 am . After the study (which he put me in) started sleeping 10 hours. Can't tell you how much that helped my pain and general condition.
Also have been helped with lorazepam for anxiety, but I see you are on xanax. Please, firegirl, stay with us -we are here for you.One of your new friends, with big and soft hugs, loretta

Hello firegirl...

I, too am very sorry for your pain..It is devestating at the very best..I hope we can help lift your spirits here...we speak the same language and care a bunch... We are family and you are a new member..welcome!! RSD is just mean but you must try to walk thru the pain the best you can....it will keep you mobile..Rely on your Dr.'s and us for support.. also seek local support..educate yourself.. See we all have those days..the ugly ones when we question why..what and how long.. but then we realize that our lives have changed but honestly for the good..RSD has redefined me as a person..I don't live in the rush..take life for granted world anymore..I live in the "I appreciate the love around me" world..and do my best to give it back evn in spite of my pain and saddness....Thats why I am here with you say..hang in there..you are not alone in this journey... it's aweful, yes but the love and faith in your heart will get you thru... it always refreshes me to reach out to others worse off when I am feeling down and at my worst..Try that..it will take your mind off your pain and warm your soul all at the same time..I promise!! This is a process!!!!!!..

We are here for you!!!

Hugz..gentle ones...Kathy

Firegirl, So sorry to hear about your long flare. Please hang in there, and know that there are many here who care and understand. Lisa

Sorry to hear you are in so much pain. I honestly don't think that when you are in that much of a flare that it can be calmed down in a few days. To me it's a long process. Most of can contest too that most meds don't work for the RSD anyway. It takes so many if it does.

I like the Methadone and others on here take it. I can take a little amount of it and it knocks my pain but my pain level is not where yours is accept in one area.

I hope you do find some relief soon. It's not an easy process to get the pain to a tolerable place.

Ada

Dear Firegirl,
I hear, so loud and clear your plea for 'help'...
I'm sure I speak for all of us when I say it is our wish to be able to reach out and give you some relief because we know all too well and first hand, how you feel... body, and mind....Your pain is extreme, and you must be doubly frustrated because you've tried so many meds, therapies, and have other complications...

It sounds like your doc has to be more pro-active and find a hospital that can accomodate you, and if he can't then he has to come up with a new plan...perhaps an intrathecal pump so that the meds can be delivered directly to the spinal cord...the nasea and vomiting might be from the meds...its so hard for you to determine what is what...
I am hoping your doc can take a fresh look and inventory of your situation..maybe your meds need adjusting, or changed or reduced...

I am going through a terrible flare, with pain again in my entire back and hips and in both legs, titrating from one med to try another...lots of stress at work..the pace is too much..
When I come to the boards, I am at least relieved to be here with our RSD family..I don't feel so alone and my exile from normal life isn't so emotionally painful becasue of the common bond shared on the boards..

Dear firegirl, I hope you get some intervention soon..please call you doc and insist on some immediate attempts at relief..
Sending many, many hugs, and good thoughts for you..
Hope4thebest xoxox

Everyone here is awesome providing support. Please know we all care, we all suffer as greatly as you do. You are never alone in this as u can see from the thousands of posts, threads and cries for help. Listen to the patients here, and visualize what works for them can work for you.

Be open to new suggestions, new course(s) of trials and treatments. Maybe ur system is on over-load and nothing is helping due to the brain firing constantly never getting relief. With the amount of medications you are on there doesn't seem to be a break through just up'ing the meds with no help.

Re-read the post from Loretta. Everything she said take it to heart. I live in her shadow it seems as our approach is very similar. Moving is the best thing for you. I know, FIREGIRL...you say, well how do I? Just do it! You will find it does work. Fight FIREGIRL fight...show everyone you can. Yes, you can do it.

Sending you strength

With the list of medications and treatments you're either on or have endured, there's not a single one of us who doesn't share their hearts over your suffering.

One thing that caught my eye was that you've tried the morphine pump? At $20,000 to $30,000 apiece, these are not usually popped in and out but instead are seen as a very last thing to do for pain when you're looking at the option list, but only after you've first been tested to make sure it would help (overnight in the hospital routine). Did you have the test with no pain relief so they didn't proceed any further? Yikes, because this was what saved and evened out my pain even though my oral medications are similar or at higher dosages than what you're currently taking. I'm not on my second pump after the battery died during its 5+ years of faithful service.

Now that you've joined the ranks of living on wheels (I've been in a wheelchair since 1999), I can't over stress enough the importance of still moving the body. I know, it's a catch 22. The more you move, the more it hurts. Well, I'd like the ask do you not hurt if you don't move because I've learned that I can live as quiet as a church mouse and still find the pain levels hitting the roof, so since you're hurting already - you'll always do a little better if you can still keep the body moving. I did pool therapy for years with a therapist in the pool with me who moved the body parts I couldn't move on my own anymore, and it was simply a wonderful experience that slowed down the progression. What makes me the most sad is that nothing appears to be helping you whatsoever.

Even though I spend my days around the house in a Permobile C500, when I'm out doing errands I always choose to use my manual chair so I can get the heart thumping and my upper body working. With your RSD going body wide, I know this is so much harder, but please try and do at least some therapy if at all possible even when you don't think it's really accomplishing anything.

Being housebound is not uncommon when you're suffering at your level because it's always easier to just stay within your safe zone. For years I've been asking if the disabled become agoraphobic because of the way we feel inside ourselves or if it's because the way others treat us when we're out in the real world. Between my chopped off body on one half and my other leg being all black and gross, it's embarrassing when I'm out. Please try and not allow this to be one more thing that adds to your suffering. You've already got enough on your plate.

RSD does have flares and the longer you live with it, the better your coping skills will improve as you learn to accept something you really can't control. The severe swelling does eventually come down. The pain backs off enough so you can still do a bit more and RSD won't be the only thing in your life, but it takes time. Associating with great people in this group is another way of understanding that you're not alone but that this is just one more thing that many others like yourself are dealing with day in and day out. While today might last forever, tomorrow will get better - trust me. Here's hoping tomorrow won't be quite so bad, Bob.

Sorry if my replies are short...i'm still in a bad flare, but wanted to answer your questions.


gatorsmomma, lisa in ohio, dreambeliever128, hope4thebest- Thanks for the kind words!!!!

keep smilin- thanks! i also try to enjoy the little things in life...we have to!!!

olecyn- thanks! I try to move as much as I can, no matter how bad it hurts.

bobinjeffmo- The pump that i had for a few months had something that i cant think of the name of right now in it...i know it had numbing properties & was not morphine.......i also get embarrased when i'm out in public between the way i look in or out of the chair...i hate the stares

loretta-thanks! i've had rsd for about 3 and half years...the closest support group in about 3 hours away.....with hbot i only dove 3 times...it killed my ears & made my pain much worse......i have also tried meditation, visualization, biofeedback, music, & desensitization...........sorry to hear about your parents!!!!! hat is aweful!!..........have tried pain therapy & talking to a therapist 2x a week.......also been inpatient for the depression part of bioplar 6 differrent times..........i also pass out from the pain........as far as heart problems go i get very irregular heart beats that make mizzy & pass out sometimes............i just moved too...i have moved 4 times in just over 6 months after breaking up with my boyfriend of 12 years & moving in with my parents who are always moving......i wake up alot at night in pain....thanks again for all the advice


Thanks again everyone!!! You are all so sweet!!!!!!!!