I was dx with rsd/crps type 1 about two weeks ago, caused by bunionectomy on left foot two months ago. Luckily (under the circumstances), I have a great podiatric surgeon who spotted the signs of rsd quickly and sent me to the neurology team as soon as he saw problems- and from what I have read, time is essential in "our world".

Anyway, I was started on Topamax (25mg) and Neurontin (300mg), once/day and double each week (for the first four weeks). I'm also taking Vicodin for the pain.

My concern is that the pain and other symptoms have gotten worse, even as the meds have increased. The burning-type pain has improved, but the shooting pain is still terrible. It used to be pretty tolerable in the AM, when I woke up I'd actually only need 1/2 a pain pill and I'd be ok till mid afternoon...but within about a week it's gotten worse: now, from the time I wake up I'm already in pretty bad pain. and nighttime, forget about it... I take two half the time (which I never did before) and that still doesn't cut it, and I'm waking up at night when it wears off. I feel like it should be getting better, I've read such good things about these other meds I'm on, but it seems like as they help with some of the pain, the rest becomes more intense.

Also, it is spreading up my leg. It feels like there is a tourniquet around my thigh where my leg meets my hip. idk if this makes sense to anyone?? There is throbbing pain now that accompanies the shooting pain. It feels like a pinball machine hooked up to electric wires is hiding out in there.

I'm also wondering if anyone else has experienced some of these things- as I'm new to this, I have no one except you all to relate to, so I have a lot...thanks for baring with me

*The color changes (typical of RSD/CRPS) that I have come and go (which is normal, I know), but what happens with me, is that if I'm sitting or standing (my foot/leg vertical) it turns black/blue/purple and splotchy...but once I lay back down, it typically turns back to normal color w/in a few minutes. It's quite weird.

*Also, on the topic of standing, it's gotten so bad, that I dread taking showers, b/c just having my leg down, even without weight-bearing is so painful and the physical signs it displays afterwards are so terrifying- looks like frostbite, black top and bottom. Does anyone else notice this? B/c in terms of color, it's ok when I keep my leg elevated. When it's down, it feels like it's going to burst. Again, that tourniquet feeling gets intensified ten-fold. I wonder if it's got to do with the circulation aspect of CRPS...

*I'm also restricted from physical therapy at this point- my drs say that they need to get the meds figured out, and my pain under control first, or the disease can get worse or spread. But i don't quite understand this...b/c my foot muscles are getting stiff, and getting painful in and of themselves, b/c they aren't being used...it's starting to really drive me nuts! From a cheerleader/gymnast (a few years back) and runner, to a couch potato...I feel like I'm going to lose my mind, and my foot

*Most importantly, can anyone share how their RSD/CRPS progressed, especially in the early stages? I feel like this is getting bad, fast, and that it shouldn't be. If you wound't mind sharing your experiences, what meds you take (had taken), and what helps you to cope.. Tools to stay comfortable when meds aren't working, etc. Also, ways to explain this "beast" to friends/family. It's so hard to be dx with something as rough as this, but not be able to have any concrete way to explain it. Sometimes I think it'd be easier to have be dx with cancer...you can understand that, treat that, explain that... I hope that doesn't sound too awful.

Thanks for your help...you all mean more than you know!

Hi SnowWhyte!

First off... you are NOT alone! Much of what you are saying I have said almost word for word many times.

I have had RSD for 7+ years... it began in my foot after a crush injury. What you are describing about the color changes and tourniquet feeling... I still experience those sensations today.

Here is the link to the Our Stories Thread: http://neurotalk.psychcentral.com/thread10725.html


It is a good thing that your RSD was caught early!!! If treated agressive, early enough there is a greater possibility of going into remission.

Please know... that NO two people with RSD have the exact same symptoms. Nor do the same medicines or treatments work for all of us.

Please read and ask questions!! It's the best way to learn about RSD. Also, you will be your own best advocate in your treatment!!! Take what you learn and discuss it with your doctor.

I truly wish you the best.

Abbie

Abbie,

Thanks so much for your fast reply. Hearing that you've felt the same way helps reassure me that I'm not totally going crazy... The fact that rsd is so "tricky" so to speak, makes it hard for me to discern what's "normal", and what might just be my overly emotional self shining through- which ironically is also rsd rearing its ugly head :/ argh! But seriously, thanks again, it means the world to me.

Early RSD canbe reversed. However, you need the correct information.
First you must get the inflammation down.. I like Anaprox ( name brand).
Also NAC as a supplement as much as you can take to bowel tolerance.
Soak limb in warm sugar water. That will break the pain cycle.
Learn from your pain doc. or an ear nose throat doc the nasal block - where you go down your sinus cavity to a nerve bundle, using a long 1 sided cutip with 2% liquid lidocaine.
Get to a 'good' RSD doc that can reverse this ASAP. There is a doc in Florida that has a reverse IV drip... Has to be within 3 months of injury. Jos

Hi SnowWhyte,

Have you joined the RSDSA yet? New members received information which includes a great info packet for spouses and other family members. I know it really helped my husband understand some of what I was experiencing. Check out their website at rsdsa.org.

They also have a great medical archives area where you can research treatments and meds. In addition, there is a feature that allows you to search for board certified pain management doc and anesthiologists by geographical area. Support groups are also listed.

The best of luck to you. I am so sorry that your RSD is intensifying so rapidly. Try to find the very best RSD doctor that you can. Many times, board certified docs that practice pain management out of large, reputable university medical centers or research hospitals are your best bet - call and see if there is anyone experienced with RSD. Or ask them for a reference. In some areas a good neurologist is a better choice.

Take care, XOXOX Sandy

As I try to start all my 'reply' posts with: thank you all for your helpful comments, and kind words, they provide me with more hope and encouragement than I could ever express.

Sandy,

I'd like to specifically thank you for letting me know about joining RSDSA. I've heard about them, and actually spent quite a bit of time on their website, but oddly enough, never thought to look into the "join RSDSA" portion of the site, I don't know what I was thinking! All of the points you make are what I need- I've been given much in-depth help as to finding a good doctor, but I've been really at a loss, and struggling painfully with trying to deal with explaining this "beast" to my friends and family...to the point where I haven't even told my sister yet- she has actually shunned me, for thinking this "news" I've been trying to talk to her about is just some "dramatic" episode...and it's breaking my heart not having her to talk to for support. because I know that if I try to tell her, it will only make it worse, b/c at this point, it won't sound like anything serious- to her, it will only reinforce her idea that I'm overreacting, or making a scene/being "dramatic", etc, etc... I've been searching so hard at no avail for SOMETHING that explains RSD/CRPS in a way that actually makes it sound the way it feels- sound the way it legitimately is. Even the (more current) name itself "complex regional 'pain' syndrome" has some undertones that spur judgement by some people- that it's like a headache that you're just too weak to deal with, or want to whine about, or looking for drugs for, etc (when it comes to pain, you name it, they have ways to judge you for it), but if you told someone you were dx with another incurable illness- cancer, for example, people would never dream of judging you ... idk if anyone else has experienced this...but it infuriates and deeply saddens me.

Anyway, I'm going to jump on RSDSA's site in the morning- thanks again for the tip!!!

~Colleen

Dear Colleen -

Just saw your note to Sandy. You are a beautiful and gifted writer. To the point that the description of your circumstance is terrifyingly immediate.

That said, perhaps the most direct way to describe where CRPS falls out on the spectrum is to repeat what Jim Broatch (who runs the show) used to have almost on the RSDSA masthead: Most of our endowment is from memorials. I've also read from a number of sources that the pain can be worse than that of metastasized cancer. Maybe that's a little too direct. . . .



Mike

Mike,

I'm shocked and humbled to hear such kind remarks about my writing. I've always managed to write decently I suppose, but it was always forced, and never "beautiful" by any stretch of the imagination. Until recently, writing has been extremely difficult for me, and I still struggle with just letting it "flow". But as unfortunate as the subject matter is, and I wish it didn't need to be written about to begin with, your praise has made my day (and you know better than most how tough a job that is). Thank you so very much friend!

p.s. again, my new focus in all this RSD/CRPS "nonsense" is to find a silver lining wherever I can- and it's actually quite exciting when I do-try it! (the child in me comes full-force, it's really a mood-booster). Silver lining found today? I've realized in the face of everything that has been going on, writing has become not only much easier, but extremely cathartic. And the fact that others' may enjoy reading my little bits of "work", is beyond thrilling!