[Oceanchild]

Hi everyone,
I was diagnosed with RSD/CRPS about a year ago. I joined this forum and read every post and every article online I could find. I also did extensive research on medications that relieve the pain. (so far none for me) I want to thank everyone for being so open about living with RSD/CRPS and how it affects you and what you can do to help live with it.
My story is long so I will give the shortest version for now. My foot was crushed by a 17lb metal box, my injury healed but my pain was still severe and my leg was sweating. Shortly after that my ankle started radiating burning pain along with my foot. I was afraid to tell anyone, I felt crazy! By the time I was diagnosed it was all the way into my calf. A Dr that preformed a EMG test diagnosed me. I was in disbelief so I got another opinion. All in all I've been diagnosed by 6 Doctors including the insurances IME. So it was time to accept this is what I will need to deal with.
My whole life was based around being athletic even my job was very physical. So I fell into a deep dark depression while I battled with myself about how this can't be happening to me, constantly hearing "I'll never" over and over again in my head. Stress is a killer for RSD!

Unfortunately I was treated by a Dr that had his license revoked and was prescribing me expired medications. He did two nerve blocks on me, the second one caused a spread into my thigh and hip. His goal was to do a SCS and he did everything he could to get me to that point. He stuck a 75mcg fentanyl patch on my chest after the nerve block, I hadn't taken a single opiate at that point so I overdosed (thankful to be alive) After doing my research and finding out he was responsible for the death of two women and shouldn't be practicing medicine I switched doctors. I ended up on a 25mcg fentanyl patch despite my overdose smh.

My nurse case manager was a great "friend" so I didn't realize how much danger I was letting her put me in by giving her too much control over my own healthcare. I pushed for Stanford, I got it. 6 hours a day of psychological and physical rehab. They switched me from fentanyl to morphine and i couldn't function, then switched me to Oxycontin. It took 90mg a day just to pull me out of withdrawal. I got up to 160mg a day. I KNEW all along this did NOT help my pain! it simply numbed my brain enough to not care about losing all the things I loved so much... My first week on Oxy I told the PT out of nowhere that I didn't feel present in the moment and I was not benefiting from their program. I asked for a detox, a rapid detox at Stanford. IF I had not asked right then and there, I would have leveled out on the Oxy and not asked for a detox.

That brings me to now...I didn't do the rapid detox. I chose an inpatient pain management program. I'm coming up on my fourth week here. Detox is HELL while being at a constant 9. Even with a slow taper I've experienced every withdrawal symptom there is, Ive had a fever for over two weeks and at one point was terrified the detox was going to cause a spread. I started at 160mg of Oxycontin and am now at 30mg of oxycodone and dropping to 0 then I will taper off of xanax. every day is different but everyday I get up, go to gym and pool then do biofeedback and different meetings. Right now in this moment I want to walk out of here!!!

PAIN is unbearable. Im alone, I'm the only one in this program and I shouldn't be. I should be with other people going through a similar battle but this place is a hard sell when you're told you're going to detox from all opiats and learn how to manage your pain by retraining your brain in a way. It sounds like BS. How am I supposed to desensitize by letting someone else touch my leg when it feels like a million shocks rippling over and through my leg.

Who are these people and how do they know this will work!?!?! I came here using a crutch and couldn't bend my knee and today I rode a bicycle! a real one. My pt held me like I was a child, my heart was pounding, I was sweating, my leg was flaring, Im still detoxing, and when he let go I separated all of that from getting in the way of something I love something thats imbedded in my muscle memory and then just like that comes the expression "It's like riding a bike"
Am I paying for it now? yes! but id be paying even more if I never let myself know what my limit really is.

Thanks so much for reading...(feeling so alone in this)

[Becca71]

OH MY GOD.
I can't believe all you went through on top of the actual hell of this disease!
If you are at Stanford then you are in good hands, they are leading the way in researching the causes and treating this condition. I'd ask them about Low Dose Naltrexone once you are off the opiates, since you won't want to be on the opiates anyway. I know they have been working with them for a while, and have a pharmacy that compounds it. Some patients have high success with it.

You are not alone!!!

[zinnia]

Oceanchild so sorry to hear all that you have gone through. I am glad that you are here with us. There is a lot of experience, strength and hope here. You are not alone. Keep coming back and sharing with us. Thank you for sharing about riding a bike. :-) I am glad you are getting help now. One day at a time.
Take care
zinnia

[catra121]

I'm so sorry to hear all that you have gone through and are going through. Please know that you are not alone...I have found so much strength and support in this group especially from the perspective of learning to live with and cope with this condition.

I was off of all meds for several years (I too never got any real relief from the meds I was on and they caused some nasty side effects). Now I am on a couple since I fell off a ladder 8 months ago...but am hoping to be off of them once they are able to treat this new additional injury and I can get back to baseline pain that I was used to functioning with.

I hope that this program works for you...it sounds like you are in good hands. I know things like desensitization therapy sound like a load of BS...but it helped me a lot. And from a mental perspective it was a huge win for me just to be able to wear normal clothes again.

Do not be afraid to share what you are feeling here...this is a safe place and I have learned so much from all the people on here during my years on this forum. The same things don't work for everyone...but one tip here, one suggestion there, and it adds up to reclaiming a more normal life. I can't do things the same way I did them before...and there are many activities that are beyond me...but I have found new hobbies that bring me joy and new ways to accomplish the same tasks and things I loved.

There is hope. You are very strong to have been through everything you have and to still be fighting. Take care and keep us posted on how you are doing.

[RSD ME]

hi ocean. i'm sorry you have rsd and have had such a hard time dealing with it but am glad you found what helps you most. everyone is different in how they deal with rsd and what works for one may not work for another. i have had rsd for over five years and know that for me there are limitations to what i can do because of having rsd. i do the best i can in dealing with rsd but know that pain meds, gabapentin, antidepressants and antianxiety meds help me be able to get out of bed, walk a little , shower, brush my hair and deal with the horrible constant pain that rsd causes. my pm dr told me that allowing the pain to go untreated could aggravate my rsd so i manage my pain with meds and pain coping methods. i also try to move a little each day. i cannot do what i used to do prior to rsd but i have learned to accept this as my limitations due to rsd. i am glad that you are able to work through your limitations of rsd and still do what you love. i hope you continue to get better and wish you all the best.
p.s. the people on this forum are awesome and give a tremendous amount of caring and support. you are definitely not alone in dealing with rsd because NT has some of the kindness people i know. i have found that they to are always help when you're need it. take care and i wish you all a low to no pain night tonight.

[DejaVu]

Hi Oceanchild,

Welcome to NeuroTalk!

What a story!
I am so glad you have shared your story and I hope you will keep us updated when you are able to do so.

A life of simply covering pain with meds is not very helpful, nor is it very inspiring. It gets old and can feel so restrictive and even hopeless. I am glad there are programs offering some potentials alternatives.

I feel neuroplasticity is real and I try to keep up on this as much as possible.
I work on this alone, as I do not have these types of programs available where I live. I have done a great deal of desensitization on my own, which was difficult, yet has paid off.

I agree with Zinnia, as I, too, was so happy to read you are again riding a bike! Wow! I have been an avid "roadie" in the past. I had to give up my bikes several years ago now. I have not yet sold them. I still have hopes of riding them again. I would be very, very happy to be riding any type of a bike.

I do understand your feeling of being alone.
However, you are not alone.

I hope to read an update when you are up to it.

Thanks again for sharing!

Love All Around,