[SaturnMoon]

i feel so alone i feel like no one understands everyone says they understand but they really dont i need to no someone out there really knows wat im going though

[reruho]

Yes, Saturnmoon, they will nod their heads and try to understand but they can never really get the real picture. I know when I try to tell others about it, their eyes glaze over and they get that look of disbelief. They are thinking how outrageous it sounds. And it is outrageous but true.

I am glad that you found us. Forums like this have saved my sanity and increased my knowledge. Having others that truly know what you are suffering can be helpful because you don't have to explain and we understand. Often we ask questions about meds, procedures or a new symptoms andshare our knowledge.

Tell us your story and ask any question you have. We all came for help and answers. Now, we are like family and here to support each other. I can not imagine living with this disease before the internet and email.

Reta

[SaturnMoon]

every day i live with this disease and the pain not one person understands i go though the cycles every day i have had many surgeries and have little had relef every day i think of how unnormal i am and wish i was like every one esle sometime i cry myself to sleep with the pain sometimes it gets worse and other times it just stays the same i just feel so alone because my mom says it will be better but i see no results and she says she understands but i know she has no clue

[reruho]

Dear Saturnmoon,
I will try this again. I hit the wrong button and it all disappeared earlier.

You are depressed and need to go to your doctor immediately. Depression is very common with RSD patients. It is not just the pain that causes it but things like the feelings of isolation, insomnia and the simple fact this disorder attacks the limbic section of your brain.

“The limbic system is the home of emotions, motivation, the regulation of memories, the interface between emotional states and memories of physical stimuli, physiological autonomic regulators, hormones, "fight or flight" responses, sexual arousal, circadian rhythms, and some decisions….”http://www.wisegeek.com/what-is-the-limbic-system.htm

Your doctor can treat your depression with something like Elavil. Elavil is commonly used to treat insomnia. Once you start sleeping, you will find both your mood and pain will improve. I took Elavil for a while and I got some excellent high quality sleep. You might even ask your doctor for a referral to a psychologist for some help learning some de-stressing techniques. This could be self hypnosis or deep breathing techniques to help your gain control over your pain.

You and your mother could both benefit with some time with a psychologist. It would help her learn techniques to assist you. And, she might need to chance to release some of the stress of watching her child suffer. I am a parent and I can tell you, it is very frustrating not to be able to help your child in pain. There is feeling of helplessness and failure that can be overwhelming to a parent.

Do you keep pain journal/diary? It could be very useful for you and your doctor. You would keep track of your pain levels throughout the day, what medication you took and its effect, other treatments you tried, anything that made your pain better or worse and the moments that have made you grateful (the good days/ hours/minutes). Keeping a pain diary can help you and your doctor create a plan to reduce pain and make you more comfortable.

Try googling “pain diary” or ask your doctor if they have a format they would like you to follow. There are some online pain diaries that can be emailed to your pain management doctor directly.

Please continue to post and keep us up to date you how you are. I want you to know you are not alone, we understand your pain and how it changes without rhyme or reason. We understand the depression, the sadness and the loneliness. We are here and can listen.

I would love to give you a hug and comfort you. I will send you a <<<<<gentle hug>>>> and hope you get some rest just knowing someone understands.

Reta

[SaturnMoon]

ive been to the psychologist just made it worse and im on sleeping pills and mood pills doesnt help

[reruho]

If the meds are not helping, they are probably the wrong meds. And it could be that psychologist was the wrong one. Did you doctor recommend this psychologist or did your insurance pick them. If it was the latter, it doesn/t mean he/she was the right one for you.

Doctors are like people, that have good points and bad points. Not all doctors are trained to treat chronic pain. The doctors trained to deal with chronic pain patients have a full understanding of the unique problems associated with the chronic pain. If you didn't go to a psychologist that your PM suggested, ask the PM for a recommendation.

And, then you might not be ready for a psychologist to help you with your depression. You might need to learn something like visualization or deep breathing techniques to help you take control of your pain. After that, you may be ready to work on the depression. Do understand what I am trying to say? You have to learn to walk before you can learn to run.

I would imagine that you do not get outside much. Have you had your vitamin D levels checked? Chronic pain sufferers often have very low levels and that is associated with increased pain. Ask your doctor to check your levels at your next appointment.


How is your general health? Are you eating a well balanced diet or taking any supplements? Think of your body as an engine. It does not work well if it does not get the right fuel or not enough. Sometimes you need a tune-up. Chronic pain has a way of creating other health issues. I have high blood pressure and Low HDL cholesterol. My advice is see your primary for a checkup to see if you have any other issues.

Reta

[christine1003]

its been 2 years since i was diagnosed with rsd and my boyfriend has been through 3 surgeries with me 2 of them being cervical spine regarding a stimulator, a deep infection in my spinal cord and a broken bone in my neck now all these surgeries were to try to get some relief from rsd to no avail anyway today he was saying something and i couldent believe that he said rsd only affected my skin and it would be o, well i thought he got it way back but i guess i was wrong so i definately understand what you are going through when people say they understand its like it is almost impossible for them to get if they dont go through it
i was diagnosed yesterday also with fibromyalgia and it was explained to me that rsd and fibromyalgia are fighting for control of my body so now i need to get him to understand that. how? especially when i cant yet explain it to myself all i know is that this is terrifying to me
keep your head up and stay focused and strong, you have found the right place to vent everyone here is so supportive and DO UNDERSTAND what you are going through, i have tried many different kinds of medications, trigger point injections, physical therapy, water therapy, if you have access to a jacuzzi it is the best medicine for me i use mine like 5 nights a week please be patient and get help for the depression just because one medicine did not work another might please try to stay positive please when u get down its all worse.
if you dont mind me asing how old are you and how did you get rsd

[reruho]

SaturnMoon,
We have not heard from you in a while. I hope you are feeling better? Please write and update us on your situation, I have been worried about you.
Reta