What do I know? Nothing at all...
 

I have just recently diagnosed with RSD, 6 months after my injury. And, by all measures, that I have read about, my RSD is starting to spread. The injury began in my right shoulder, and is now effecting my right bicep area, elbow, both sides of my neck, and, just recently, my lower back (which wakes me up in the middle of the night, in tears, because it feel not only stiff, but stuck).

I am seeing an RSD specialist/pain management specialist early next week. Presently, I am taking low doses of Hydrocodone and Neurontin (which, on a good day, puts my pain at a level 6). Which, to me, has become normal...

my questions is/are...are gangleon blocks painful? What does this involve? Also, I have read how this disease affects the limbic system, which is in charge of many things, but namely memory and emotions. I take Adderall everyday for my ADHD which works, in conjunction with the limbic system to sustain a chemical balance to allow me to focus, concentrate, regulates my moods, etc. Does anyone know if this disease would or could affect the effeciency of my Adderall? It doesn't seem to be working "right"..

any ideas/answers/feedback would be so greatly appreciated and put my mind at ease a little in having the answer(s) (whether good or bad)

Hi there,
I am so sorry about what you are going through ((hugs))
Please let me introduce myself:
My name is Alison, I am 12 years old and I suffer from RSD in my left leg and right arm. I first developed RSD in my leg on the 16th March 2007 after an ankle sprain. After 4 months of physiotherapists telling me to stop imagining the pain, I was diagnosed with RSD, I felt as though my life had just ended. Immediatley after diagnosis my PM doctor performed a "Guanethidine nerve block", which caused me to lose my balance (I can't walk my leg shoots out in front of me)
2 months later my PM doctor prescribed me "Amitriptyline" to try and help me sleep but I suffered from a nasty side effect of "blurred vision", this resulted in a knock to my right arm. My arm began to swell, I got the burning pain, colour changes etc. 2 weeks later, I was diagnosed with RSD in my arm. The RSD in my arm has been into remission, but the RSD keeps flaring up when the weather is cold etc.

I hope this link helps you:
http://www.rsdrx.com/rsdpuz4.0/puz_105.htm

If I can help you in any way please let me know
Thanks

They don't hurt...
 

J Crew...

You are under local anesthetic when they perform the Stellate Ganglion Block. They have to sit you upright and they use a fluoroscopy guide, like an ultrasound, to see exactly where they need to insert the needle into your neck area.

The pain is very minimal...You wake up with a tiny bandaid like you just had a shot:p.

I would suggest getting in contact with your Dr. ASAP, because it sounds like yours is spreading quick like mine did. He should see you sooner. If he is an RSD specialist, he should understand.

Hope this helps!

Heather

so, they (they being the doctors) have to put you under in order to do a block? Scary, but almost a relief too. After having had, previously, an arthrogram and NVS test done (involving multiple needles of course), it would be nice to be "under" to have any more needles involved in treatment.

so, it's normal for RSD to "spread"? Is this spreading a sign that the RSD is getting worse? Does that then make it more difficult to treat or decrease my chances of remission of any kind?

Here is an article for you...
 

To Heather
 

Thanks for the article, it was very informative...it takes away some of that fear of the unknown really. I greatly appreciate it. Of all the meds that you are taking, does that mean that you are "pain free", or that there is just a great reduction in your overall pain? Are these meds you will have to take for the rest of your life? How did you develop RSD? How do you afford to pay for these medications. Sorry if I am being intrusive, I am just trying to comprehend all that I can.

Ask away, I don't mind at all...
 

I got RSD from a broken foot. A large guy stepped on my foot at an Angel game in CA and instead of taking 8 weeks to heal, it took 30 weeks. It was just devastation from there.

You know, I don't know what the future holds. I am definitely not "pain free". And I am not sure what drugs I will have to take in the future. I hope to beat this RSD crap all together.

Right now, the meds and the blocks work best for me and they allow me to function. I am permanently disabled and I am on Social Security Disabilty and paying COBRA Ins from my last employer. But, I lucked out because I had a PPO through Cigna and long-term disability. So, I made out okay. Not to say that I don't wish I still had my job...I guess I kinda do with my little one...That's practically full-time...

ONE DAY AT A TIME!

:hug:
Heather

To Heather
 

Again, thank you for sharing. It, at this point in time, is so crucial for me to reach out to others for support, gain more understanding, and be prepared for good and or bad outcomes, but have the honest truth about both sides.
I, right now, am unable to work, am receiving TTD benefits (not a whole lot of money there as I am sure you know), and just sitting, in wait, for worker's comp. to re-approve my physical therapy and approve seeing the RSD specialist/pain med doctor. In the meantime, I am stuck at home all day long,
while everyone else works, watching the seasons as I am a bystander to life..just sort of watching through the window watching it all happen. And, the days can be very long during those horrible pain days. This forum is a wonderful outlet. It makes the loneliness smaller in commradery (sp). So, I thank you for sharing; truly.

What would you rate your pain at, on a scale from 1-10, on an average day?
Are you able to do all, or most of the activities that you did before this injury?

7
 

I am at an 7 on average! Today is a good day and I am about a 6...Yesterday I was about a 9. It all depends...

My husband just sold my snowboard and waterski on Ebay a couple days ago. I used to be so athletic. I can't do nearly haly of what I used to. But, I am determined to not give up! Once you give up, what's left?;)

My pain just started returning. I was in a remission for 9 months while pregnant. I guess 90% of RSDers that get pregnant go into remission, but soon after delivery the hormones return to normal and the pain returns with a vengeance. So, technically I just gave birth 7 weeks ago and the body take 6 months to return to normal. So, my pain should keep increasing if it goes by the books....I am prepared...BRING IT! lol

I am sorry that you are in that situation right now. I would start and apply for SSI (Social Security Insurance). It's for low-income. Check it out and other options on www.socialsecurity.gov

Good Luck Hun!

:winky:
Heather

Welcome!
 

Welcome, I'm sure this board will help a great deal as you learn about the many symptoms that can change from day to day.

My pain level is usually a steady 4 or 5 but can peak to 7 or 8. I've had flair ups off the chart, once full body.

Mine started after attempting to donate blood in September of 06. Since then, it's been many doctors, many therapy sessions and now 1200mg a day.

It started in my left elbow joint, swelling up and down my arm, bicep was on fire etc. Shoulder and neck soon became effected. In recent months it has been in my lips and strong tingly feeling in my teeth. During a full body flair up it even effected my eyes and scalp. (Luckily that lasted only 4 long days)Now it is in evident on both my hands. Typing, grasping anything causes my fingers to fill with blood and swell. Painful to flex etc. Burning when cold (constant). My knee also...my lower legs swell and are discolored and shiny with very little hair growth. This certainly has spread for me!!!!!!


I, like you, am somewhat nervous about getting my first SGB done. however I know it's something that could potentially help and I'd try anything at this point.

It has been a long road for me already and I hope yours goes much smoother than mine has!!!!!

I am still able to work 12 hour days. Luckily, both my jobs are desk jobs which are mild paced and I have VERY supportive employers. But I can see on my worst days how it would be prudent to stay home!!! Then again...when I'm idle, I seem to notice the pain more. Like in the evening, I'm sure everyone here notices it more at bedtime! (Right?)

Also like you I am currently taking ADD medications to help with my lack of concentration. They do help for me! Concerta 25mg twice a day. I've done some research to see if it has contributed anything to my disease...so far I have found no other cases. It does help with the lack of concentration which I noticed more last winter when my symptoms started to appear.

Also, the Concerta has helped to keep my brain active during the day inspite of many insomniatic nights!!!!!!!! I have to force myself to eat as well...which is always nice, as I've always been a slave to food! When I do eat, I make my food count more...more greens and fresh fruits. I've recently been a fan of vegetable and fruit smoothies. (100% organic) to intake more antioxidants.

I went to the Bodies Exhibit this weekend which had live human specimens. Now, going through all this I'm curious about the body and functions! That has pretty much put me off any kind of meat...so I think I'm a vegetarian again. LOL:p

I've learned so much joining this forum, everyone here has been so helpful and it's such a comfort to be able to communicate with other people who are experiencing the same things!

Welcome, sorry you have to be here...but you have found the right place at least! Anything I can do...please let me know. :hug:

can't lie
 

I can't lie, after reading what the two of your wrote, it breaks my heart to hear that you can't do half of what you used to do, or, how the pain can take over and rule things so much. I, too, used to be athletic...in the beginning of this injury, the hardest emotional component was losing part of my identity in a sense. I was the girl, in college, who went to school on scholarship, played soccer, and was Player of the Year. I was the girl who played basketball, everyday, with the kids I took care of and mentored at work, i was the girl who lifted weights everyday and had defined arms. All those parts, I came to realize, were wrapped up in and with my identity. It was a grieving process until I came to accept it.

But, it is hard to hear that RSD can continue to, even with understanding employers, and tons of medication, take more and more from you. I completely understand having to have emotional strength and equilbrium; that is the one thing I feel I have control over and refuse to surrender it to RSD or anyone/anything else. I only wish for you guys, for myself, for everyone, that, with medication, RSD wouldn't have the power, the wrath that it seems to have, to continue to control and dictate so many limitations in everyday life.

It's okay
 

I'm so sorry Hun....

You'll have bad days, feeling like you've lost so much. You have...you've had to make a complete unwelcomed lifestyle change. I'm so sorry your body has turned on you and you're not able to do the things you so much enjoyed. Maybe exercises in moderation after your SGB will help uplift your spirits? I'm praying for you.

Having the attitude that you are going to beat RSD is the right approach, however it's okay when some days are not possible.

Today I'm a bit weepy, sometimes throughout the day I think of all the things that have changed as well and how this disease has effected so many things in my life. The joy in every day things is somehow interrupted by pain. The energy I have to dig down deep to get just to continue on with EVERYTHING!
Even to smile, carry a conversation or focus on what someone is saying...it's debilitating. And not being obvious about your pain because you don't want to bring other people down is such a struggle and a new technique I have learned as well!!!!!!!!

I have two teens and a 7 year old, I have to still be mom and even that's difficult when you think of all that entails! But I have to be MOM and my body will just have to understand! (Sometimes)

Waking up in the morning with that stuck back as well...I can't remember the last time I arrived on time at work!:mad:

And my poor husbandl...I'm not the flexible LoveMuffin I once was...that's all I'm going to say about that!!!!!!!!!:rolleyes:

I hope the SGB helps for you!

I know you found this forum because you were googling for hours on end trying to find some understanding, people who can relate. You've definitely found it...you're not suffering alone I promise.

On your down days, please post for support, there are so many wonderful people here that are eager to share your sorrow and at times even uplift them with hope.

Please keep us posted on everything! I hope you have peaceful dreams tonight.

:hug:

welcome..
 

Hello JC Rockstar Welcome.
I like your attitude :)
An 'attitude' is a powerful tool that we each have, possibly the most benificial tool in each of our own personal toolkits.

'Patience' is another one, learn to pace everything you do so that in the end you can acomplish more with less pain later, be patient with your body and learn your limits try to slowly better your limits. and know when it's time to have the patience to rest so'as not to go into flare up. Be good to yourself.

'Stubornness' is a very good tool as well, we can use our stuborness to continue to use our limbs as normaly as possible, to exercise and keep our joints from locking up with dystonia. 'stubornness' and 'attitude' are also good tools that we can use to help ourselves to never become too complacent with what we think is all we've got.

There are more tools in our personal kits many infact, it is up to us each to use what we already have inside us and that is our personal tools when things are real bad or you can't think of how you are gonna be able to deal with a situation that you find yourself in..
Then just look to your toolkit, and of cource your new friends here at NT, my name is Sandra welcome.
:hug:

to sandra and greyhoundlover
 

thank you both for opening up and sharing feelings so honestly. Greyhoundlover, you were so right about me googling for forever trying to find some way, some place, to be able to vent my feeling to those who understand, ask questions of others who have had to suffer from RSD; we learn so much from listening to others and their own personal experiences. BUt, needless to say, I am appreciative to the both your for being so honest and open. IT certainly makes me feel less alone in what I am going through, and, it's so very validating to hear that others, too, have experienced what I am experiencing now.

I feel like, after my initial injury, and all the months following, like my life was the trunk of a tree (to use an analogy). There was the losing of job being one branch on the tree, financial stress being another branch, loss of ability to do many things I enjoyed being another, pain being another, friends that don't understand being another branch, so on and so forth, until, there' this huge tree with so many different branches and circumstances/emotions wrapped up or attached to them. but, thus far, if I have learned nothing else, I learned, and am continuing to learn, how to put things on the shelf in my mind and pull them out only when I need them and they are on the day's agenda. One thing at a time, as well as one day at a time. If I sat down, on my couch, whether I was having a good pain day, or a bad pain day, and really thought about alll the circumstances, emtions, and limitations, in my life, I would lose my sanity and soul. And again, of all the many things I may have no control over, my emotional well being is not one of those things. I can fight, fight, fight, with my emotional endurance and blind faith that things will get better in time. IF I take it one thing at a time, one day at a time, things seem a lot less overwhelming.

Greyhoundlover, I have to give you props for managing this disease with a child and husband involved in the picture. I know, though engaged, but, not with child, how difficult that must be. I give you credit, as I hope you, too, give yourslef credit, for your ability, from what you wrote, to take care of your child, husband, and the fourth party living with yoiu (your pain), all at the same time..plus, with your working such long hours. I hope that you are givng yourself a pat on the back for managing all those things. YOu must be a pretty emotionally strong woman yourself.

I totally understand...
 

JCrew...

I was so where you were. I went to Nationals for swimming and was my high schools top swimmer. I was the only girl on the guys water polo team and I played soccer for 10 years. I snowboarded every winter season and I waterskiied every summer since I was 5, at our house at the Lake. That was all taken away from me. I was so scared of this RSD when I 1st was told I had it. Well, when I started researching it. I felt so isolated, so misunderstood, and so angry...

It's a long and tough road, but I have become a STRONGER person inside from it. I know you probably don't want to hear that, but I truely feel that.

Everyday that I wake up I tell myself that I am going to beat this thing. I seriously believe that we will!

Anyways, I am always here for you!

:hug:
Heather

Yes Stubborness!
 

Great way to put it Sandra! Stubborness is a great personaility trait to have with this or any chronic pain!

Rocker,

I like how you have used the tree analogy...a very fitting analogy for the way this disease and coping reflects on different branches in our lives.

If you drew a picture of your tree and wrote all of these dealings/difficulties and changes on each branch and found a way to get through each one maybe that would help you. What if you drew leaves for everything you were able to overcome, accept and ways to deal?

For instance, you said one branch was for your FRIENDS WHO DON'T UNDERSTAND...You could now draw a leave off your branch which includes the fact that you have recently found new friends who do understand. (Here) That's one leave, you have found a way to [B]DEAL with people who do and overcome!! [B] (Maybe two leaves)

Another leave can be for ACCEPTANCE of the lack of underatanding of your friends. No matter how much someone loves you, a spouse, parent, friends...they can never compeltely understand, even if they sympathise and want to know. They will just never know. They, themselves, may have a problem accepting the changes in you as well. Once you were strong and energenic and now scream inside from pain...Accepting that I am different from before and may have less in common with certain people is something I have personally come to accept.

For those friends who don't believe your pain is real, I would not consider friends. (Luckily I don't have any of that going on so that's all I can offer)

If you did this and see your branch sprouting leaves as you cope and deal with these issues, maybe it would be theraputic. I do this in my head, but I don't use the tree anaolgy. I just face so many challenges but find ways to work through them. You can too...I have faith in you.

I bet if we were all to draw up tree we'd be surprised at how strong we really are! Maybe we'll see we have things to work on as well.

Thank you for giving me so much credit for trying to strum along inspite of my pain. I actually have 3 kids, two teens, one 7 year old, husband and two Greyhound dogs. I'm very busy...but I think it keeps me going. Thank you for all the kind words, I do pat myself on the back for trying. But I also give everyone else a pat on the back, like yourself, who do all you can to keep your head up every day, post messages and learn as much in order to help the others here.

Love to all!:grouphug:

Hi JCrew,

Pleased to meet you:)
Just thought it would be nice to tell you that for everyone one of us on this site with RSD/CRPS there are many more who aren't . This is often because they have had treatment that has rendered their disease to something managable enough to maintain their lives fairly well.
The statistics are still at 50% get better---these are not the ones you generally see online. I hope that what you read does not fill you with doom and gloom and that you will find this is something that does not have to rule your life.
I do wish you well but hope you can get some really timely treatment with blocks and Physiotherapy(by someone who knows about RSD)

All my good wishes to you
Love Tayla:hug::hug::hug:

thanks again
 

Heather, Greyhound, and everyone else, thank you so much for the support, and just the knowledge that comes to me through your experiences. Deciding to check out a forum, and get involved in discussing the reality of this, in an uncensored way, with others "in the same boat", would make anyone very much less alone.

It is very much like a tree with so many different branches..definately of our emotional selves and the spectrum of emotions that come with the prize of RSD. Thus far, and I know you all that dealt with this, and know this pain better than I do, what I have learned is this:

1. Not only do you have to take it one day at a time, verses getting caught up in statistics about success rates, whether you will work, medicaid, SSI, worker's comp and when they will cut you off, everything that so many of us happening in our complicated world that we live in, WE HAVE TO TAKE IT AS IT COMES. It's sort of like getting dealt 50 cards that all have different things written on then (like all the factors listed above and then some, and, of course pain), and flipping the cards over, reading what they say, and having one stack for the things that you can control, and another stack for the things you can. What you can control, then, by god, take the bull by the horns and take all open avenues to change what you want to change and are able to change. As for that huge stack of cards that you can't control, you put them in a box of storage in your mind and deal with them when it;s time. Otherwise, forget about their existance. It's a trap to get caught up in things you have NO CONTROL OVER. Plus, just even condensing RSD down into one thing, the most pressing thing, presenting itself, at the moment, makes it "not so big" in your perception and easier to handle.

2. THough when i was initially injured, and I went through the body image issues of losing muscle I had worked so hard, for so long, to have, and watch it go away day by day, yes, there was a grieving process. And, I don't feel bad for embracing that change, grieving that loss, processing it through tears, but realizing, time and time again, I don't have to like all the RSD has taken from me, but I have to accept it. Realizing I didn't have to like what I accepted made things easier to handle in my mind. It both validated my feelings, but, respected the limitations put on my body.

3. You have to find "god in simplicity" (of course, not technically referring to god), but find happiness and beauty in all the smallest of things around you everyday and never forget, even when you are angry and in pain, the gratitude that you have for different people, places, or things. I do journal everyday and it helps me, through making myself write about gratitude for those in my corner of the world.

4. For me, too, last lesson learned this far....have not only a willingness and proactive approach/obligation to reach out to others, and do a lot of educating and expaining, is very important. I am not good at doing this, as pride stands in the way a lot, and I want, desperately, to put up the facade that all is well for others sake (knowing I am two seconds from cying out in pain). Also, having other outlets, be it private or public, is quite important too. Luckily for me, prior to this injury, my hobbies, outside of athletics, were. and still are journaling, writing poetry, and photography. And, guess what, RSD has been unable to take those things from me. And, sometimes, just producing something creative, on a daily basis, does fill some emotional need to contribute; to have accomplished something tangible and productive with my time.

Don't, please, interpret anything I have said as me being a know-it-all. In the general scheme of things, in reference to RSD, admittingly, I know nothing. All that i do know, concretely, for myself, is what i have written above from my own vantage point at this given place and time. I am sure it will continue to be an adjustment and learning process all along the way;everyday. But, know this, I am keeping my head up. No one can have my spirit; not even RSD.

Nicely Said!
 

I see a big change in your attitude. Seems like you have dug deep on this one. I think you made perfect sense to me. I like the way you wrote about the cards. It's very true!

Just keep your head up and don't let anyone tell you "It's All in your Head"! Don't let any Dr's tell you that it's not possible for what you are going through, etc. Expect to have a tough road and you will be prepared for the obstacles.

Take Care Hun,
:hug:
Heather

to Heather
 

thank you for the compliment, it means a lot. sure, i, as well as you, and everyone else, are going to have good and bad days, and hell, some right in the middle. and, all i said is much easier to say when i am having a good day. but, still, i don't mean it any less when i have a bad one. i want to preserve the essence of who i am, have as much normalcy in my life as possible, be a participant in life as much as possible, and let RSD take away as little as possible. my girlfriend, who is the most loyal, consistent, loving, and kind person i know, who has wiped away the tears everytime i have cried, and been to every doctor's visit with me, always calls me a "soldier." she always tells me, even when I am having a "9" day, and crying all day and evening long, and exhausted from pain and crying, that she sees the strength in me and how hard i am "fighting." (which, of course, is very encouraging and rebuilds my faith at the same time). So, if I have to be a soldier I will, but I refuse to go down without a fight!

You are a TRUE ROcK StAR...
 

That's what kept me going and that's why I married Bryan. We met when I first broke my foot. He hasn't known the athletic, clubbing, do anything, Heather. He fell in love with me for who I was. My pain has gotten worse every day. After a week of dating he was taking me to my blocks....I was having 3 a week for 4 months straight...Imagine that! He can't stand hospitals, if he sees a needle he passes out. But, this guy waited all by himself for a girl he barely knew will some disease that could destroy her. He took my heart then and will always have it. Now we are married and have a beautiful baby girl named Skyler Alexis and life couldn't get much better, besides the RSD. He has accepted it as part of our life. Since it has been in OUR lives since we met.

They keep me going...I look into their eyes and realize how important they are to me and all the joy and tears of happiness they have given me. Just remember that.

Your GF sounds like a RAD chick...You are lucky to not be alone. I almost was, But Bry came along right at the right time. Ahhhh, I love him!

So, no matter how crappy things get, look to YOUR higher power and grab your GF and surrender. Let your HP handle it for you. Just say that "Today I cannot handle this and I am going to give it all to you"....Watch what happens!

You probably think I am a whacko, but I have been through a lot of stuff in my 27 years...So, use it or don't. Just telling you what works for me and what has worked for others.

PC girl,
:hug:
Heather

Keeping our chins up!
 

Rocker,
I am so impressed by your outlook on things. Truly you have a great attitude and determination to face this head on and still try to live as much as you're able. To be so determined to enjoy things is such a strength to have. I think your perspective on things is very uplifting. I'm so glad you're writing as well...I enjoy reading your posts, I can tell you have a gift with words and expressing yourself.

I agree with Tayla...sometimes hope can be lost because usually people who post here are suffering. I have seen posts and read elsewhere of people recovering or at least experiencing long remission periods. I'm so glad you brought that up Tayla! It's important to strive for these goals while accepting day by day the changes we've had to make and dealing in a way where we can still live.

We should also realize that there are people out there who can not, under any circumstance, continue on with life because of off the chart pain. I think of these people constantly; they truly break my heart. For those of us who still have some fight in us...it's very important to spread the word not only for ourselves but for those who are not able to. I can't help but to wonder if maybe that's part of why we're here, to understand the pain and to help spread the word...I would like to think there is some reason we are here. (For my own spiritual benefits at least)

I'm not an expert either...this is all new to me as well. I had a feeling I had this before I was diagnosed by a doctor. It took months to find someone who was able to pinpoint a reason for my ailments. I was told several times by numerous Specialists..."There's obviously something wrong, but I don't know what it is". Unfortunately my suspicions were correct...I have this horrible thing!!!!!!!:( It took a little whle after the diagnoses to come to terms with it and to accept it. It was like being given a Life Sentence for something I knew I was innocent of doing!

Now I think in previous struggles in life that I have had strength through, there have been many. I think of the determination it took to make myself an independent woman.

I broke free from an abusive marriage, and started a new life with my two toddlers. (Not easy to do at all!) I got my drivers license and found a respectible but low paying job. (No previous experience) I had to pay for Day Care (for two), I was the only one responsible to care for them while they were sick while trying to hold down a job. All this while finding my own identity which had been lost through years of physical and mental abuse. Through that experience I found I'm a fighter!!!!!! I fought for my children so I could give them a better childhood. I fought like hell to give us a future together that we could share in peace.

I'm fighting, once again, after re-gaining so much... only this time it's against something I can't just walk away from. I have to walk with it and build up courage to fight against it daily. (Sometimes courage is difficult to find on certain days)

I see you have this drive too Rocker!!!

Luckily, like you, I have support this time. I'm married again, but this time to a wonderful man who has given me my third child. I've not only found support through him, but through my treasured family, friends, co-workers and people I have encountered here. People in my life give me what they are able to give me through these difficult times. Again, they will never truly understand, however, the fact that they try is comforting and I'm truly lucky in that regards. I can blaime myself for people not understanding more or being conscieous of my disease at all times. Also like you...my pride prevents me from displaying my frailties. People forget what's going on with me...I think though...I'd prefer it that way when possible. It's like holding on to my identity in a way...I've changed so much and I can accept this, but I'm trying desperately to not let it go completely. Maybe it's that stubburness Sadra has mentioned!!!!!!:D

Heather, it's so impressive you have carried on through this and even had a baby. That's such a brave and optimistic approach to this. Cheers!

My mentor has been Sandel (Sandra) through all of this, she's been very uplifting and educational. Really read what she posts because the information she has shared with me has helped and had given me some great days.

While we still have fight inside of us...we can hopefully reach more painless days. For those who can't...I'll fight for you as best as I can.

You know, I aways come on here thinking I'm going to post something short and quick, but inspite of my freezing cold swollen fingers they still have a lot of energy in them. (SORRY)

Love to all...

GHL

Heather And Greyhound
 

Heather,

It really sounds like Bryan was almost, and, please forgive me as I am a believer in this, put in your life for a reason. It is so incredible, as you put it, that he went to the hospital, repeatedly, with someone that he barely knew; it sounds like he has a tremendous heart with great depths. And, as Greyhound said, you should be quite proud of yourself for battling through all this is, even with the support of your husband and others, but still making it a prioriity, because of how much you love your child, to be, truly a mother to her. Believe me, after 7 years at various psychiatric hospitals and group homes for girls and boys, there are PLENTY of HEALTHY mothers that don't even make their children a priority. But, you have to battle some major obsticles, on any given day, not only to combat the pain, but, to be a wife, and be a mother. And, it sounds like, minus, I am sure, the pain days that swallow you whole and you have no chance at beating it, that it's difficult to fully enjoy your family life as you would like to, with RSD, but, GREATLY admire, as you are a mother, a mentor to your little one, that you, desipite the pain, keep battling it, and still manage to be a great mother and wife. I am in awe of it really. Heather, too, it's funny that you mention turning to my gf or my higher power on those days when it reaches like that 8-9, and steadily rising levels. Ironically, I started doing that very thing way before this disagnosis, way before I knew what I was suffering from; I'd say back in late AUgust of last year. My gf, Cindy, when i just had what she calls"that pain look in my eye", as I inwardly fighting breaking down and screaming/cryng anyway, make me come inside, with a pillow on her life, her hands rubbing my back, and with the most gentle words that you have ever heard, encouranging me to let it out, scream if I have to, but realease all that I was holding in. And, being that she is "my safe place", she made it much easier to do that. It was difficult for me to allow her to see me that way, so vulnerable, in so much pain, but I surrendered to her love, her being my safe place, and her being willing to help. I do rememeber, however, during those same times, when I was there, crying and screaming out in pain, on Cindy's lap, that, I too, was talking aloud, to god, begging and pleading with him for help and surrender. I am sure we all have various terms that we use to deseribe what our pain feels like when it is off the charts on the pain scale,
but, despite the actual adjectives one could use to desrcibe the pain itself, I always felt, on the darkest of days, like the pain was "bigger than my body could handle." I used to desribe it that way a lot. Anyway, got slightly off topic, but, Heather, thank you for the advise and, again for the willingness to share your experiences. You are very brave, very much a soldier, and a fighter yourself; with, what sounds like an angel for husband! :)

GREYHOUND,
Thank you for sharing your experiences as well. Did you have RSD when you were getting divorced, with your two young kids? God, I hope not. That would be inconceivable to have to go through all that, especially with two young ones as well (be that, of course, stress is a major trigger for making RSD "flare" up or act up). I am very glad to hear that you left a situatation that was not good emotional for you, and then, in turn for your kids. And, in actuality, leaving, while the kids were toddlers, is even better, as they likely will have no memories of what disrespect your ex threw at you mentally and or physically everyday. God for you for having the courage to, number one, leave a barren marraige that was unhealthy and you weren't getting your needs met. Sometimes, choas can be "familiar chaos" and such an easy place to be trapped in/comfortbale with. It may be chaotic, the other person may emotionally abuse you or otherwise, but your know the other person well, they know you, and even if it's chaotic, you know what to expect. I am not condoning toxic relationships of course, just merely acknowledging the strength it takes to leave one; including myself, as I have been no exception to the rule along the highway of life myself. I admire the fight that you had in you to draw up the courage over time to leave a toxic relationship, while having to worry about the emotional and financial stability of the two young toddlers, the determination to find a job and make your new situation work. You, too, better pat yourself on the back for what a truely brave, courageous, hard-working, independent woman you are. I greatly admire that.
Though you have spoken minimally about your new husband, I am assuming that he is vastly different than the ex. I still admire your having three kids, your husband, and RSD all as roommates and all things that have to have time, love, and respect depovoted to them. Oh yeah, and you are working 12 hour days too. YOu are incredible emotionally strong. WOw, honestly, I am in awe. You set a wonderful example, through your perserverence, through your examples, and attitudes, that we all can follow. i am proud of you, so , dammit, you should be proud of you too.

Maybe the commonality that links us all is that we all are, in a sense, "soldiers"...battling little battles, or big wars, everyday, within and outside of ourselves. But, I think the best, strongest, best weapon, to take into battle is strong/stubborn will and the refusal to surrender (kind of like a Samari warrior). Whatever the case, lets all keep on keepin' on.

Just 2 Clarify
 

i realized, in re-reading...i need to make an IMPORTANT CORRECTION...I wasn't AT psychiatric hospitals, I WORKED AT psychiatric hosptails/facilities!

FOR STRONG WOMAN (especially Heather and Greyhound)
 

this is one of my favorite poems of all time...gonna include some excerpts...hopefully you can, as I have, draw some strength from it, even on the not-so-good-days..so here you go (author is Marge Piercey)
__________________________________________

FOR STRONG WOMEN (by Marge Piercey)

A strong woman is always straining.
A strong woman is a woman at work,
who talks about how she doesn't mind crying,
it opens up the ducts in her eyes, and she
keeps on going, working hard,
while shoveling through pain with
tears in her nose.

A strong woman is determined to do
something others are determied
cannot be done. She is pushing up
on the bottom of lead coffin. She is
trying to raise the manhole cover with
her headm she is trying to butt her head
through a steel wall. Her head hurts,

A strong woman is bleeding inside. A
strong woman is making herself strong
every morning while her back throbs.
Every part of her body and story
is a battle scar. A strong woman is
a mass of scar tissue that aches
and bleeds, when it rains
and wounds that bleed when you
bump them and memories that get up
in the night and pace in boots to and fro.

A strong woman is a woman who craves love
like oxygen or turns blue choking.
A strong woman is a woman who loves
strongly, and weeps strongly, and is strongly
terrified and has strong needs. A strong woman
is strong in words, in action, in connection,
in feeling; stength is not in her, but she enacts
it as the winds fill a sail.

What comforts her is other loving
her equally for her strength and for her
weaknesses from which it issues
lightening from a cloud. Lightening stuns.
In rain, the clouds disperse. Strong is
what we make each other. Until we are strong
together, a strong woman is a woman
strongly afraid.

Hi
Thanks for the poem, I think everyone is strong when it comes to dealing with RSD.

GreyHoundLover and JcrewRockStaR!
 

GreyHoundLover,
Thanks for your kind words...We planned on getting pregnant before we were even married because my RSD had just gone full-body and I was afraid we wouldn't be able to have kids. I got pregnant in 4 months of trying and had to stay on the Fentanyl Patch 75mcg/hr..luckily I went into a slight remission from 6 weeks - 30 weeks. My first flare-up wasn't until 1 month postpartum (2 weeks ago)...I guess your body takes about 6 months to return its hormone levels to normal. So, since I had just gotten full-body, I simply forgot the really bad days. They are slowly returning. We had our ANGEL...My husband and I don't think I could go through another pregnancy with RSD.

I am going through a tough time right now. I am dealing with a million meds, home alone all day with Sky, lil bit of postpartum depression, and not knowing what to expect with my pain in the next couple months.

Did you have your kids with RSD? BTW, you are an inspiration to me. To take care of one baby is enough. I couldn't imagine being a single mom with two toddlers. You are incredible! And to make it through a nasty divorce, I couldn't imagine...you must be a "ROCK"!


JcrewRockStar,

Much Thanks to you also! I loved the Poem! My favorite insert:
"A strong woman is a woman who loves
strongly, and weeps strongly, and is strongly
terrified and has strong needs."

So, I called Bryan at work and I told him that he was my ANGEL and he said, "I know"! lol..:p

You make me feel so good with all of your compliments. I was having a pretty down morning and you brought me right back up. :wink:

I Love you both already very much...you will both always hold a place in my heart!
:grouphug:
Heather

heather
 

I think it's great that you called your husband at work to tell him he was an angel. Sometimes, we just have to remember to, make every effort to, show gratitude through our words, or the small things we may be able to do, to those who stand by our side without fail...sort of, as you put it, "an angel."
Going through what we already have to go through is tough enough, but, I know, personally, for me, my gf is my "safe place" and that she is more medicating, in her mere presence than any inject or pill has ever been. My heart goes out to anyone who has to go it alone.

JCrew...
 

Bry is my "safe place" also. It seems like my pain is always higher when he isn't home. But, the second he walks in the door I feel a sudden lift of pressure...it's very cool!

I agree with you about putting your heart out to those that have to go it alone. I am sure that you could agree that you would be absolutely miserable without your GF. I don't know where I'd be without Bryan. He has picked me up, literally, so many times when I have fallen. He has seen me at my WORST. The scary thing is that I am only 27 and he knew what he was getting into. He jumped anyways!:winky:

:hug:
Heather

That was a really funny mistake though! LOL

Let's start a rock group!
 

:rm_milk:That was really an amazing poem. I can't believe she included this line..

"A strong woman is making herself strong, every morning while her back throbs."

Talk about ironic, huh? Maybe these things only happen to strong women, like us, and that's how it all comes about we have so much in common with the strength and this disease....(And waking up with stiff, stuck aching backs)

You both have been truly kind in your words to me in regards to my past. Thank you so much for making me feel like Superwoman. Another ironic thing is people have always told me I looked a lot like Linda Carter!!!!! LOL :p

To answer your questions though, I've had RSD/CRPS (whichever you want to call it) since September of 2006. I left my ex husband years ago...when I was in my mid 20's, I did not have RSD then. As I mentioned though, that was something that tought me how much strength I had. By leaving him and by starting a new life with my toddlers (now they are teens). It's been years of struggling, years of patience and hope for a better future.

I met Brian (now known as LoveMuffin) in 1999, a few years after leaving my ex. I was pretty content with the single life. I was just dating someone at the time, but it was nothing serious and to be honest hadnt planned on even bothering with a serious relationship again. He was a music teacher in England (where's he's from) and I was just getting into the Environmental Feild.

Definately we met when I least expected it in the most unlikely place!!!!!!!

It all started when I bought my very first computer... I had been told Chat Rooms weren't safe, so I stayed away from them (for the first few days at least:ROTFLMAO:) I went into some randome room, and I met Brian who was, at the time, known as "FuNkY". I didn't even really know how to use the internet then...so I couldn't tell you at the time how I even ended up in a chatroom called "FrEaKs R uS"! (I' can't help to laugh as I type this!)

He and I were getting along so well, it was like we had everything in common. It was actually pretty unbelieveable to see someone else respond and react exactly the same way I did to everything. He was getting ready to disconnect, begain to say good night to everyone in the room. (It was daybreak in England at that point!) Just as he had his finger on the 'X' to close the window I typed. "Going so soon?" He stayed for a little while longer and we exchanged email addresses. If I hadnt said anything we never would have met again because as I mentioned I had NO idea how I ended up in the "FrEaKs R uS" chat room in the first place!!!!! We exchanged emails that night and he sent me a long email about himself. I was so excited, I ran to my mother to show her what he wrote. She told me he sounded too good to be true, but of course I didn't listen...my stubburness is still very strong!!!! Months after speaking on the phone and instant messenging we couldnt take the seperation anymore, we had to find out if this was as real as it seemed to be. He rang up the biggest phone bill in the world, which made him completely broke. He sold many things just to be able to come to the U.S. for 2 weeks. It was very powerful actually, and completely romantic. He was so cute as well...long blonde hair, six foot four, blue eyes...like my very own British Rockstar!!!!! LOL

He and the kids got along wonderfully as well, and that was so important to me. When it was time to leave again he decided at the last minute (once again) he was going to stay. He's been here since then!!!!!!!! Then about a year and a half later came our seven year old girl, little Chloe!!!!!!!!!:rm_milk:

When he came here, he couldn't work mind you...it took years to get his immigration status legal...so I was actually not just taking care of two young children, but also LoveMuffin and Chloe as well!!!! Only now I had at least some support with the kids, and they took him on as their father.

But in January of 2006, he was made a Permenant Resident!!!!! That same January he got his drivers license and a really good job!!!!!!! Now he makes tons of money and has just received a promotion and is going to make me a rich woman! (Or else)

Anyways...that's what I mean about struggling so long, then finally being able to take a deep breath and relax then being hit all of the sudden with this CRPS bullsheet! What a slap in the face!!!!!! Now you see what I mean????:Doh:

Heather...
That's so sweet that you called your Bryan like that. I'll bet that made his day!!!!!!!!!!

I'm so sorry you are having to encounter this pain again. How terribly frightening for you it must be. You really do have so much courage to have RSD, get married, and have a baby. That's like the biggest stand off to RSD I can think of. You really have the attitude that your not going to prevent RSD from preventing you from doing all you've wanted to do for yourself. I can see you are a truly happy person and delighted by your family. It iwas so obvious when I was looking at the pictures you had on your page last night.


Rocker, you really are so lucky to have your GF. She sounds so amazing as well! I know what you mean about releasing with someone when you're like this...it really does make a world of difference when you have someone like that by you, some one who "medicates" the soul.

Thanx again for all the nice things you've said...you made my day as well! And I am just so impressed and inspired lately and it's because of all the wonderul things being said in this thread. I do believe this is the best thread ever!!!!!!!!!

Now, your GF's name isn't 'Bryanna' by chance is it? I only say that because Heather and I both have a Brian and Bryan! HA!

GreyHoundLover....
 

You really are stronger than I thought. I can't believe the chat room story and you have a Brian and I have a Bryan. Yes, it did make his day when I called him.

I am glad that I found you on myspace. I pretend I don't have RSD there...LOL...by the pics you can't tell, huh?!

I don't want my daughter to see me on meds or in a wheelchair. I want to be active and vibrant and not take away from her life. That's what kills me every time I look into her eyes ***sniff***sniff**:Bawling:

One Day at a Time! My dad is 10 years sober. AA 7 days a week for 10 years and is my Mentor. I have learned a lot from him!

I look up to you GreyHound!

:hug:
Heather

Different Spaces and Places...
 

I noticed that about your MySpace as well!
The reason I noticed was because I don't deal with it there either. To me, my MySpace is a reflection of myself. Again, keeping my identity for as long as possible is so important to me. I've lost it once before, and as odd as it sounds,I like who I am for the most part and would rather not lose it again.

But it's so nice to see your smiling face!!!!! :Heart:

That beautiful little girl will always see you as a protector and strong because you won't go down without a fight! :Noooo:

So you have it full body as well...right? I don't know if I consider mine full body or not. Lately though, my hands seem to affect me the most. I know you're probably thinking it's because of my enormous posts, but it started before that...HONEST! My fingers are so cold they feel like their burning. They're red, swollen, and my skin is thicker and has a shine to it on some days and dull, white and crusty on others. I know it sounds awfully stunning doesn't it????? Do you get this in your fingers and how does it affect you there?

:hug:

Sobriety
 

It's so wonderful, as well your dad has maintained his sobriety..that's such a long time! See...that's where you got your strength from!

Greyhound And Heather
 

[The two of you have been two of the most amazing, and truly special people i have come to chat with on here. I didn't know either of you had a myspace. IF not too personal, what is wither of yours. If you search, on mine, it's jcrewpoet or jcrewpoet1977 (not sure which). That'sa great place to chat in a more private setting if need be (unless you can do that on here and I just don;t know about it).

Greyhound, you were cracking me up..no, my gf is not Brianna. :) That would be pretty damn ironic if it were. Her name is Cindy. Not only do i feel, as I said, medicated, there in her arms, as we all seem to, with our significant others, but, she is also an attorney. That brings me comfort as well. Of course, with ethics and how things roll, ethically, she could never be an attorney, but, she knows good "go to people" (as I am in the process of dealing with the demon that is worker's comp). And Greyhound, even more ironic, I met my gf online as well (something i had never done before, and, honestly, would have made fun of other people before for doing). I was just at, kind of a place you were, I had removed myself from a 4 year relationship, that was toxic, that was no clean break for me, and I was willing to be more open-minded in reaching out, meeting new people in a variety of different ways. And, she and I were friends for several months, which was great in getting to know each other first), before we crossed those lines.

THE POEM: (heather and greyhound) I am glad that you both enjoyed it..it is one of the most incredible poems I have EVER read. To be a strong woman, certainly, it begins inside, that keep-on-keepin on mentality no matter if you feel parts of your physical self are aching from head to do. Strong woman are strong outside-in, and in-side out.

Anyway, thank you to both of you, Heather and Greyhound, for being the amazing sources of strength, constancy, and truth I have found here. Your support doesn't go unnoticed or unappreciated by me. :)

Good idea!
 

My myspace is:
myspace.com/asiliveandbreathe


I can't go into my account at work today, but when I get home I'll be sure you find ya!

You two have been such an inspiration to me as well. I think it's true...when someone points out how strong you are, it makes you that more determined to be even stronger!

And it's okay even though we encourage one another to be strong that we have bad days as well. I just want to reassure you, that no one will ever think less of you for expressing your pain.

Poor Heather right now is having a flare up, my heart goes out to her...I hope she get's better soon, I wish there was something I could do.

Cindy sounds like such a wonderful person, there is clearly a reason why she's so rave about you!!!!!!!!

Angels
 

Heather, my heart, thoughts and prayers go out to you, hang in there, and fight with that fighting spirit I know you have; that I have heard, and has encouraged me, day in and day out...

Greayhound,
I think most of us, the fortunate ones, have our everyday angels in our lives that guide us through and past the pain (ie, Cindy, Brian, and Bryan). We are blessed for their patience, understanding, and constancy. I never forget to tell Cindy ever single day the depths of my love and appreciation.

Hi Guys...
 

GreyHound,

I consider mine full-body because, I have full-body flare-ups and I have RSD arthritis now. I can barely open my hands some days. Mine don't get swollen as much as they ache and sweat and burn. I am like you. I don't have the sensitivity like I do the burning throughout my body.I keep typing and don't stop doing stuff all day. Once I stop the pain gets worse. And it keeps my mind off of it. My legs are the worse. They get swollen, turn blotchy red/purple, and get shiny. My feet are always freezing as are my hands, and sweaty. Sometimes my entire backside (like back of neck down to back of ankles) sets on fire. I can never understand that one.

The worst yet, I had a Flare in my Girlie Parts! Has that ever happened to you? OMG, I freaked out. That's why I had a c-section, because I would rather have the RSD attack my abdomen than my area again. It was awful!

I appreciate what you said about my dad. I have so much respect for that man. He did that for us 3 kids. I want my daughter to look at me in that sense.


JCrew,

You are a sweetheart! My myspace is http://www.myspace.com/onegirlinterupted.

Add me whenever! I will try to add you too. Seems like I am on here more than I am on there. You know that I was #352 on myspace. I started promoting for it when I danced at clubs like 7 years ago. Crazy huh?! Now there is like 90 milliion people on it.

I truely look forward to getting up everyday and chatting with you guys on here. Thanks for being there with your honesty and love. It means a lot.

Love you,
Heather

JCrew..
 

I tried both ur myspace's and it says invalid on both????

Heather

heather
 

it might be just jcrewpoet. I think that's correct. or try sara adams is kentucky to find me