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!


Heather

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

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.

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.

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!

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

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.

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.

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.

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!

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

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!


Heather