CRPS (or RSD) The ER, Hospitals and Surgery - Are There Precautions I Should Take?
By Keith Orsini, American RSDHope - 2012
When a CRPS patient is faced with going to the Hospital, either for a trip to the Emergency Room (ER) or to the hospital for some type of surgery they know that they may have to deal with physicians, nurses, and/or other members of the hospital staff who are not that knowledgeable with their disease. I don't just mean the main symptom of pain although many in the ER field in particular may believe that is the only reason a CRPS or chronic pain patient visits the hospital. But rather all of the other issues that are associated with living with a chronic pain disease. This can mean everything from having other diseases like fibromyalgia or degenerative disc disease and the symptoms and issues those diseases bring to the table or having to deal with the side effects of the many medications chronic pain patients take on a daily basis. it could even mean someone with an SCS or a pain pump is having a problem with them and it is causing them significant problems. It could also be something that has nothing to do with their chronic illness at all. The problem comes when the admitting medical personal only see those big letters "CRPS" and not the patient!
So let's deal with these issues in two parts. The first part will deal with precautions you the patient can take to ensure your time at the hospital goes as smoothly as possible assuming the medical professionals act professionally and treat you with the utmost care and concern, as most of them do. Let's make that clear. Working in a hospital, whether it is full-time or coming in as part of a rotation, is a very difficult job, especially in an ER, and takes a special and dedicated kind of professional.
Many CRPS patients are faced with this question. Is it better to deal with the pain of an additional injury or risk surgery and the possibility of the disease spreading and/or worsening? It usually comes down to the question of whether it is optional surgical procedure. If it is not optional, then there are precautions you can take.
Many years ago the answer would have been the same but it would have been more difficult because fewer Doctors and nurses knew about our disease. A lot has changed since the year 2000. More medical professionals than ever before are well-versed in CRPS and the issues that can arise from surgery. But, having said that, it is vitally important that you as a patient prepare in every way possible to reduce the likelihood of a problem.
Surgery for CRPS patients, especially those of us with systemic CRPS, is a concerning proposition but not an impossible one. When faced with a problem where surgery is deemed medically necessary there are precautions you can and must take to lessen the chances of the surgical procedure affecting the CRPS. The possibility exists that the procedure could aggravate it, irritate it in some way and causing it to increase in severity, intensity, and possibly even spread beyond its' current location.
1) Be prepared with information - In your pre-surgery discussion with your anesthesiologist be sure to bring either some of our CRPS brochures or some printed information regarding CRPS. This can be from the American RSDHope website or the RSDSA'S, so that everyone who comes into contact with you will be sure to know about your disease and take extra precautions. Don't assume that he/she will be familiar with the disease (although he absolutely should and probably will be.
2) Bring an extra set of eyes and ears - Bring someone with you to this appointment and be sure it is the same person who will be with you the morning of the surgery so that they know to follow through on all of your instructions, have them write down everything or keep your list with them. Make a folder up for them prior to going in and go over it with them. They can even attach it somewhere on the gurney or hospital bed.
3) Communicate with the staff about your needs - Make sure the Anesthesiologist has the pre-admit nurse and the post-surgical nurse write on all paperwork and charts, the following information; (his needs to include the chart for the Operating Room);
a) Where you cannot be touched, rubbed, etc.
b) If you cannot have a blanket/sheet on certain parts of your body, due to allodynia.
c) If you get cold (the units are usually cold and the OR's are always freezing), let them know, they have warming blankets.
d) That they need to exercise great care in how they position your body there with regard to your CRPS.
4) Let them know if you are experiencing pain or nausea.
5) When doing the IV prior to going into the OR (or anytime blood work is done actually) they need to;
a) Use the smallest needle possible.
b) Have it done by the most experienced person on the floor, preferably someone from the Anesthesia department.
c) Warm any IV fluids prior to them going into your body.
These things may reduce the probability of venipuncture CRPS; of your existing CRPS being aggravated by the needle insertion; of the IV fluid causing your limb temperature to drop; and of the blood vessels contracting. All causing a spike in your pain that can last long after your surgery is over.
a, b, and c can be tricky things to discuss/request just prior to your procedure. I know. I have experienced this quite a few times, but I have also experienced the problems that arise from an inexperienced nurse having issues with the insertion of the needle and causing a small CRPS flare. It isn't worth the flare not to be a little embarrassed or to cause them a little embarrassment. Only recently I had a nurse with many decades of experience who had a significant problem starting my IV and it caused a severe problem with my arm; bruising and a lot of pain for a few days. CRPS can cause the veins to collapse once the needle is inserted, cause them to move, and other issues making it very difficult for a nurse to get the IV started. Make sure you let them know ahead of time of the difficulties and do all you can to minimize any potential problems.
6) Medications and Medical issues - Bring all your medications with you (be sure they have a list with dosages and strengths), what parts of your body are affected, what medical issues you have had in the past, etc.
Depending on the type of surgery, sometimes patients can get a nerve block prior to or after surgery, or they can have them use a ketamine drip during surgery; these all lessen the impact on the CRPS.
7) Don't leave the facility until you are completely comfortable doing so. The best hospitals will not rush you out until you are ready. Make sure someone drives you home and that someone is there when they explain any follow-up instructions, procedures, etc. Chances are between the CRPS and the anesthesia you won't remember everything they tell you.
8) If you have any problems after you get home call the facility where you had your procedure done, they should have given you a phone number. Don't try and be brave if your pain is higher than you expected in the days that follow. If you feel it is higher than it should be talk to your Doctor and/or nurse. They aren't going to laugh at you or call you a crybaby. It is one thing to be tough, another to be smart.
Lastly, get plenty of rest and don't over-do. Follow your instructions. If people offer help, take it.
The important thing is that as many people as possible need to be instructed in what exactly CRPS is; pre and post surgical nursing staff (bring as many brochures as you can to be handed out by the person who accompanies you is what I always do), and don't be afraid to share what you know. I have never had any nurse say "We know, we KNOW already!" They have all been either eager to learn or have already learned from a prior visit. Many even go and visit the website after my stay and I have even had a few talk to me about a friend of theirs who might have the disease.
If you have any questions at all about surgery and CRPS, or any type of chronic pain, be sure to discuss them with your Doctor. These are just some suggestions we have come up with based on recommendations other patients and Drs. have passed down to us over the years. If you have additional ideas, send them to us so we can add them to this article!
Peace, Keith Orsini