[bbpoolgurl]

Hello all, my name is Brittany, and I found your message board after a couple of family members suggested I go online and find one that can offer support and understanding in what I am going through. Please bear with me, as I have never done a message board before, so I do not know the correct or incorrect way of doing things (I don't know if posting a new person post is correct?). If I am doing something wrong/there is another more accepted way of doing it, please let me know!

I am 23 years old, and I was diagnosed with RSD/CRPS in November 2006. My story is as follows...
Injury to left ankle on the job July 30, 2006. Immediately saw doctor at Occupational Health with job manager. Was told it was a severe sprain and was placed on crutches to keep weight off. Kept going back to OH, who kept saying I needed to see either a podiatrist or Orthapedist. Job kept refusing seeing another doctor. Finally, after about 18 weeks of still being on crutches and excrutiating pain that seems very out of place, saw a podiatrist, who told me it was too late, that the nerve was already damaged and I had RSD. He perscribed Lyrica, placed me in a CAM boot. Referred me to my current pain specialist. Saw both Pain dr and podiatrist for about 3 months. Finally switched to just the pain dr. Since switching to her, I have tried NSAIDS, nerve meds, anti-seizure meds, anti-depressants, 3 rounds of PT, narcotics, and 17 left lumbar sympathetic nerve block injections. Last year, she referred me to a pain surgeon for a Spinal Cord Stimulator. Had the trial last November with the SCS, which went fabulously.

Because this is a worker's comp case, we have been fighting my former employer for treatment. Everything that could go wrong in a case, has gone wrong. We have letters from their lawyer saying they accept the diagnosis and will pay for everything- and then he retired, and the current lawyer who took over is refusing payment and treatment, playing very dirty and nasty. Plus, they changed the worker comp laws in my state (delaware), and because of that, I was one of the first to go under the new law, which no one really knows how to operate, which added many more months. Now, we are fighting an appeal that could take over a year because no one knows how the court system will work. It doesn't help that the courts in DE are biased towards worker's comp employers, and against any cases with RSD (they think I am "making this up").

For now, I am on the narcotics (which by the way, I refused for the first 2 years because of a history of addiction in my family). Now, I am on the Duragesic Patch 50 mcg, and Vicodin 20 mg PRN. The hope is that with the patch, I won't have to take the breakthrough meds as much- which is proving to be the case. I was on MS Contin, which was horrible, I had such reactions to it, and the side effects made me miserable. The patch is so much better, so much more steady, I love it (as much as one can love pain meds). I also use a cane, because worker's comp denied the wheelchair that my dr wanted me to have.

I am engaged to a wonderful man who takes care of me and loves me for me- he is the only reason I am able to get through all of this. I am currently on medical leave from school. My biggest worries with all of this is not the pain, but family- Brian (my fiancee) and I want to have children one day, and I worry constantly about the affects this disease, the drugs, the SCS (if I ever get it) will have on my body and my future children. All I ever wanted to be was a mom.

If anyone needs doctors, mine are wonderful. Even though they were in the line of succession for who my worker's comp would pay for, they have fought and fought against them for me, and I couldn't be more thankful for them. Dr. Ginger Chiang out of Delaware Back Pain, and Dr. Jalali out of Lankenau (Pennsylvania) Pain Center. Both are wonderful, and I highly recommend them. They are more about treating and hopefully putting into remission, rather than just doleing out the drugs.

Anyway, thank you for reading this far, and if anyone has any advice/thoughts/prayers for me, they are more than welcome. **

Brittany

[daniella]

Hi welcome to the boards. This is a wonderful community and very imformed as well. I am sorry for your pain and condition of course. Like you I have tried many treatments/meds and been to so many doctors etc. I am back on new meds non narcotic though which have helped though I am still in pain. I guess a few thoughts I have about the future/kids etc is to try to stay in the day. I am a worrier about the future and the what if's but I am really trying to be in the day and how I can get through it in the best and most productive way. This condition with the proper treatment found which is so different for everyone can really give one a good quality of life. Of course there are flare up etc. I am not familiar with WC but have you got a lawyer? It sounds like you need one. Is that why you did not get the perm scs at that time as usually I thought it was right after the temp of any relief? I wish I had more answers for you but am glad you have a good support of your fiance. Many thoughts

[bbpoolgurl]

Thank you for the thoughts and advice.

I do have a lawyer, we have had one for a while. We have won against them before, which is why we thought we would win this. Yes, you are usually supposed to have the perm SCS after the trial, and I was scheduled for the perm SCS last December, but 2 days before the surgery I got a phone call that WC was refusing to pay, and ever since then it's been a fight.

Quick question, I see on the lefthand side underneath the usernames you can change your mood, how do you do that?

[mrsD]

Hi Brittany...

When you log on, there should be a "mood" command just under your name in the upper right. Click on it, and a menu will open and you just select one.

It may not show up until you have 10 posts. I am not sure about that feature. It should be right under "private messages".

[bbpoolgurl]

Thank you Mrs. D! I figured it out

[mrsD]

Good for you! There are many nice features on NT for the members to enjoy. I see you are already putting up graphics too.

If you get stuck, you can PM me or leave me a visitor message,
or if it is a "BIG" problem, you can visit our Computer forum.

I am not a swift computer person, but I can do most of the things here and try to help. Large problems like cookies/cache issues etc, are best asked at Computer forum.

If you like to make long posts, you may be auto logged out when you least expect it. So when you log on, click the little box, "remember me" and you'll be insured enough time to type a while.

[hope4thebest]

Hi Brittany,
Welcome to the boards and to new friendships! I am glad you have your caring fiance to help and uplift you!

RSD brings changes to our lives in every way but time is our friend, as we learn to make adjustments and figure out ways to do things differently.
I am so sorry you family is not providing you with the encourgement and help that you need...
I know how hard it is when your goals and pursuits are interrupted by this 'condition'..

If your pain is tolerable, maybe you can take an on-line class in the meantime , while you figure out logistics. this way you can take a class more comfortably at your own pace.

Asking for help is really difficult for some of us and it is for me!! But I was reminded how good it makes people feel to be able to help when one is in need. I know you would be very willing to help someone if they needed you!
We have to allow others to have that same pleasure in helping us!!

Seeing a therapist would be helpful and I am wondering if someone from your church could perhaps drive you to the appointment, or maybe you can have some time with a therapist on the phone..

In the meantime, this is a place to come to when you need to feel understood! Friends are always here to listen and care!
hope4thebest

[Cake]

Hi Brittany and welcome!

I'm Kate, I'm 31 and married to an amazing husband too! My CRPS started when I was 23 from a bodged up blood test in my arm. At that point, we had two daughters- Bailey aged 2.5yrs and Olivia just 7 months old.

It's been a tough road where we've also had legal battles but we're still very strong as a couple. We now have two more children- Dayne was born 2 yrs into my CRPS, in 2002, and we had Hannah in 2006. We were lucky that I had a remission of pain during my pregnancy with Dayne, but didn't have the same luck when I was pregnant with Hannah. The success of a ketamine infusion gave me 10 months pain relief, which opened the window for us to have that "just one more" but my CRPS spread to my right leg when I was 5 months pregnant and I didn't get the remission I had hoped for.

It was really tough but totally worth all the pain, as I couldn't imagine life now without Hannah. Bailey is now 11 and Liv is 9 and they are the most amazing girls, always helping me out and they all have had to learn to clean up after themselves and be responsible for their things, as I can't exactly go around picking up after them.

I mainly take the opioid meds now, as I've exhausted the lists of other medications over the past 9 years. But I make sure my CRPS is only one aspect of my life. My husband and my kids are amazing and I'm very lucky, I have a great support network around me who helped me out when Liv and Dayne were babies (as I couldn't use my right arm at all) and who help me out now that I'm on crutches most of the time.

I'm glad to hear you have a really supportive partner- it makes the world of difference to your motivation to keep fighting this thing. My husband just works 3 days a week and the rest of the time he's home as my carer, and a stay-at-home-dad to the kids. But I'd also be lost without the friends on this forum, as it's so important for us to talk to people who truly understand what goes on in our heads, and our bodies, not just our family and friends. And it helps you see you're not alone in the world.

Anyway, I just wanted to welcome you too! Feel free to post topics and questions whenever you like. Sometimes, by browsing a few pages back, you can find your questions already answered or can carry on that discussion, otherwise ask away on a new topic!

Oh, and I second what Mike said about the opioid meds. I'm on oxycontin and a fair dose of it, but it just lets me be "normal", or as close to it as I can be! I don't get any high feelings etc and haven't with the other opioid ones either. If you have the pain that warrants them, then they work on that and that's it.

Oh, and I study from home, too. I do an online Uni course. I finished a 3 year Human Resources Management course 2 years ago, and have been spending the past year or so doing a general Business Administration course. I haven't worked since my CRPS started in 2000 so I wanted to update my skills and keep my brain working in the meantime! There's no way I could get to classes so this suits me perfectly! I study when I'm ok, I don't when I'm having a flareup. As long as it all gets done in time then its ok to be done that way. :-)

x Kate

[bbpoolgurl]

WOW Cake, that is awesome that you were able to have children after your diagnosis! Like I said, that is my biggest concern right now. Is it okay, once I get my list of questions together, if I private message you to ask them? You have just given me such hope, such a bright burst of hope, I am giddy with it! Thank you, thank you, thank you!

To those of you who mentioned online classes- we have thought about it, but right now, my memory is such that I forget whole conversations (among many other things), so we decided that right now is not the best time for me to go back. The narcotics have really done a number in that regard; the patch is no where NEAR as bad as the MS Contin was, and I am verrrry slowly regaining everything back, but it's extremely slow. Hopefully, I will be able to do something like that soon.

[Kakimbo]

Hi Brittany. I am also new to this whole message board thing! My name is Kim, and I was diagnosed with RSD in January of this year. My original injury was to my left hip last October. Also work related. I live near Middletown, DE. I am sympathetic to your feelings, and can understand what you are going through. My RSD is also in my leg, and I am having a very hard time getting any relief. Meds make me sick, sympathetic nerve blocks don't help (I've had three so far), and I am home alone all day while my very loving husband is working. It is very lonely and depressing. I pretty much watch TV all day and am trying to find a good hobby to entertain me. I read ALOT and have become addicted to Desperate Housewives! I am on my third round of PT. Just found out that I also have a torn hamstring. I have an attorney, and will get a rating for permancy in October. (One year after injury). If you are bored during the day, I would love to chat. Please know that you are in my prayers, and you will encourage me to get relief and feel good about myself too!