My names marissa I recently got out of the military about a year and a half ago, and I was diagnosed with RSD w/ a hip fracture. I've been living with pain for about two and half years now, and I've already had 3 nerve blocks through my lower lumbar to stop my pain but it hasn't worked and resulted in occasional back spasms.
Sometimes my pain is unbearable, but alot of people that see me and see me walk with a cane look at me funny at ask me whats wrong, when I tell them I live with pain 24/7 they just don't understand and its taking a toll on me. I should'nt be feeling this pain at 22 years old. I've been struggling with this disease and sleeping is just done, I only get about 3-4 hrs. of sleep a night.
If there is anyone out there who can help me cope with this please your advice and responses is greatly appreciated.
I just want to welcome you to the board. There are a lot of great people here. I'm 36 and have had RSD since I was 15 so I know what it's like to kind of grow up with it...not fun. I've tried all types of treatments and now have a morphine/bupivacaine pump that's been with me for the past almost 6 years. That has really been the only thing that has helped me. I hope you can find something to help you. I also hope you keep coming back here. I think you'll find a lot of support here when you need it.
It's such a shame to get this disease at any age, but in your youth, I bet it would be even worse. How did you get your RSD? Is it from being in the service? Mine started in my upper left extremity and has spread to my lower left. leg. and it is no picnic. I've had 2 nerve blocks in the the neck, and they were ordered by work comp about 18 months too late,
Might I ask what meds you are on? You really need to get some good zzzz's in order to function as a human. What type of doctors do you see? Are you on any anti-depressants? Sorry for all the questions, but the more you can fill in the blanks, the more others here can help and offer advice. As far as people staring at you, you gotta let that go. When I was first dx'd and using a cane with a wicked limp and my left arm in a claw like fixture, people used to ask me what was wrong with me. I told them I have RSD, which is like MS -- but it involves the nerves instead of the muscles, and that shut them up pretty quick. I just wanted to say hi and welcome, and we are all in this mess together. So no question is too stupid to ask, and if you nedd to vent you go girl. Aloha Skooze
thanxs for taking the time to help out I"m glad I found a site that everyone here is going through the same thing. I got my RSD in the service in my lower extremity the lower leg through the foot,ankle, lower back. I see the doc's at the VA hospital I see a resident, of course my primary care physician, and I haven't seen my Physical Therapist in awhile but I see one of those. I"m about to go see another pain specialist i saw one while i was in the military.
The meds im on are: nortriptyline for anti-depressant, and sleep aid, I also take neurontin its a seizure med yes not quite sure why they put me on that but I guess it helps nerve pain. and I take peroxicam for NSAID. but ive been on those pills ever since i got this diagnoses and they just keep upping my dosage and its not helping much. So hopefully ill get to get into a pain spc. here shortly so i can get my last treatment option which is the pain pump to put into my hip.
IM highly considering that option. But the pain just takes a toll on me, I don't know what to do about that. from being diagnosed in the military it sent my military career to the dump, i got a med board out of the military because i wasn't able to go back to training and it messed with me a little bit. And now i live with pain, and everybody thinks that its not that bad, some say well if you in so much pain why doesnt it show on your face? I say because I've lived with it for so long you kinda get used to it after awhile (somewhat). I just hate being asked what happened to me and why i walk with a cane, and what did you go through, it just brings back too many memorys that i wish would just stay dormant.
but if you have any more help for me it would be greatly appreciated.
thanxs for the help.
My RSD started originally with a fracture. Do you feel like you still have pain where your bone was broken? Or like your pain is deep down bone-like pain? Calcitonin has really been a great help to me for that. It has been written about a lot for RSD.
If you are having muscle cramping, you might ask for a muscle relaxer like baclofen or zanaflex. baclofen has worked the best for me. (zanaflex has a side effect of seeing things, and I didn't care for that part of it - plus, baclofen just worked better)
There is an older med called trazodone that is an anti-depressent that helps pain and is a good sleep med for RSD.. you take it at night. I have been unable to take all the other anti-depressants so far. I cannot take it at the dose my doctor would like, 100mg a night... I can only take half a 50mg or I get to many side effects, but it still helps me sleep and it has reduced my pain some. If cost is an issue, trazodone is very inexpensive. Does not even cost as much as my least expensive co-pay. I think a month for me is $4.07. Cymbalta was something like $200 a month - my co-pay on it was $60.
The NSAIDs have not done much for me in regards to RSD, and over the years I have tried most of them. Over the counter Aleve helps the most of all of them. It is not one of the best for the stomach, so I do not use it very often. But, when the baromoter takes a nose dive, I'll break out the Aleve.
If you don't feel the neurontin is helping, there is a newer form of it, Lyrica. Neither of them helped me. I actually had problems remembering things so bad on neurontin I could not take it (They had me on as much as 3600 of neurontin in a day)... and had terrible reaction to Lyrica..( but I have a lot of problems with medications, so don't go by my experiences.) Also, many of us have better luck with Topomax (topiramate). Kind of hard to get started on, but once you get up to the right dose, you get used to it, and I don't even know I am on anything now I have been on it a while. You read a lot of things on the net about Topomax causing this and that, but if you really read the prescribing info or ask a neurologist, the instances of those problems are really rare. I was told by my board certified neuro that it is a very safe medication long term at up to 300mg a day. I go by what he says and not what people "think" online. Between Topomax, calcitonin, and the trazodone every other day... I do pretty well. I don't take "pain medication" like morphine etc. and I still work everyday. Sometimes I wish I had the big pain meds to take, but I am getting by with out it fairly well.
You can also ask about a cream to use topically - most have lidocaine and ketamine. Mine has 6 ingredients, baclofen, amitryptaline etc in there too... but mostly it's the ketamine that is the big help. My cream has 5% but I just sent to the pharmacy with a new script for cream with 10%.... I can't wait to see how much better that is going to be. I can use it 4-5 times a day, and it works well for me. The Lidoderm patches are good, but don't cover enough area for me. I do use them during the day at work for the areas I cannot easily put more cream on (my back) while I am at work. The doctor writes a script for the cream and you have it made up at a compounding pharmacy.
The meds im on are: nortriptyline for anti-depressant, and sleep aid, I also take neurontin its a seizure med yes not quite sure why they put me on that but I guess it helps nerve pain. and I take peroxicam for NSAID. but ive been on those pills ever since i got this diagnoses and they just keep upping my dosage and its not helping much.
Yes, Neurontin is for nerve pain. If you look it up it will tell you that. I am also on it, and have seen a small improvement with that and physical therapy. The Drs. can up the doseage a lot, too... though if it's not helping there are other meds. they can try (as others have mentioned).
(((hugs)))
Last edited by MissVanessa; 01-08-2007 at 03:02 PM.
Do you have to see military doctors?? I was just wondering because RSD, was first written about in the civil war when the soldiers had to put on extra socks to protect their extremities.
The Neurontin, isn't going to help you at all. The higher the dose, the dizzier you will become. You need Morphine. Plain and simple. I used to take 4 vicoden a day, until I became so racked in pain, I was bedridden. I wish you luck with your new PM dr. There is a book called Living with RSD, and if you buy it, highlite the areas about the meds you need to take. Now it was written 3 years ago, and they recommend Neurontin. But things have changed since then. The important part is that you get started on some pain med to relieve the pain. With breakthru meds in between. Along with an anti depressant and something for the muscle spasms. Sometimes you need to let a doctor know, that this is not in your head, and until the pain is under control, you will be a car wreck. So showing your doctor what meds are available to treat this monster, will not make you look like a drug seeker, but a person who wants their life back. Hope this helps. Aloha Skooze
Re: been living with rsd for 2 and half years now 
How did you get your RSD? Is it from being in the service? Mine started in my upper left extremity and has spread to my lower left. leg. and it is no picnic. I've had 2 nerve blocks in the the neck, and they were ordered by work comp about 18 months too late,
I just wanted to say hi and welcome, and we are all in this mess together. So no question is too stupid to ask, and if you nedd to vent you go girl. Aloha Skooze
You need Morphine. Plain and simple. I used to take 4 vicoden a day, until I became so racked in pain, I was bedridden. I wish you luck with your new PM dr. There is a book called Living with RSD, and if you buy it, highlite the areas about the meds you need to take. Now it was written 3 years ago, and they recommend Neurontin. But things have changed since then. The important part is that you get started on some pain med to relieve the pain. With breakthru meds in between. Along with an anti depressant and something for the muscle spasms. Sometimes you need to let a doctor know, that this is not in your head, and until the pain is under control, you will be a car wreck. 
