[bbpoolgurl]

Thank you everyone for your kind and supportive words. 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.

[bobber]

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

[Imahotep]

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.

[bassman]

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

[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.

[cindi1965]

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.

[love2laugh]

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

[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!