I have just recently diagnosed with RSD, 6 months after my injury. And, by all measures, that I have read about, my RSD is starting to spread. The injury began in my right shoulder, and is now effecting my right bicep area, elbow, both sides of my neck, and, just recently, my lower back (which wakes me up in the middle of the night, in tears, because it feel not only stiff, but stuck).

I am seeing an RSD specialist/pain management specialist early next week. Presently, I am taking low doses of Hydrocodone and Neurontin (which, on a good day, puts my pain at a level 6). Which, to me, has become normal...

my questions is/are...are gangleon blocks painful? What does this involve? Also, I have read how this disease affects the limbic system, which is in charge of many things, but namely memory and emotions. I take Adderall everyday for my ADHD which works, in conjunction with the limbic system to sustain a chemical balance to allow me to focus, concentrate, regulates my moods, etc. Does anyone know if this disease would or could affect the effeciency of my Adderall? It doesn't seem to be working "right"..

any ideas/answers/feedback would be so greatly appreciated and put my mind at ease a little in having the answer(s) (whether good or bad)

Hi there,
I am so sorry about what you are going through ((hugs))
Please let me introduce myself:
My name is Alison, I am 12 years old and I suffer from RSD in my left leg and right arm. I first developed RSD in my leg on the 16th March 2007 after an ankle sprain. After 4 months of physiotherapists telling me to stop imagining the pain, I was diagnosed with RSD, I felt as though my life had just ended. Immediatley after diagnosis my PM doctor performed a "Guanethidine nerve block", which caused me to lose my balance (I can't walk my leg shoots out in front of me)
2 months later my PM doctor prescribed me "Amitriptyline" to try and help me sleep but I suffered from a nasty side effect of "blurred vision", this resulted in a knock to my right arm. My arm began to swell, I got the burning pain, colour changes etc. 2 weeks later, I was diagnosed with RSD in my arm. The RSD in my arm has been into remission, but the RSD keeps flaring up when the weather is cold etc.

I hope this link helps you:
http://www.rsdrx.com/rsdpuz4.0/puz_105.htm

If I can help you in any way please let me know
Thanks

J Crew...

You are under local anesthetic when they perform the Stellate Ganglion Block. They have to sit you upright and they use a fluoroscopy guide, like an ultrasound, to see exactly where they need to insert the needle into your neck area.

The pain is very minimal...You wake up with a tiny bandaid like you just had a shot.

I would suggest getting in contact with your Dr. ASAP, because it sounds like yours is spreading quick like mine did. He should see you sooner. If he is an RSD specialist, he should understand.

Hope this helps!

Heather

so, they (they being the doctors) have to put you under in order to do a block? Scary, but almost a relief too. After having had, previously, an arthrogram and NVS test done (involving multiple needles of course), it would be nice to be "under" to have any more needles involved in treatment.

so, it's normal for RSD to "spread"? Is this spreading a sign that the RSD is getting worse? Does that then make it more difficult to treat or decrease my chances of remission of any kind?

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=79

Thanks for the article, it was very informative...it takes away some of that fear of the unknown really. I greatly appreciate it. Of all the meds that you are taking, does that mean that you are "pain free", or that there is just a great reduction in your overall pain? Are these meds you will have to take for the rest of your life? How did you develop RSD? How do you afford to pay for these medications. Sorry if I am being intrusive, I am just trying to comprehend all that I can.

I got RSD from a broken foot. A large guy stepped on my foot at an Angel game in CA and instead of taking 8 weeks to heal, it took 30 weeks. It was just devastation from there.

You know, I don't know what the future holds. I am definitely not "pain free". And I am not sure what drugs I will have to take in the future. I hope to beat this RSD crap all together.

Right now, the meds and the blocks work best for me and they allow me to function. I am permanently disabled and I am on Social Security Disabilty and paying COBRA Ins from my last employer. But, I lucked out because I had a PPO through Cigna and long-term disability. So, I made out okay. Not to say that I don't wish I still had my job...I guess I kinda do with my little one...That's practically full-time...

ONE DAY AT A TIME!


Heather

Again, thank you for sharing. It, at this point in time, is so crucial for me to reach out to others for support, gain more understanding, and be prepared for good and or bad outcomes, but have the honest truth about both sides.
I, right now, am unable to work, am receiving TTD benefits (not a whole lot of money there as I am sure you know), and just sitting, in wait, for worker's comp. to re-approve my physical therapy and approve seeing the RSD specialist/pain med doctor. In the meantime, I am stuck at home all day long,
while everyone else works, watching the seasons as I am a bystander to life..just sort of watching through the window watching it all happen. And, the days can be very long during those horrible pain days. This forum is a wonderful outlet. It makes the loneliness smaller in commradery (sp). So, I thank you for sharing; truly.

What would you rate your pain at, on a scale from 1-10, on an average day?
Are you able to do all, or most of the activities that you did before this injury?

I am at an 7 on average! Today is a good day and I am about a 6...Yesterday I was about a 9. It all depends...

My husband just sold my snowboard and waterski on Ebay a couple days ago. I used to be so athletic. I can't do nearly haly of what I used to. But, I am determined to not give up! Once you give up, what's left?

My pain just started returning. I was in a remission for 9 months while pregnant. I guess 90% of RSDers that get pregnant go into remission, but soon after delivery the hormones return to normal and the pain returns with a vengeance. So, technically I just gave birth 7 weeks ago and the body take 6 months to return to normal. So, my pain should keep increasing if it goes by the books....I am prepared...BRING IT! lol

I am sorry that you are in that situation right now. I would start and apply for SSI (Social Security Insurance). It's for low-income. Check it out and other options on www.socialsecurity.gov

Good Luck Hun!


Heather

Welcome, I'm sure this board will help a great deal as you learn about the many symptoms that can change from day to day.

My pain level is usually a steady 4 or 5 but can peak to 7 or 8. I've had flair ups off the chart, once full body.

Mine started after attempting to donate blood in September of 06. Since then, it's been many doctors, many therapy sessions and now 1200mg a day.

It started in my left elbow joint, swelling up and down my arm, bicep was on fire etc. Shoulder and neck soon became effected. In recent months it has been in my lips and strong tingly feeling in my teeth. During a full body flair up it even effected my eyes and scalp. (Luckily that lasted only 4 long days)Now it is in evident on both my hands. Typing, grasping anything causes my fingers to fill with blood and swell. Painful to flex etc. Burning when cold (constant). My knee also...my lower legs swell and are discolored and shiny with very little hair growth. This certainly has spread for me!!!!!!


I, like you, am somewhat nervous about getting my first SGB done. however I know it's something that could potentially help and I'd try anything at this point.

It has been a long road for me already and I hope yours goes much smoother than mine has!!!!!

I am still able to work 12 hour days. Luckily, both my jobs are desk jobs which are mild paced and I have VERY supportive employers. But I can see on my worst days how it would be prudent to stay home!!! Then again...when I'm idle, I seem to notice the pain more. Like in the evening, I'm sure everyone here notices it more at bedtime! (Right?)

Also like you I am currently taking ADD medications to help with my lack of concentration. They do help for me! Concerta 25mg twice a day. I've done some research to see if it has contributed anything to my disease...so far I have found no other cases. It does help with the lack of concentration which I noticed more last winter when my symptoms started to appear.

Also, the Concerta has helped to keep my brain active during the day inspite of many insomniatic nights!!!!!!!! I have to force myself to eat as well...which is always nice, as I've always been a slave to food! When I do eat, I make my food count more...more greens and fresh fruits. I've recently been a fan of vegetable and fruit smoothies. (100% organic) to intake more antioxidants.

I went to the Bodies Exhibit this weekend which had live human specimens. Now, going through all this I'm curious about the body and functions! That has pretty much put me off any kind of meat...so I think I'm a vegetarian again. LOL

I've learned so much joining this forum, everyone here has been so helpful and it's such a comfort to be able to communicate with other people who are experiencing the same things!

Welcome, sorry you have to be here...but you have found the right place at least! Anything I can do...please let me know.