[krank]

I just found this forum and I am so thankful for it. I was diagnosed a year ago with crps1 in the right ankle after a work injury . I have had five epidurals, aggressive PT and have been on neurotin 1800mg for the last 6 or so months. It looked like I was going into remission until about two weeks ago I felt some of that needles and pins thing going on and it didnt stop. The next I knew the little demon came back with a vengance and has started to climb up my leg. I have been eating vicodin like candy. My PM wants to install an SCS. A boston scientific model. Has anyone heard of this type and is there any other treatment (beside drugs) that can help ?

[loretta]

Originally Posted by krank

I just found this forum and I am so thankful for it. I was diagnosed a year ago with crps1 in the right ankle after a work injury . I have had five epidurals, aggressive PT and have been on neurotin 1800mg for the last 6 or so months. It looked like I was going into remission until about two weeks ago I felt some of that needles and pins thing going on and it didnt stop. The next I knew the little demon came back with a vengance and has started to climb up my leg. I have been eating vicodin like candy. My PM wants to install an SCS. A boston scientific model. Has anyone heard of this type and is there any other treatment (beside drugs) that can help ?

Hi Krank and I'm glad you found us too. Support is so important. This forum if full of caring and helpful fellow RSDers. I personally have had RSD 14 years, but had two remissions during that time after having a lot of physical therapy, massage therapy. I got it following surgery, frozen shoulder, remission, then it went to the other side, more therapy, remission, then my left hand from water skiing, diagnosed with RSD, therapy It was 4 years before diagnosed with RSD. My left hand is permanently partially paralyzed-was given wrong diagnosis and didn't get therapy soon enough. I now have it full body like so many on this forum.
Though difficult, most will agree, keep moving. My left hand is the only limb partially paralyzed. I've had had a LOT of therapy and continue to do it myself. Swimming, water therapy have been the best for me. My hand therapist also put me thru desensitization. That is critical in the long run.
Desensitization is really important. The therapist puts your limb thru different fabrics, textures etc. I also did this at home dailey. You take like 6 plastic bowls and put cotton balls in one, sand in another, coffee grounds, rice, popcorn kernals, Run hands and feet thru these different textures. Many of us are critically disabled because of sensitivity.This helps so much.
I am going to try HBOT. My Dr. has two clinics that just opened and each of them has HBOT. That Hyperbaric Oxygen Chamber. I would caution you regarding SDS treatment. Some like it, and others have gotten worse, more spread with it. I tried acupunture, and the needles were NOT good for me.
The last 5 years I've had a wonderful phychiatrist, neurologist, and pharmacologist. He has helped me so much to mentally, emotionally adjust to RSD. He understands this disorder and has adjusted meds that have helped.A lot of us have sleep disorder, I started a drug, seroquel xr 300 mg. he just finished a 200 person trial study. The restorative sleep has helped me so much with less pain. I sleep 8-9 hours and was able to cut my vicodin in half.
Anxiety is an issue with a lot of us, and when i started anti-anxiety med lorazepam, it helped me a lot, because it calms the sympathetic nervous system.With the new sleep med, I also was able to cut the anxiety med in half. Anti-depressants work well for nerve pain-I take cymbalta. RSD is an autonomic disorder, so if affects internal organs that are involuntary. I have high blood pressure now, and am on 2 meds. Everyone is different and react differently. Does your Dr. have experience with RSD. I would encourage you to read read read on this forum and also RSDSA on the web is really good.Go under Support and you'll find a place for your zipcode and you'll get a name and phone number to your closest RSD support group. They can be very encouraging, and you can find local Drs. that others have tried and like. Another website that is very informative is rsdrx.com Dr. Hooshmand is retired now, but his website is still up. The part called puzzles is 140 questions from RSD patients and his answers- very good.
Distraction is something a lot of us use. I like reading, researching, Warm bath with epson salt, scented candles, natural essential oils, like lavender you can put them over little candles, the scent is calming. Music has a wonderful calming effect. I love tennis, so am following the US OPEN
Remember to ask your Dr. about driving while taking Vicodin. My Dr. gave me so many hours for not driving after taking Vicodin.
There is a lot of information about RSD and autoimmune. So I eat healthy,fresh fruits and veggies. Also take immune boosting vitamins.
You'll know the triggers that put you in a flare, so try to take care of yourself. When I get the flu or chest cold, I'm sick for a longer than normal period of time.
You mentioned you were injured at work. There is no cure for RSD. WC in some states have lifetime medical benefits. That would be a very good thing to have. The meds are expensive and treatments are ongoing. Many on here choose to have an attorney to help them thru the red tape.
You'll find a lot of warm, caring friends on here that will be glad to be of assistance. I'm very sorry again you have RSD. Remember, stretching, massage, and proper physical therapy can keep you mobile. Take care, loretta

[AintSoBad]

Originally Posted by krank

I just found this forum and I am so thankful for it. I was diagnosed a year ago with crps1 in the right ankle after a work injury . I have had five epidurals, aggressive PT and have been on neurotin 1800mg for the last 6 or so months. It looked like I was going into remission until about two weeks ago I felt some of that needles and pins thing going on and it didnt stop. The next I knew the little demon came back with a vengance and has started to climb up my leg. I have been eating vicodin like candy. My PM wants to install an SCS. A boston scientific model. Has anyone heard of this type and is there any other treatment (beside drugs) that can help ?

Howdy Krank,
Before you carry on, you might want to get a good second opinion?
Are you near a university hospital?
If you can, get to the cheif of neurology.
Ask your doctors hard questions! See if they have experience with RSD, and what kind?

This is a "Tough Row To Hoe"!

So, be sure your doctor(s), are willing to go do the "farming" with you!

Some get frustrated, because improvement can be slow. (It can be difficult to keep it from spreading).
So, You must take command of your disease.
Settle for nobody, but the best!

Fortunately, RSD is not as little known as it was when I got it ( 83 ).

It took me 7+ years for a diagnoses, and that came from my chiropractor!
Then, a couple more years, for some relief.

I was put on methadone, and I'm on it til this day.
Along with other things.

So, some days, you're going to need to pull your 'boots' on, and get out to some doctors!
And, you may meet some who aren't up to spec.

Jumping into an SCS is quite the leap.
What are you current meds?
Any other things going on besides the RSD?

Unfortunately, I don't know of anything besides drugs, that can help.
Of course,
It is a "Use it, or Lose it, disease".
So, keep moving!

Keep in touch.
We're all here for you!


Pete

[hope4thebest]

HI Krank,
Welcome to the boards! You have found a site that has a caring, informative and supportive community and people with varying degrees of RSD

Your profile reads that you enjoy the outdoors!! I know this is a tough diagnosis to have, especially in the limb, when you'd rather be camping, hiking through the woods, and looking for a good fishing spot..I see you like to fish! I like to be in nature as well, hiking, exploring beaches...walking through the redwood trees..

I was diagnosed about a year ago, too, although I know I've had it for longer..mine is a work injury to the left/foot ankle with subsequent surgery (injury in August of '06, and surgery in February '08)..RSD made it's home in my left foot and lower limb, and is travelling over to my right lower limb..my walking is limited ! Needless to say I am under the 'authority' of W.C. but thankfully, I am able to realize their goal is financial, whereas my goal is optimal treatment and healing!! Result: conflict!!

I still work and take neurontin and have declined other meds (for as long as I can take it). (the reality is that I fear meds.........I am a self-confessed 'fraidy cat....) plus the side effects hit me hard..
My Pain Management doc wanted to 'install' a spinal cord stimulator very early on, and I declined that, too. She was not happy with my independent decision...She even made me feel somewhat guilty.. (oh well, it's my body..)
I did some homework and research and got the full story on SCS's. While it has helped many, it also comes with several risks, especialy with RSD. I suggest you scour this board and others for information, and then make an informed decision after you have completely educated your self. It IS your decision.

You write that you thought you were almost in remission! But then it started to creep back..what involved the turning point to where you felt the symptoms again? Was the physical therapy too aggressive? Were you overdoing it with your foot and walking, etc? See if you can remember the circumstances of when it came back!

I have found meditation and relaxation techniques to be INVALUABLE..especially those geared toward chronic pain...I had a terrible burn flare all night last night from over-doing it in aqua therapy yesterday, and I made it through because of those techniques..

Keep in touch,Krank ...wishing you some solutions that will help!!

Hope4thebest

[dreambeliever128]

I am on Methadone and finally had to take some this afternoon and put on a Lidocaine patch. My RSD was acting up yesterday in my arm and hand and right side and I put off taking any meds but today it was coming out in my left leg and foot so I had to give in and take my Methadone. I love it. I only take half of a 5 mg. but it helps a lot.

As far as the SCS, others on here will tell you their story of them and how they are helping so you will get an ideal about them. I know of 3 people around here that have had them and they are now off or out. They caused spread in all 3 of them.

I also get Lidocaine injections. I have for several years and they do help. It might take more then one but they sure worked a miracle on me.

I have been in remission for quite some time but the change in the weather or overdoing things brings mine out.

I am sorry you are having to go through this but you have come to a good place for support and lots of knowledge.

Welcome,

Ada

[bobber]

Krank
I agree with "aint so bad".....get another opinion,,,an scs is a major step,,i was told it was my next step this month,,,but as for me,,im gonna wait,,I'll let you listen to other views here,,alot of people with them,had major spreads and infections,,but there are a few with good results,,,try to see if you are in SIP or if your still in SMP,,that in my personal opinion has alot to do whether it will be good or bad,,,most of all,,you must excercise,,i aqua jog,,,keep the affected limb moving,,,this is a must,do what you can ,when you can,,,,pain meds are ok,but try not to get sucked into the vortex of useing it to the effect of depenence and then not wanting to get up to exercise,,,,everything in moderation,,,give us some more info and ,,pray to the ultimate physcian who is Christ Jesus,,,,makes a big difference,,,,,,,,,pm me if you need me,,,,best of luck and i hope you get another remission,,,but remember,,exercise will push the beast backwards,,,,,,,,,bobber

[wildberry2277]

i know what a SCS... Spinal cord stimulator.. I actually had great results when sleeping with it. During the day i was very natious and sick to my stomach... But being able to sleep is wonderful... I am sorry that this little devil came back..I hope u find relife sometimes soon..

[yiisd]

Originally Posted by krank

I just found this forum and I am so thankful for it. I was diagnosed a year ago with crps1 in the right ankle after a work injury . I have had five epidurals, aggressive PT and have been on neurotin 1800mg for the last 6 or so months. It looked like I was going into remission until about two weeks ago I felt some of that needles and pins thing going on and it didnt stop. The next I knew the little demon came back with a vengance and has started to climb up my leg. I have been eating vicodin like candy. My PM wants to install an SCS. A boston scientific model. Has anyone heard of this type and is there any other treatment (beside drugs) that can help ?

I've had RSD for 7 years. I was treated, as an inpatient, in a rehabilitation hospital for several months. I had nerve blocks and everything else that they wanted to explore on me. NOW FOR THE SPINAL CORD STIMULATOR: I have RSD in my Upper & Lower Extremities - therefore I would need two SCS's. I don't want that. I would prefer a medication pump implanted in me that can be filled with different medications and the dosages adjusted -- but I don't want anything surgically implanted in me. These things have batteries, they become dislodged from their appropriate place.
IF, I REPEAT IF, you can get over the stigma that is associated with taking narcotics for the rest of your condition's symptoms here is what works VERY WELL:
Tell you doctor you want these type of drugs:
Morphine Sulfate Extended Release ( MS Contin CR )
Morphine Sulfate Immediate Release (for breakthrough pain)
An Anti-Seizure Drug - I take Klonopin 1mg BID
An Anti-Spasmotic Drug - I take Flexeril, but there are many reasonable priced drugs
An Anti-Inflammatory Drug - I take Lodine - it works & is inexpensive.

Take these medications routinely. It does not matter if you have pain or if you feel great, keep the level of these drugs constant in your body and I believe you will notice a better quality of life. You will start off with a VERY small dosage of Morphine and the chances of becoming dependent are not as great as the chances of you suffering needlessly with the RSD unnecessarily. Hope this helps.. GOOD LUCK!

[yiisd]

Originally Posted by krank

I just found this forum and I am so thankful for it. I was diagnosed a year ago with crps1 in the right ankle after a work injury . I have had five epidurals, aggressive PT and have been on neurotin 1800mg for the last 6 or so months. It looked like I was going into remission until about two weeks ago I felt some of that needles and pins thing going on and it didnt stop. The next I knew the little demon came back with a vengance and has started to climb up my leg. I have been eating vicodin like candy. My PM wants to install an SCS. A boston scientific model. Has anyone heard of this type and is there any other treatment (beside drugs) that can help ?

Have you tried physical therapy UNDER ANESTHESIA? If you haven't, you should ask your pain management doctor if that might be helpful.
I had this for one month and I now have some (very little, but some) use of my hand & fingers. After the surgery, the orthopedic wanted to amputate from the wrist down because he said it would not function & would be in the way. I chose the Inpatient Intensive Physical Therapy Under Epicural Anesthesia for 4 weeks. It was painful & a lot of work ..... but I have both hands and 10 fingers. I would call that success. Of course I still have the pain & everything else that goes with RSD, but I am blessed to still have my extremities.

[yiisd]

Originally Posted by AintSoBad

Howdy Krank,
Before you carry on, you might want to get a good second opinion?
Are you near a university hospital?
If you can, get to the cheif of neurology.
Ask your doctors hard questions! See if they have experience with RSD, and what kind?

This is a "Tough Row To Hoe"!

So, be sure your doctor(s), are willing to go do the "farming" with you!

Some get frustrated, because improvement can be slow. (It can be difficult to keep it from spreading).
So, You must take command of your disease.
Settle for nobody, but the best!

Fortunately, RSD is not as little known as it was when I got it ( 83 ).

It took me 7+ years for a diagnoses, and that came from my chiropractor!
Then, a couple more years, for some relief.

I was put on methadone, and I'm on it til this day.
Along with other things.

So, some days, you're going to need to pull your 'boots' on, and get out to some doctors!
And, you may meet some who aren't up to spec.

Jumping into an SCS is quite the leap.
What are you current meds?
Any other things going on besides the RSD?

Unfortunately, I don't know of anything besides drugs, that can help.
Of course,
It is a "Use it, or Lose it, disease".
So, keep moving!

Keep in touch.
We're all here for you!


Pete

Pete, Thanks for your candid response to Krank. I agree with you. I have had RSD for 7 years, gone through the nerve blocks, etc.; but when all is said & done - Morphine is the ONLY drug that allows me to live anything that resembles a normal life.
MY PROBLEM is: I Can't Find A Physician In Houston Texas That will write the Morphine Prescriptions (worried about losing their licenses). I find one, he/she will write the RXs for 6 months or so & then go straight for the SCS or Implanted Pump. I Do Not Want Surgery When I have Found a Combination of Drugs That Works! Any Suggestions on this battle?