new member

[Guest guest]

Dawn,

I am only 44 - I understand where you are coming from. All my problems started when I was 36 and it seems as if it has been all downhill since then, Of course, there are an abundance of other good things in my life now, so I have to learn to focus on the positives or I will go absolutely bonkers,

Best of luck to you,

Sandy T.

-- Re: Re: new member

I don't even know where to start. A little over two years ago I completely tore my ACL in my right knee. I told my doctor for about 8 months that something was really wrong! when he finally believed me, we found out that I had a tear in my menicus, another surgery! My knee has never been right since my first surgery. I was also recently diagnosed with optic neuritis (which basically means I lost alotof sight in my left eye and also helped in diagnosing my ms) I have also had 2 other major surgeries in the past two years. I had a large ovarian cyst and the worst abdominal adheasions my doctor said he has ever seen! I dont want to seem depressing, but if I dont laugh, Ill cry! At the moment I take methadone for my rsd and back pain, I used to take neurontin and oxycontin. I have a nurse coming to my home tommorow to show me how to give myself injections.I will be taking Avonex for my ms. The worst news of all is I just turned 40!!!!!!!!!!!!!!!!! Do you think life will get better?jomal1@... wrote:

Welcome Dawn.

Everyone here is great, they will answer any questions you have, etc.

Tell us a little about yourself.. how did you get RSD? What kinds of treatments, meds, etc. have you been using?

Hugs,

Jo

[Guest guest]

JO.

Thanks for your emial.

Have been on, neurontin. morphine. panadine forte, anti depressants. lignocaine. katamine, and at present only on endep.

Medication only makes me sick or I have really bad side effectsor it just doesnt work at all. Drs say I have a strange reaction to drugs. Dont know what is worse the pain or the side effects from the drugs. Am now getting grey hair... no wonder.

At present am going to a rehab hospital every week for the next 5 mths, to learn how to deal with this emotinally and also to stop the flare ups.

Although today I was ment to go but unable to drive. Pain is so bad.

Have found a book that is called explain pain and it is the latest stuff developed in Australia to explain the complex malfunction of the nerves.

If anyone is interested its at www.noigroup.com

It was helpful for me to understand the dynamics of this problem.

What is the treatment in the states. At rehab they are doing a lot of visual stuff and they talk about the smudging of the brain...etc

sabi

jomal1@... wrote:

Welcome, Sabi to the group.

I'm sure you'll find everyone here to be great. I don't know how much help we can be in finding you Doctors, since you are in Austrailia, but the support will always be here for you.

What kinds of treatments are you receiving? I wonder how much it differs from here in the States.

Looking forward to getting to know you.

Jo

[Guest guest]

lori thanks for your welcome email.

I worked for my boss (one of those people I have grown to dislike a dr) for 10 yrs doing the books for about 6 companies, private sec and also 6 days a week for nearly 4yrs I did laser hair removal , practice manage for medial centres. There were days when I only had a fine min break. So it all started with total overload.The laser machine was very heavy and the bed we had was not adjustable hense holding my arm up to hight for hrs a day. Have been on every drug known to man and even ketamine (dont know if its called that in the states).Most of them only left me sick or having really bad reactions to.

Am sorry to hear your bed ridden and still trying so hard to hang on to your job... I did the same for the last yr and a half but my boss has just sold the companys as he says he cant run it with out me there full time...( poor male)... and he is going to have a 6 mth break...lucky him.

How and where did your initial injury start .. let me know your story... we dont have anything like this here and for me its just a great way to talk to people who dont treat you as a nut case.

What meds are you on and what are the treatments in the states.. here they say its learning to live with this and that it may not ever go away..

not really a good prospect... also there is spinal implants, and a lot of visual stuff, but no physical rehab as yet..keep hoping that I will find info that will wipe away this bad dream and get on with this concept of life.

sabi

AlwayzLoRi@... wrote:

Sabi,

Welcome to the group, I'm Lori. I live in Florida, near Ft. Lauderdale, am single/no kids sadly, and am 32 years old. My family is far away from me and I have lost most of my friends due to the RSD as most of us have. This is a great group and you will find we understand what you are going through more than anybody, as we are all going through it too. I am still working at the momen, only because my company is letting me work at home for the most part, but the RSD has spread through my whole body and my hands are getting worse and worse. I don't know how much longer I will be able to work. I'm basically bed-ridden, only go to the office sometimes and the grocery store. Everything else I do online. Many of us have had to adjust our lifestyle because of the RSD, and many feel as you do - alone and isolated. How is your son with all of this? Does he and his girlfriend live near you? I hope that he is near you and that he is supportive. Anyway, I'm glad that you

introduced yourself and I look forward to getting to know you better. You will find that this is a warm, supportive, upbeat group of people...you have found a home here. I hope that you have a good day today. I don't remember what the time difference is, if you could let me know I would appreciate it. Also, I love the name you gave it, I will have to remember that! You mentioned the RSD is in your right arm, but you did not say how you got it...if you want to that is, if not that is fine too. Well I will stop asking all the questions....welcome again!

<hugs> Lori

[Guest guest]

Lois omg your house hold sounds a mixture of fantastic and tragic.Cant believe you have had five children I thought one hurt enough, am truly sorry to hear that you also lost one. I will not go into that as Im sure the pain is to deep... I only have one but to me he is my sunshine and my reason for not getting to dark about my future. If you know what I mean??

Where do you live and am so sorry to hear that so many in your house are unwell. What is the connetion, its it in our genes.. Like it is in others for diabetics, or cancer or heart problems..

Love the gin and tonic pun. could do with one right now..

Is your daughters condition debilitating or is she able to still go to school and function. Where is her problem.does she have a boyfriend, am sorry she has lost a lot of friends tell her it happens at all ages that some people just arent able to be there for the hard stuff.

Im sorry to also hear your b in law and your husband and even yourself have not been spared. Life sucks sometimes.

Have you ever been to melbourne, its been raining all day... which is nice to hear the rain on the roof and also for the farmers.. kind of drought here at the moment in the country areas.

I wish I too had the kind of family you have and the animals. I live alone and am single.. and feel with the current situation will be for a while.. its so much easier to deal with things in life if one has a supportive partner.

My dreams were to travel this yr as my son moved out of home 2yrs ago to move in with his girlfriend. son michael. girlfriend erin.

have a sister who is a nurse and she is as supportive as she can be with working and having a 10yr old girl and a husband. I only see her every few weeks when Im up to driving.

thanks for you lovely letter.

sabiLois Coulter wrote:

Hi sabi,

welcome my austrailian friend.Me a kiwi.I have a daughter with rsd she is 14 this is her 4th year with this problem.Vicki lost alot of her friends over the past 4 years.The only true friends seem to be those that have long term illness of differing degrees.

My husbands brother also has rsd and my husband is suspected of having it in his neck.And now my phsio is question my back pain as it.So we are keeping it in the family.

Its a devistating disorder not just because of the pain but the emotional impact and the total disrupting to goals and plans.

So many in the support groups often only cope with hour to hour rather than day by day.

Please know anytime you need a box of tissues or just want to vent i offer support.I cannot say to you i know how you feel that would be unfair of me as i have noticed this syndrome effects people in different ways.But friendship i do offer.

I am 37 mother of 5 girls one deseased and ages ranging from 14 down to 7.Married 18 years in november and have my mother living with us.She is 83.So we are a household of 7.Plus two rabbits they are called Gin and tonic and 3 cats and four goldfish.Plus assorted visitors who leave there worries but hay they have to leave them somewhere lol!!

WELCOME TO THE GROUP.

lois and vciki from christchurch NewZealandsabcha1962 wrote:

Hi I am a new member of this group and just wanted to introduce myself.I have suffered for the last year with complex regional pain syndrome..which I now would like to call completly rational person syndrome... hense having been treated like a nut case for the past yr and a half.I live in melbourne, australia and hve lost a few friend due to this horrid situation.I am only 41 and feel that my life is now at a transitional phase... transitional as Im still not sure what and how I will be the person I used to be.I was a practice manager for a dr for 10 yrs...my crps is in my right arm.... and only one mth ago I lost my job.I am single and have a 23 yr old son who lives with his beautiful girlfriend of 4 and a half yrs..The isolation is as hard as the

pain.regardssabi

[Guest guest]

barbara

thankyou for your warm wishes and for the insiteful toilet info. wasnt aware of the opp flushing dynamics. will notice next time what diretion it goes..it has opened up a new insite to life and the universe.LOL.

Last nite I got to send my greeting to you all and today have responded to ten people who know me by my pain and who have sent such wonderful emails.... I feel Like Im Home....evern though we are miles apart. Have tried to find a support group like this in melbourne but sadly there is non.... Hey thats an idea... maybe I can start one up.

thanks again

sabiBARBARA TORREY wrote:

Sabi - My sincere welcome to the group. Please pull up a chair, put your feet up, and know that you're not alone. Although most of us are across the sea and our toilet flushes in the opposite direction, we have an understand ing of what you're experiencing. I hope that you find us to be a warm and friendly group. Barbarasabcha1962 wrote: Hi I am a new member of this group and just wanted to introduce myself.I have suffered for the last year with complex regional pain syndrome..which I now would like to call completly rational person syndrome... hense having been treated like a nut case for the past yr and a half.I live in melbourne, australia and hve lost a few friend due to this horrid situation.I am only 41 and feel that my life is now at a transitional phase... transitional as Im still not sure what and how I will be the person I used to be.I was a practice manager for a dr for 10 yrs...my crps is in my right arm.... and only one mth ago I lost my job.I am single and have a 23 yr old son who lives with his beautiful girlfriend of 4 and a half yrs..The isolation is as hard as the

pain.regardssabi

[Guest guest]

Sabi,

Thank you for the information on the book. I am reading one book about Living with RSD but as you said it is helpful to know as much as you can about this disease. For me it has been very difficult to find a competent doctor and none of the "normal treatments" have worked on me but have only made it much worse. I was supposed to try a rehab but they even said I was too advanced for them to help me. My RSD is full body as I said and is in Stage 3, so more than likely it is irreversible at this point. The next thing my doctor is going to try is a week long hospital stay where they do an IV Drip of Lidocaine and Ketamine. I'm hoping that this will help ease the pain to a manageable level, if not than I don't know what will happen. He mentioned the SCS but we haven't decided on anything with that yet. I actually have an appointment Monday to talk about the hospital treatment. How are you responding to your treatment? Can you explain the visual stuff and the smudging of the brain? Well I hope you are feeling a little bit better and have found some help and support here.

<hugs> Lori

[Guest guest]

Sabi,

I just wrote you an e-mail about treatment...I see you mentioned you were on Ketamine which is the IV I'm supposed to have. What form of Ketamine did you have? Also how would you compare morphine drip and ketamine drip if you had an IV? I'm only asking because I get very ill on the morphine drip so I'm a little worried about the ketamine. As for the outlook when they told you it may never go away, that sadly is true. At the stage I'm in mine will probably never go away, I'm hoping to ease it some.

I have had trouble with my knees for over half of my life. I had my first surgery when I was 16.... probably have had 20 knee surgeries by now. I had my left knee reconstructed in 2002 and it went great. I haven't had any real pain with it until recently due to the RSD. Anyway, I had the same surgery done on my right knee last year and the RSD developed after that. They tried a nerve block on me which caused it to spread throughout my upper body and back..and it had already spread to my feet and now my left leg is hurting as well. I'm having the hardest time dealing with my hands as it makes typing very painful for my job and for here, I can only do a few e-mails at a time. It's also hard because it affects many hobbies...reading, cross stitching, playing the piano...everything I used to do to take my mind off the pain I can't do anymore. It's also hard because I was so close to being out of pain with my knees after 16 years of on and off pain...and then RSD took that away from me. But I try not to dwell on all of that.

I've lost most of my friends in Florida and my family lives far from me, so I am always alone, well my cats are her but that's it..lol. I'm taking Methadone, Oxycontin, Percocet, Neurontin, Flexeril, Lexapro and another drug called Plaquenil for Lupus as I've been diagnosed with that too. If I didn't need my health insurance I would at this point stop working and move back to have help from my family. But I need my insurance so I have to stick it out as long as I can. You sound like me as far as working...you seem like you were a hard worker. Do you live with anyone and are you on disability if they have it there? I really hope that you have people to help you. I've always wanted to go to Australia...is it as nice there as I imagine it to be? Well I've gone on long enough with this novel...lol...I need to take a break for my hands. I'll talk to you soon.

<hugs> Lori

[Guest guest]

Sabi,

I don't know the time difference either...lol...I should try and look it up somewhere. My only fear about the ketamine while undergoing treatment is my doc said it could make me out of my head, hallucinate, etc. I am not getting much family support and fear I will have to go through all of this alone. My one sister who is being helpful is pregnant and will not be able to travel by the time I have the procedure done. And my other fear is afterwards if it does not work, I don't know what else could be done. But I will try to stay calm...as you say, whatever happens is for some reason meant to be.

I work for a wine/spirit distributor. I do all of the pricing for the wines, which is much more detailed than it sounds. I also put together price books for our salespeople with pricing, pictures, ratings, etc...the books are a couple hundred pages and I produce 4 a month. It is time consuming and alot of typing, so it is becoming increasingly difficult to get everything done as my hands and arms hurt so bad. But I'm trying to hang in there and pray this treatment eases my pain even a little bit. Do they have anything there in Australia like a medical transcriptionist? I know here we do and some of them work at home...I think if I remember you worked for a doctor so I don't know if this is something you could look into doing. What are your interests, work or hobbies? Sometimes you can take what you like to do and turn it into a career. As for dating, Mr. Right, etc...I responded in my last e-mail about that, believe me I know exactly how you feel. Anyway, I really must take a break now, I don't know what time you will get this but enjoy the rest of your weekend. Thank you for your support about my appointment, I will let you know how it goes when I get home Monday. Take care my new friend, I'll talk to you soon.

<hugs> Lori

[Guest guest]

Hi everyone ... not the best way to introduce myself....

Have just had a day from hell in rehab.... just cried in pain and feel like Im back in kindergarden.... its just so hard not being on any meds....sometimes I can cope with the pain other times its just so over whelming I just sit there and cry... yes I know getting stressed or upset wont help but Im just so over this ....

I used to have such a good life and feel its all gone...they have told me I may be able to work part time one day in the distant future but they cant give me any guarantees......so my life consists of sleeping when I can... and maybe a visitor once or twice a week.... I have lost my job of 10 yrs and dont think I could get any lower than I feel today... no thats not true Im sure I can slip into the void a bit further....

I see everyone else going about there lives.... and having control.... I cant even control my pain and my mind (depressed if you guys havent noticed)....

Everyday is the same... rehab makes me take stuff home to read and to practice.... like looking at 82 pics and trying to work out which is a rt and which is a lt hand... kindi stuff.... and mirroring.... the newest stuff here in Australia only recently (1 yr ) found out...

For anyone interested.... I have a good book have told lori about it... www.noigroup.com explains all about rsd and crps from experts here down under... ps ::: non gov funded research and is really good at explaining about the pain cycle....stimulation etc..

Anyway just needed to get some crap out of me .... not sorry I have.....am just so frustrated with me and my life.... I never used to complain but it seems to be all I do now..

Hope someone somewhere is pain free today cause if Im in this much pain and someone else isnt free just for today.... god has got some serious explaining to do

sabi

[Guest guest]

Awww, Sabi. It sounds like you're having one of those absolutely awful days. Those kind of days sure make it hard to see that there are days that are relatively decent and fulfilling. When I get into one of those nasty emotional spaces, I try to focus on the fact that while RSD does in fact suck canal water, things could be worse and that I have days that life looks pretty darn good. Awfully hard tho sometimes.Would it help to make a list of things that give you pleasure (and it you find yourself drifting off into garbageland try to just bring your focus back) and then pick one or two of them to do? We're not talking superwoman kind of stuff here.....just some of the simpler things that give you even a little smile inside. I hope that today looks better to you. Barbarasabiha kasar wrote:

Hi everyone ... not the best way to introduce myself....

Have just had a day from hell in rehab.... just cried in pain and feel like Im back in kindergarden.... its just so hard not being on any meds....sometimes I can cope with the pain other times its just so over whelming I just sit there and cry... yes I know getting stressed or upset wont help but Im just so over this ....

I used to have such a good life and feel its all gone...they have told me I may be able to work part time one day in the distant future but they cant give me any guarantees......so my life consists of sleeping when I can... and maybe a visitor once or twice a week.... I have lost my job of 10 yrs and dont think I could get any lower than I feel today... no thats not true Im sure I can slip into the void a bit further....

I see everyone else going about there lives.... and having control.... I cant even control my pain and my mind (depressed if you guys havent noticed)....

Everyday is the same... rehab makes me take stuff home to read and to practice.... like looking at 82 pics and trying to work out which is a rt and which is a lt hand... kindi stuff.... and mirroring.... the newest stuff here in Australia only recently (1 yr ) found out...

For anyone interested.... I have a good book have told lori about it... www.noigroup.com explains all about rsd and crps from experts here down under... ps ::: non gov funded research and is really good at explaining about the pain cycle....stimulation etc..

Anyway just needed to get some crap out of me .... not sorry I have.....am just so frustrated with me and my life.... I never used to complain but it seems to be all I do now..

Hope someone somewhere is pain free today cause if Im in this much pain and someone else isnt free just for today.... god has got some serious explaining to do

sabi

[Guest guest]

Hi Bill,

Welcome! I looked at your photos. Really nice family!

le

Diabetic Type 2 since 1990. Still on oral medications.

[Guest guest]

Welcome welcome to the group Bill..

My name is Angelia and I live in Oregon =) I will sometimes share about my

little farm and life.

Angelia in OR

----- Original Message -----

From: " bill "

>

>

>

> hi every one i am bill and i just posted my pictures i am 57 and

> have had diabetes since 1993 i just started insulin shots now been

> 5 days i am home bound with medical problmes a 100% disabled

> vietnam vet married 33 yrs i look forward to meeting many of you's

> and hope to build friendships i am open to e mails and messenager

> thank you for having me in your group bill aka grandpabill

[Guest guest]

Hello Bill. Welcome.

, also a Viet Nam vet

Charlotte NC

>

>

> hi every one i am bill and i just posted my pictures i am 57 and

> have had diabetes since 1993 i just started insulin shots now been

> 5 days i am home bound with medical problmes a 100% disabled

> vietnam vet married 33 yrs i look forward to meeting many of you's

> and hope to build friendships i am open to e mails and messenager

> thank you for having me in your group bill aka grandpabill

[Guest guest]

Hello everyone I'm Angie. I had my surgery on May 1st 2006,I've lost 45

lbs since. I have been having problem eating, it feels like everything

is getting stuck and i feel like it has to come back up. Has anyone had

this problem? I'm open to any infor on anything that you have to share.

Thanks.

[Guest guest]

Angie,

WELCOME to the group!!!!!!!! I would call your doctor. It could be

a number of things to eatting too much too fast to a stricture. Call

his/her office tomorrow and see what they say.

Hugs!!

>

> Hello everyone I'm Angie. I had my surgery on May 1st 2006,I've

lost 45

> lbs since. I have been having problem eating, it feels like

everything

> is getting stuck and i feel like it has to come back up. Has anyone

had

> this problem? I'm open to any infor on anything that you have to

share.

> Thanks.

>

[Guest guest]

I have found the same thing about food getting stuck and I had my surgery on

Mayth, 2006. I find now that I can only eat minute small pieces of food and then

I still have to chew them. I cannot drink quickly because it will become stuck.

I take a small sip let that go down and then I drink some more. For me the key

to food not getting stuck is to eat slowly and in very small pieces. Just take

your time.

new member

Hello everyone I'm Angie. I had my surgery on May 1st 2006,I've lost 45

lbs since. I have been having problem eating, it feels like everything

is getting stuck and i feel like it has to come back up. Has anyone had

this problem? I'm open to any infor on anything that you have to share.

Thanks.

[Guest guest]

Welcome Angie,

I am pre-op so I can't help, but wanted to say hi. I hope things work

out for you.

in Bristol, IN

Pre-op

Surgery date 08/08/06

[Guest guest]

Welcome to the group Mystic. I was self-pay too. I opted to go to

Mexico. It was much cheaper for me. The level of car was great! :-) I

would do it all over again in a heartbeat! Try looking at

www.obesityhelp.com. There are a lot of doctors listed there & it has

patient reviews. You might find a surgeon in the area you're looking in.

mysticpwr wrote:

> Hi Everyone,

>

> So excited to have found this group!

>

> I am shopping for a doctor to do the lap band and I have been approved

> to have the surgery at Coastal Obesity Center in Orange, CA but I am

> looking around for recommendations. The cost is coming out of my

> pocket, cash and it is so expensive. Humana declined my request...of

> course! lol

>

> I am here looking for any recommendations in the states of CA, WA, &

> OR and I am excited to get to know people.

>

> Hugs,

> mysticpwr

>

>

>

[Guest guest]

Hi Mystic,

Welcome to the group, nice to meet you. Look forward to sharing this

journey with you.

Shauna

343/83/260

mysticpwr wrote:

Hi Everyone,

So excited to have found this group!

I am shopping for a doctor to do the lap band and I have been approved

to have the surgery at Coastal Obesity Center in Orange, CA but I am

looking around for recommendations. The cost is coming out of my

pocket, cash and it is so expensive. Humana declined my request...of

course! lol

I am here looking for any recommendations in the states of CA, WA, &

OR and I am excited to get to know people.

Hugs,

mysticpwr

__________________________________________________

[Guest guest]

I think someone answered this for you, but I would look at your policy and call

your insurance company and make them dig for the information. Talk to a

supervisor or something. Don't give up! Remind them that it will cost them more

if you stay at this weight in hospital bills then it will if you have the

surgery!

Best Wishes,

Shauna

mysticpwr wrote:

Hi April,

Humana initally said that they would cover it but when the clinic

submitted my application they said that my policy excluds this type of

surgery and they made a mistake. I was so upset and since then I have

gained 20- 25 more pounds. Maybe I should go back to the clinic and

have them try again with Humana? Someone mentioned Mexico and an

option...

mysticpwr

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

__________________________________________________

[Guest guest]

I know what you mean Shauna. Normally, sitting here alone & bored I

would be snacking away! The thought hasn't even crossed my mind! And

it feels great! :-) It's like a hand that was holding me back has let

go!!!

We went out of town the week before I started my pre-op diet. I had all

my favorites! :-) My last meal was chicken wings & bacon cheese

fries! LOL And a mudslide for dessert.

1 week post-op

380/354/160

Shauna Thalman wrote:

> I was actually looking forward to not eating. I was sick of food and it's

effect on my life. It has taken some time to change my habits and my mental

habits of wanting to run to food... But you know, I don't miss too many things

at all. I wanted this change so badly... I was not in fear of loosing my worst

enemy! Once you start feeling the difference you will feel better and will not

miss it as much as you think. You have to take care of yourself mentally as you

are physically. It really does go hand in hand. It is sooo worth it. I

absolutely LOVE that I do not eat NEARLY as much as I used to and I am actually

getting more done because I am not spending so much time and thought on " food " .

I have to admit that I SAVORED that T-Bone Steak I ate as my last meal. Yet, I

was happy when I was done to know that it was going to be a VERY long time

before I could ever eat that much again!

>

> Best Wishes,

>

> Shauna

>

>

>

>