[maddiesgram]

Hi everyone,

I was diagnosed with RSD 2 years ago but didn't believe it until this week. It happened after I broke my little toe on my left foot. I really shattered it down in the joint (3 years ago in June) and when it didn't heal I had surgery on it to take the dead/shattered bone out. About 3 weeks after surgery, instead of getting better I got much worse and could barely take the pain. The surgeon didn't believe me. I ended up seeing a number of docs and finally seeing an ortho. surgeon who diagnosed me. He sent me to a pain doc who "confirmed" the diagnosis with 3 lumbar sympathetic blocks. They only helped for about 10-12 hours. When he said that the only thing he could do for me was a spinal cord stimulator I was really scared and found another pain doctor. I still see him (not quite 2 years). He says that I do not have RSD because the pain, although screaming severe, is only in my little toe, with some burning in other toes and some redness in foot as well as toe. I've seen about 10 doctors that ALL say that I DO have RSD. I saw 2 last week and they absolutely say that I do. But my pain doc says that it is nerve damage. This week I saw a foot surgeon because I was considering amputation. He did this: He injected 5cc of Marcaine in my toe and all around it. He said that it would be very numb to a normal toe. He told me that if it relieved all of the pain he would try an ampution with no promises. He said that if the pain did not go away after numbing all of the nerves going into the toe, that it was surely RSD and to go to pain management. The pain did not go away. I am just SO sad. I had the hope of the amputation and now just don't know how I can survive with this pain, almost total lack of support, financial deep problems, isolation, not being able to walk... and other things. So many losses. I don't know how I can hold on. I can't stand up long enough to cook because any walking or standing causes the pain to go up and up. Therefore I eat junk and some fruit. The depression is severe but I can't afford counseling and don't qualify for free things... I'm in the middle. It's just so hard to take that this will never stop. How do you do it? How do you have any life? I don't see how I can. I'm sorry for this pity-party. I just needed to tell someone how I feel and have no one. Hope you guys are doing OK. By the way, my name is Gail. I'm 55, divorced, and live in Texas. I have 2 grown children, both married, and one granddaughter. You can probably figure out her name- lol. Thanks for reading this. I'm sorry it's so long. I hope to "meet" some of you.

Take care.
gail

[AintSoBad]

Gail,
First,
Don't try to sit in a pity party, ok? You'll get past it.
WE all get there, but, it doesn''t get us anywhere.......

Whatever the cause, dear, we all come to the same place.

I'm 53, and have had rsd since 27. then, in 98. I acquired an TBI, (traumatic brain injury), these two took me through two EVIL divorces. I thought ladies were nice and kind. NOT! I got my ars torn out! again, and again! (Not that Men are better).
Dam, I thought All ladies were nice and kind, I will NEVER Think that again! Each person is to their own. (I simply made poor choices, so, in the end, it's my own fault).

Anyway,
It's about taking care of yourself.
And, you must do this!

Seek what your angels want you to want! Your Dreams!
Don't lose site of them!
Ever!

Then, find a good doctor, who will help you with that!!!

A Neuro, who's a good pain management doctor. forget PM doctors, they's full of shoit! (I saw a show on hulu, that was an expose' of PM docs).
Find a Neuro, who will let you dream your dreams!!
That's OK! and GOOD!

Then, carry on yourself! Forget the pain occasionally! (You must, to be Yourself!) When you feel a bit better, do something for yourself!
YOU have the pain, it doesn't have You!

Then, keep an open communication with your neuro!!!!!
OK?

Anything else you need, you come right back here.
I'll be here for you! And so will all of us!

There are too many fool hardy doctors, that aren't worth their weight, in lead.

PM me, if you wish....
I'll be here for ya! Cry if you wish! Get it OUT!

Then you, YOU, carry on! For yourself!

I often, cry myself to sleep. thinking, dreaming about my children, my daughter especially, who was to run my business. (my Son, was to run my 2nd busniness.)
I cannot get past this...
I cry, and, I cry.

Perhaps, we can help each other?

We'll see.......

Pete
asb

[keep smilin]

Originally Posted by maddiesgram

Hi everyone,

I was diagnosed with RSD 2 years ago but didn't believe it until this week. It happened after I broke my little toe on my left foot. I really shattered it down in the joint (3 years ago in June) and when it didn't heal I had surgery on it to take the dead/shattered bone out. About 3 weeks after surgery, instead of getting better I got much worse and could barely take the pain. The surgeon didn't believe me. I ended up seeing a number of docs and finally seeing an ortho. surgeon who diagnosed me. He sent me to a pain doc who "confirmed" the diagnosis with 3 lumbar sympathetic blocks. They only helped for about 10-12 hours. When he said that the only thing he could do for me was a spinal cord stimulator I was really scared and found another pain doctor. I still see him (not quite 2 years). He says that I do not have RSD because the pain, although screaming severe, is only in my little toe, with some burning in other toes and some redness in foot as well as toe. I've seen about 10 doctors that ALL say that I DO have RSD. I saw 2 last week and they absolutely say that I do. But my pain doc says that it is nerve damage. This week I saw a foot surgeon because I was considering amputation. He did this: He injected 5cc of Marcaine in my toe and all around it. He said that it would be very numb to a normal toe. He told me that if it relieved all of the pain he would try an ampution with no promises. He said that if the pain did not go away after numbing all of the nerves going into the toe, that it was surely RSD and to go to pain management. The pain did not go away. I am just SO sad. I had the hope of the amputation and now just don't know how I can survive with this pain, almost total lack of support, financial deep problems, isolation, not being able to walk... and other things. So many losses. I don't know how I can hold on. I can't stand up long enough to cook because any walking or standing causes the pain to go up and up. Therefore I eat junk and some fruit. The depression is severe but I can't afford counseling and don't qualify for free things... I'm in the middle. It's just so hard to take that this will never stop. How do you do it? How do you have any life? I don't see how I can. I'm sorry for this pity-party. I just needed to tell someone how I feel and have no one. Hope you guys are doing OK. By the way, my name is Gail. I'm 55, divorced, and live in Texas. I have 2 grown children, both married, and one granddaughter. You can probably figure out her name- lol. Thanks for reading this. I'm sorry it's so long. I hope to "meet" some of you.

Take care.
gail

Hello Gail..

One thing you must understand is your are not alone.. esp. on this forum.. and we know your pain.. if it were up to me..I'd say you have RSD.. and it is deadful.. I know!!! I have had my RSD for just over 2 + years now.. I battle with the pain cold trukey with zero meds cuz my system won't tolerate them. I get thru each day and when the day is over, I think.. I made thru another one.. and it is alot of work... there comes a point when we HAVE to accept this is us now and we do the best we can.. we have to continue to educate ourselves and look for answers AND do not let it distroy us. I still believe I am the luckiest lady alive because I still have the love in my heart and the zest to move forward just as I did pre-RSD days. Do we all have THOSE moments??? .. heck yes, how about THOSE days... sure but life is a gift and for some reason we are the choosen few to live and try to make sense of this incredibly nasty condition... maybe were out there in order to be a good example for others.. we are survivors because we don't give up..we only move forward looking for answers..Personally, I swear by my PM Dr... remembering I do not take meds but my Dr. is very knowledgeable and always supports my concerns. I have seen a numder of neurologists who just treated me as a number so, I think who you treat with it is personal preference. It has to do with the Dr.'s knowledge and bedside manner.

Pain free hug... You're not alone!

[Swatgen27]

Gail,

My heart goes out to you and I hope you know that you are not alone in this battle. I think anyone that has RSD has been in the place where you are and that place can be so very scary. I have had RSD for 2 1/2 years and was just officially diagnosed 6 months ago. I have found that RSD is physically painful which leads to a lot of emotional pain.
Over the years I have come up with a personal way to fight the emotional pain. One dark day, I thought to myself “the RSD is causing the physical pain but I'm in control of the emotional side." I figure to continue living, it is important that we find ways to manage the physical pain and also manage the emotional pain.
So one thing that I have found helps me (with the grieving, depression, sadness, feelings of being alone) is to not give up on my dreams. I still work in a fast pace career (doctors advised me to leave because the job is high stress) and a lot of the days are very hard to get through. Somehow, just knowing that I have not let the RSD take my career aspirations away from me... it gives me an inner strength. That strength gives me the energy to get up and do it all again the next day.
It is important to set goals (one of mine is grocery shopping) and when you complete your goal it helps fight off the depression. Note, it does not matter what the goal is, trust me. On bad days, often my goal is to do the dishes.
I know you are a strong person because you have been dealing with this for a couple years and that in itself takes more inner strength than the average person has to face in their entire life.
One last thing that I tell myself everyday... RSD is a battle and I don’t know about you but I really want to this battle. Arm yourself with Knowledge and a good support system (and you have the good support system here) and I know you will win your battle!

P.S. You will never be alone in this battle ever again. That’s the beauty of this forum. I know everyone has been so helpful and you will find some comfort here. (At least I know I did.)

[loretta]

Originally Posted by maddiesgram

Hi everyone,

I was diagnosed with RSD 2 years ago but didn't believe it until this week. It happened after I broke my little toe on my left foot. I really shattered it down in the joint (3 years ago in June) and when it didn't heal I had surgery on it to take the dead/shattered bone out. About 3 weeks after surgery, instead of getting better I got much worse and could barely take the pain. The surgeon didn't believe me. I ended up seeing a number of docs and finally seeing an ortho. surgeon who diagnosed me. He sent me to a pain doc who "confirmed" the diagnosis with 3 lumbar sympathetic blocks. They only helped for about 10-12 hours. When he said that the only thing he could do for me was a spinal cord stimulator I was really scared and found another pain doctor. I still see him (not quite 2 years). He says that I do not have RSD because the pain, although screaming severe, is only in my little toe, with some burning in other toes and some redness in foot as well as toe. I've seen about 10 doctors that ALL say that I DO have RSD. I saw 2 last week and they absolutely say that I do. But my pain doc says that it is nerve damage. This week I saw a foot surgeon because I was considering amputation. He did this: He injected 5cc of Marcaine in my toe and all around it. He said that it would be very numb to a normal toe. He told me that if it relieved all of the pain he would try an ampution with no promises. He said that if the pain did not go away after numbing all of the nerves going into the toe, that it was surely RSD and to go to pain management. The pain did not go away. I am just SO sad. I had the hope of the amputation and now just don't know how I can survive with this pain, almost total lack of support, financial deep problems, isolation, not being able to walk... and other things. So many losses. I don't know how I can hold on. I can't stand up long enough to cook because any walking or standing causes the pain to go up and up. Therefore I eat junk and some fruit. The depression is severe but I can't afford counseling and don't qualify for free things... I'm in the middle. It's just so hard to take that this will never stop. How do you do it? How do you have any life? I don't see how I can. I'm sorry for this pity-party. I just needed to tell someone how I feel and have no one. Hope you guys are doing OK. By the way, my name is Gail. I'm 55, divorced, and live in Texas. I have 2 grown children, both married, and one granddaughter. You can probably figure out her name- lol. Thanks for reading this. I'm sorry it's so long. I hope to "meet" some of you.

Take care.
gail

Hi Gail and Welcome to NT, I'm glad you found this forum. It's full of wonderful caring people. We are all at various stages of 'grief' Getting this diagnosis, and then realizing remission is slight chance, is overwhelming. The national organization-RSDSA had their annual meeting here in Scottsdale, AZ
this spring and I attended. Several Drs. spoke and the the next day was for the Drs. & therapists etc. I believe on this site it mentions the McGill Pain Index-lists RSD as 42 on a scale of 1-50. Also on this site there is a place to put your zip code and you'll get a phone number and name of support group leader closest to you. Being part of a RSD support group is very encouraging.
I don't always go, but when I do, it's always encouraging and informative.
Just a word of caution to think about- I would pace myself on how much information you take it. Too much too quickly can do the opposite of what you want. It does take time to absorb the magnitute of this disorder and the losses we experience and our future dreams being altered.
My name is loretta, 61 married,one daughter and son in law. a kitty and our daughter and son in law moved back from Chicago and are staying with us. We love it, except our kitty doesn't like their little min pin. But our house is large and 2 stories, so they have their own floors. smile They all have done research about RSD and my daughter has done depositions about RSD-she is court reporter so they are compassionate and understanding. I'm grateful for that. We live in Arizona 12 years-moved from Oregon. We love it here-Oregon rain and cold would be tough with RSD. What part of Texas do you live in?
Weather makes a huge difference with our pain. I'm sorry you can't take pain meds-can you use patches?
I got RSD a couple years before we moved here, but didn't know it. Had painful physical therapy for frozen shoulder that was a result of surgery. I was diagnosed 4 years after the surgery. I now have full body, internal. 5 years ago found a wonderful Dr. He is a nuerologist, psychiatrist, and pharmacologist. When I was diagnosed full body, by a new neurologist, he suggested psychiatrist. I didn't like his two references and didn't like him, so I looked in yellow pages and found this jewel of a Dr. I saw him once a month for 5 years and now seeing him once every 2 months. This disorder has been devasting to our pocket book. I was building our home base business, but when I got worse, couldn't get out very much.
There is another site that I learned a lot from -rsdrx.com A Dr. from Florida is retired now, but still has his website up. The part about puzzles list
is 146 questions from rsd patients and his answers. Really informative.
Is your little toe a workman's comp injury? The federal government accepts rsd as social security disability. There is information about it on NT.
RSD affects the Limbic part of the brain that causes depression, short term memory loss, or like we are talking to someone and forget words etc.
RSD is a autonomic disorder which means it affects our involuntary organs-blood pressure, circulation. I'm going to try the Hyperbaric Oxygen Chamber. My Dr. just built two clinics with HBOT in each of them. I take Cymbalta-anti-depressant that works well on nerve pain. Also take Lorazepam which is an anti-anxiety med that helps calm the sympathetic nervous system. Also take 2 blood pressure meds. My Dr. just finished a 200 person trial study for seroquel and fibromyalgia. The study had a wonderful side benefit of sleep aid.
So many of us have insomnia. I wasn't going to sleep till 5-6 a.m. it was awful, now I'm sleeping 10 hours at night. That cut my pain level way down.
RSD affects our immune system, so I am on a high anti-oxidant diet and superfoods. I took good notes at our nutrition RSD meeting, I'd be happy to send them by PM-private message if you's like.
I hope this isn't too long and overwhelming. Just wanted to share some ways that have helped me so much. Journaling is a wonderful way of expressing feelings. We all have shed many tears at dealing with this very painful disorder.Take care, your friend loretta soft hugs

[maddiesgram]

Originally Posted by AintSoBad

Gail,
First,
Don't try to sit in a pity party, ok? You'll get past it.
WE all get there, but, it doesn''t get us anywhere.......

Whatever the cause, dear, we all come to the same place.

I'm 53, and have had rsd since 27. then, in 98. I acquired an TBI, (traumatic brain injury), these two took me through two EVIL divorces. I thought ladies were nice and kind. NOT! I got my ars torn out! again, and again! (Not that Men are better).
Dam, I thought All ladies were nice and kind, I will NEVER Think that again! Each person is to their own. (I simply made poor choices, so, in the end, it's my own fault).

Anyway,
It's about taking care of yourself.
And, you must do this!

Seek what your angels want you to want! Your Dreams!
Don't lose site of them!
Ever!

Then, find a good doctor, who will help you with that!!!

A Neuro, who's a good pain management doctor. forget PM doctors, they's full of shoit! (I saw a show on hulu, that was an expose' of PM docs).
Find a Neuro, who will let you dream your dreams!!
That's OK! and GOOD!

Then, carry on yourself! Forget the pain occasionally! (You must, to be Yourself!) When you feel a bit better, do something for yourself!
YOU have the pain, it doesn't have You!

Then, keep an open communication with your neuro!!!!!
OK?

Anything else you need, you come right back here.
I'll be here for you! And so will all of us!

There are too many fool hardy doctors, that aren't worth their weight, in lead.

PM me, if you wish....
I'll be here for ya! Cry if you wish! Get it OUT!

Then you, YOU, carry on! For yourself!

I often, cry myself to sleep. thinking, dreaming about my children, my daughter especially, who was to run my business. (my Son, was to run my 2nd busniness.)
I cannot get past this...
I cry, and, I cry.

Perhaps, we can help each other?

We'll see.......

Pete
asb

Thanks for your message, Pete. I don't know if I'm replying correctly... this site is confusing me some. But, anyway, thanks so much. It's been a hard week. I hope I can be positive on this site eventually. I really do appreciate your thoughts and maybe we can help each other! Thanks, gail

[maddiesgram]

Originally Posted by keep smilin

Hello Gail..

One thing you must understand is your are not alone.. esp. on this forum.. and we know your pain.. if it were up to me..I'd say you have RSD.. and it is deadful.. I know!!! I have had my RSD for just over 2 + years now.. I battle with the pain cold trukey with zero meds cuz my system won't tolerate them. I get thru each day and when the day is over, I think.. I made thru another one.. and it is alot of work... there comes a point when we HAVE to accept this is us now and we do the best we can.. we have to continue to educate ourselves and look for answers AND do not let it distroy us. I still believe I am the luckiest lady alive because I still have the love in my heart and the zest to move forward just as I did pre-RSD days. Do we all have THOSE moments??? .. heck yes, how about THOSE days... sure but life is a gift and for some reason we are the choosen few to live and try to make sense of this incredibly nasty condition... maybe were out there in order to be a good example for others.. we are survivors because we don't give up..we only move forward looking for answers..Personally, I swear by my PM Dr... remembering I do not take meds but my Dr. is very knowledgeable and always supports my concerns. I have seen a numder of neurologists who just treated me as a number so, I think who you treat with it is personal preference. It has to do with the Dr.'s knowledge and bedside manner.

Pain free hug... You're not alone!

Thanks so much for your post. I have been feeling very much alone and it's nice to hear that I don't have to be. I hope I can be a good example sometime soon because I'm ashamed right now at how much I'm not. I do appreciate you telling me these things. Hope you're doing OK. Thanks, gail

[maddiesgram]

Originally Posted by loretta

Hi Gail and Welcome to NT, I'm glad you found this forum. It's full of wonderful caring people. We are all at various stages of 'grief' Getting this diagnosis, and then realizing remission is slight chance, is overwhelming. The national organization-RSDSA had their annual meeting here in Scottsdale, AZ
this spring and I attended. Several Drs. spoke and the the next day was for the Drs. & therapists etc. I believe on this site it mentions the McGill Pain Index-lists RSD as 42 on a scale of 1-50. Also on this site there is a place to put your zip code and you'll get a phone number and name of support group leader closest to you. Being part of a RSD support group is very encouraging.
I don't always go, but when I do, it's always encouraging and informative.
Just a word of caution to think about- I would pace myself on how much information you take it. Too much too quickly can do the opposite of what you want. It does take time to absorb the magnitute of this disorder and the losses we experience and our future dreams being altered.
My name is loretta, 61 married,one daughter and son in law. a kitty and our daughter and son in law moved back from Chicago and are staying with us. We love it, except our kitty doesn't like their little min pin. But our house is large and 2 stories, so they have their own floors. smile They all have done research about RSD and my daughter has done depositions about RSD-she is court reporter so they are compassionate and understanding. I'm grateful for that. We live in Arizona 12 years-moved from Oregon. We love it here-Oregon rain and cold would be tough with RSD. What part of Texas do you live in?
Weather makes a huge difference with our pain. I'm sorry you can't take pain meds-can you use patches?
I got RSD a couple years before we moved here, but didn't know it. Had painful physical therapy for frozen shoulder that was a result of surgery. I was diagnosed 4 years after the surgery. I now have full body, internal. 5 years ago found a wonderful Dr. He is a nuerologist, psychiatrist, and pharmacologist. When I was diagnosed full body, by a new neurologist, he suggested psychiatrist. I didn't like his two references and didn't like him, so I looked in yellow pages and found this jewel of a Dr. I saw him once a month for 5 years and now seeing him once every 2 months. This disorder has been devasting to our pocket book. I was building our home base business, but when I got worse, couldn't get out very much.
There is another site that I learned a lot from -rsdrx.com A Dr. from Florida is retired now, but still has his website up. The part about puzzles list
is 146 questions from rsd patients and his answers. Really informative.
Is your little toe a workman's comp injury? The federal government accepts rsd as social security disability. There is information about it on NT.
RSD affects the Limbic part of the brain that causes depression, short term memory loss, or like we are talking to someone and forget words etc.
RSD is a autonomic disorder which means it affects our involuntary organs-blood pressure, circulation. I'm going to try the Hyperbaric Oxygen Chamber. My Dr. just built two clinics with HBOT in each of them. I take Cymbalta-anti-depressant that works well on nerve pain. Also take Lorazepam which is an anti-anxiety med that helps calm the sympathetic nervous system. Also take 2 blood pressure meds. My Dr. just finished a 200 person trial study for seroquel and fibromyalgia. The study had a wonderful side benefit of sleep aid.
So many of us have insomnia. I wasn't going to sleep till 5-6 a.m. it was awful, now I'm sleeping 10 hours at night. That cut my pain level way down.
RSD affects our immune system, so I am on a high anti-oxidant diet and superfoods. I took good notes at our nutrition RSD meeting, I'd be happy to send them by PM-private message if you's like.
I hope this isn't too long and overwhelming. Just wanted to share some ways that have helped me so much. Journaling is a wonderful way of expressing feelings. We all have shed many tears at dealing with this very painful disorder.Take care, your friend loretta soft hugs

Thanks, Loretta for all this information and help. I'm barely able to respond right now due to the pain and depression. I'm really being pushed down by it. I'm glad you have the support of your family and I'll look into a RSD support group here. I never get much sleep and know that it must make all of this worse. It was so interested how you described short term memory loss and forgetting words... I feel like that so much! I really didn't know if it might be the RSD, or was a side-effect of my meds, or if there was just something really wrong with me that hadn't been diagnosed. Anyway, thanks for telling me all of this. I live a little north of Dallas and had always lived in Dallas until my divorce 11 years ago. My daughter lives in Dallas and just got married a little under a month ago. My son and his wife live in Alabama. I believe it about the pain scale numbers because this is the worse pain I've ever had and I've had major surgery and two children. I really appreciate your kindness. I'm just so alone right now and it's a bad time to be alone. Thanks so much... hope to talk again soon. gail

[keep smilin]

Originally Posted by maddiesgram

Thanks so much for your post. I have been feeling very much alone and it's nice to hear that I don't have to be. I hope I can be a good example sometime soon because I'm ashamed right now at how much I'm not. I do appreciate you telling me these things. Hope you're doing OK. Thanks, gail

Oh but Gail.....

You are no way alone.. not in your fight with RSD nor on this site.. some days are totally a challenge, physically and mentally... and other days are a bit more accepting... the truth of the matter is we have been dealt a pretty crummy set of cards how we play those cards is what really matters.. remember we all have those who care and love us and if anything else we must take care of ourselves if not for ourselves but for them.. I always say what is in my heart is what was there prior to my diagnosis.... You are loved as I am and to boot you have met new friends here... We can make it with RSD... together... really ... on sad days emphasis the positives...

Have a wonderful day!!! AND thank you your return note...

[AintSoBad]

Originally Posted by maddiesgram

Thanks for your message, Pete. I don't know if I'm replying correctly... this site is confusing me some. But, anyway, thanks so much. It's been a hard week. I hope I can be positive on this site eventually. I really do appreciate your thoughts and maybe we can help each other! Thanks, gail

Gail,
Never worry if you're replying correctly, I make mistakes most times I reply!
As I said some women, men, etc. are not good, so too it goes for doctors.
(MY apologies to all, if I sounded as though I was taking a swipe at all women).
I've been through more than a hundred doctors, but, that's because I got this thing back in '83. And, the law in my state was for unlimited coverage (Auto). Which just gave the doctors a field day!
There are some neurologists better than others, some PM's better than others. (the expose' show I saw was about FLA pain clinics).

Anyway, we don't even know what question to ask, or how to describe it... it's OK! Just say what you feel, we'll try to help.

While we've all been "through it", we've all been through something "different", too.

I'm glad you found us here, and are getting some answers.

Also, as far as amputations go, they almost never work with rsd. Most end up with the pain (even rsd pain) remaining.

I wish you the best!

Pete