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!!:(

Thank you everyone for your kind and supportive words. :Thanx: I know it doesn't seem like much, and I hate for us to have to meet this way (as someone already said), but it really is a relief for me to have come across this forum. It's like a window of light has been opened up- I am not alone on this journey, and I can and WILL do my best to beat this...and if I can't beat it, I will do my darndest to make my life happy!

Again, thank you for the warm words- they really do help put a smile on my face.:grouphug:

Brittany
Welcome
Your correct on who your friends are,,I can count mine on "LESS"" than ONE hand...either way,,,Eagles fly alone,,im glad that you have faith in the Lord Jesus,,he is the great Physcian,,call on him and he will heal you,,,,,,and im so proud of your determination , and that God has put a good caring God fearing man in your life,,,your in my prayers,,,,,,,,,,,,,bobber,,,,,,,,,ps,,,read psalms 41"1-4

Good luck. Hang in there.

You've got age on your side. I think you have to fight this thing tooth and nail but I'm not always so sure the best means to fight it. Try to keep it as quiet as possible while doing as much as you possibly can. Mostly just don't give up.

Brittany,

It is nice to meet you. I am glad you found this forum. I get a lot of support, even if I am not being active. Simply reading other people's posts often will help.

You mentioned that you refused narcotics for a while, for concern about addiction. I did as well, and am always conservative when it comes to ANY new medications. But I was reassured by several doctors, including one who specializes in addictions, and they all convinced me that addiction happens when you take the drugs for recreation. When there is a legitimate need, like severe pain, your body reacts differently than when you are only “getting the high.”

I have been on some pretty large doses of very strong stuff – most regular folks would be flying high – and have never felt even the least giddy. That shows me that the drug action is going directly to the pain. The first time I take a Percocet or something and think: “Wow! That feels wonderful!!!”, I will back off.

One other idea. Mrs. D made a comment on long posts. I like to compose off-line using Microsoft Word. I then have tools like spelling and grammar check, Thesaurus, and so on. I will then copy-and-past into the board.

Wishing you well,

Mike

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 :hug:

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

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.

Brittany,
This board is my safe haven. The place where we are understood and comforted. I wish I would have found it sooner, but now that I know I can come here and be among friends who understand RSD and the roller coaster ride that it is I feel less isolated. Welcome and we are glad to have you.:D

Welcome to the group Brittany !

I am a 27 y.o. with RSD/CRPS in my legs and pelvis. I've broken both feet twice, which triggered the RSD/CRPS in my legs and the RSD/CRPS in my pelvis was triggered by complications from pelvic surgery last year. It took me years to get a proper diagnosis with my feet and several months with my pelvis--- a wonderful neurologist finally put all the peices together. Its been bittersweet-- at least I finally know what is wrong.

I am currently being "treated" by a pain specialist with Botox in my stomache/pelvis; and a combination of anti siezure medications (i also have epilepsy, so my anti seizure meds serve two purposes, lol ) and Elavil. My new pain specialist is trying to figure out a medication to help with my flares and intense breakthrough pain.

My pain specialist also mentioned the possibilty of a SCS in the future.

Anyway, my husband (who is wonderfully supportive even though he doesn't quite understand RSD/CRPS) and I are currently TTC (trying to concieve)--- so feel free to private message me if you want to talk anytime.

:) L2L

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!

Hi Brittany,

My injury was also job related, to my right shoulder, in Oct of 2006. This board has been really great for me. I am sorry that you are having such difficulties with the legal aspect of your case - don't ever give up! And ensure that you have the VERY best attorney possible. WC is the pits. And I second the idea of online college classes, my sister lives in Wyoming, DE and took some Master's courses online at Univ of DE. Once you settle in with your meds it will give you something constructive to do with your time. My sis only had to go to campus for the first class, mid-terms and when she had her finals.

Your care should include PT, psychological counseling, and an SCS if your treating physician recommends it. That's why I mentioned that you may want to check that you really do have a good lawyer. He or she should be battling for this for you. One year is a REALLY long time to be waiting for interpretations of new law.

Can you get warm water PT for your foot? Transportation is often provided by the little buses that the elderly and disabled use to get to their doctor's appts (that includes us now!!) Call around to your town's Social Services offices and see what you can find out about eligibility and availability. It may just require a note from your doctor, with whom you say you have a great relationship, so that would be no problem.

My PT has been great at helping me solve my problems - I usually go twice a week. Although my progress has been somewhat slow, without him I would still be holding my arm against the front of my body, afraid to use it. I've been seeing the same therapist for about a year, and now I'm just afraid of anyone touching my injured shoulder. I can touch it, though, so I'm sure I'll eventually get over that phobia if I ever get rid of my RSD pain. Have you done any PT at all for your foot? You should really persist on that, IMHO. Ditto with the Psych counseling. I didn't fall apart emotionally until about a year after my diagnosis, when I finally took a disability LOA from my job. I am seeing someone now, but WC hasn't paid her yet. My attorney is working on it...

There have been a few people on this board with SCS's, with mixed results. Some say it makes the RSD spread. Have you considered Lidocaine infusions or ketamine?

Good luck to you... Sandy