Roll call!
 

How is everyone doing?

For me, one day at a time is best for me. I have had this condition this September 24 years. Been on a pain management program since 2004.

It's been a long long time and that program is still doing well for me.

So...

How are you guys?

I thought it was a good question to ask, especially so close to and around the Holidays.

I'm here! I'm doing ok - much like you, one day at a time. I have only had this for about 1 1/2 years now so it's still very much a learning experience in terms of what does and doesn't set it off. I am lucky to have a great pain management team.

Stable for me! I've had CRPS since September 11, 2009 so just over a decade now.

I have a daily 3 hour therapy regimen that I do every day without fail. I credit this regimen to my stability. This regimen includes 15 minutes of mindfulness meditation which has been quite helpful...not in reducing the pain, but in helping how I process and handle pain.

While CRPS has been by far the most difficult health issue of my 61 years, when you can call CRPS "stable", I think most of us would consider that a big win!

Bad
 

Stable in bad condition because I can't take antiflamatory drugs anymore because of kidneys so my pain is up and just had my 40th birthday of this condition and I'm still here fighting an not giving up schedule to have my 164th Nerv block on the 19th .

I'm hangin' in there.

I can do almost anything given enough time.

It can be hard to keep a good attitude but I can even do that with enough time.

It's been 21 years now. The RSD seems to be retreating from parts it had won but that's no real relief.

Most definitely!

I'm glad you guys are here! I'm sure there's more of us out there. If you have a chance to let us know you are still here, please do so!

I’m in and out here- lurking and working
 

I’m going into my 4th yr w CRPS. Got lots of good pain treatment and education early on and a SCS which has been a life saver. Still not living the life I want but working towards it. Still on SSDI, but really want to work. Definitely gets lonely at home. I pop in to read how everyone is doing but usually don’t have anything to offer.
But we keep going forward. Thank you for being here. :)

Is it just me or does this board seem extra slow lately? I come here every few days to see if there's anything new but there isn't a ton. Hope y'all are doing well with low pain days!

Sad isn't it. Maybe people are on other RSD boards? Because this can't be it, surely.

Finding some relief through PIT
 

I'm here! I've had CRPS for 21 years in my right arm with progression to my left arm 5 years ago. I had a cervical SCS implanted in Feb. 2015. I still work, but I am miserable.

Last June I started perineural injection therapy in both arms. It's hundreds of injections of dextrose (sometimes with lidocaine too) using ultrasound. It causes a massive flare at first, but then starts to heal the nerves. I've had 3 sets of injections and the symptoms are slowly improving.

I won't lie - it's very expensive since it's not covered by insurance. I spent $8500 last year for the injections, so it's not for everyone. But I wanted to share what I'm doing since we're all looking for a miracle cure.

Painfree hugs to all suffering from this beastly disorder
Lori

So are the injections a permanent solution or a temporary fix? I'm curious as I haven't heard of this before.

That's the first I've heard of those injections before as well.
If you could give us some more info on that, that would be awesome!

Hello, I just signed up.

MY STORY:
I had a two level spinal fusion June 5th 2016, when my son was just 4 MONTHS old. It is my understanding that I developed CRPS type 2 from the surgery or the healing process post-surgery. My surgeon kept giving me months and months of more time, telling me that I need additional time for the nerves to "calm down". He gave me up to 15 or 16 months before he wrote me off to another doctor in the practice and avoided diagnosing me even though I clearly had pain that developed after the surgery and at 6 weeks post op was complaining of pain disproportionate to the initial injury (herniated discs). He gave me a look of disbelief and almost like I was hurting his pride in some way by saying to him I feel WORSE since the surgery. I was just being honest, not rude at all. I said something is wrong here and insisted on getting another MRI, which did not show much compression besides a bulging disc, which after researching since they never would tell me anything, I found that this is also common with this surgery. It's called adjacent segment disease. Basically the lower discs go out I believe due to a disproportionate amount of pressure on the area below the fusion. If he had treated me properly from day 1 I may have had a way to do some reversing of this terrible thing that's now considered incurable and has spread to my opposite extremity. Water under the bridge, but I've struggled with anger dealing with this and felt lied to, as this was never mentioned to me as any possible outcomes with the ACDF surgery. I'd love to know if anyone else here developed this after ACDF.
I was then given no information as to what this is, any pt, exercises, advice or anything else regarding this thing they now believe I have after torturing me with the electrical conductivity test that eliminated other conditions, and which found dysfunction in one region of my effected arm. I was then offered 1 injection and then wrote off again by the same clinic saying they can't help me any longer and they told me to just go to pain management for any other treatment.

WHY I AM HERE:
I'm looking for non invasive ways of treating the pain and allodynia and to find tips and tricks to do normal every day activities like hair and tooth brushing, bathing and dishes, and caring for small children without huge flares. I'm also curious if anyone went into remission during pregnancy and how much of this is related to hormones, the gut and any other thing if u want to speculate or share any info on. I've been my own advocate and taught myself everything I know by research. No one, not even my pain specialist has offered me any advice and I dont get much relief with the meds I am prescribed. I called my doctor asking for a transdermal patch, spray, cream, something for the arm and hand pain as all he has suggested is gabapentin and a weak painkiller in 2 years, oh and the stellar ganglion block, which I guess is better in some way than the other block I tried. I'm hesitant to keep allowing doctors to put needles near my neck at this point, since the risks are not worth it at this moment. I am back and forth with this in terrible flares and am desperate for relief. It has been very agonizing dealing with this clinic also. He then said yes he will write a script for a patch, never sent in, then after leaving a voicemail still never resolved this for me or called me back. So I go back to my buff Google for links again which informed me about lidocaine patches, capsaicin cream, lidocaine spray, compression garments and this forum and will go from here to help myself. No one knows CRPS better than t.hose living with it, so I'm hoping to get good input here.

I am wondering how others delt with the difficulty this can have on raising children and having a marriage. Has your spouse been supportive or made negative comments to you about the disability?

I just ordered compression garments to see if it will help my arm and hand pain. So far the glove helps, but any others suggestions and comments are welcomed, too. I'm still waiting on the sleeves to arrive so we shall see.

Im sorry anyone has to suffer with this, but I mainly just want to know that what I'm going through is validated by others and that I'm not alone in this. No matter how much explaining I have done I do not feel like anyone out there actually understands.

Thanks so much for listening! I have so much balled up stuff to talk through with people about this who understand.

Angeline

Hi Angeline

Welcome to NeuroTalk :).

I have no personal experience of CRPS but hope that you will find other members of the community both knowledgeable and supportive about it.

Best wishes.

Since 1980
 

Well doing well except this last year found out I can’t take nasids because of kidney problems cause because of there use had nerv block done in January Doctor counted up how many he has done for because was retiring 170 an still going strong if given enough time I always hang in there

I avoid most nsaids too due to stomach issues. I am able to do celebrex but that's about it. I so wish the blocks had worked for me but sadly I'm left with a med cocktail and a lot of pain.