Brand new to ALL of this...
 

Hello all,
After a simple routine knee surgery on 2/4/14, I now have CRPS. I never even heard about this before. All I can say is that it is very painful all the time, with varying types of pain. But then about 2 or 3 times a day, I get this pain that makes me tense up and blackout when it hits. My wife tells me it usually lasts about 5 minutes or so, and then I am just completely drained and sore from my entire body locking up. I have never been on a site like this before, but I have read over some of the people talking to each other and I saw that there are alot of people that deal with the same symptoms as me. I hope to learn more about how to maybe deal with this and maybe also be able to help others as well.
-Dabney

HI Dabney, It's good to have you here. Sorry it's for this reason. Everyone has different symptoms. I don't feel my body lock. I just have the burning pain and muscle cramps. This site is a wealth of information. I found out things I didn't know for 8 yrs. Things my doc didn't even know. So ask as many questions as you need to.

I hope you feel better soon!!!!
Heather

Welcome Dabney! But sorry for the circumstances.

This forum is truly a great resource (and sometimes just a good place to vent). We all know what you are going through.

Knowledge is power so do your research and find competent professionals to help you. Be sure that the ones you choose have experience with CRPS (ask them point blank) as it is possibly one of the most misunderstood conditions of the human body.

It is best treated by a "multi-disciplinary" approach. I have CRPS in my foot so my primary CRPS doctor is my podiatrist. I also have my GP who handles certain issues like nausea, etc. Add a chiropractor and a pain management doctor to the team and that is how I am handling this condition.

There are lots of things that are similar here for many and you will also find that there are things that seem like they may be absolutely "unique" for you.

Taking some vitamin C daily is a practice that many of us abide by. There is some evidence that it can prevent spread of CRPS. I take 500 MG daily.

Good luck and keep us posted!

As it's so short a time you have a very good chance of long term remission with the right treatments. You need a real specialist doctor in your are to achieve this, do a search or ask on here.

Hi,

I am so sorry you have been diagnosed with this! Glad you have found this group where you will find support and have a place to vent with people who totally understand what you are going through.

The positive so far - that you were diagnosed early! That means you have at least one doctor who has seen this before, which is actually uncommon.

As others have said having a team of knowledgeable doctors is really important for getting this into remission and getting the pain under control quickly so that you can keep your limb moving.

One of the best things you can do right now as you assemble your team is to write down each and every symptom be as detailed as possible as to the type of pain. Also, draw out a diagram of where the pain is and if it is different in one area versus another write that out. If your limbs are different colors or you have a rash, swelling etc., take pictures of your limbs to show your doctors. Take this information to each and every appointment. Don't assume that any new doctors seeing you, even if you were referred have all the information or took the time to read your chart fully. Having it all in writing (add to it as time goes on or new symptoms appear) for each appointment will help make the best of your appointments and treatment going forward. Do the same with medications, noting any side effects etc.,

Do your best to keep your limb moving even if it is just isometric movements. If you can't move your knee start with your feet - ankle pumps, circles, draw letters with your toes whatever you can do to get the blood moving. Work your upper body with simple movements and even weights.. it's important.

Desensitization using your own hands to touch and or massage the area is very beneficial if you have sensitivity issues. Start with you own hands and then work up to using different textures and then later ask your spouse to help. Mirror therapy is also very helpful and like with desensitization if started early and done many times throughout the day every day can really make a huge difference.

Because this disease brings on different types of pain keep in mind that medications often only treat 1 or 2 symptoms and not all of them. For instance Nuerontin type medications (Gaba, Lyrica and Cymbalta) mainly treat the burning pain. Lidocaine, Votaren and other compound creams help with sensitivity. This is why I mentioned making a detailed list - it will really help in this area while trying to find the right medications.

Epsom salt soaks - I use 2 cups of epsom salt in a warm bath and soak for 20 min. this helps with inflammation and is also calming.

I hope this is helpful for you or someone else reading,
Tessa

Sorry to hear your suffering
 

Unfortunately we all are pain suffers but the most important thing we had learned is to listen,ask questions,due research and always keep updates is a long way to walk and you needs a lot support and learn to be patient we hope we help u in some way,you can read all the stories we posted and you will learn from each other is a long road ahead but be positive even if ur days are cloud make then shine with a positive thinking that will get you thru the day but if you have a really bad day just rest take your time to do stuff don't rush and will be ok,we all hope the best and don't stop fitting ,good luck

Hi Dabney,

I am also a fortunate soul who realized what I was up against early on. Like you, my RSD (right leg) was a result of a routine (ankle) surgery.

I just want to echo some of what Tessa just said. Movement and desensitization are very, very important. I did 5-10 minutes of mirror therapy every hour on the hour for three months. Have your wife grab a full length mirror from WalMart or Target (less than $10). Self-directed massage, and then having my wife do it when I could tolerate it, was also important.

MEDITATION, VISUALIZATION, and POSITIVE IMAGERY are crucial. Sorry about the caps:) Close your eyes and visualize yourself doing things you did in full health every night before you go to bed.

Set environmental positivity controls. Surround yourself with soothing music. Take a relaxing bath with epsom salts, like Tessa said. Go outside and soak in a little bit of the sun if you feel up to it (although RVA's had a crazy couple of recurring random snow days hey?!)

Drugs/nutrition/environmental factors are different person to person, but the key for me was to first limit, and then eliminate, anything that I identified as causing STRESS. Easier said than done when you're in 24/7 burning pain :/ I applied a 50-50 DMSO/vegetable glycerin treatment to the affected area 3x daily, and took 800 mg NAC 3x daily. Blessedly pain free in 90 days.


You can beat this and I will pray for you and your family every night.

Hey Dabney! Welcome, but sorry for the circumstances. This is a great place for info and support. We all get it!! The good thing is that you were diagnosed early. Your best chance of remission is now! Hope you have found a good pain management doctor to help you. I know they are hard to find, I am in the process of looking for a new one myself. I can tell you who not to see in RVA, but have yet to find the right one to see. If you found a good PM dr, let me know :wink:

You have already been given some great advice here, I just want to add one thing - no matter what anyone tells you, DO NOT USE ICE. Ice is the worst thing you can do to RSD/CRPS. It will cause spread.

Wishing you the best,
Nanc
:hug:

Good catch on the NO ICE. Forgot to mention that.

NO ICE!!! Never! Plenty of research to back up this recommendation.

Many doctors that aren't up to date with CRPS may recommend icing. Don't do it. It seems like it might help what with "burning pain", but it will do more harm than good.

Here is a link that contains much good information about CRPS. It is a bit dated, but still very relevant. Good luck!

http://rsdrx.com/

Thank you Heather !

Welcome Dabney,
You found a great site here. A good place to find info, vent or just visit.
I love the feedback I get here and I know you will too...

Thank you,
I am in the process of finding a neurologist , someone for pain management and they want me to talk to a psychologist as well. so right now kinda a waiting game, but day by day... right ? I started taking 1000mg of vitamin C for the past few days, also a supplement called Nutri Calm to try and help curb some stress. Will let you know if it helps.
-Dabney

Thank you Tessa,
That is a great idea to keep a journal of everything (pain, medications etc...) for when i go to different doctors. I have been doing as much Desensitization as i can handle right now, skin is just really sensitive to touch. I told my wife about the mirror technique... so, we are going start trying that as well.
Again, thank you for the helpful tips.
-Dabney

Hey Dabney!

Let me know if you find a good neuro and pain management dr. I am also looking for new ones...I live in the Richmond Region as well. As far as a psychologist goes, I recommend finding one who works a lot with pain patients. Sheltering Arms (St Mary's location) has some good ones.

Hope the supplements help you!
Nanc
:hug:

Just checking in on you Dabney. Hope all is well, and you're able to spend some time out in this gorgeous weather today!
VNV