I am glad to see you post again. I do worry about you and think of you often.
Things do get better in time.

I do know exactly where you are at in this point of your life. As I said, I can remember when I first started out with the RSD. Had it not been for people on the old forum and here and my Dr. I would not be here today. No doubt.

Don't give up on finding the right Dr. to help you out there. There will be one that will help you if you keep looking.

You have my email if you want to talk. I will give you my phone no. I do know that Carrie is there for you right now too. There are others reaching out to you also. Grab on if you want some help.

Don't hesitate to come on here and say what you feel and ask for our help.

Ada

LW,
I'm still circling in my mind, our conversation of last night.
(I didn't get a lot done today, my A/C had to be replaced).

You are a very well educated man, and I am impressed, with how you can conduct yourself!
It seems, as I said, that if we can find you a good RSD doctor, one who won't be just tossing pills, but truly understands the pharmacology, and your health, that you'd make some real progress!


And, that's what we all want for you!
Hand your fears over to God. He's got your back!
With God's help, You'll Get There! Soon, you'll be focused on the future, and what you WANT to do with your life, rather than just "getting by". We're all cheering you!

Pete

Friends of Mine!

It seems to me, that Austin Wood, our friend, may need some help.

And, there's a lot we can do.
(I hope that you do reply to his posts, or PM him).
*edit*

I think, and after some conversations with the young man, that, we can take him far!

I'm going to call my own doc, who specializes in RSD / MS.

We're gonna make this guy happier!

I hope, that some of you are with me on this!

I thank you in advance!
As does LW!

Pete
asb

Austin---
Just know that you are not alone. We all have different circumstances, but one thing each one of us DO have in common is the common thread of RSD and/or Chronic pain.

I am not as young you, I am still "fairly young" (mid 20's). I do have a supportive spouse, however, due to his job, he's often away from home and out of countact for over 8 months a year, so, I do do most of "it" on my own. All my family and friends are out of the area. Like you, I am still in search of a good pain management physician and one who is familiar with RSD/CRPS. My neurologist is extremely knowledgable in it, but prefers to to treat my epilepsy and other neurological issues, vs pain management (my diagnosing neurologist did do pain management, but I have since moved) . I know its a daunting task to feel like you are tryin to take care of everything and wear many different hats all at once, and then you add pain into the mix and its even more frustrating. Some days I feel lucky if I get 50 % of my "to do list" done, lol . I have my good days and my bad. But, the things that get me through are my faith and knowing that people do care about me and support me. Laugh A LOT (even if its just the kind of laughter where you tell yourself "if I don't laugh I'll cry, and I really don't think crying will do me too much good).

The point of my post to you, is don't give in and don't give up. Things may seem hard and may be hard, but we all have challenges and obstacles to deal with and overcome. Hang in there !

L2L

Hi. I am sorry for all your pain and having to face this on your own. I live alone but do have a mom who is my hope and strength and can't imagine not. I am here for you though anytime. I am a older 31 but have lost most of my friends due to this. I know how even 1 support can help one hold to hope. I have been to see Dr Stanton Hicks and know a girl who is actually I thnk 17 who he implanted her scs. For many years she was off school and in a wheel chair due to rsd now after many failed treatments she is out of the wheel chair in school etc. Please hang in there and take one day at a time. Even if it means taking 1 hour at a time.

Hi LW,

Sorry for only just seeing this post. I have been on holiday (vacation) with my mum to visit my grandad and that took a lot out of me so i've only just now been able to log onto the forum.

I'm sorry you are having a hard time. I totally understand how hard it is dealing with RSD at such a young age. I was 12 when I got it after an ankle sprain and have missed a LOT of my life because of it. I often spend days crying because I can't do things that a 'normal' teenager does and it really frustrates me when I see kids my age out having fun and i'm sat in the house due to pain.

Like you, I have lost most of my friends thanks to the RSD. I'm lucky that I now go to a special school centre for kids with disabilities or troubles going to school and the kids there understand my RSD and don't judge me because of it. They have helped me a lot and I don't know what i'd do without them.

Hardly any of my family understand RSD. My mum understands most of it as she has been with me through everything which has helped SO much but my dad refuses to understand. He likes to play the 'ostrich role' and bury his head under the sand and pretend it isn't happening which is OK for him but what about me? I have to deal with his every day of my life!

Whilst we were on holiday, my grandads wife kept making comments about my leg saying if I could swim more and change my diet, it would help. Huh, you think?! If only things were that simple...

I agree with what the others say about trying to find something to distract you from the pain. I know how hard it is when we are limited to what we can do but even small things such as listening to music etc can help some people.

Don't give up on finding a good doctor that can help you - there WILL be one out there, you just have to keep searching until you find it! Like you, I have tried all sorts of treatments and none have really helped. Ketamine takes my pain down a little but it never goes below a 6. Don't give up hope though! Treatments are coming a long way in treating RSD and hopefully, one day, there will be a cure!

If you ever want to talk, I am here for you as I DO understand how hard it is dealing with RSD and understand a lot of what you are going through!

Take care and I hope you feel better soon!

Alison

Dear Lordwood, I will tell you my story and maybe you will see that all is not lost. I am single. 7 years ago I was diagnosed with cancer and was in my 3rd month of a 6 month Chemotherapy Series. One day during month #3, I was involved in a VERY BAD automobile accident. I was transferred to the closest hospital that could take me after being stablized at the local ER. I began having surgeries to repair crushed bones (Neck, Leg, Arm, Hip, Shoulder, etc.) I developed RSD two weeks after the auto accident. I was inpatient at a Physical Rehabilitaion Hospital. Because my bones would not heal while undergoing Chemo treatments, the oncologist had no alternative but to stop the Chemo. The Physical Medicine physician could not give the usual medications to help heal so many bone fractures, because it would feed the Cancer. SO ..... I lay in a Physical Medicine Hospital for Months, while they worked with me to learn to walk and do the daily living activities as best I could with one leg and no arms to use. After months in the Rehab Hospital, my Physical Medicine Physician felt I was far enough along to send back to the CANCER HOSPITAL to begin a full 6 month regime of Chemotherapy. As I said, I was & am single, could not drive due to fractured extremities, and was told by my insurance that IF the chemo could be done as an outpatient, then they would only pay if I had it done as an outpatient. Yes .. I know had to find someone to drive me 60 miles to my chemo treatment because I was in a wheelchair. I still could not walk when they started me back on Chemo. I now can walk & use one of my arms, but I am still battling Cancer because I was unable to complete my entire 6 months of chemo initially after they diagnosed me with Cancer. I have had RSD for 7 years. I would take CHEMO ANY DAY over having RSD. At least with chemo they have good meds to help with nausea, etc. and you know there is an end date, at least to this round of chemo. With RSD --- No End Date In Sight ! I Lost My Job, Lost My Health Insurance, and Lost my Home.... BUT, I am still fighting Cancer & RSD. You can fight it also. Here is the best Rx Regime I have found: Morphine Extended Release; Morphine Immediate Release, Klonopin, Flexeril or Soma, Lodine and Phenergan (nausea prob from Chemo, not RSD - BUT Phenergan is Great if you take it WITH your Morphine. You should try that. Get your doctor to write for Phenergan 75mg and take one with your Morphine. Together they have saved MANY a sleepless night. GOOD LUCK! DO NOT GIVE UP! REALLY - FIGHT THAT *edit* RSD. YOU may not win, but you can give it your best shot..

I can hardly imagine what this would be like for a young man. There is no right age or sex for RSD but I know what it's like to be a 19 year old man and can hardly imagine what you're going through.

But you need to understand that your life isn't over so long as you're willing to fight for it. Yes, your old life will be a thing of the past if you can't get this into remission soon. Your age is a big asset in the ability to overcome this. Even a full remission will mean extra care in all activities but you can get your old life back.

Failing that there is life with RSD. There are ways to cope and to enjoy things even if we have pain to deal with much or all of the time. Slow down and deal with your condition and it might be a good first step in getting control. There are medications that can help everybody and it's just a matter of finding them. Perhaps there will even be a cure some day but don't wait for that to live as much as you can. Do it now.

Good luck.