So...in 2009 I was hurt at work and now have CRPS in my left ankle. Have posted about some of my more recent troubles after getting to lumbar sympathetic blocks in January and the quick downward spiral since then. It's been frustrating because it's like I am the patient that no one wants to touch now. I don't even know whether these new problems are related to the CRPS and the blocks or not (though the timing makes the chances of it not being related seem like that would be QUITE a coincidence).

Anyway...basically I can't even take care of myself anymore. The hypersensitivity in my back, neck, shoulders, arms, thighs, etc is spreading and INCREASING at an alarming rate...and the PAIN in my SPINE is SO bad...last night I couldn't sleep at all because it was so bad. Did get hours of sleep later in the day so it's not like I am not sleeping at all. My mom who lives out of state is coming to live with me and my boyfriend so that she can take care of me on a daily basis because the neurologist and my primary care both say I cannot be left alone. But boyfriend has to work (someone has to pay the bills, and mom doesn't work or do anything so it's not like she has any reason NOT to come).

But sitting here, without a diagnosis and therefore no plan of treatment gets one to thinking about a lot of things. I have always felt blessed to have the people around me that I do, friends, family, boyfriends family...all of whom have never once doubted my pain and have always offered to do anything they can to help me without ever losing sight of the fact that all I want is to be normal. It's something you can't really express to anyone what that means and have them truly understand unless they've been and/or are going through your pain. These people have kept me strong and focused one the I WILL get better attitude that allowed me to continue a normal pace of life for about 6 months before fate stepped in and it all fell to pieces.

These things happen...and the happen to good people...and no one will ever know why. But I'm 27 years old and I need to use a walker to walk around the house...I can't see straight most of the time between blurry vision, double vision, dizziness...whatever...I can't stitch which has been my primary therapy to help me through the pain in the past...the pain is so much worse than it has ever been...I feel weaker than ever before...and I have a headache that just can't be defined in any way that makes sense...and a never ending list of other problems.

But I'm still surrounded by these wonderful people (and the friends are all internet friends because I'm such a hermit in real life that I just can't deal with people in real life...lol). And I have the worst luck with doctors. I think it's mostly my fault because I just put faith in the doctor to know best and I don't question or take control of my own care. After this last disaster following the block I now bring people with me (as well as lists of questions) who can be my advocates and get in the doctor's/nurse's faces to keep things focused and to get answers. I know I need to be able to do this myself...but until I can I will continue to bring these people with me to make this happen.

My neurologist said I don't need to be seeing a pain doc at this point and my family/friends agree that there's no real point in trying to treat the CRPS in my ankle until we fix these other issues first. But my primary care doctor referred me to a pain doc that he thinks is very good. And everyone has said just put that off until you get the rest sorted out.

But while I was awake last night because I couldn't sleep because of the pain I thought...no...this is the perfect time for me to meet a new pain doc and decided if this is someone who will work for me. I've thought a lot about what the difference between this last doc (who messed me up so bad) and the one I had before (who gave me 6 months of being normal before he stopped seeing patients and I was forced to switch). And after a lot of thought I realized that the good doc asked me what my goals were and the bad doc did not. So why wouldn't I take this time while I'm going through this other stuff to discuss my goals with this "new" potential doc. To discuss what has worked and what hasn't. And to discuss possible treatment plans that may work for ME...rather than rushing into some procedure because that's what this doc likes to do. I feel like now is not the time to do any procedures or treatments for the CRPS because they are pointless until this other stuff is fixed. But why wouldn't I want to develop a trusting relationship with a doc and go over what the right treatment plan for ME is while all this other stuff is being diagnosed and hopefully treated? So I am in the process of trying to make that appointment although the dr's receptionist seems like an evil witch determined to make things difficult despite the fact that my primary doc spoke to the new pain doc personally about me and she said she wants to take me on. But I apparently have all the time inthe world to work that out.

But yesterday I also decided to leave the house and go to my boyfriend's family get together for his sister in law. I went back and forth over whether it was worth it with how much pain I am in...but decided that leaving the house for something other than going to the doctor would be a good thing. I worry because my boyfriend has a nephew who is 2...his name is Daniel and he is SO smart. And he likes me for some crazy reason. He was very disappointed that I didn't come to the last get together and talked the whole time about me and how I needed to get better. He came with to the last LSB because my boyfriend's mom drove me and she had to babysit. I felt guilty because a dr office is no place for a 2 yr old child. But he is so well behaved and so good and it couldn't be helped. But my big concern yesterday is that I don't want him to see me in REALLY bad shape. He's 2...he's impressionable...and a kid should never be exposed to real suffering in someone they care about if it can be helped. But I figured I could hold it together for a couple of hours and I didn't take the walker, just leaned on the boyfriend for the walk to the car inside and sat in the closest seat to the door. I played with Daniel for an hour or so and he gave me a picture he colored in with some typing on it. It said, "To Aunt Nicole. vghoijoicjfoij (Daniel's version of Get Well Soon) Love Daniel" And there were a bunch of stickers on it. Apparently he was so excited because I might be coming that he kept looking out the window to see if I was there yet. He asked if I liked the picture. I said I LOVED it and that I would put it where I could see it every day...and I did...it's taped to the entertainment system in the family room since I can't make it to the kitchen often to see it on the fridge.

Anyway...it was an exhausting...painful trip...but totally worth it for the soul. I am SO very happy I went. And the picture hanging on the entertainment system makes me cry everytime I see it.

I also run an online cross stitch board. And the girls on there are incredible. Their love and support has been incredible...they always make me cry with their love and support. Not being able to actually stitch has been hard on me lately. One of the girls needed a double lung and heart transplant and she got it finally just over a year ago. She's made me so strong through all this both before and after her transplant that all I can hope is that I can be as strong as she is. She's like my yoda man...and one of the girls gifted me a chart called Small Miracles today. It really touched my soul and once I can stitch again (hopefully soon)...I will start it. Because once you lose your health and it feels like the world is just crashing down around you...it really is those small miracles that can bring you back again.

Anyway...I don't know if any of this means anything...but I just felt the need to share these thoughts with people who get it. They've been swimming around in my head all day...and I wanted to get them out...

Catra121 Glad to hear it.
Doesnt it feel good to get out and make yourself enjoy the little things! I am in similar position with pain i have generalized CRPS. It took me a while and a lot of support to realize how important it is to force myself to put myself out there. Its true that we pay for it later but i am getting better at knowing my limits. I for so long missed out on visits and events. I think mentally we need others. I had gotten to the point that i felt i needed a wheelchair(electrical) but my pain Dr says he would write for one but he has found others have given up trying to walk because it is much easier. I took his advice and take my time, even if we have to stop, or stop and sit for a few minutes, then start again. This, along with walking in the heated pool I have noticed i am walking so much better. My doc tells me if you stop using it, youll loose it! I trust him.
I cant understand your neurologist saying no pain Dr. it sounds like thats what you really need right now.
momof4

I know what your doc means about how easy it would be to give up on the walking if there were an easier alternative. That's why I am so adamently against using electric carts or wheelchairs unless I absolutely have to use them in a store or something. I'll work as hard as I have to in order to keep walking. Even if that means this old lady walker right now...lol! I WILL get better. I just keep focused on that. The visit with family and my "play time" with Daniel just re-energized my focus on that. That little boy really is very special and even though I never want kids myself he has given me the courage I need to keep pushing for that normalcy.

Catra121,
My heart goes out to you. You are so young to be going through this. I was 38 when my symptoms first started. (I'm 43 now.) I remember how very scary it was when I got to the point I could no longer care for myself and had to depend on others for the simplest things like taking a shower and washing my hair or putting on a bra and getting dressed. I was diagnosed in Nov. 2006 after close to two years of symptoms. My RSD/CRPS started in my right arm and shoulder. It was caused when a herniated disc at C4/C5 permanently damaged the C5 nerve root. Initially I was able to continue working. I am a Registered Nurse and worked in Oncology. I loved it!!! Things were difficult but I was able to function for the most part. I went through multiple treatments including having a spinal cord stimulator placed. Then in Jan/Feb 2008 my stim started mimicking my pain rather than interrupting the pain signal. The RSD/CRPS also began spreading to my chest wall, rib cage, left arm and shoulder, neck and eventually my upper back and spine. It also started affecting my internal organs--most notably my stomach and heart. (I'm not suggesting your RSD is spreading--only your doctor can determine that.) By March 2008 I had to leave work and go on full disability. I felt like my whole world was turned upside down. I lost my job and with it an important part of my identity, my independence, my health, and at times it felt like my sanity. Then added to that there was the horrible pain and sleepless nights. (As you can tell by the time of this post I still struggle with the sleepless nights.) I am so glad that your mom is going to be able to help you and that you have what sounds like a loving, supportive family. There is no way I would have made it through all of this without my family. My husband has been unbelievable. We were both use to me taking care of most of the household chores (my choice) and the boys (they are 20 and 21 now and still live at home--one is in college and the other is chronically ill). Then all of the sudden not only was my husband caring for me and working full-time but he was cooking, cleaning and handling all the boys activities. He has never once complained. He takes it all in stride.
I really think you are on the right track as far as meeting with the new pain mgt doctor and getting to know him and establishing a some goals. I am also glad that you went to the family get together. It's so hard for me to get out and do things sometimes because I know that I am going to pay for it with increased pain and fatigue for days afterward but it is so important for my physical and mental health. I try to get out at least once a week and go do something. It doesn't always work but I try. Weather permitting I also try to go outside for at least 15-30 minutes a day just so I am not staring at the same 4 walls all the time. I am also trying to find some new hobbies which is really proving to be quite a challenge because so many things require the use of your hands/arms and I have very little strength left in my hands (not to mention the increased pain activity causes). I admire your positive attitude and courage. I did not intend for this to be a "novel" just a note to let you know you are not alone and to stay strong.
Cricket

Thanks for sharing your story Cricket. It really helps to hear everyone's stories and that's what helps keep me focused on getting better. I'll never be like I was...but I focus on that I WILL get better. And I feel so blessed by all those around me who keep me strong and who make me feel normal while still helping me through. This has been a very rough 4 weeks since these NEW symptoms popped up and it really makes me think that no matter how bad things are...they can ALWAYS get worse so you need to cherish all the small things while you have them.

One of my cross stitch friends gifted me a chart called small miracles and I can't wait to start it because it reminds me of how important it is cherish the small things.

Thanks again for your reply. It really touched me.