Hey everyone I'm a 31 yr old woman I've had Rsd going on 2 years now its getting much worse . Especially in warmer temps. I have been to several neurologist none have helped or they act like I'm waiting their time.
The pain is so unbearable I can't walk most times I'm stuck in bed from the severe burning & throbbing in both my legs & feet which has also spread to my arms/ hands. I don't know what to do anymore or where to go everyone has a 2 yr waiting list. I also have a young daughter to take care of which I need someone to help me all the time. That is why I joined this site in hopes of getting some help or pointed in the right direction. If anyone has any information you could offer me of a doctor I would greatly appreciate it. I'm in the philadelphia area thanks

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 my name is Steve and I am 46. I was diagnosed with RSD in 2010. It took me 20 years of doctors visits until I went to a neurologist in Philadelphia PA.
My RSD caused me to lose my job as a nurse. I am on full disability. I can walk very short distances and for longer ones I have to use forearm crutches. The pain in my legs and lower back is bad at times that it takes my breath away.
I have pain in my hands and I get stiffness in my fingers my back and legs.

One of the best therapies for myself (self therapy) is kayaking. I go kayaking every other day for a few hours, it helps me get some exercise. I love to be in nature and this helps me relax.
I was going to my doctors for Lidocaine infusions and would have finished my treatments this past week but I received a call from my doctor and they told me that Medicare would not pay for the treatments any more.
My faith in God is really strong and I know that with him I am able to get through anything.
I hope to have conversations with a lot of people on here, I believe that if we ban together we can get through anything.
Steve

Steve my faith in GOD is what has got me this far! I was diagnosed 18yrs ago and everyday I wake up it is through the Grace of GOD! LISAR624

Hello everyone,

I was diagnosed on my 13th birthday with CRPS Type 1 (formerly RSD) in my right foot. I had a soccer injury that involved a girl twice my size crushing my foot and then hitting that same foot a few days later. Looking back, I was always very sensitive to hot and cold and pain.

We went in for 2 MRI's, 3 X-rays and a few other tests thinking it was broken or i had torn a muscle, ligament or tendon. At this point it had only been a few weeks and we went to my pediatrician. Her husband, an orthopedic, had actually just talked with her a few days ago about "RSD" and some symptoms. So she sent me to him. My foot was cold, I couldn't walk, my foot turned blue, and i could sleep from the pain. He took one look at it and told me it was RSD and immediately put me on amitriptyline for sleep. That summer I relearned how to walk at the beach, per his suggestion as sand is easier to walk on and swimming would help. It was painful at first, but after a few months, i was able to walk again.

Honestly I can say I am very very fortunate to get an early diagnosis, at the time, my Dr was surprised since I was so young, but still I am glad I got treatment. i still have flair ups after injury (considering all the times Ive had them) but instead of medication I got to either my acupuncturist or my acupressurist and constantly rub or touch the area to desensitize it.

Just thought I would share a little bit of how I ended up here and who I am. I am married. I have two grown children from previous relationships. I am or was a truck driver for 4 and 1/2 years. I was driving a bus at a well known Christian University. This is where I was at when I fell in the parking lot going down to the lower bus lot. This fall sprained the inside of my right ankle and tore the ligaments on the outside of my right ankle. I hit so hard on my right knee that It caused patella femoral maltracking problem, bursitis, chronic exertional compartment syndrome, and the MRI also showed a entrapped nerve in my knee. This is what caused the CRPS. Weather it was the damage to the ankle or to the knee that actually caused it, I don't know. I fell mid DEC. and only got a little better. It wasn't until I had the emg done in the first part of March that CRPS was even diagnosed by a orthopedic doctor ( not my doctor) in another city. I had to wait till the end of March to actually hear it from my doctor. Still waiting on the Pain Management Doctor don't get to go see him until Mid June. I so enjoy the waiting game that certain organizations like to force people to play. I have had a whole host of problems arise from this. Panic attacks, blood pressure issues, cycle problems, and of course spreading. I now feel this in both my legs and arms, I even feel it in my body. The newest thing is now my sugar likes to drop and make me sick. This is all new to me and have never had these kinds of issues. So now That I have shared my ugly story. What is next?

I am so sorry about your fall causing CRPS. I know how awful that is. I was lucky and only got PN from injury.
While you are waiting for pain management, look up Ketamine infusions. This is the latest being done for CRPS and it has a good track record. Hard to find places in the US that works with this. Tampa Bay hospital is one of them. This Ketamine has had remission reports, through JAMA which is a medical journal with articles from around the world. This mag. keeps up with the latest in research. You might want to ask you doctor when you go see him. If he is has education about this, he may recommend something like this. I wish you all the best. ginnie

Reading everyone's story sure helps and sounds so familiar! I have never had problems with my body like I've had since getting RSD 18yrs ago! I was looking at your issue with sugar dropping and I have that same problem. When I see my Dr. on my next appt. I am going to ask her about my RSD and issues with my health! Thank you LISAR624