The Do’s and Do Nots of CRPS…

Complex Regional Pain Syndrome or CRPS is a very complex disease, as the name implies. It is very difficult to diagnose, with no one single test to confirm the CRPS. There are different guidelines as to what tests or combination of tests will confirm a diagnosis. There is a lack of consistent clinical studies that offer any set procedures for treatment of the disease. So much of CRPS is trial and error, and what works for one person may fail miserably with the next. These inconsistencies are part of what makes CRPS such a ‘living hell’! Some doctors are just as frustrated as we are, but some things can be done to lessen this hell and frustration.

So, what can we do? We need to become the Chief Executive Officer(CEO) of our CRPS and control every aspect of the treatment of the disease. We must learn as much as we can about the disease and become a CRPS specialist. This way we can assist our doctors instead of just being a patient. Your doctor may not like this, but tough cookies, this is your life and you are in charge. They work for you and hopefully, you can work together to meet a common goal. The list below may just help you along the way:

The Dos:

  • Do ask a potential doctor if he/she is a CRPS specialist?
  • Do ask a potential doctor if he/she has a winning track record in treating CRPS?
  • Do ask a potential doctor what treatment plans for CRPS does he/she use?
  • Do ask a potential doctor if he/she prescribes opioids for CRPS?(opioids are best for short term, have some negative side effects and generally, Gabapentin is the first drug prescribed in CRPS cases)
  • Do know it is OK to ask your doctors all the questions you need answers toChief Executive Officer of your CRPS, Complex Regional Pain Syndrome a chronic pain disease and a living hell
  • Do understand that second opinions by doctors are OK
  • Do ask your doctor why he/she thinks you have CRPS and are there other conditions that may be the culprit causing my symptoms
  • Do take charge of your care, be proactive. If your doctor does not like it, find one who does. He/she works for you, not the other way around, you are the CEO
  • Do be professional, be respectful and be polite to all your doctors
  • Do research and understand side effects of every medication you take
  • Do share what medications you are taking with a loved one in case of emergency
  • Do take notes at your doctor visits(memory loss will cause you to forget what was discussed at your doctor visit)
  • Do be 110% honest and open with all your doctors. Discuss all symptoms with him/her
  • Do keep pain journal(a good app for this instead of pen and paper is Manage My Pain)
  • Do periodically take pictures of the affected limb to supplement your pain journal
  • Do understand that CRPS is one of the most painful forms of chronic that exists
  • Do understand that CRPS can spread
  • Do understand there is no cure for CRPS, but the earlier the diagnosis the better chances to beat it before it sets in
  • Do understand that memory loss, crying, emotional instability, lack of concentration, insomnia, inability to finish sentences or find the right word when speaking ARE ALL SYMPTOMS OF CRPS
  • Do join online CRPS forums, chat rooms, online CRPS support groups, websites and type how you feel
  • Do ask your doctor or research yourself about local CRPS support groups
  • Do express how you feel to doctors, family, and friends
  • Do understand that some people will have a hard time understanding what CRPS does to you, calmly explain it to them
  • Do exercise the affected limb every day
  • Do tell your doctor if you are having any thoughts of suicide or hurting yourself
  • Do rely on doctors, family, and friends if you need it
  • Do understand that seeing a mental health doctor is OK
  • Do understand that taking an anti-depressant for CRPS is good and will help you with pain as well as your mood
  • Do understand that a problem such as dry mouth is caused by the CRPS and/or the medications which can lead to dental problems. Visit your dentist regularly
  • Do understand that excessive sweating is a symptom of CRPS
  • Do understand that your nail and hair growth can be affected by CRPS
  • Do understand that CRPS can go into remission

 

The Do Nots:

  • Do Not panic when you are first diagnosed with CRPS
  • Do Not take a back seat to your care, become proactive and become a partner with your doctor
  • Do Not think the pain is all in your head
  • Do Not think you are going crazy, what you are feeling is directly caused by the CRPS
  • Do Not think you are all alone
  • Do Not think everyone is out to get you
  • Do Not think no one understands what you are going through
  • Do Not keep your feelings bottled up
  • Do Not think crying or finding a secluded spot and screaming out loud is not OK, it is fine and might help you feel better
  • Do Not use ice on the CRPS affected area, unless absolutely necessary
  • Do Not stay in bed all day, get up, get out
  • Do Not feel sorry for yourself
  • Do Not lose your temper with doctors, family or friends, they are only trying to help and lashing out is another possible symptom of the CRPS
  • Do Not ever take any medications not prescribed for you
  • Do Not panic if your CRPS is spreading, but do inform your doctor
  • Do Not feel like you are guinea pig while going to all your tests for CRPS
  • Do Not forget to BREATHE
  • Do Not get discouraged if your CRPS is not going into remission
  • Do Not let a doctor amputate your affected limb

There may be some Do’s and Do Nots that I am missing if you notice that something should be added to either list, let me know in the comments below.

Also, I do not claim to be a doctor or therapist, these are just my opinions, nothing more. Thanks, Jim

We are never alone!

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Comments 27

  • Would you please email me this article? My email is karenpstephens@embarqmail.com

    • May I ask why you could not do it yourself? This is a new website and I am trying to figure what works and what does not. was it the email link on the page that did work?

  • Recently(10/2017) diagnosed with CRPS. I’ve had 6 ganglion root injections which offer relief for about 3 weeks and the pain returns little by little until it becomes unbearable. I’m doing water therapy and on neurotin. I’m having a difficult time finding a doctor that has appreciable experience with this disease. I’m in the Atlanta area. Where do I began to look.

    • I have a page on my blog here, I don’t even have it published, because I ma still working on it, but if you don’t mind it looking incomplete,I will publish it now. I am not even sure how it works,but it is called Diseasemaps and if you join up, it’s free. And it will show who near you has CRPS, if you put in thatthat is what you have.anyway, I am not sure, but I think you can contact people around you and maybe they can help you with finding a doctor…..maybe. Like I said, i am not a 100% sure how this works. And I am sorry, I am having insomnia and I feel a bit delirious right now, lol

  • Thank u so much for this u don’t know how long I’ve looked for someone how just understands me I have been looking for something like this for 5 years now I was diagnosed at the end of 2012 and have been pulling my hair out ever since its like no one around me understands they don’t know what its like to hurt all the time and it doesn’t just hurt its the way I hurt that they don’t understand I’m very glad I finally found somewhere where that understands, somewhere I can be heard, somewhere where I have a voice and somewhere I can get help I will take all ur suggestions to heart and I will start them well today its 1:48 am on Saturday April 8 where I’m at and I would also love this article sent to my email at csgarnto7983@gmail.com and now I finally found somewhere I can go everyday for support good or bad so THANK YOU again.

    • Thank you! I am so glad you found my site. I will do my best to keep writing and hopefully reach more like yourself. This disease affects our whole being, it’s like you said, it’s not just the fact that hurt, it’s how we hury. So well said! I might use that.

      • Ok that’s fine u can use it cause IT’S THE TRUTH AND THATS WHAT PEOPLE DON’T UNDERSTAND

        • Thanks. My typing is atrocious, I just woke up at 2:30am. I got some sleep, at least

          • Well I still haven’t been to sleep yet probably fixing to go so I can watch my show mountain monsters later today man I love that show

          • I am not familar with the show, I will google it. Not to sound like a salesman, but please check out my twitter & facebook page too. I am really trying to get this blog going well(its darn hard) to try and help people. First time doing anything like this, still learning.

          • Well I have a facebook page as well it’s called complex regional pain syndrome awareness page cause I was trying to help people as much as I could and was hoping to find people like me that understood me that we could all talk together and have each other but the two new members I have to that group don’t really want to talk.

          • I am working up my courage to talk in a group setting. I admit, I feel uncomfortable with it. I don’t even speak with my family about it yet. Just my doctors and my wife.

          • Well I’m the same way I don’t like to talk to people that much either except my husband, mother in law and my father but with this none of them seem to understand this but my husband bless his heart he gets so hard and so much to help me but we are both new to this ourselves plus I have a social disorder anyway so that makes things even harder I don’t like going out in public I get rude and mad very easy and I will start cussing at people just cause they get to close to me or do stupid stuff it mostly places like Wal-Mart and places like that where its crowded that I show out but I’m bi polar I have PTSD and a severe anxiety disorder and that was before the CRPS so just imagine how much worse all that is now

          • That part of things I admit I do not know a lot about. But I can see how it would make things a lot harder. I have been having real issues leaving the house too. I do my best, I know it helps to get out and socialize, but damn it’s hard!

          • Yes its very hard but it’s like my husband tells me staying inside four walls all the time will only make u crazier so u have to go outside that’s why I like where I live at now cause I can go outside and be free I’m the only house on this dirt road I live on and they’re aren’t too many others near me I just have to be careful and watch where I put me feet cause my CRPS is in my left lower leg and I fall easy sry my toes keep going numb my CRPS is in its getting worse stage

          • Hi jimmy I do have a suggestion to help u have u tried painting or drawing sometimes art is a great escape even if you can’t do it well sometimes it just helps to try see i have a very deep passion for painting you could even say its in my soul but when I get a paint brush in my hand even if I don’t know what I want to paint just putting that brush in my hand seems to make the world go away and my head calm and if u can’t paint or draw get some of those new adult coloring books and some color pencils let your heart tell you what to color then when u look at the picture what does your heart tell u let yourself get caught in it then when your finished you will see what I mean it may not be a mona Lisa but you will have spent a few mins at least FREE from everything. Try it I promise it will help

          • I am sorry for the delay on this response, I overlooked your comment and just saw it. I didn’t get a ‘ding’ when this came through. anyways,I have not tried painting, I gave up art years ago. My mother is an artist though, she loves it. It’s not really something I am interested anymore. There are some local ‘painting’ nights where people get together have a glass of wine and paint. I just don’t know. I will post if I do start up. Thanks!!

          • Hi jimmy I wanted to let u know this past Friday I had a bad episode I got woke up and my lower left leg which is where the CRPS is was asleep when I woke it up I had to shake it repeatedly until I could finally wickle my toes to wake it up then I went to move it and it hurt like carp but then it got back to normal but it was hurting like crazy and ever since then I haven’t been able to walk on it it stays swollen and hurts constantly mostly in the arch, ankle and toes do u have any ideas on how I can get back walking on my leg and foot. Thanks Crystal

          • Paresthesia, or the limb ‘falling asleep’ is fairly normal for crps patients. Elevating the leg might help the swelling. Unfortunately, it may just be the ebb and flow of the disease, but I am not sure. Definitely talk to your doctor about it, in fact share all your symptoms with him or her. I have not been able to put full weight on my leg in over 2 years, no matter what I do, but we are all different. Good luck, let me know what you find out, please

          • Ok thank u and I have been keeping it elevated so I don’t need to put ice or heat on it

          • no ice ever. light heat is good, as long as it feels good, in my opinion. And desensitize as much as possible.

          • Ok thank u jimmy and I will let u know.

  • Great article Jim and you’re off to a great start!! Love this blog! For those looking for a “copy” of this article I suggest the following: on your computer select Print, then save it as a PDF rather than actually printing to your computer. For those of us who have Macs, this is an easy option. I just did exactly this on my computer. The email choice only emails the link to the article.

    Jim – not sure how this is done, but if there is a way to add a PDF download link to your articles I think that would greatly help your Readers. If I come across how to do this, I will share. Cheers! And thank you for getting this going!!

  • I like the idea of meeting in person – I realize that many of you have a fear of sharing outside your close confidants. Don’t we all?! But, it would be awesome if we could all meet at PAIN WEEK in Las Vegas in Sept. Okay I’ll come clean that not only am I a CRPS patient but I have a PhD in Pharmacology and work in the Pharma industry for Medical Affairs. Currently I work in the Pain therapeutic area and so know of this meeting. Many patients attend, and there are several Patient Advocacy groups that have booths as well. Plus it gives attendees an opportunity to meet with top pain specialists and learn more about their disease, new therapies and discoveries.

    Jim – would love to work with you on this if you’d be interested. Even if you alone attended it would give you a lot of info to add to your blog. I would volunteer to help if you needed! One of my professional roles is to take complex scientific concepts and convey them to a variety of audiences.

    CRPS sucks big time and very few patients get diagnosed and treated correctly. I love the idea of helping empower patients to become the “CEO of their disease” and would be happy to assist where I can. Not only can I speak to the loneliness, depression, frustration with getting friends and family to understand how I am feeling, and all the “weird sh** that comes with CRPS”, but I can also breakdown the science behind CRPS and the available therapies for the general public to understand. I currently meet with pain specialists via my job from Chicago, Dallas, St Louis to all parts West. So I definitely know more than a few top docs!

    And yes, I too have seen the impact my chronic pain has had on my relationships. Friends & family come to visit me, and don’t understand why I’m so tired all the time, or why I can’t just make the pain go away with a couple Tylenol. Worse yet is their “fear” of opioids and believing that I am stoned all the time because I use them to control my pain. I had a flat out meltdown on my mother when she asked if my doctors were helping me to find things to be more “happy” so I wasn’t depressed! She totally doesn’t get depression is chemically caused by the depletion of neurotransmitters in our brains. Asking someone with depression to try to be happy is like asking a deaf person to simply listen harder! WTH?! Then there are the profuse night sweats so bad I have to wash my sheets daily at times, or waking up with completely numb arms (yes, bilateral), or shooting pain in my elbow, or needing a nap after just performing one task that day, or the insomnia…like now! And the edema…oh Lord the edema…my weight changes on a daily basis due to how much edema I have going on! When it’s really bad my whole body just aches!! The only thing that gets me up every day is my horse. If I didn’t have her I think I’d lie in bed waiting for “the end”. I don’t date cause I don’t feel confident enough to attempt to find someone at this stage who would “take me as I am”. Especially after reading how CRPS has destroyed marriages.

    It’s nice to know I’m not alone and can come here to your blog and share, learn, and find some peace. Thank YOU Jim for giving CRPS patients a place to gather!

    • Really, thank you! I am a little groggy today, last night was my first night on ambien and today is my first day on…….celexa, I couldn’t recall the name. The next day or 2 I can’t imagine being too productive. Anyway, until I get my anxiety under control, you aint getting me anywhere any groups of people, LOL! But, I like where your mind is at. Let’s talk further when my head isn’t so squirrelly. And, guess where my pillow is right now….in the washing machine, it was getting so sweaty gross!!!!!

  • LOL I hear ya!! Am washing sheets & PJs myself today! Take care and we will connect again soon about the meeting. Oh and Ambien is my best friend!! I’d used it before when traveling to the East Coast for work..now I use it when I’ve had several days without a full night’s sleep. Feels good to wake up after 8hrs of continual sleep!

    Have a good day!

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