Faith for Fern

This is a step in the right direction. Think about it legalize it, tax it and the national debt is gone in 2 years. Why make people suffer and loose there doctors, because of the doctors insurance,just because all of the Fentynal patches, diladid, valum, oxy, and other pain meds. doesn't take care of the pain in the same manner that pot does. It doesn't impair you the way that alcohol does. And it is PROVEN to help those in CRONIC PAIN. If there was something out there for animals and we didn't give it to them we would be put in jail for animal abuse. Why allow a person to suffer worse than you would allow an animal to??? Doesn't make sense does it??
------Quakertown Born----------

I also have RSD and I know your pain. Mine is in my right foot. And to top everything my husband has Cronic Back pain. He's had 4 opperations on his back and needs a 5th but no one will do it. He is being treated as a drug addict which I guess you could say he technically is due to perscription medication but they will only treat his symtoms instead of fixing the problem. He was told by his doctor that he should be treated as a terminally ill patient because he will only continue to get worse and nothing will make him better. He told his doctor that he didn't like how the Fentynal patches made him feel and that MJ made things easier NOT BETTER, just allowed him to deal with his situation better. It's hard since as you said NO ONE seems to know the pain so no one is very supportive. I feel so alone sometimes.
RSD

Dear QB- I knew there was a reason you understood pain so well. I'm so sorry that you're among those of us suffering. Before my accident I had a spinal fusion. After 6 years I found out I was never fused. Had the surgery to fix it with metal in my spine and screws. They had to take it out as it was being recalled. When i was in my accident I was already disabled. So I know what your husband is going through too. I'm very familiar with chronic pain and RSD. To be honest( not to take away from your husband's pain) but I'd rather have the back pain problems back instead of this disease. Somehow I'd like to stay in touch with you. I don't know how because we can't post e-mails etc.

You're not alone. Please remember that. I know there are no doctors out there besides Dr. Schwartzmann (who has a 3 yr wait). I have a neurologist. He stops short of giving Ketamine infusions. The only treatment I've recieved is Electrotherapy. My doc invented this machine. It's more of a physical therapy type treatment. I was his guinea pig. Now that the FDA has approved it, I haven't had one in a year because the hospital he's at won't let him. It's non-invasive.
Without taking up so much space here, I'll close for now. If you need me, I guess you can reply back to this or look for me on here and I'll figure out how to get us in contact.

Remember-Life is not about waiting for the storm to pass- It's about learning how to dance in the rain.
Gentle hugs-RSD Survivor

I'm glad that topix found it important enough to start this forum. I do suffer on a daily basis and it is hard when you try to explain the pain and when everyone looks at you, you look normal but the pain isn't easily seen. (Other than the facial expressions of pain) so it takes alot for people to even believe you let alone trying to find someone to treat you. If anyone knows of a doctor in the Quakertown/Allentown area who treats this disease please let me know. I could use all the options I can get.

RSD Survivor wrote:

Dear QB- I knew there was a reason you understood pain so well. I'm so sorry that you're among those of us suffering. Before my accident I had a spinal fusion. After 6 years I found out I was never fused. Had the surgery to fix it with metal in my spine and screws. They had to take it out as it was being recalled. When i was in my accident I was already disabled. So I know what your husband is going through too. I'm very familiar with chronic pain and RSD. To be honest( not to take away from your husband's pain) but I'd rather have the back pain problems back instead of this disease. Somehow I'd like to stay in touch with you. I don't know how because we can't post e-mails etc.
You're not alone. Please remember that. I know there are no doctors out there besides Dr. Schwartzmann (who has a 3 yr wait). I have a neurologist. He stops short of giving Ketamine infusions. The only treatment I've recieved is Electrotherapy. My doc invented this machine. It's more of a physical therapy type treatment. I was his guinea pig. Now that the FDA has approved it, I haven't had one in a year because the hospital he's at won't let him. It's non-invasive.
Without taking up so much space here, I'll close for now. If you need me, I guess you can reply back to this or look for me on here and I'll figure out how to get us in contact.
Remember-Life is not about waiting for the storm to pass- It's about learning how to dance in the rain.
Gentle hugs-RSD Survivor

Hiya RSD... I am so glad Hacksaw did this for you guys!! We have discussed in the past the medical issues... mine were no where near as bad as yours and QB's but I know first hand what it is like to be ignored or misunderstood when you have a medical issue. I wanted to give you some ideas on keeping contact with eachother. You can share e-mail addresses here... I have done it myself and made some darn good friends. If you don't want to use your standard address just go to yahoo and start a seperate address for just your discussions. They have free e-mail accounts. When you get one post it on here in spaces... this is mine c z e s h e p... at yahoo . com. You both no what the "at" signifies I am sure :) If either of you wants to write me my name is Troy... I will be more than happy to help you guys contact eachother. Now on a side note... if anyone wants to reply to me or these two make contact with their addresses on here... please be respectful. Its a personal thing with these two ladies... if you have something to offer make it nice!!
I hope this helps you both and God Bless :)

There it is. When I come across someone who needs to talk to someone who knows,I will send them here.

Peace

DisIzWacYo wrote:

There it is. When I come across someone who needs to talk to someone who knows,I will send them here.
Peace

How you doing brother?

American Born2 wrote:

<quoted text> Hiya RSD... I am so glad Hacksaw did this for you guys!! We have discussed in the past the medical issues... mine were no where near as bad as yours and QB's but I know first hand what it is like to be ignored or misunderstood when you have a medical issue. I wanted to give you some ideas on keeping contact with eachother. You can share e-mail addresses here... I have done it myself and made some darn good friends. If you don't want to use your standard address just go to yahoo and start a seperate address for just your discussions. They have free e-mail accounts. When you get one post it on here in spaces... this is mine c z e s h e p... at yahoo . com. You both no what the "at" signifies I am sure :) If either of you wants to write me my name is Troy... I will be more than happy to help you guys contact eachother. Now on a side note... if anyone wants to reply to me or these two make contact with their addresses on here... please be respectful. Its a personal thing with these two ladies... if you have something to offer make it nice!!
I hope this helps you both and God Bless :)

You're a doll ;) I just wrote to you on the MJ thread that this link was on so I won't repeat.
I know we're in good hands with you and I thank you again for all you've done for me in the past and right here. I'll be e-mailing you. I have to try to get some sleep, but you'll be hearing from me very soon. Bless you my friend :)

This forum was made possible by "Hacksaw." Those of us who suffer from RSD/chronic pain thank Hacksaw for caring when he didn't have to and going the extra mile to contact Topix on our behalf.

I'd also like to give a "shout out" to American Born2. He is a stand up guy and a true American. If the world was made up of people like these 2 gentlemen, we'd have a Utopia :)

I wish nothing but the best to both of you.
Respectfully,
RSD Survivor

Quakertown Born wrote:

I'm glad that topix found it important enough to start this forum. I do suffer on a daily basis and it is hard when you try to explain the pain and when everyone looks at you, you look normal but the pain isn't easily seen.(Other than the facial expressions of pain) so it takes alot for people to even believe you let alone trying to find someone to treat you. If anyone knows of a doctor in the Quakertown/Allentown area who treats this disease please let me know. I could use all the options I can get.

Wasn't this awesome???? I cried when I read about the RSD link. That someone else cared enough to do something to help us. QB-I will be contacting my doc(I have his e-mail). I'll see if he'll take you on as a patient. No promises. But I'll beg for you. I don't want you to get your hopes up. If not, we'll find someone.
You really don't want a pain management anyway. They don't have hospital priveleges(almost all).
I'm starting to see double(haven't slept in 2 days)LOL! So I'm signing off for now and will be back as soon as possible.

This article is what I was telling you about. Dr. Schwartzmann takes people to Germany for the coma. I would be a bit concerned going to Mexico now. My immune system is compromised as of Dec.'08. RSD does that to people. With the swine flu, I would really hesitate going to Mexico.I wanted to contact Fern and remind her of that.Now I'll worry about her too.
Gentle hugs. Now you're really not alone.:)

RSD Survivor wrote:

<quoted text> You're a doll ;) I just wrote to you on the MJ thread that this link was on so I won't repeat.
I know we're in good hands with you and I thank you again for all you've done for me in the past and right here. I'll be e-mailing you. I have to try to get some sleep, but you'll be hearing from me very soon. Bless you my friend :)

Thank you RSD... I saw what you wrote on the other thread and I really appreciate that!! I am a true American... I may be a bit rough around the edges but I really do care about our freedom to express ourselves without trollish interuption! I guess sometimes... being a man ya know... I have to open up a can of whoop arse to get the point across... thats why I chose to respond here... I believe if I would respond on the MJ site some bonehead would try to interfere. Email me when you get the chance ok... but get a hold of Q-born asap... you guys should talk... I'll always be here and i am patient :) God bless RSD!!

DisIzWacYo wrote:

There it is. When I come across someone who needs to talk to someone who knows,I will send them here.
Peace

Thank you.

Quakertown Born wrote:

I'm glad that topix found it important enough to start this forum. I do suffer on a daily basis and it is hard when you try to explain the pain and when everyone looks at you, you look normal but the pain isn't easily seen.(Other than the facial expressions of pain) so it takes alot for people to even believe you let alone trying to find someone to treat you. If anyone knows of a doctor in the Quakertown/Allentown area who treats this disease please let me know. I could use all the options I can get.

Hi QB!!! Thank God the rain has stopped. It has put me back a bit. I did e-mail my doctor. i'll let you know what he says. Did you get a chance to check out any of the websites?
I'm going to contact the one person who has the answer to getting this forum going. He is the Director of RSDS.org and can send out electronic e-mails that pertain to RSD stuff. I'm going to give him the link.

I'm pretty overwhelmed right now. I guess the monster that lives inside of us is not done spreading for me. I touched my forehead last week and felt it right over my eyebrow. Whenever I wash my face I think , "What is this going to do to me now?" I haven't said this or even admitted this before but I am scared. Scared of what this will do to me now. The fight gets harder and harder as this disease progresses.

Enough of me. I want to hear from you. Be patient with me, I'm moving real slow right now.
Gentle hugs- RSD Survivor

Hello, I hope you don't mind me thread invading but this is the first time I have found a place to talk with others about RSD! I was diagnosed recently but have had it since Feb 24 of this year. Still learning how to cope, I have my moments and am getting very little sleep.

I look forward to chatting with you all!

Gatorsmomma wrote:

Hello, I hope you don't mind me thread invading but this is the first time I have found a place to talk with others about RSD! I was diagnosed recently but have had it since Feb 24 of this year. Still learning how to cope, I have my moments and am getting very little sleep.
I look forward to chatting with you all!

I'm so glad you're hear. I am on my 5th year with RSD. Do you know that you could have a chance at remission within the first 6 months of onset? Did you have any sympathetic blocks? That's the first thing that's usually done. Then a med regimen and PT. Do you have a doctor that understands RSD?

The sleeping thing is a bummer. You're not going crazy. It is a major setback with RSD.You're on the right track. I picked up on your statement, "Still trying to cope." Your life will never be the same. Don't ever give up hope.We RSDers have to learn how to do things differently. This is a grieving process and every person is different.

I check my computer everyday. By the way-You're not "crashing" this forum was started for you and every person who's life is affected by RSD and their friends and family.

Talk to you when evr you need. Stay strong-RSD Survivor:)

RSD Survivor wrote:

<quoted text>I'm so glad you're hear. I am on my 5th year with RSD. Do you know that you could have a chance at remission within the first 6 months of onset? Did you have any sympathetic blocks? That's the first thing that's usually done. Then a med regimen and PT. Do you have a doctor that understands RSD?
The sleeping thing is a bummer. You're not going crazy. It is a major setback with RSD.You're on the right track. I picked up on your statement, "Still trying to cope." Your life will never be the same. Don't ever give up hope.We RSDers have to learn how to do things differently. This is a grieving process and every person is different.
I check my computer everyday. By the way-You're not "crashing" this forum was started for you and every person who's life is affected by RSD and their friends and family.
Talk to you when evr you need. Stay strong-RSD Survivor:)

Hello, thanks so much for replying so quickly! I was supposed to get my nerve block last week but we had a set back because of my right leg. It has taken on some of the symptoms of RSD but doctor had to rule out blood clots so nerveblock was postponed. My RSD started in my right hand and is now in my entire arm.

I was already in physical therapy because I had Carpal Tunnel surgery and after ward lost the use of my hand (had most symptoms of RSD, got dianosed RSD about 3 weeks ago. PT is wonderful seems knowledgeable with RSD but not so sure about doctor. I am glad I see her as often as I do, sheeven lets me call her when I have a melt down...which I have had quite a few...more so before I was diagnosed. I just couldn't understand why I waqsn't getting better and no one around me could understand either.

Will write more later! Thanks again!

Gatorsmomma wrote:

<quoted text>
Hello, thanks so much for replying so quickly! I was supposed to get my nerve block last week but we had a set back because of my right leg. It has taken on some of the symptoms of RSD but doctor had to rule out blood clots so nerveblock was postponed. My RSD started in my right hand and is now in my entire arm.
I was already in physical therapy because I had Carpal Tunnel surgery and after ward lost the use of my hand (had most symptoms of RSD, got dianosed RSD about 3 weeks ago. PT is wonderful seems knowledgeable with RSD but not so sure about doctor. I am glad I see her as often as I do, sheeven lets me call her when I have a melt down...which I have had quite a few...more so before I was diagnosed. I just couldn't understand why I waqsn't getting better and no one around me could understand either.
Will write more later! Thanks again!

I found that I listen to my body. You knew you weren't getting better and didn't have a diagnosis. Unfortunately, you got a diagnosis, probably one you never expected.

The best thing for you to do now is to learn as much as you can about your disease. I like 2 websites: www.rsds.org and www.rsdhope.org . They helped me alot at first. Then I didn't want to know anymore.LOL!

I re-read my 1st post to you. I wrote "It's so good to see you on HEAR" LOL!!! I am going on hardly any sleep right now. The weather is a bit bumpy up here in PA.

I'll be looking for you and stay strong:)