[yelocateyes]

I am telling my story about my nightmare of becoming sick with RSD Stage 3and Fibromialgya as I was made fun of, told it was stress, carpal tunnel, in my head and that I just needed to ignore it!
It started with a bad fall on my right arm at the end of 1999 and in the beginning of 2000, I was at work and my wrist froze with burning pain. I went to Urgent Care and a couple of x-rays later was told that I had Carpal Tunnel. 3 years later, still not getting better with this one Dr., he said I needed to do surgery and I had to wait 6 months, so my parents said they would pay for the surgery as long as I got another opinion and the new Dr. was so mad he didn't charge me the $3,000's for the nerve test because I didn't have Carpal Tunnel! Moving forward and 15 Dr.'s later, the general concencous was that I had RSD and Fibromialgya, but since I had it already for 3 years, I was now in stage 3. The PT never worked and the cold made it worse of course. At this stage there isn't much the Dr.'s can do for you. Yes I had the Stella Blocks and almost chocked to death infront of my Father in the Hospital, FUN, and played with a mirad of medicines until my 7th year when we found medicines that somewhat helped; 700 mg of morphine a day, Hydromorphone, Xanax, Topamax, Fioricet for my constant migranes, Trazodone for sleeping (even though I get maybe 2 hours at a time,) Wellbitrian for depression, Compazine, (Nexium, Amitiza, Carafate, Senna S, and Stool Softeners are medicines for constipation as I now have a high hyana(?)) plus vitamin's D, E, B, Women's Daily, Joint stuff, Fish Oil, and Milk Thistle. My bones in my arms and back are now deteriating as well. The RSD has spread so much it's in my legs, angles, fingers, wrists, neck and arms plus constant migraines. I also have an Auto-Immune Disease. I see a total of 4 Dr.'s; Colonoscopist, Phychiatirst, An Internest and a Pain Specialist. They all keep in touch so everyone knows whats going on. All my Dr.'s are great except my Pain Specialist. As I stated before I am bedridden and need help with almost everything. I am trying to get in-home care but my Pain Dr. was the only one who never wrote me a note saying I am totally and permanently disabled (Which I am.) I've been on SSA for 8 years now. He never even returned mine or my Mother's phone calls for assistance! 4 days of stress that I didn't need! I live in Riverside/Corona, CA and am now looking for a new pain Dr. which will be a nightmare as most pain Dr.'s are bad around here as I should know as I went to 6 before finding him. I've been told that the pain was in my head etc. but I never gave up as I was in too much pain to do so. I've lost a lot of my hair, constant migraines, cold to the bones, tender skin, my skin sometimes turns blue and I am always tired and in pain. How fun, no one understands because I look normal; my face and body except when I walk with a cane. Everyone says how pretty I am, blah, blah, blah. If they lived inside my body for 5 minutes they'd go crazy as you all know. It's so frustrating! Then a couple of years ago I woke up and could barely breath as it hurt too much. I was rushed to the hospital and since it wasn't a heart attack they left me alone screaming for 5 hours thus losing my mind. It turned out I had peracardious, the heart becomes too large for the rib cage, it's extremely painful. I have a PPO so I thought that at least I would get some help sooner than 5 hours. Instead I was told to be quiet or they were going to do a 51/50 on me! They kept me in the sound proof room! When I didn't stop crying they did a catscan and discovered it. They quickly became nice and gave me pain medicine. DON'T EVER GO TO RIVERSIDE HOSPITAL, IT'S THE WORSE! I was in that filthy hospital for almost 2 weeks as they thought they were going to have to cut me open and I was only 43!
I know I am bantering but I have been treated so poorly over the years by Dr.'s and it's so frustrating as I am so sick and dying with a terminal disease and no one seems to care.
I would appreciate any information on a recommendation of a good Pain Specialist in SO. CA. I really am at my wits end. I can't stop crying and it appears that there isn't any chat rooms around for comfort or support which I really need right now. If anyone knows of a good Dr. or Chat room I'd be forever grateful.
God Bless everyone and I hope you all have a peaceful day.
Melanie
**

[AintSoBad]

Melanie,,
Glad you found this place.
Don't think you've been ignored, it's just that we've all been where you are. So, we know what you're going through and empathize!

I wonder why you're not seeing a top notch Neurologist?
Try starting with the 'chief of neurology' at a university hospital, and ask if they treat rsd, and how familiar they are with it.
After all, if you don't ask, you're going to go through more appointments, (which are a pia), and might not get the help you need. I have No Faith in PM docs.
I've had rsd/tos for 27 yrs. and it took me 7 for a dx.

Here,
I suggest you ask more specific questions. It'll do yourself and us all a lot of good.

Be Well!

Pete
asb

[catra121]

I am so very sorry that you have had to go through all of this. It is really a tragedy that so many people have had to go through all of these things with doctors...isn't the pain bad enough? You have found a really good group of people here. I have left a few rambling vents on here when I have been frustrated (which has been quite often lately). Everyone is very supportive and helpful. If you need anything or have any questions or even just want to vent...please do. I know how much it helps to just have people to talk to who get it.

[lorigood243]

Dear Melanie

i just put up a similar post of life frustration. im so sorry for your pain and frustration. God bless you! there is a comforting chat room i use to go to when i needed understanding. its a christian website but everyone is welcome http://www.shepherdofhope.org/ click on the blue chat button.
a dear friend of mine owns the website named Shep. tell her lorigood243 sent you. thats how she knows me. i work on the computer all day and am too tired to chat there after work..i barely have strength to post here.
hugs
Lori

Originally Posted by yelocateyes

I am telling my story about my nightmare of becoming sick with RSD Stage 3and Fibromialgya as I was made fun of, told it was stress, carpal tunnel, in my head and that I just needed to ignore it!
It started with a bad fall on my right arm at the end of 1999 and in the beginning of 2000, I was at work and my wrist froze with burning pain. I went to Urgent Care and a couple of x-rays later was told that I had Carpal Tunnel. 3 years later, still not getting better with this one Dr., he said I needed to do surgery and I had to wait 6 months, so my parents said they would pay for the surgery as long as I got another opinion and the new Dr. was so mad he didn't charge me the $3,000's for the nerve test because I didn't have Carpal Tunnel! Moving forward and 15 Dr.'s later, the general concencous was that I had RSD and Fibromialgya, but since I had it already for 3 years, I was now in stage 3. The PT never worked and the cold made it worse of course. At this stage there isn't much the Dr.'s can do for you. Yes I had the Stella Blocks and almost chocked to death infront of my Father in the Hospital, FUN, and played with a mirad of medicines until my 7th year when we found medicines that somewhat helped; 700 mg of morphine a day, Hydromorphone, Xanax, Topamax, Fioricet for my constant migranes, Trazodone for sleeping (even though I get maybe 2 hours at a time,) Wellbitrian for depression, Compazine, (Nexium, Amitiza, Carafate, Senna S, and Stool Softeners are medicines for constipation as I now have a high hyana(?)) plus vitamin's D, E, B, Women's Daily, Joint stuff, Fish Oil, and Milk Thistle. My bones in my arms and back are now deteriating as well. The RSD has spread so much it's in my legs, angles, fingers, wrists, neck and arms plus constant migraines. I also have an Auto-Immune Disease. I see a total of 4 Dr.'s; Colonoscopist, Phychiatirst, An Internest and a Pain Specialist. They all keep in touch so everyone knows whats going on. All my Dr.'s are great except my Pain Specialist. As I stated before I am bedridden and need help with almost everything. I am trying to get in-home care but my Pain Dr. was the only one who never wrote me a note saying I am totally and permanently disabled (Which I am.) I've been on SSA for 8 years now. He never even returned mine or my Mother's phone calls for assistance! 4 days of stress that I didn't need! I live in Riverside/Corona, CA and am now looking for a new pain Dr. which will be a nightmare as most pain Dr.'s are bad around here as I should know as I went to 6 before finding him. I've been told that the pain was in my head etc. but I never gave up as I was in too much pain to do so. I've lost a lot of my hair, constant migraines, cold to the bones, tender skin, my skin sometimes turns blue and I am always tired and in pain. How fun, no one understands because I look normal; my face and body except when I walk with a cane. Everyone says how pretty I am, blah, blah, blah. If they lived inside my body for 5 minutes they'd go crazy as you all know. It's so frustrating! Then a couple of years ago I woke up and could barely breath as it hurt too much. I was rushed to the hospital and since it wasn't a heart attack they left me alone screaming for 5 hours thus losing my mind. It turned out I had peracardious, the heart becomes too large for the rib cage, it's extremely painful. I have a PPO so I thought that at least I would get some help sooner than 5 hours. Instead I was told to be quiet or they were going to do a 51/50 on me! They kept me in the sound proof room! When I didn't stop crying they did a catscan and discovered it. They quickly became nice and gave me pain medicine. DON'T EVER GO TO RIVERSIDE HOSPITAL, IT'S THE WORSE! I was in that filthy hospital for almost 2 weeks as they thought they were going to have to cut me open and I was only 43!
I know I am bantering but I have been treated so poorly over the years by Dr.'s and it's so frustrating as I am so sick and dying with a terminal disease and no one seems to care.
I would appreciate any information on a recommendation of a good Pain Specialist in SO. CA. I really am at my wits end. I can't stop crying and it appears that there isn't any chat rooms around for comfort or support which I really need right now. If anyone knows of a good Dr. or Chat room I'd be forever grateful.
God Bless everyone and I hope you all have a peaceful day.
Melanie
**

[fmichael]

Hi. Just wanted to echo all that's been said, and note that a lot of people here, including myself, have other autoimmune conditions and/or major sympathetic dysfunction in all sorts of areas that are incidental to CRPS. (To say nothing of neurocognitive effects in roughly 2/3's of the patient body . . . .)

I also posted to your other thread looking for great So.Cal. RSD docs, with my recommendation of Steven Richeimer, MD, at USC, including, among other things, his prowess in exonerating a wrongfully convicted woman in a sensational murder case. Not a typical day's work, but there it is.

I hope you get to quality of care you so obviously require, and soon.

Mike

[Teresa Marie]

Dear Melanie

I'm so sorry about how the past few years have been for you. We all know exactly what you are talking about. It doesn't make it right, but might help to know we are hear to listen. Since I live in MN, I can't help with a doc is So Cal but I could say I lived there.

Have you tried some sort of meditation to get your mind far away from your pain? It is the only thing that keeps me sane. Google Mindfulness Meditation. There are many authors out there that can help you get the idea. It's like knowing your body is telling you one thing--but you are NOT going to listen to it. You have a date somewhere else. Maybe you have already tried it, but it saved me.

Please let us know how you are doing.

Teresa Marie

[fmichael]

Originally Posted by Teresa Marie

Maybe you have already tried it, but it saved me.

Me too. A year into this and I was aware of increasing anger, often taken out on sales clerks and phone representatives. A referral to a local MBSR teacher changed everything. Mindfulness Based Stress Reduction [the mothership?] was set up in 1979 by Jon Kabat-Zinn, PhD, out of the Univ. of Mass. Medical school, where it's still run today. over the years they have trained thousands of teachers. Here's its website, with a link to finding currently certified teachers throughout the North America and abroad at the bottom of the page, under the heading, "Find MBSR Programs Worldwide," at the bottom of the page: http://www.umassmed.edu/Content.aspx?id=41254 Many instructors, in turn, list their homepages,which are fascinating. Hint: if the instructor is a licensed mental health provider, health insurance will typically pick up a good part of the tuition.

The basic course runs for 8-weeks, meeting for 2 and 1/2 hour once a week, with a full-day retreat at the end. Each class is primarily oriented to 8 to 10 people in pain, and includes meditation, group discussion, and the very gentlest of yoga exercises, which is great for proprioceptive, something that CRPS specifically robs us of. Between classes there are daily "homework" exercises, largely guided meditations or yoga exercises under the guidance if CDs prepared by the individual instructor.

I came out of there with incredible momentum and became a student of Shinzen Young http://www.shinzen.org/ and am now starting to work specifically with people in the chronic pain community. And my MBSR teacher continues to be one of my closest friends, a little over 9 years later.

Mike

[birchlake]

Here is another good place to check out. It is from the University of Minnesota and provides great information, interviews, etc on "complementary" practices that can be very helpful for those living with CRPS.

I have incorporated some meditation, massage, gentle yoga into my daily regimen with pretty amazing results. If you would have told me 5 years ago that I would be performing yoga and meditation, I would have laughed!! But you won't find me laughing any more. Each of these complementary techniques can be a small piece to the big puzzle that is CRPS.

http://www.takingcharge.csh.umn.edu/

Once you get onto this site, look at the bottom right where it says "healing practices A-Z"

It's important to keep an open mind to these healing practices. Not all of them may work for you, but if you can find just ONE additional way to cope and help you handle the way you "perceive" pain, it can be a very, very good thing.

[daylilyfan]

Mike, I have thanked you many times for recommending Shinzen Young's book to me many, many years ago. I will never be able to thank you enough. I've recommended it to many people since. I am not sure if any of them actually got the book though. I don't think people really understand how it can help. None of the pain medications have helped me, and what I learned in this book / CD has been the only thing that has really helped me cope with the pain. I encourage everyone to at least give it a good try.