I am 19 just about 20, have no job and no treatment to help me with at least a little with paim. My RSD is full internal. I cannot work and are on the top of the top meds and high doses of them. I have had every treatment other than HBOT and ketamine. Which after having high doses iv lidocaine treatment they told me ketamine would most likely not work as did Mr. Schwartzman. HBOT is not allowed in my area and i cannot afford to get to a place where i came which i am being told it wont work anyway. I want an induced comma but thats not allowed. There is no med i have not been on other than those small ones that some mention which you dont go down the latter for help. I have to use 8mg of xanax just to get to bed. Otherwise i dont sleep. I mean my RSD caused Respiratory failure which no other case of RSD has done. Itt seconds from killed me. I have no support other than 4 friends which betrayed me and only talk to me if they do at all to torment me. No other support. Mt family doesnt understand well thats what left of what family i do hav. I only have a mom really which acts like a 5 year old shes messed up from the way my father treated her. And makes things alot worse. *edit* those of you that get into remission/cured i have watched so many of u get better and i only get worse that worse. The docs tell me it will once get worse and i can feel it next time it will attack the brain or heart and shut them off and i will be gone. I am dieing and no one cares.I will not let this RSD control it all. I will take the charge and end it, do one thing for myself and not allow it to control sll. tell me how many of you can eat a full bottle of 90 80mg oxycontin pills and live to tell the tail and have it not effect you .I am that immortal i cant kill me self i mean i am 19 and my life is ruined for the rest of my life. All of you are married and fine. What the freak am i to do&&&&&&

I think of you often. I'm glad to see you post.

Don't think you are invincable because meds can kill you. There is always a dosage that is too much for any one person.

I am sorry to hear that you are going through this alone. I was just thinking yesterday about people who have no one in their lives to help them through any hard times they go through. I have met some of them in my lifetime.

I am blessed with good family and have a big one. I do consider myself in remission but what it took to get to where I am was unbelieveable. It took 10 years and having the right Dr. I saw over 50 Drs. before I figured out I had the right one in my own back yard. I was like you, there were so many times I thought about ending it but I kept going due to councelling.

Don't give up and keep looking for that right Dr. for you, he's out there.

Have you tried for SSI. If not, you should. You might have to fight for it but you will finally get it. Call your local Social Security office if you haven't and ask them to send you the paperwork to get started on getting it. If you need any help just email me and I will give you my phone no. so maybe I can help you with your paperwork. Others on here would be glad to help you too. IF you have been fighting for it and have been turned down, email or write your State Reps. One of them will give you some help I would hope.

I hope you hang around here with everyone. It's ok that you are jealous of people in remission. Everyone has a little jealousy in them.

I do live alone myself. I lost my hubby 2 and 1/2 years ago. It is hard but I keep on chugging along. You will too.

Hang in there and hang around here.

Ada

Hey there Austin,

I've been looking for a PM from you lately. Sorry that you are feeling so crappy. Can't say that I blame you at all. I've started with some of the internal problems of RSD - I've had IBS for over a month and have lost a lot of weight. None of my old clothes fit me. Plus I get those zingers in my chest you were telling me about when I'm trying to fall asleep. It's awful. Even though I am married I still feel like only other RSDers really understand me when I try to explain what it happening to my body.

Friends at your age do tend to betray one another rather easily. Try not to take it personally. Your so called friends are just too immature to really understand what you are going through.

I thought I had seen Ain't So Bad Pete try to get in touch with you a while back with a recommendation for a good neurologist. I have a FB page up now. I'll get you my FB page in a PM, and then I'll help you get to Pete (who is in southeastern PA, maybe near you?) and the others that are on FB -They are all part of a network of RSDer's that are on FB. It's a place for you to start.

Keep in touch with me. We need to stick together. I still care.

XOXOX Sandy

Dear Lordwood,

I am so sorry for all your trouble. I am confused as to whether or not you currently have treatment for your pain. It sounds like you have oxycontin. DO NOT take them all at once. #1. You do not know what it is like to die. #2. If, as you say, it does not effect you, then you will have no tx until the next refill. Is this why you say you have no treatment [tx] because you took all your medication? Not all of us are married and fine. Some of us have very little family support, or none. Can you get yourself to a Church? The Methodist Church has offered to help me when I cannot get out to get groceries, etc. I am not able to express how much I care about your situation. Please contact me anytime. billie

Austin,

My heart aches for you,as the immense amount of pain and pressure, is homesteading on your shoulders. I wish I could make it all go away. I can't though; what I can do is reach out to you and tell you I care about you. I will keep you in my prayers and thoughts...you are a very special being.

love,
Dewy.

Austin -

Has anyone discussed with you the use of (high dose) iv Prialt? PLEASE check out the following: "An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in Child Using High Doses of Intrathecal Ziconotide (Letter to the Editor)," Stanton-Hicks MD, Kapural L, J Pain Symptom Manage. 2006;6:509-510, free full text at http://www.rsds.org/2/library/articl...32_6_pg509.pdf (And in this case, the pictures are worth a thousand words.)

Although I just have the abstract of the recent follow on study, it's encouraging as well, "Intrathecal ziconotide for complex regional pain syndrome: seven case reports," Kapural L, Lokey K, Leong MS, Fiekowsky S, Stanton-Hicks M, Sapienza-Crawford AJ, Webster LR, Pain Pract. 2009 Jul-Aug;9(4):296-303. Epub 2009 May 29.

The Cleveland Clinic Foundation, Cleveland, Ohio 44195, USA. KAPURAL@ccf.org

Ziconotide is a nonopioid analgesic currently indicated as monotherapy, but frequently used in combination with opioids, for the management of severe chronic pain in patients for whom intrathecal (IT) therapy is warranted and who are intolerant of, or whose pain is, refractory to other treatments. There is a paucity of information regarding ziconotide use in patients with complex regional pain syndrome (CRPS). Seven cases in which IT ziconotide was used in patients with CRPS were analyzed. All patients (4 male, 3 female; age range, 14 to 52 years) had experienced inadequate pain relief with multiple conventional and interventional treatments. Three patients received ziconotide monotherapy exclusively; 4 patients received ziconotide monotherapy initially, then combination IT therapy. The mean ziconotide dose was 5.2 mcg/d (range, 0.5 to 13 mcg/d) at initiation and 24.7 mcg/d (range, 0.06 to 146 mcg/d) at the last available assessment. The mean duration of ziconotide therapy was 3.1 years (range, 26 days to 8 years). At ziconotide initiation, the mean visual analog scale (VAS) score was 89.3 mm (range, 75 to 100 mm); VAS scores decreased by a mean of 47.5% (range, 5% to 100%) at last assessment. Of the 5 patients who experienced substantial improvement in pain, edema, skin abnormalities, and/or mobility with ziconotide therapy, 2 have discontinued ziconotide and are pain free. Another patient experienced marked reversal of both edema and advanced skin trophic changes. Adverse events included urinary retention, depression, anxiety, and hallucinations. Adverse events generally resolved spontaneously, with treatment, or with ziconotide discontinuation/dose reduction. Although further studies are required, ziconotide holds promise as an effective treatment for CRPS.

PMID: 19500276 [PubMed - in process?]

Seriously, were I in your shoes, my next call would be to Michael Stanton-Hicks, MD.

This is a real possibility, please check it out if you have not done so already.

Mike

Austin
My heart goes out to you,,ive been thru the wringer as alot of people on this site has, God is your answer,, I believe that everyone on this site has sought death more than once than to deal with rsd,one time or another,,,but Im not going to let this[rsd] or anything else beat me,,Christ Jesus is your answer,,if you only knew my past,,i am a good listener,,call me anytime ,,your life is a precious gift,,,,some times we need someone who will listen and who cares,,vent my man vent,,,,,,, call day or nite,,Pm me

Hey bro!

Dont let those friends get to you, they have no idea what your going through and really they dont want to know. If you do have to talk to them just try to use them for companionship so your not alone bro.

At least you can control the situations because you will be sober and they wont be most times. It is too bad we dont live closer cause we could hang out and I could bore you to death

I have been trying to get my fb chat working, I think my wife put a virus on me puter . She cant even log into fb anymore, it keeps telling her it cant find the ip. So it looks like I will be wiping the hard drive here this week again LOL.

Austin,You are in the fight OF your life and FOR your life, but NOT alone. I've just read all the posts to YOU. These are FRIENDS that care. FAMILY doesn't have to have the same BLOOD to be BONDED and CARING. You have been DEEPLY HURT and I'm truly sorry for that......To be betrayed by someone you looked to as a friend is indeed painful. I do know one thing----the friends here truly understand -maybe not one person understanding everything, but collectively you can count on compassion, loyalty, empathy, all of the emotions and disappointments someone that has written to you truly understands.
Please do not harm yourself-life is a gift from God. My Doctor just built two new clinics and they both have HBOT in them. I'm going to have the series of treatments hopefully by the end of the year. This economy has hurt our business. I've had the flu, but am now ready to go out and get new accounts, we deliver coffee to businesses. I believe my Dr. told me his HBOT are the only ones outside of hospitals in Arizona. People are having good benefits from the HBOT. They are used for burns, surgery healing etc.
Please know you are NOT ALONE, the love in our hearts and prayers from the depth of our hearts go out to you & others that are suffering.We are able to endure this and other forms of pain by NOT trying to do this on our own strength, but relying on our Creator and the example of HIS SON, who gave his life on our behalf.
I've always enjoyed your writings, please don't stop..soft hugs loretta

Dear Austin,

I don't even know where to begin after reading your post. I am a mother of a 16 year old girl, with RSD/CRPS, and I can't imagine what you are going though all alone. I know that my heart is bleeding for you right now. Taking your life is not the answer to any problem. Someone posted something about Stanton Hicks at Cleveland Clinic, you should really see about making an appointment with him. My daughter went through the pain rehab clinic, for children there, they will take you up to 21 years old. The doctors are wonderful and I think that you should call. They can help you cope with your pain. It may not go away but they help immensly. Here is the contact person, her name is Kristin Buchanan 1-216-448-6158, it is a two week in hospital stay and a week outpatient. You can stay at the Ronald McDonald house during the outpatient week.

Austin, there is nothing in life that should ever make you take your own life, you are not alone, I may not know what your pain feels like, but I live it with my daughter every day. PLEASE, PLEASE, listen to everyone here and stay positive, make this phone call and see what they can do for you.

I have always told my daughter, that for some reason, God has given her this journey to travel through in her life and she is the one to choose the path that will take to make her life., Why God chose all of you, I don't know, but he obviously feels that you are the ones that maybe one day will find a cure for this dreadful and horrific disease.

I am sending you my love as a mother, and I hope that you will find peace with your decisions. Know that you have friends and family and moms out here that know what you are going through. Keep your faith, call your friends on this site, and know that we LOVE and CARE for you.

SandyS