Hey Jennijojo,

First of all, I'm so sorry to hear about your diagnosis. And secondly, I totally understand the pep talk thing that you referred to about people assuming it isn't that bad. It is that bad, on some days it is unbearable, I've been there, so I am so sorry that you are having to endure this. You mentioned that you are worried about work, are you full time? Because if you are, I might suggest talking to your employer to see if you can cut back on your hours a bit. I have found personally that this has helped while I have been trying to deal with having a majority of bad pain days, especially when you are new to it and trying to work out how to manage the pain. If this is not possible, the best thing to do is to build up your file with any helpful information, which would include maybe starting a pain journal, in which to document pain levels, moods, treatment progress and test results and maybe even dietary triggers for your pain. As far as the pain getting in the way of work and being afraid how much it will affect you, I totally understand because mine is in my dominant arm. I have found that you really need to gauge your pain level, and try to only push yourself as much as you can before horrible pain sets in. This is harder to do some days more than others. My biggest piece of advice is take it one day at a time. Some days you will be able to do more than others and that is okay. We are here for you! :grouphug:

Thanks for this info Littlepaw....one day my CRPS just broke my bone...no patchy osteoporosis, bones actually look healthy. And because the bone healed I kept being asked "how did your bone break?" In other words, what did I do to break it. I do worry this can/will happen again; :(

That is horrible Enna! Did it just break or was it flaring as well when you broke it? I don't know that much on the bone stuff, I'm just wondering.

Don't give up HOPE you CAN beat this!!
 

Jenn,

My name is Emma. I'm 31 and have had Crps since Oct. 2012. It started in my left arm and hand from a botched IV attempt, that injured my radial and median nerves. I am so sorry to hear that you've been diagnosed with CRPS. I know how scary and daunting it can be once you find out what CRPS means and all its entirety.

NOW is the time you need to act. The key to being able to push CRPS into remission is acting as quickly as possible when you first find out. The longer you go without proper treatment the less likely you are to be able to push it into remission. It is very important to find a good doctor that knows about CRPS specifically. Finding a good CRPS doctor can be difficult but it is possible. You should also look into finding a pain management psychologist or therapist. Also it is extremely important to find a good physical therapist one who will work closely with your doctor.

The reason physical therapy is so vital at this time is because it will help prevent muscle atrophy and tightening of your muscles which can create that clawlike appearance to hands and turned in club feet. A lot of people will say that physical therapy is not good but it is is long it is the correct kind of physical therapy. The sooner you can start that is better. However it is important not to push yourself too hard it needs to be very gentle even though it will hurt. The only reason I'm able to have near full range of motion of my arm and hand today is because of the physical therapy that I did two years ago.

Here are a few things I found VERY helpful. And some things that are EXTREMELY VITAL to KNOW.

1. Probably one of the most important is
NEVER USE ICE!!! Below explains what can happen. Never let any doctor or PT tell you differently and if they do they don't know anything about CRPS and you should find someone else.

http://www.rsdhope.org/ice-and-crps.html

2. Find a good and knowledgeable physical therapist and start on it as soon as possible as long as your doctor is in contact with and approves of the physical therapist. Below shows why PT is so important.

http://www.moveforwardpt.com/Symptom...7#.VRKE8n3n9GA

3. Find a good pain management therapist/psychologist. Crps is tough, extremely, and can push people to the brink. 70% of patients with crps consider or attempt suicide. I'm seriously not trying to terrify you, but it's a fact that needs a lot more awareness. It can also be an invaluable tool to help your family and loved ones understand what you're going through and help them with their stresses as well as everything it can do for you. You don't need to bear this burden alone and a therapist can help you work through a lot of the stresses your face in trying to beat or live with CRPS.

4. You should start a daily pain journal or diary. This can help you keep track of pain levels payment type. You should also keep track of your daily activities. This can help you talk with your doctor at your appointments and keep track of when your pain is the worst what pain needs more attention and what medications or treatments might help that. As well as it can help you discover activities they could because he knew more pain without you realizing it. For example, I kept on having massive pain flares but we didn't know what was causing it. Until we took a look in my pain journal and found out that two days after I vacuumed I would have a big pain flare. So I was able to have somebody help me with the vacuuming and keep my pain from flaring one more way!

5. Seriously try to stay as positive as you can. Focus on the things that are wonderful in your life not the things that have been going wrong. This can be true of anyone in any situation but it is imperative for people with CRPS to try to pain-free as possible. Nerve pain and nerve conditions like CRPS can be directly related to emotional stress. The phrase getting on my nerves? Is very literal in our case.

6. Make sure that if this doesn't come up in talks with your doctor or your physical therapist that you work on desensitization!!! It is really hard to do and can be kind of painful but it is very important. Do things like taking a a soft wool or a piece of cotton or whatever you can and gently touch or rub it on the affected parts of your body . You don't have to do it for long you don't have to do it all day and do it gently but try to do it at least once a day. You don't want to do it to the point where you're crying from agony but do it for as long as you can tolerate . This can help prevent the extreme extreme hypersensitivity/allodynia. Trust me you will thank yourself for doing it because it can mean the difference of being able to wear a pair of soft gloves in the winter or a long sleeve shirt that way you can actually stand to have some things touch your skin.


Finally I am listing below a few sites that had some really good information on CRPS and resources to be able to tap. I found them very useful in my journey and I really hope you will find them useful as well.

http://www.rsdhope.org/what-is-crps.html

http://rsds.org/

http://www.rsdhope.org/crps-treatments.html

http://www.medicalnewstoday.com/articles/184338.php

http://www.rsdcanada.org/parc/englis...treatment.html

Please feel free to contact me anytime for any reason for anything. CRPS patients of all people know the support it's needed to be able to beat or deal with this condition. And only people with CRPS can know what it's like to deal with it because there is nothing else out there like it!

Stay positive fight hard and you do have a chance of beating us . I know you had said you were worried about it spreading to another part of your body ? Just so you know it's something like under 7% of people with CRPS that actually end up having it spread so your chances are pretty low . Just know that we are always here for you and if you like you can private message me anytime send a friend request and I will get back to you.

Sending Love and Gentle Warm thoughts~~~
Emma

Sorry took me so long to respond. I'm still in the same place I was. The dr referred me out and the clinic didn't see it etc etc and once they found the referral couldn't get me in for months. so now I'm waiting for a referral somwhere closer.

So I was working doing hair about 30 hours a week started shortly after having shoulder surgery. Then my opposite hand was giving me trouble I figured it was carpool tunnel but the Ortho said arthritis and stop doing hair. So I haven't been working cause I'm looking for a new field. My other line of work is drawing blood and requires a lot of my affected hand (my dominant hand). So I'm trying to figure out what to do for work.
I've been doing hair at home lately and the day after I have huge swelling and now my arm will hurt all the way to my shoulder. Feels like the deepest worst sunburn ever on the entire arm. (Best way to describe it) so I'm so curious is continuing doing this as a job going to just make my pain to where I can't get under it to get it to stop without a day off....again gotta have that dr appointment so I can ask all these questions!
I am most bothered by not knowing what my work will do to my hand/ arm and my desire to work!
So yeah so far I have no new info :(

Thank you Emma! Such good info! I discovered the ice thing before the diagnosis and was quite surprised!
You mention getting treatment ASAP and I am still waiting, my question is this dr thinks this stemmed from something that happened years ago...this worries me. however, I didn't start having this problem till I started having some over use joint problems two years ago which promoted cotisone shots and it all went downhill. Actually it started going down hill after the shoulder surgery and the a not so great interscalene block on the other arm (they got it in my blood stream and my heart went nuts). I had nerve pain for months after. Ended up having an akinetic septum in my heart ( drs questioned the block as the cause) I ramble but my point is
I don't think I will ever know the cause and I'm worried I've already waited too long to have remission including while using my hand repeativeky for work?

In a side note, I am frustrated today cause I saw the Ortho that referred me to hand clinic while my daughter was seeing him and told him the diagnosis. He called it a waste basket diagnosis :confused: