NeuroTalk Support Groups - Another day another problem.

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Another day another problem. (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/126382-day.html)

Another day another problem.

As most of you know me around here I am a 28 year old female with RSD of the left leg and foot. During one of my SCS implant surgerys they positioned my neck and it was causing headaches. So know not only the headaches I was having pain in my neck and arm along with numbness on my right side. When going to the ER they diagnosed it as a pinched nerve in the neck. They did no exrays. As I could not get my pain doc to take a look at it, I decided to see the chiropractor and they did exrays. Not only the swelling in my neck has a nerve pinched but they saw on it that I have degenerative disk disease in my cervical spine. She said it was very rare in someone my age unless they had had a serious injury to my neck. I am so down right now it seems that everything that is hurting me there is no true cure only managing the symptoms. I have not had any kind of injury except for when they positioned my head during surgery and it caused them headaches. My pain doctors nurses just kept blowing me off but they finally talked to the doctor and scheduled an MRI on the 6th. Them crazy peeps forgot I have a SCS so I had to call them back and so now they have changed it to a CT scan with dye. I just don't know how much more I can handle and why is my body falling apart. Any body with the experience of degenerative disc that can give me insight on what this is going to be like in terms of the long run. Thanks good or bad I just don't know much about it and would like to hear others experience.
Thanks, Angela

Angela,

I hear you. I am 20 years old and have had this for 2 years. It is in my whole right side, leg, foot, arm, and back. I completely understand about feeling like your body is falling apart, and you just keep getting punched square in the face with one thing after another. I have had my share of MANY health problems prior to rsd, and MANY after RSD. Its like, finally when we can get 10% of a hold on life, we get knocked down again. For you its with your neck. Don't give up. If you have to, find a different pain doctor that will listen to you. I used to have a doctor that didnt listen to me, and it made me feel hopeless, stupid, and like what I was saying they thought I was making it up. Find someone that will help you all the way, and just keep talking to us on here. :) hang in there angela.

Hannah

Gosh I can top you both.........I have had Fibromyalgia since I was a child......I felt like an old lady even when in junior high. Once PE was started & required that was all she wrote as far as being in constant pain went. Even as a young child I was in pain as I had cramps in my legs so bad they would have me curled up in a corner of the couch crying. My Mom even took me into a doctor to see what was wrong & that was back when you only went to a doctor if you close to death. I am talking in the late 50's to early 60's as I am now going to be 57 July 31st. The doctor of course, dx'ed me as having "growing pains". I don't even know if they even use that term now days for any reason. Talk about a body failing one...............and it seems it has been down hill ever since as far as pain goes.

I am relatively healthy for my age. I only take singular & Rhineacort nose inhaler for allergies & niacin & simvastatin for messed up cholesterol, too high bad stuff & too low of good stuff. Other than that I take meds for pain & Evoxac for dry mouth from Sjogrens. Oh I do take calcium for osteopenia. That is it.

I know what you gal's are thinking & going thru. All I can say to you both is hang in there. Good things come to those who wait, they say. Altho, I am still waiting..............LOL

DebbyV

Angela -

A few years before I had RSD, I had pinched nerves in my neck, due to spinal stenosis and exacerbated by exercise, whether swimming laps at night at the gym (then the great joy of my life) or even running on a treadmill.

After years of CRPS, I can say that, bar none, the radiating pain down my arm was the sharpest pain I have ever experienced.

There is a cure, but it involves finding either an expert "interventional radiologist" or an equally qualified ABPM certified pain medicine specialist: and given the choice, I would go with the interventional radiologist.

Under flouroscopy, and with a local anesthetic, you get an epidural steriod injection, delivered through a four inch needle at the front of your neck. (I know, real pretty, but just like dinosaurs, we have too much armor plating on the back.) For me, it took two applications, a week or two apart, to cure it, but then it was gone! That is until a year later when I did some imprudant excercise again, but then it only took a single shot to knock it out and that was 11 years ago.

But again, this is an extremely delicate procedure, which should probably be attempted only at a university hospital or a private clinic of equal or higher standing. E.g., the guy who gave it to me at UCLA said he would never train his residents in the procedure. ("I would be wrapping my hands around theirs the entire time.") Board certified clinical fellows only need apply.

Mike

I don't have this experience but am sending thoughts and am so sorry you are going through so much. I know this is hard to handle on every level. I know the no cure is hard but hopefully with proper management you can get a full life back. I hope your CT gives answers so you can get relief. I do wonder if you need to see someone else cause one the pain doc office blowing you off and then ordering an mri when you can't have one. It does not sound like they are on the right page. I am not sure if it is possible though for you to see someone else but just a thought. Hope you feel better.