How do you survive with this?
 

I am at my wits end, depressed on top of the constant pain.
I'm in PT, now there's talk of a spinal cord stimulator (I don't know much about that).

I just want to bury my head, wake and wish this was all a nightmare.

My doctors are aware of how miserable I am. This is not right how can something such as a surgery turn into this?

I'm sorry for venting I don't know what to do anymore.
I'm not on here to much I am tired a lot from fighting through the pain, then the pain gives me a headache.

Are there any new treatments available?

Does anyone have good luck with the SCS?

Summertime
Sorry to hear that you are struggling to keep going. I have been there myself and it is impossibly hard. Are you getting psychological support as well as physical help? It is normal to struggle to come to terms with something as devastating and difficult to understand as CRPS. I don't really know what helped me turn the corner out of the depression that came with the diagnosis and pain but once I did, it did all become easier to cope with even though the pain and other symptoms were still there.

I think for me being told that the feelings of despair, depression and fear were actually normal was incredibly helpful for some reason. When I ended up in tears at the doctor finally admitting to suicidal ideation, she told me that with a diagnosis like CRPS if I didn't feel the way I did, she would be concerned!!!! I think just knowing I was normal and what I was feeling and frightened about was normal lifted a huge weight from me.

Please talk to someone "real" and ask for help to cope with the psychological side of this condition. Meantime stay strong and safe. Don't rush into the SCS but I hope if you do go down that route it helps you.

Hi,
I think that we can all relate to what you have just written about and probably many times in our lives. I have had RSD/CRPS since 1989, now full body. I have tried just about every treatment possible. There is hope, some of us have found that hope in different ways. For me, Hyperbaric Oxygen Therapy (HBOT) has been the key to a more normal life, with a major decrease in pain. HBOT is an ongoing treatment for me.
I think that counseling definately is of benefit and I would consider that seriously.
I think that one has to educate themselves as much as they can about CRPS to be able to advocate for themselves.
Do some research on the SCS, put up a post and talk to people who have had this procedure, before you make the decision.
Most of all, know that you are in good company and we are here for you.
All the best, always...

Hi Summertime, I'm so sorry you are struggling. I find much comfort reading and responding to persons like yourself. My RSD also come the day following a surgery. Not correctly diagnosed for a few years. Now fullbody. It has been so difficult too. I've been seeing a psychiatrist for 4 years now. He has been very compassionate and had other RSD patients. He manages my meds, and made adjustments that have corrected all of the electric jolts, spasms, mycolonic jerks. The anti-depressants have helped a lot with the nerve pain. He's conservative, but allows Vicodin and Anti-anxiety. He is a neurologist, psych., and pharmacologist. Do you have a support group in your town? Talking to others is so helpful. I have a good friends here in town. I'll write you back anytime, or call you. I have bad headaches too, as many of us do. RSD affects the Limbic part of your brain that causes depression, short term memory, and I think our speech slowness or groping for the right word. I find comfort in music, swimming when I can, reading, mediatation, I'm coming out of the deep deep depression by concentrating on what I can do, It was so difficult for a few years, it's been 12 years now, because I was such an active person, (tennis, water skiing, snow skiing, aerobics, horseback, biking, traveling, I try almost dailey to stretch, and exercise some. I have one hand partially crippled, worked thru two frozen shoulders, over 100 painful therapy sessions. Light massage treatments help a lot. On the SCS, I read some on it, helped some and others not so good. research yourself, even meds. I thing I am struggling with is weight gain, it's so slow coming off. It partly the meds and change in lifestyle-(exercise and sports) Please let us hear from you again. It doesn't have to be long. Loretta

Thanks to everyone for your replies. It helps to know there are people who understand. I'm fighting insurance companies on top of all this. Plus some of my family members have had a run of bad health lately.
Sorry I haven't replied sooner, there's too much happening.
There's no support group in my area.
I need to spend more time on here to help with understanding RSD. My family wants to help but they don't know what to do either.
PM me or email anytime.
Thanks again...:grouphug:

a little book
 

Something that helped me a lot was a little book recommended by another forum member here, fmichael. Break Through Pain by Shinzen Young. It has a CD with some guiding meditations on it.

I think to sum up the book as briefly as possible would be that Young talks about the old saying "pain and suffering" and it IS possible to have pain without suffering. I credit this book to my ability to continue to work without taking "pain" medication on a daily basis. I am not saying I am not in pain. Believe me I am. But, I am able to deal with it a lot better. A LOT better.

I think how it helped me was teaching me not to be afraid of pain. I don't know that I was ever truly successful at meditation in the true sense of the word. But, once I stopped being afraid of the pain, and was able to relax during the worst electrical zaps, sharp pains, etc... I was able to tolerate it far better.

There are some excerpts of the book online. fmicheal sited the website on this forum before, so should be ok for me to do it again.

You can go to this site
http://shinzen.org/

and a little more than halfway down, under the heading
Applying Meditation in Daily Life
click on
A Synopsis of Shinzen Young's Book Break Through Pain

I think the book/CD was about $20. It might be worth giving it a try.

hugs
Jules

Hi Summertime, Glad you wrote again. I don't know how to write the private message or how to find your e-mail. I know one good way to get a lot of questions answered is by looking up a website:www.rsdrx.com It is written by a Dr. in Florida. There is a part on the website called puzzles. It's just a lot of questions about rsd with the written answers. It's really important to learn as much as possible early, so we don't make ourselves worse. I had no idea it could spread, although my physical therapist told me after a year or longer of therapy to get frozen shoulder back to about 95 percent in use that it could move to the other shoulder. That made no sense at all, since my surgery was left breast and lympth nodes in arm pit. My breast surgeon said nothing about why my shoulder froze up. Just sent me to a rehab specialist, who sent me to physical therapy. The rehab Dr. told me it was the worst case of frozen shoulder she had seen and she felt the surgeon was responsible for not sending me home with booklet of exercises to keep that from happening. You said you were having insurance problems? Were you injured at work and needed surgery? I know the only way I was able to get insurance was because we own our business and have a group plan. Insurance can't deny you with a group plan. We talked to our attorney about our insurance when we were in between moving to different state. Sorry about your family members having health problems. Our health is so important, not just ourselves of course. My husband just got a clean bill of health. He is so good about his yearly check ups. Take care of yourself.:)Loretta

Summertime, I have an SCS. I would not give up my SCS. I got it a few months ago & it helps me. It did not give me a significant reduction in pain levels but it takes the edge off alot & it is distracting. What I liked about the SCS is you get to have a trial of it before it gets implanted permanetly. So you know if its going to help you. You are not locked into it before you get a chance to try it. and it has alot of adjustment built into it. There are alot of settings the techs cn change to try & get the right feel for the person. I did get some spreading with the implant. My generator is right below my waist on my right side in the back and my leads run all the way up my spine to my neck. I now have RSD pain in my lower back on the right & in my hip & when its bad it goes down into my leg. But I knew that was a risk I was taking when I did it & I am lucky it isnt more. If you have anymore questions just ask.
Hugs, Denny

confused again or still..????
 

I recieved a packet with a DVD about the SCS when I saw my doctor. The problem is the insurance company is giving us a hard time about paying for it.

I'm sorry for the questions but here's a few more (along with the new one I posted about the alcohol swipe test). :o

I now have severe pain in my knee that burns and gives out and from there down it feels ice cold..Is this "normal" for RSD or could it be something else?

The other is one of the doctor ran the end of a pencil like object on both my legs. I felt it more on one than the but then he did again and it hurt on the side with RSD..Why is that?:confused:

I try to keep active so things don't get worse. I really wish this would go away but I know it won't, which is the hardest thing to accept.:paperbag:

I can not thank you all enough for your support and help you offer to me and others to understand this condition.:grouphug:

Was the pencil thing like a little wheel with tiny spokes on it? I remember a couple of docs that had one of them and ran it up and down both of my legs. A neuro I saw would have me lie down and he had a safety pin in his hand. I closed my eyes so I couldn't see at all what he was doing, then he would touch my skin, on both legs with either the pointy end or the round part and with either the point or the blunt side I would jump and yelp cause it hurt!! When he told me I yelled about the blunt end we laughed.

That's just an rsd thing. We perceive that a stimulus is very painful when it shouldn't be painful at all. It goes along with the whole skin sensitivity thing. Back when this was done on me I had no touch sensitivity just sensitive to air on my skin.

Usually the cold skin temp is pure RSD. Especially when combined with the burning, severe pain and weakness like that. It's very "normal".

Hugs,

Karen

Hi

The pencil thing was the end of one the q-tip sticks the doctors have in their office. It hurt like heck when he did it.

I think what is confusing me is the combination of sensations I am getting.
Today I have terrible burning in my hip.

Thanks for telling me it's "normal".

Its a horrible monster
 

Sorry :(
 

:eek:Wouldnt let me post the link to where it tells about the implant I have but you can look it up ... its by Boston Scientific ;)

Hi Summertime,
We all know how difficult and overwhelming learning about rsd is. Somehow we learn a little by little and the gravity of the disorder sets in. Thankfully we don't learn about it entirely at once. And then we learn about this forum and reach out to others for help in coping with it. Please don't feel badly about asking questions and expressing how traumatizing it is. We have all been there and understand and want to help.
I have both hot and ice cold symptons and also the burning and terrible headaches. So yes, it's normal for many of us to have both.
For me, RSD started in my upper left quandrant after surgery, then spread to my upper right quandrant, then spread to my lower quandrants. For some people it spreads from left side to right side or half the body.
It really does help to keep active. Limbs can freeze up. Before I was correctly diagnosed, it was in my left hand and I didn't get therapy soon enough and my left hand is like a frozen claw. Therapy and keeping active, exercises in water, have kept my right hand and both feet moving.
Has your Dr. suggested a tens unit before surgery to see if the electrical pulses work good for you? It has controls to control the strength of the pulses and timing of the pulses. I had one and used it when my left hand was so bad. In therapy, they used different textures to desensitize my hand. The tens unit worked good for a long time.
How long have you had RSD? I'm sorry my memory is bad, but didn't you get it after surgery too? Did your surgeon warn you of the possibility to get RSD from the surgery?
If he did,i t should be in writing and you signed it. If he didn't let you know, some surgeries have a risk of RSD and it's an act of omission on the surgeons duties. My daughter is a court reporter and has done depositions for malpractice suits. I'm not suggesting you pursue this avenue of insurance coverage and recovering, but his insurance should have RSD worded in his malpractice insurance. I personally didn't pursue my misdiagnosis, but sometimes I wish I had. I never realized I would or could get this full body and not be able to work.
I hope you get your insurance to cover you. Take care, Loretta

Hi

Mine started after my second operation. I was warned it could get worse. I get terrible headaches as well. My memory is not good as use to be either. I believe it's because the pain is so intense it clouds my mind.

I really feel bad for everyone here who is suffering. Maybe someday there will be a cure and we will all look back at this and say we made it. Loretta you sound like a strong woman, even though there are days you probably don't feel strong. It's so nice to have others to talk with.

Thanks..:)

Bosco

I'm so sorry for all you are going through as well. I have a DVD that explains the SCS. I checked out the site you mentioned. Thank you
You will find a lot of support on this site. I know I have in the time I've been here.

some days are like that but hang in there!
 

hi summertime,
it is okay to whine here a bit and vent here--where else will people understand? but I also want to tell you that it does get hard some days, yes, but it also gets easier other days, and it is worth it to slog through the ickier days because the better days are SO worth it..
I don't know mcuh about the SCS and what treatment is best for you, but I can tell you that pain can get better, and that there are places to make peace with the pain that's left, and I hope you are having better days now.
hang in there, for watever it is worth, you're not alone,
annie