New to the board and have never done a message board before
 

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

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

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?

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".

Thank you Mrs. D! I figured it out :)

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.

Brittany,

welcome to the group. Everyone here is wonderful and very caring. This is the place to ask your questions and to vent when needed, cry when needed, and hopefully laugh when needed. I've had rsd for about 5 years or so, have had 2 scs units implanted and removed, and have been on almost everything out there for pain. I'm currently on Opana Er, which really does a great job helping with the pain. I'm looking into a pain pump as I would like to drive again. With pain meds, i've opted out of driving. I would never forgive myself if something happened because of me.

take care
Gentle hugs
Mary

Hello Brittany,
It's nice to meetcha, although I'm sorry it's this way..
There are many fine people here, I'm still sort of a newbie, and I find lots of support and friendship here.
I hope that you're able to keep moving, RSD is a "use it or lose it" type thing.
I've had it since I was 27, and I'm 53 now. In the meantime, a 2nd accident gave me more injuries and a brain injury. (That's when my life really took a turn for the worst), I'm really having difficulty just accepting, and believing that this is the "new me".

So, keep your faith, I'm glad you have great fiance', and I'm sure you'll be a great Mom!
Keep your dreams, and don't let the injury or pain change them or You!

Be Well!

Pete

ASB

Thanks everyone for the encouraging words- it really helps to uplift me, knowing I am not alone.

Yes, I spent a good part of the morning playing around with my signature and figuring out how it worked :) Knowing me, I won't be able to keep one graphic or picture for too long! :)

Mary, I completely understand how you feel. I got in a horrible car accident back in April, where I totalled my car and had to be taken to the ER. Luckily, no one (including me) was hurt, but after that, my family decided that while on the opiates, I should not be driving. So I have not driven since April, and rely on others for transportation. I think that has been the hardest thing, for me- losing my independence. I was a student at the local university; now I can't go back because not only can I not drive, but the meds have wiped my short term (and some long term) memory. I rely on others for rides to anywhere I need to be. I am only 23! I am having a really hard time accepting that I need help from others especially at my church from the older members, when it should be me helping them out. I cannot work now, so I spend time at home all day while my fiance works.

It's also been really hard on me because it shows you who is there for you and who isn't. I have lost friends over this, my family is not as supportive as you would think a family should be (that's the reason I live with my fiance- he can care for me better than my mother could, because she's "too busy with work, and can't take time off". Her words)...it's just affected every part of my life, every aspect.

I know I probably have some clinical depression, but since I have no way of getting to therapy appts during the day, and my dr doesn't do evenings, well, there goes that. We tried to set up rides for me, and it never worked out.

It's just such a long journey...

Welcome Brittany..
 

It is so nice to have you on board with us..As you have read..this is a very support "family" networking out to help eachother.. We are tied with our RSD, sharing and really finding many likeness in our illness.. I say it again..RSD is a 4 headed animal.. it is relentless. I have been suffering 2+ years, cold turkey as my body won't allow any help from pain meds, they make me ill... I only take Ambient, which I recently began for sleep.

My biggest concern for you is waiting too long fro your SCS, I understand, it's out of your control, but as time passes it can be difficult to receive positive results for the SCS to help you due to the progression of RSD. Again, I am sorry as it seems this has definately been an uphill battle for you... I hope it helps you to know you are not alone in this relentless fight.. Stay hopeful and never ever give up!! Thats the last thing we can do!!:(