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

Hello & welcome,

You can copy this intro post and make a thread of your own in the main RSD/CRPS discussion section, for more views & discussion..

Here is the link to make a new thread-
https://www.neurotalk.org/newthread....newthread&f=21

The site search tool is helpful for finding specific info in past posts..
https://www.neurotalk.org/search.php

We have a Spinal & Back pain forum topic also with some posts on ACDF, the search can find those topics too.

Angeline, welcome! I have dealt with this for the past few years and my son is now 10 so not quite as young as yours but maybe I can help. I have found that it does take a toll on marriage/kids but if you band together and tackle it as a team it can strengthen the family unit. But for that to happen you need a spouse who is truly a partner in this and willing to be a little selfless at times and a good pain management doctor. I'm not really impressed with your PM's approach to be honest - just gabapentin over two years when you still have a lot of pain isn't enough. Where are you located? Maybe someone here has a better PM recommendation they're wiling to share. It may also be worth checking out facebook groups - the group CRPS is really active with members all over the world and there are some local groups too if you search for your state and CRPS. I'm in NC and the group here is fairly active. I would at least get a second opinion if nothing else.

Ok - other question re: disability. I'm still working full time but I work in IT and can do it from home on bad days. It's a total desk job (I'm an analyst) so it's been sustainable so far. If it's a really, really bad day I'll take a sick day. I could not do this without my pain management doctor though. What helps me is this regimen: desensitization exercises/therapy, lifestyle modifcations (more sedentary, ugh, and getting a full night of sleep is crucial), and meds including over the counter lidocaine patches. They really do help - Salon Pas is my favorite because it's a gel patch and while it's not as sticky as others it doesn't hurt coming off if I forget to take it off while it's still numb. Now as for meds - I've been on several including gaba over the years. But due to various issues with some meds and some that didn't work we've currently settled on this: lyrica - 150mg AM/200mg PM, celebrex 100mg AM&PM, hydrocodone/acetaminophen 10/325 up to 4/day as needed and tizanidine 4mg up to 3/day as needed. I take the as needed daily because, well, they're needed. I also do a daily multivitamin, antidepressant because well, this sucks, calcium, vitamin d and seroquel at night for anxiety related to all this. And sometimes a melatonin if I'm not tired but need to sleep or having a really rough pain day and want to sleep. These meds may or may not help you but maybe it will at least help to discuss some with your doctor.

If you ever have any other questions feel free to message me or post here, I try to check once or twice a week but somehow missed your initial post.

Hello,
I also iust signed up i have been dealing with CRPS for one year and also feel alone. I finally have a fabulous group of doctors. May of last year I cut my ring finger on left hand. When I went for stiches they saw tissue but should have sent me to s specialist to get nerve reattached .They gave me tetanus shot with a massive reaction ,lump ,swelling. Had to go to emergency to rule out blood clot. I have CRPS every finger on left hand and arm. I have gone for 3 ganglion blocks and take cymbalta twice a day. I had live jumping nerve pain for months OMG! Now anything you get has an adverse effect on progress. Was doing better with last block then got absess tooth. I do my own therapy at home after a yearof therapy. No one understands unless you live it.

Welcome KCat.

I am a little late, but welcome!