New Kid on the Block
 

Hello there...new to this forum/community. I was recently diagnosed with RSD by my Bone/Joint Specialist. My original injury was sustained, to my shoulder, almost exactly 6 months ago. My symptoms include alternating burning pain in my hand, and, at other times, a cold sensation accompanied with sensitivity to touch in that area (and it, then changing to a purplish color). I have low grade fevers, insomnia (even when I take a sleeping pill), aching pain, dull pain, heavy feeling type of pain in my shoulder, and, intermittent tingling sensations that run to my bicep, elbow, and down to my hand. Just recently, I have been awakened, in the middle of the night, crying, unable to go back to sleep, due to an incredibly intense stiffness/muscle spasms in my lower back that are very debilitating. Seemingly, lately, with worker's comp, in the midst of decided whether to continue to approve or deny continued physical therapy, I have had far more "bad days" than "good days." What I would call, for me, and "average" pain day, would be the pain level at about a 6. However, I think my pain tolerence, along the way, over these months has increased. It has been so limiting to my life...in every single way. I am unable to work, had to terminate one job already due to this injury, and, most days, over these six months, I have been unable to leave the house for more than an hour (just running simple errands) before I have to come home and "listen to my body", and not what every other part of my spirit wants to do, and be in pain for the rest of afternoon and evening. It has been emotionally devasting, obviously as well as a byproduct of this pain that will not cease, nor offer much relief of symptoms.

So, any answers to these following questions, and or any feedback, is incredibly welcomed, as I feel ,currently, very alone in this experience I am only beginning to digest and or understand...
do these symptoms, in your experiences, sound like RSD? How can I be sure?
What medications seem to work well/other treatments have worked well? Currently, I am taking Neurontin(aka Gabapentin), 500 mg, three times a day and Hydrocodone "when needed."....though I feel if I actually took it, "when needed," I would be popping pills all day long. I only take that medication when the pain is nearly unbearable.

I am seeing a pain management specialist/RSD specialist early next week..but, I would love to have insight/input, from anyone out there, that may be useful to know, to take with me to this appointment...even what questions I could ask...

I appreciate your taking the time to read this, and ANY feedback/ideas anyone has to offer/say/suggest....

Hi,
 

Welcome to the forum.

It does sound like RSD, with the symptoms you have. Have you had any blocks yet? If not, I would suggest talking to your Dr. about Stellette Gangleon Blocks.
Also, Physical Therapy of some type will help but don't let them having you lifting weights or doing anything that YOU feel you can't do. I think massage therapy and hot water therapy is great.

There are times I think that no meds do enough for RSD anyway. I am on Methadone and when I go into a flare, I could take all of my pills and it won't effect the pain. Others are taking other meds that will come on and mention them to you.

Another thing I think is very good is the Lidocaine patches. You can put 3 on at a time for 12 hours on and 12 off. They do seem to help a lot.

You do feel alone with the RSD when it is in full swing. That's how I felt until we got it under control. I said that hundreds of times to my Dr. even though he never left me alone with it. The main thing is to find a Dr. that is willing to do all they can to help you. Even if you like a Dr. and he is not doing you any good, that's when to start looking for others if you can't get him or her to get on the bandwagon with you. It is a long drawn out job of getting the RSD into remission. Mine is for the most part.

Working is very hard to do with it. I sure can't and I consider myself in remission as I said.

I am so sorry that you are going through this. I hope you will hang around.

Ada

No, I have had none of those treatments that you mentioned. Thus far, all I have had is a tenative diagnosis, a referral to an RSD educated/pain management doctor, physical therapy (I, thankfully, have a wonderful physical therapist always tells me NEVER push "through" the pain...to stop, when it hurts), and the medications of Neurontin and low dose Vicodin.

Thanks for the info. Any info and feedback is more than welcomed, I feel I need as much support and information/ideas as possible.

Hi jcrew, I am taking those same medications. Its better to keep the vicodan in your system rather than only when it is unbearable. That way your pain cycle doesn't get away on you. The vicodan really doesn't do much for RSD pain. I have had two nerve blocks to date. The last one took the swelling down and things felt better for awhile.

I work full time and find it hard to do parts of my job these days. I have been indenial of my stuff and just now am trying to figure out how to make RSD fit into my life. As it wants to have more than I want to let it have.

I have had it now for three almost four years. I have read that within the first few months of having it you have much better chances of it going into remission. So I would ask about the nerve blocks for sure when you go to the Dr. this week.

I am starting pool therapy and I feel much better when I can move around a bit more. I am hoping that this will give me some relief for awhile and get me more mobile than I am right now.

I am exploring getting some accomodations for work but than I am worried about doing too much of that. I don't want to be let go by the company for "other" reasons...

more questions than answers
 

[vanityfaire,

Thank you, as well, very much for your response. It's unbelieveable, to me, how much better, emotionally, it feels to have found a site like this, where others can come together through the sharing of experiences...especially because for me, as I am sure for all of you as well, it is something very difficult to understand for those who aren't personal experiencing it/have personally experienced it for themselves.

So, even with taking the Vicodin, on a regular basis, in order to keep it in your bloodstream, it doesn't do much for your pain? What other pain medications, orally, can be taken, or have others have success with?

Do the blocks hurt? Maybe I am a coward when it comes to pain, but, for me, I know the arthrogram I had done, as well as the NVS tesing for extraordinarily painful. How does the nerve block work/how do the docs perform it? Once done, do you have to return to the doc for further blocks every so often, or, is it a one shot deal?

Hi,
Welcome to Neurotalk.
I have had 1 nerve block (a guanethidine nerve block) and it caused me to "lose my balance", my bad leg shoots out in front of me. I had my nerve block done whilst I was asleep (but most adults have theres done whilst they are awake) The best nerve blocks to have from what I have heard are Stellette Ganglion blocks and Epidurals
I hope these links help you:
Epidurals - http://www.rsdrx.com/rsdpuz4.0/puz_13.htm
Stellette ganglion - http://groups.msn.com/TheRSDNook/sgb.msnw
Most people have to return to their PM doctor when the pain comes back for another nerve block
Thanks

Hi,
 

I was put to sleep for my SGB. It wasn't bad at all. The only side effect I had was I talked like Donald Duck for awhile. I laughed about that one. I had a brother that could do Donald Duck and he use to try and teach me and I couldn't learn. It took a shot to let me do it. LOL

Usually you have a series of blocks. Each person here seems to have a different number they had done. I had 3 done and it helped with the pain, swelling and color change a lot.

I believe some PM'd do the blocks now but if they don't call around and find an Anesteologist that does them. Once the RSD is in remission some people will go back for blocks when they find it coming back out again.

These boards are nice. We learn everything we need to know around here about what to do with the RSD. As I said before, it's finding the right Dr. that will doing it. It keeps a person that lives alone company on the lonely days and nights too. It gives people with no family a family to talk to. We have fun here too. We make friends. Some talk on the phone even. Hope you stick around.

Ada

Hey JCrew...
 

Welcome to the Family....I am Heather and I have full-body RSD (I feel like I am at an AA meeting right now:)). It started in my rt. foot in Jan 06 and spread quickly to my lft. foot. (within days)...I have had 40 plus lumbar sympathetic blocks (for your lower half of your body), a few stellate ganglion blocks (for the upper half of your body), and a Spinal Cord Stimulator Trial.

The SCS Trial was awful for me! When they removed it I started noticing the burning traveling up both my legs within a few day. Within 2 weeks I had Full-body RSD. I even have it in my face. Right now it just feels like a bad sunburn and it feels like acid burning when I cry:(.

I wanted to tell you the meds that I am on because it is a lot. Please feel free to ask me any questions regarding anything...

Topomax 100mg - 1 X day (for muscle spasms, tightness, and burning)
Klonopin 2mg - 1 X day (for sleep)
Fentanyl Patch 75mcg/hr - 1 X 48 hours (for pain)
Roxicodone 15mg - 3-4 X day (for pain)
Prozac 40mg - 1 X day (depression)
Ultram 50mg - 3 X day (for pain)

This combination works well for me. I need to function, because I have a 7 week old baby. Some people don't need this much or any of this.

Stay Strong and I am here if you need anything!

:hug:
Heather

to heather
 

Heather,

Thank you for being so open about the treatment you have received and or are receiving. It helps a lot as knowledge is power to some degree.

Some of the meds you are taking I am familiar with, but there are two I know nothing about and was hoping you could explain them to me (ie., what they do/their specific purpose).
1. Topamax (I know it can be used, sometimes, for migrains and as a mood stabilzer...)

2. Roxicodone (it sounds, obviously, like a narcotic pain reliever?). I take a low dose of Hyrdocodone. Is it stronger than that (so I hope)?

Thank you, and everyone, for being so kind and open in sharing your experiences. From what I have experienced, just until recently, this disease can be not only painful, but very isolating. At times, it's hard to say which is worse, the pain, or the emotions attached to it and all the surrounding circumstances.

No problemo...
 

Yes...I take the Topomax for Migraines also...those came later and the Topomax works wonders. It's probably helps me more than any other drug that I am on.

Yes, the Roxicodone is oxycodone, it is the highest form. My tolerance is soo high it's terrible.

Also, you are right about the disease being isolating...but you have the power not to let it. That's why we are here. You need people that understand. If you truely have RSD, you are going to run into a lot of people that just don't understand or that don't believe you.

Like I said, feel free to ask away!

Heather