[happyface123]

My mother is currently going through RSD in her right arm and Right leg and she has been going through this pain for several years.I've seen her go from regaining her strength to absolutley loosing it in her arm. It is a terrible cicumstance to be in and I hate having to see my mother go through pain everyday and feel so helpless. I don't want to see her pain go from worse to worse and spread. I've read several stories about people who have to be in wheelchairs because of this RSD pain. It is hard for me as a teenager to watch my mother grow up this way and not be able to do the things everyother kid can do with their mother.I guess my question is what has helped you the most to overcome this? Does anyone know of any good pain clinics/doctors in the bay area that have helped them? If you have any advise to help my mom, please feel free to as well.
Thank you,
Alynna

[debbiehub]

Hi there- I know it must be horrible watching your mom go thru this, Does she see a pain specialist? Has she tried ketamine infusion or nerve blocks. I am not from your area but I am sure someone will come along and advise you,,,Can your mom come on this message board herself?

Hang on...

Debbie

[happyface123]

Originally Posted by debbiehub

Hi there- I know it must be horrible watching your mom go thru this, Does she see a pain specialist? Has she tried ketamine infusion or nerve blocks. I am not from your area but I am sure someone will come along and advise you,,,Can your mom come on this message board herself?

Hang on...

Debbie

hey debbie,
She does see her doctor but not a specialist..The doctors don't realy want to help her out though. One of them has advised for her to have the nerve block but the only concern my mother has is her seizures. She recently started having seizures in the middle of last year. I know that she is scared to have a seizure or anxiety attack once he inserts the needle because he told us that you would have to be awake for it. From what shes told me, she is just realy scared to try it out because of all the side affects. The doctor told us that with the block it wears off over time and once it wears off her pain might get worse.I have a never heard of a ketamine infusion...does that usualy help?I am trying to talk her into making an account for this website because I know there is alot of people out there that are going through the same issues she is going through. I hope i will convince her.
Thank you for replying to my message, I realy appreciate it.
Alynna

[gramE]

Originally Posted by happyface123

My mother is currently going through RSD in her right arm and Right leg and she has been going through this pain for several years.I've seen her go from regaining her strength to absolutley loosing it in her arm. It is a terrible cicumstance to be in and I hate having to see my mother go through pain everyday and feel so helpless. I don't want to see her pain go from worse to worse and spread. I've read several stories about people who have to be in wheelchairs because of this RSD pain. It is hard for me as a teenager to watch my mother grow up this way and not be able to do the things everyother kid can do with their mother.I guess my question is what has helped you the most to overcome this? Does anyone know of any good pain clinics/doctors in the bay area that have helped them? If you have any advise to help my mom, please feel free to as well.
Thank you,
Alynna

Dear Alynna,
Your cry for understanding of how to help your mother was very difficult to read, and at the same time gave insight into how much you love and need your mother.
I can tell you when I'm at my lowest, the most comfort I receive is from being loved unconditionally just as I am. Now for me that means distracting me from my pain by sharing my space and time with conversation about something other than my pain, a good game of scrabble without feeling like my opponent would rather be somewhere else, or enjoying a favorite movie. A couple hours of distraction are priceless.
Your mother is the same person she always was on the inside and I hope she knows just how much you love her.
There is a wealth of information here, and I'm positive many will respond to your request.
With prayers for you and your mother,
Pat E

[happyface123]

Originally Posted by gramE

Dear Alynna,
Your cry for understanding of how to help your mother was very difficult to read, and at the same time gave insight into how much you love and need your mother.
I can tell you when I'm at my lowest, the most comfort I receive is from being loved unconditionally just as I am. Now for me that means distracting me from my pain by sharing my space and time with conversation about something other than my pain, a good game of scrabble without feeling like my opponent would rather be somewhere else, or enjoying a favorite movie. A couple hours of distraction are priceless.
Your mother is the same person she always was on the inside and I hope she knows just how much you love her.
There is a wealth of information here, and I'm positive many will respond to your request.
With prayers for you and your mother,
Pat E

Thank you very much for pointing that out to me. I know I need to set some time aside to watch movies and make puzzles like we used to. It is just very hard for me to keep up with school and make time with my mom. Not only does school get in the way but also she gets very angry when shes in pain and I try to understand that it must not be easy being in pain everyday. I know she has a lot of stuff going on in her life and the last thing I want to do is stress her out. I will soon be out of high school and have a future waiting ahead of me and it is very hard for me to know that i will have to leave my mom behind in the conditions shes in.
thank you for replying to this post Pat E
I realy appreciate the time you took out of your day to write me back
Alynna

[cindi1965]

You have come to the right place, sweetie. I wish my kids would have tried to find out more about RSD when I was first diagnosed. What a lucky mother you have! Having the compassion to see that her disorder is hard on her is very touching.

Everyone with RSD are like snowflakes...no two cases are alike and treatments that help some people don't help other people. Tell your mom to keep searching and don't give up on finding the right "cocktail" to ease her pain. I take Xanax, Norco, Celexa, Elavil and Baclofen and this combo together is making me more functional than all the other meds. I have never tried the ketamine because no doctor in my area will even consider it. I'm not quite sure if it will work and as long as my other drugs are working than I am okay. Please never hesitate to come here and ask anything. I love this board and it has been my saving grace. Each night I pray for everyone and now you are on my list..

[Imahotep]

Originally Posted by cindi1965

You have come to the right place, sweetie. I wish my kids would have tried to find out more about RSD when I was first diagnosed. What a lucky mother you have! Having the compassion to see that her disorder is hard on her is very touching.

Everyone with RSD are like snowflakes...no two cases are alike and treatments that help some people don't help other people. Tell your mom to keep searching and don't give up on finding the right "cocktail" to ease her pain. I take Xanax, Norco, Celexa, Elavil and Baclofen and this combo together is making me more functional than all the other meds. I have never tried the ketamine because no doctor in my area will even consider it. I'm not quite sure if it will work and as long as my other drugs are working than I am okay. Please never hesitate to come here and ask anything. I love this board and it has been my saving grace. Each night I pray for everyone and now you are on my list..

Your mom needs to learn the things that make it worse and which make it better. Get as much exercise as can be tolerated (this can cause pain later) and avoid stress.

Try to start medications and new procedures one at a time to see what the effects are. Most of us need to address dietary issues and things like salt or additives can be problematical for us.

Having someone around who cares and is trying to understand is very important so your mom already is one step ahead of her troubles.

I wish you both the best.

[ali12]

Hi Alynna,

Really sorry to hear about your mothers struggle with RSD!

I, like yourself, am a teenager however it is me with RSD. I'm approaching 16 years of age and have had it since I was 12 years old. It started in my left leg and has since spread to both arms and possibly my back though this hasn't been confirmed yet as I have other underlying back issues going on.

Like you and your mother, I worry about spreads. I think more so since I have had to deal with them myself. ALL of my spreads have occured from an injury so I try and avoid them as much as possible ... though as I am sure you are aware from your mother, with RSD that is often impossible!

One of the things my doctors told me to do when I have a spread or a flare is to keep moving my limbs as much as possible. It hurts a h*ll of a lot but in the long run does help. RSD is a 'Use it or lose it' syndrome. Tell your mum if she fears a spread coming on to keep moving as much as possible ... start exercising gradually and then building the exercises up when she feels able to.

I spent 13 months in a wheelchair after a nerve block caused me to lose all of my co-ordination. I had to go through 3 weeks of intense Physical Therapy. It was really, really hard and a LOT of hard work but I am now able to walk short distances and am really thankful for that! PT helps a lot of people with RSD so that might be something to look into for your mother.

Stress is a big thing too. I find that the more stressed I am, the more pain I am in and the more prone to flare up's I am. It's extremely hard not to be stressed when your dealing with something like this but tell your mother to limit her stress levels as much as possible. I have been going through a really bad depressive stage lately but speaking to a Psychologist has helped so that might be something to look into also.

Another thing I find with RSD is that 'For every day I play, I must set aside a day to pay'. That basically means that if I do something fun one day (go to the movies with friends etc), I have to spend a day paying for it the next day. I usually find if I do something fun, I will have a flare afterwards and can spend several days in bed! It's hard not to push yourself but with this disease, you really need to know your limits and not overdo things ... the same as not underdoing things!

I think it's really good that you show such an interest in your mums illness. I wish more people were like you, I have lost most of my friends because of RSD and not many family members understand what I am going through except my mother. If you'd ever like to talk to her send me a PM. She comes on often so i'm sure she'd be more than happy to talk to you from a carers aspect.

Take care and send your mum my love.

Alison

[cindi1965]

Originally Posted by ali12

Hi Alynna,

Really sorry to hear about your mothers struggle with RSD!

I, like yourself, am a teenager however it is me with RSD. I'm approaching 16 years of age and have had it since I was 12 years old. It started in my left leg and has since spread to both arms and possibly my back though this hasn't been confirmed yet as I have other underlying back issues going on.

Like you and your mother, I worry about spreads. I think more so since I have had to deal with them myself. ALL of my spreads have occured from an injury so I try and avoid them as much as possible ... though as I am sure you are aware from your mother, with RSD that is often impossible!

One of the things my doctors told me to do when I have a spread or a flare is to keep moving my limbs as much as possible. It hurts a h*ll of a lot but in the long run does help. RSD is a 'Use it or lose it' syndrome. Tell your mum if she fears a spread coming on to keep moving as much as possible ... start exercising gradually and then building the exercises up when she feels able to.

I spent 13 months in a wheelchair after a nerve block caused me to lose all of my co-ordination. I had to go through 3 weeks of intense Physical Therapy. It was really, really hard and a LOT of hard work but I am now able to walk short distances and am really thankful for that! PT helps a lot of people with RSD so that might be something to look into for your mother.

Stress is a big thing too. I find that the more stressed I am, the more pain I am in and the more prone to flare up's I am. It's extremely hard not to be stressed when your dealing with something like this but tell your mother to limit her stress levels as much as possible. I have been going through a really bad depressive stage lately but speaking to a Psychologist has helped so that might be something to look into also.

Another thing I find with RSD is that 'For every day I play, I must set aside a day to pay'. That basically means that if I do something fun one day (go to the movies with friends etc), I have to spend a day paying for it the next day. I usually find if I do something fun, I will have a flare afterwards and can spend several days in bed! It's hard not to push yourself but with this disease, you really need to know your limits and not overdo things ... the same as not underdoing things!

I think it's really good that you show such an interest in your mums illness. I wish more people were like you, I have lost most of my friends because of RSD and not many family members understand what I am going through except my mother. If you'd ever like to talk to her send me a PM. She comes on often so i'm sure she'd be more than happy to talk to you from a carers aspect.

Take care and send your mum my love.

Alison

Sweet Ali....you are the sunshine of this board. I love it when you pop up...you have helped me so much since I joined and I am so glad to have you back <3

[ali12]

Aw thank you so much Cindi, that means a lot!

Sorry I have been absent from the forum. I have been really depressed lately and dealing with an RSD flare up (Doctors told me there's little more they can do but wants me to go on an Intense PT Course again ... this time though it's to try and help you 'cope' with the pain).

On top of that I have been really busy with school work. I'm in the last year of school in the UK (our schools only go up to 16 years of age then we start College) so have been really busy with school work. I've got my big exams coming up in May which determine my future and whether or not I get in a place in College. It's hard work balancing school (though I am home tutored now) on top of RSD but thankfully, I have been getting the highest possible grades in English so i'm hoping i'll do well !

Please know that I do think about you all regularly and hope you are all doing well. I'll try and pop on more

Originally Posted by cindi1965

Sweet Ali....you are the sunshine of this board. I love it when you pop up...you have helped me so much since I joined and I am so glad to have you back <3