Tired of the pain
 

I HAVE BEEN LIVING WITH CRPS FOR OVER 15YS NOW, I HAVE TRIED EVERYTHING.....IT HAS COME TO THE POINT THAT I AM CONSUMED ALL THE TIME WITH THE PAIN AND BURNING. I GIVE UP:confused:

Hi CHOP,
 

You can't give up. But I do know where you are coming from. Been there, done that.

Could you tell us some of the treatments you have had and meds you have been on?

The more we know, the more help you might be able to get from others on here.

Glad you found the forum. You will learn a lot here.

Ada

Hi CHOP, I am so sorry that you are in so much pain! It must be so aweful to NOT get a break! Before givin up, try hanging around here for awhile. Read, or just join in anywhere. :)

I was at my wits end & happened to stumble upon these Great people here. I have found so much info! PLUS the caring support.:grouphug:

I hope you can find your way. My Thought & Prayers are with you.

R.s.d.
 

:confused:I am confused? i have had r.s.d. for 15 years my pain is allways there. i am in stage 2. one thing i have learned is do not baby your pain i do not baby my right side i go get my shots every eight weeks. i hate what i have but it will not get the best of me.i am to young at age 52 smile. but for real i get to so much pain then i asked myself what about the people whom have cancer or outher sicknesses . i will pray for you. but do not give in to it .GOD BLESS KIM

Hi CHOP,

I'm so sorry that you're in so much pain. But, you're in the right place. We all know how you feel. We understand.

I agree with all of the comments listed before mine. Don't give up. I hope you find comfort in that there are many, many people here that experience similar pain to yours.

Give us more information and maybe we can help?

:hug:

Hi CHOP,

I'm SO sorry to hear that you are in so much pain right now but as the others have already said, you simply CAN'T give up!!!!! I know it might not feel like it at times but there is always hope and without hope we have nothing!!!!

I have had RSD for 2 years now. It started in my left leg when I was 12 years old after an ankle sprain and has since spread to my left and right arms. Many times I have felt like giving up and kept saying that life isn't worth living but trust me, it IS, you just have to find positive things to focus on and things that make you smile.

I still want to give in at times now. I am going through a rough time right now and no treatments have helped me really so my doctor is having to seek further alternatives but they all have risks involved BUT I am not giving up hope and always remain optimistic that things can get better.

Do you see a Psychologist/Psychiatrist?? They can really help you focus on things and prescribed medications to try and help if neccasary. My first Psychologist was horrible and didn't help at all but I later found another one that is lovely and has taught me different breathing techniques etc to try and help with the pain and stress etc, thats not to say that I still dont get stressed and angry, I do but I can "cope" with it a little better now. It might be worthwhile looking into seeing a Psychologist if you don't already - I know it sounds a bit scary but they can really help if you find one that knows what they are talking about!!!

What sort of treatments have you tried so far?? Don't ever give up hope that nothing is going to work for you - there is always something being invented that could help you!! Have you tried anything like HBOT etc? I have heard from quite a few people who have had positive results with that (all though of course it is different for everyone!).

I agree with what the others have said also, exercise is an absolute must!!!!! I KNOW it is extremely painful but it is probably the one thing that will help you in the long run!! I have a hard time doing PT and exercising but as my PTs said, I other use my limbs and try and keep mobile or dont and lose them altogether!! My Doctor also has a good way of looking at things - he says that we are in pain whether we are sat around doing nothing or doing something so we may as well try and do something!! I never thought of it that way but it does make sense and I think a lightbulb went off in my head when he said that!!!!

Please don't ever give up hope - there is always hope, it might take a bit of time for things to start getting better but they will!! Your family need you and so do your friends and us so please, stay strong, even though I know it is hard at times!!!

Take care of yourself and know that we are here for you and care about you! If you ever need anyone to talk to, please know that I am here for you because I DO understand what you are going through!!!:hug:

Alison

Hi Kimmie,
 

I don't think it's a matter of babying your RSD. I think it's just a matter of watching what you do that might cause more injuries.

Physical Therapy, I feel is good for RSD, it's just who gives it and how much they know about RSD.

I agree with you, when we are feel like we are bad off, take a look around, cancer, MS and other medical problems that people were born with. I have a cousin that has Ceberal Palsy. She is now dying from cancer. Never saw a day out of a wheelchair so we do have to look at it the way you feel.

I didn't mean to take this away from CHOP's thread but I just wanted to answer your question.

I do realize though with the pain of RSD and what we go through, it's hard at times to look around us.

Ada

You are in my prayers for that fighting spirit that has kept you going for the last 15 yrs. of RSD..to arise within, once again.

I have had RSD/CRPS I for the last 2 yrs. Currently, it has spread in both legs,both hands, and my spine. I am not working, and recently applied for SSDI in 01/09. I take my meds, do physical therapy, and I found that creating Art work takes the focus off of my pain. I am quilling constantly..the art of paper sculpture by curling paper.

Do you have any hobbies that you enjoy? A puzzle is always a great escape from the focus upon oneself; meaning, the pain and all the discomfort that comes with RSD.

I wish you peace..people care about you.
Your experience dealing with this RSD culprit for the last 15 yrs. is useful to others. Share your knowledge.

Dew:grouphug:

chop
hi i am so sorry that you rsd is relentless. i have full body rsd for 11yrs and i know exactly how you feel .. sometimes you want to give up but YOU CANT!!! dont let rsd win ..let us know what kind of treatments you have had. i had to have pump put in to help with the pain. and it has reduced my pain enough that i am able to do alot more.. i still have horrible flares and pain daily .. please hang in there stick around for support it really does help

carrie
pm any time

carrie

Hi Chop,
 

How are you doing? Better I hope.

Hang in there, things do get better.

Ada

Also curious to know what you have tried.

Hello Chop,

Welcome to the site. I know how you feel and I have been to the giving up stage.
I have full body RSD from the top of my head to the tip of my toes including my lungs and heart. I hope you have a medical team that is helping you. I know it is difficult to find doctors who understand RSD. If you don't have a pain management physcologist find one. Mine is my safety net he helps me sort through the treatment options and legal matters.
Remove the negative from your life news on TV and friends who bring you down. Be sure and laugh watch funny things on TV. I have found walking in the water at the YMCA is a huge help for me. I get excercise and the cool water in the pool helps with the burning.
Again I say welcome you will find a great deal of support on this site.
Sbowling:winky:

Dear Chop,

You are a winner an winners never ever give up.

I truly hope their will be a break thru in your pain levels for you.

Hang in their. Roz

Never give up, just keep looking for solutions
 

I know you're fed up, and you should be because nothing takes a person down faster than pain, but please don't give up!

Have you tried oral narcotics? Remember there are quite a few different types out there. Have you looked into getting an Intrathecal Morphine Pump? I just had my second one installed (my first lasted 5 1/2 years), and it has given me back life.

If you can't find a doctor who cares, then fire him. Now find a good one. Trust me, there are doctors who care, but please keep in mind a few things when you're meeting a new doctor.

1: Tell him your health condition and concerns, but never complain. Doctors hear people complaining day in and day out and nothing will shut them down faster then another person complaining about how there is nothing out there that will help and that no one cares. Instead let the doctor always do 95% of all the talking.

2: Keep an open mind to new ideas. If you don't, how will you ever hear new things that might really help?

3: Don't say you won't. These are death words. Instead always reply, "I'll try anything, so long as you think this is the best way to go." The more you trust a doctor, the more he'll trust you.

4: Don't ever take any medications in a dosages other than what is written on the script. Besides the fact that you'll run out of pain relief faster, it's also a way to ruin a doctor patient relationship really fast.

Please never give up, and I hope that tomorrow finds you feeling better. Bob.

Hi CHOP
 

Welcome to NT! I just wanted to say "Hello" and I too am sorry to see that you are enduring relentless pain. I have been there many times. I have full body CRPS and it will be 20 years in July. Personally, I have gotten breaks with Blocks, a sympathectomy and with Hyperbaric Oxygen Therapy. There is one thing that I have learned in life that has served me well and I'd like to share that with you. That is "Don't get Desperate, Get Curious". So, I think that you are on the right track, asking questions and seeking a repreve from your pain. Keep following that path. I truly wish I had a better answer for you, but you have gotten some really good advice from people that are experiencing or have experienced what you are going through. You are in my thoughts and prayers.
Di

Some things that have helped me are:

exersizing for several hours. When my pulse is above 140 bpm, the pain goes away. It takes a while for your body to build up to exersize for a few hours. But when your brain starts to manufacture endorphins, it makes you feel like a different person

thalidomide. I stopped taking it beccause the side effects include temporary and permanent nerve damage. I thought I might be developing nerve damage in my legs so I stopped taking the thalidomide. Thalidomide was more effective than methadone.

10% topical ketamine. Most doctors will not write you a script for this. After you find a doctor to give you a script, you have to find a compounding pharmacy. Many health insurance plans do not cover custom compounded drugs.

soma and namenda (an alzheimers medication) make methadone much more potent

Checking in on you, Chops
 

Hi Chops,

Dropping by to check in on you. Please let us know you are ok.
You are in my meditation prayers.:grouphug:

Dew

Rsd and pain control
 

I know the laws are different for everyone, but I am a medical marijuana patient :eek: in a state where I am protected (card carrying!). This works better than the narcotics and especially muscle relaxants. I have severe RSD that showed up overnight and is now in both legs and right hand :mad:. I am paralyzed completely in my right leg (curled up leg-tendon contracture). I had to quit PT as the pain was too great to tolerate. Look at the medical studies that NORML has posted as well as just listening to patients who are legal-:grouphug: (try You Tube). My state also has some doctors that will prescribe Marinol, but I have never tried it. The U.S. is also in stage IIIb/III trials on Sativex oral full spectrum cannaboid spray. This is legal in Canada and the U.K. Since it's already a marketed product, it should be easier for it to be approved. It's sad that politics get in the way of reasoned science :confused:.