[RSDLeftFootONLY]

Just wanted to say hi to everyone! I'm half asleep, but I wanted to post before I forgot. RSD has "caused" me to be VERY forgetful and I do not sleep well. Further, my doctor says and I have read that caffeine is bad for RSD, so I stopped completely...I still can't get used to this and this was over 2 months ago.

This post introduces me. I am 25, my name is Nicole. I'm a vegetarian, will be a high school teacher in history, psychology, sociology and later political science (government). I am a newlywed as of July 6, 2007. I love coffee *but can't have it now!!!!* and cheesecake and the color aqua....ect. ect.

I have read a lot of posts for the last 2 hours from all of you. I will pray for your recovery, and I literally feel your pain. I commend you all for being SO STRONG! I am also suing the city where I fell, no, I don't want to sue, I love the city, but they MUST fix the sidewalk so other's are not hurt....further WHEN I win I plan to donate a substantial portion to RSD research and RSD foundations. I also began painting and have created 1 painting about my RSD, I hope to post it in the future!

Early Intervention: I have had RSD for 3 months, and began physical therapy less than 2 months into it, plus I began "desensitizing" and massaging 13 days after the injury when I was diagnosed. As soon as I got home from the doctor, I looked it up online and treatments and began from there. I attribute me feeling better to: early intervention and reiki. My dad does reiki and he began doing this as soon as the injury occured. I really recommend reiki. I can give you more information about it if you want--just ask

About me and how I "got" RSD: Anyway, I got married July 6, 2007..was sick on the honeymoon, followed by 2 infections when I got home, a cold and then the flu. I was better for 3 days..I usually do not get sick..well not for that long!! Sooo...I was really excited to have fun with my "new" husband! And on the 3rd day of feeling good, it was my husbands birthday, August 30, 2007. We were out walking on mainstreet in a cute little city by our house, as we do frequently. I twisted my ankle/foot in a huge crack in a curb, just perfect for my foot to fit in. The RSD "showed" about 7 days into the injury, it was all the way up my calf. Now it is localized in the front portion of my foot, only on the bottom.

Physical Therapy: I have been in physical therapy for 7 weeks. 4 weeks into it my doctor saw me again to evaluate my progress, and was amazed and said that my RSD was almost "gone"!

Medications: I was on codeine with tylenol and a muscle relaxant. The codeine didn't do much, the muscle relaxant (Skelaxin) helped wonders! Both made me feel "high" and nauseous, as did the high dose of Naproxen, which I have lowered to help my stomach. I also had a horrible electrocuting feeling in my heel for a month, but the pain THANKFULLY subsided, and was going to go on Lyrica. I still have a "twitch" in the front bottom portion of my foot at times. I am going to my doctor this Friday, to see if I should go back on muscle relaxants, but I took those for when my foot spasmed and cramped to a curled position--PAINFULLY and I could not voluntarily move it. The twitch another doctor I see believes may be nerve related and wants to wait a few weeks --hoping it will go away, as the pain has been lessening --before prescribing Lyrica. I also have undiagnosed pain in the ball of my foot, same as where the twitches are, which I am tired of and will address with the doctor Friday, because it is still holding me back in physical therapy.

Life Changes: I "had" to withdraw from my university classes, because of the combination of pain/side effects from medications/no caffeine/lack of sleep. I think it was the BEST decision for me, because I was able to fully immerse myself in "curing" my foot. Most days I spend at least 8 hours cycling --walking, sitting, standing, resting, doing the home physical therapy exercises, 3 days a week of physical therapy epsom salts, moist heat, massaging and stretching. I said I need to focus on this NOW and do as much as I can to alleviate it. I withdrew and at least I was only pursuing an extra minor, as I already have history and psychology as majors (finished) and sociology as a minor (finished) and so next semester I can do my secondary education courses...then next year student teaching -- I wanted to be "well" so I could do my best and NOT LET RSD CONTROL ME!!!!

[ali12]

Hi there,
Welcome to Neurotalk.
Please let me introduce myself. My name is Alison, I am 12 years old and I suffer from RSD in my left leg. I developed RSD after an ankle sprain in March, I was diagnosed 4 months later. When I was diagnosed I had a Guanethidine nerve block which caused me to lose my balance, I am currently in a wheelchair.
I was later prescribed Amitriptyline which caused me to have blurred vision' and resulted in a knock to my right arm ... I was diagnosed with RSD in my arm 2 weeks later. My arm is much better now, thank god.
I too don't get to sleep much due to the pain levels. I find it really hard to concentrate and I can't go to school due to pain levels, mobility problems etc.

I am so sorry that you are dealing with RSD, I sure hope that you get better soon. It is good that you got an early diagnosis.

Medications that I have been on: Lyrica, Gabapentin, Paracetamol, Morphine, Ibuprofen, Baclofen, Tramadol, Amitriptyline and non have taken the pain away (my pain is a 9 and half on the pain scale)

Health proffessionals that I see: Physiotherapists (don't like Physiotherapy, it hurts my leg a lot and my physiotherapists talk to me like I am 2 years old), Psychologist, Occupational therapist, PM doctor and Neurologist.

I hope things start looking up for you, if you need anything I am here
Take care
LOVE
Alison

[dreambeliever128]

It sounds like you are getting control of the RSD. Determination is a good thing in fighting it.

I was wondering if you had blocks. You didn't mention it but I believe in them and that they can help put the RSD into remission if they are done.

My name is Ada and I won't even go into my story, too long and too much. I have had RSD along with TOS since around 1998. Mine is pretty much in remission due to blocks, therapy, and meds. I am on Methadone only for the pain and a very low dosage. I will say though when the pain decides to come out completely, no meds seem to do the job.

I have something in common with your husband also. My birthday is August 30th but I am a lot older then you guys. I always hated my birthdate because it was the first day of school when I was growing up. What a birthday present. LOL

I sure hope that you do get to the point to where you can go back to school and work. There are several on here that do work but struggle to do it. Maybe you will be able to conquer the RSD and move on with your career. I sure hope so.

Welcome to the forum.

Ada

[RSDLeftFootONLY]

I guess this is my ranting portion: I PROMISE I won't post continously about ME, this is the last ME post, but I wanted to get this all out At the bottom is about nerve blocks.

--Sometimes I am still sickened physically, like I have a panic attack, and want to vomit, when I remember my first steps with RSD, and I remember walking around my condo screaming, and having to explain to our neighbors what the heck was going on! And remembering the electrocuting feeling in my foot. Being so scared it would spread, and debating suicide all the time, thankfully my husband helped me want to live! I know I should get over it because many of you still have to deal with this physically! but I'm having a problem psychologically with all this!

--People NOT understanding. I read other posts saying the same thing. My parents think I NEVER had RSD and am neurotic. Well, my dad does reiki for it and thinks something is wrong, but not RSD. My mom I believe does not want to face reality. My friends listen to the diagnosis, but seemed to be more concerned that I can't go walking around on mainstreet, go dancing ect. because it is an inconvience to THEM! They are great friends, but are being a little selfish here!!!!!! Some of my friends listen to me rant, cry, and fight my RSD, they are thankful that they can do things I can't, and just want to see me no matter what the activity...I am thankful for them!

--Doctors lack of knowledge about RSD, and the lack of research. I am an activist for many things. I get worked up about the problems in this world, but I don't fret, much and try to help solve it. NO MATTER WHAT IS MY RSD "GOES AWAY" OR NOT...I WILL HELP CAMPAIGN, WRITE DOCTORS ect. TO FIND A CURE!!! It's what I do for all things, and RSD having a 42 on MCGill's pain scale is REALLY in need of a cure!

--My husband is my motivator! He say's YOU WILL GET THROUGH THIS! At first, I was like a baby and needed him to do practically everything for me. I felt so bad, and he was exhausted. This was really hard to adjust to since we got married July 6, 2007. No one anticipates that "sickness and health" would apply to them so early in a marriage. I've gotten more "used" to RSD I think, and the symptoms are going down as well.

Nerve Blocks: I am AFRAID to get one. I know what the heck!?!? I am not afraid of shots, until now that I have RSD, and have read/told by doctor that a shot can aggravate RSD. Further, Dr. Hooshamond (um can't remember how to spell his name), he has a website with "RSD Puzzles" claims that they are not good, or something...hmm. I do not know if he is legitimate, you never know on the internet.

[ali12]

Hi Nicole,
I hope you are Ok.
I totally know how you feel about people not 'believing how much pain you are in', before I was diagnosed doctors would say to me that I was 'making the pain up'
My moms great she is a really good with me, her mom (my nanan) had MS so I think she understands neurological disorders. My dad is more of a 'bury your head in the sand person', I am sure that he thinks that if he doesn't think about my illness then it would go away - but life is not like that unfortunatley. My grandma and grandad are still confused about what is up with me, I don't think they understand how bad the pain is. I am unable to go to school but my friends are really good with me, they come and see me at home, take me out etc. I am very lucky to have such good friends, it's times like this when you find out who your true friends are. Yes, some of my friends don't understand RSD, but most of them are Ok with me.

My health proffessionals (PM doctor, Physiotherapists, Psychologists etc) are not really good, I don't think they know much about RSD. I had a Guanethidine nerve block on my leg in March, which caused me to lose my balance and the hospital couldn't even be bothered to lend me a wheelchair, even though I need one, my mom had to buy one

Congratulations on getting married

Take care
Alison

[RSDLeftFootONLY]

Alison,

I have read many of your posts. I am putting up Christmas decorations with my husband now, but I wanted to say hi really quickly and say that you are very strong! For 12 wow, or for any age this is difficult to get through, but once again at 12. Hope your balance is getting better. I'll write back soon.
Oh yes, have you tried reiki? Reply back, and state if you know anythign about it...I'll inform you about it as much as I can, I really think it can help ALL people with RSD...help not necessarily "cure" though.

--Nicole

[tayla4me]

Hi and pleased to meet you Nicole,

I just want to respond to what you said about blocks-I hope you don't mind

"Nerve Blocks: I am AFRAID to get one. I know what the heck!?!? I am not afraid of shots, until now that I have RSD, and have read/told by doctor that a shot can aggravate RSD. Further, Dr. Hooshamond (um can't remember how to spell his name), he has a website with "RSD Puzzles" claims that they are not good, or something...hmm. I do not know if he is legitimate, you never know on the internet.[/QUOTE]"

I understand there is such an influx of advice and information when we do our research and it is so hard to differentiate between what is fact and what is just personel opinion. I feel sorry for anyone starting on this journey but you really soubd as though you are well and truly in control---good on you for your positive attitude

Early Intervention with blocks that are done by a Pain Management Doctor who has much experience in them are documented to be an integral part of bringing about a remission.
I do stress that you do need to be in the care of an expert and a doctor who warned against them because it may worsen the RSD is definitely not the doctor you need to do them for you.
Many of us here are better off for having them and still have them regularly but their efficacy is quite dependent on the manner in which they are given.

Just a word on Dr Hooshmand--whilst he is considered to be very knowledgable in RSD I continue to be concerned that much of his site and his puzzles have seen no change/updating in the decade I have been reading them, despite there being a huge change in the treatment and research of RSD/CRPS.

Thank you for sharing your feelings, please know you are not alone in this fight---I know exactly how you feel and I wish you all the best.
You sound as though you will be a true advocate for the cause!!

Take care
Tayla

[tayla4me]

Originally Posted by ali12

Hi Nicole,
I hope you are Ok.
I totally know how you feel about people not 'believing how much pain you are in', before I was diagnosed doctors would say to me that I was 'making the pain up'
My moms great she is a really good with me, her mom (my nanan) had MS so I think she understands neurological disorders. My dad is more of a 'bury your head in the sand person', I am sure that he thinks that if he doesn't think about my illness then it would go away - but life is not like that unfortunatley. My grandma and grandad are still confused about what is up with me, I don't think they understand how bad the pain is. I am unable to go to school but my friends are really good with me, they come and see me at home, take me out etc. I am very lucky to have such good friends, it's times like this when you find out who your true friends are. Yes, some of my friends don't understand RSD, but most of them are Ok with me.

My health proffessionals (PM doctor, Physiotherapists, Psychologists etc) are not really good, I don't think they know much about RSD. I had a Guanethidine nerve block on my leg in March, which caused me to lose my balance and the hospital couldn't even be bothered to lend me a wheelchair, even though I need one, my mom had to buy one

Congratulations on getting married

Take care
Alison

Hi Ali,

I do worry so much that you have a Pain Management Doctor and team whom you say don't know much about RSD
This is simply not on as anyone who claims to be a Pain Management doctor MUST know about RSD and it's treatments. It is actually becoming quite a common cause for chronic pain.
Please, please, please change you team.
You do need to be moving your leg, but you must be given the correct pain management to make this possible. I am sure your balance problems can be solved if managed properly. The longer you are in the wheelchair the harder it will be to ever get out! I made the wrong decision years ago thinking that walking was just too difficult and painful so the wheelchair would be a better option. I truly regret that now and wish I has someone who had made me keep moving in the knowledge that just because it hurts does not mean it is damaging.
I just can't understand how a 'Pain Management Team" can allow this to happen, especially to a child---I am so sorry.
Love Tayla

[Desi]

Hi Nicole.. nice to have you here, not under these circumstances, though! My name is Desi and I have had 5 stellate ganglion nerve blocks done. I get put to sleep and don't remember anything!! I go to a qualified RSD specialist that knows what he is doing! Try and get those blocks and don't be afraid, and like Tayla said, experienced doc's who do the blocks are your "ticket" for getting them. The eariler the RSD is caught, the better for remission. Everyone is different, there are many avenues for you to get the help you need and deserve. hang on in there! ~Love, Desi

[ali12]

Hi RSDleftFootONLY,
Thanks for the reply. I have not tried reiki, but I have heard many things about it. I think reiki will hurt my leg when they touch it (my foot is hypersensitive)
My grandads wife says that I should try Shiatsu, but I don't think she realises how sensitive my foot is (even a slight touch on my foot hurts like hell)
I will mention reiki to my mom.
Thanks for the reply
Love Alison

Tayla4me,
Many thanks for the reply, I really appreciate everything you are doing for me ((hugs)), I really hope you are feeling better. I too don't think that my pain mangment unit know much about RSD, I am getting sick of them talking to me like I am a babyand accusing me of making things up when I am not. I have asked for a referal to another hospital, and someones got back saying that they have found me a new doctor (he is the top specalist in England who deals with RSD) so hopefully things will start looking up for me. I don't know when I will be going to see the new doctor, apparently my PM doctor will make us an appointment to see him.
Take care
Love
Alison