1. Find life rafts
I strongly urge anyone who suffers from CRPS to find a good counselor, familiar with dealing with those in chronic pain. Both you and your partner will benefit immensely from the help of a professional as you navigate the chaotic maze that CRPS will turn your life into. CRPS tends to take no prisoners, and generally that applies to your relationship too. CRPS places immense stress on your body, your psyche, your life and your loved ones (To parents of children with CRPS, read The Horror of Being a Parent of a Child in Daily Screaming Pain).
Do not be too proud to realize that you need professional help. Generally, you cannot expect your doctor to be your counselor also.
In addition, you will benefit immensely from any positive habits that you can bring into your life, such as meditation and talking to others who suffer from CRPS and can relate to you in a positive way. I do not advocate support groups that tend to focus on the negative aspects of CRPS. While you certainly have every reason to throw yourself a pity party, you deserve better.
Remember that what you focus on expands. You may hit low points, and feel the need to reach out to others and express your fears, anger, and frustration, and that is okay.
However, your support group should generally add positive energy to your life.
2. Ruthlessly cut out negative people who do not support your fight for recovery
Unless, of course, they are family, and even then you should minimize your contact with them as much as possible. In their case, put on your invisible “Teflon” coat, so all their verbal arrows just bounce off of you. If you have toxic friends, acquaintances, or support groups, cut them loose. You cannot afford negativity in your life. Do not listen to anyone who tells you that you will never get better. You simply cannot afford to buy into this mindset.
3. Stop apologizing for being sick: It’s not your fault
All the guilt in the world will not bring your old life back, will not pay the bills, and will not take pressure off of your loved ones. Guilt, in this case, is a wasted emotion, draining your energy like water into the parched earth. You cannot pay guilt coins and make things better. It is a useless emotion under these circumstances, and you can better apply that wasted energy much more efficiently somewhere else.
4. Study those who went into remission
If you run into other CRPS sufferers in your support groups or other circles who say that they have recovered to some degree, ask them questions. Do not automatically assume that they are full of it. Friend them on social media if possible, and do not only ask them questions, but look at their posted photographs and other posts so that you may be inspired by their paths.
See more: What does remission look like?
5. Become your own advocate
Your health is your responsibility. It is absolutely irresponsible to hand over your most precious possessions (your body and your health) to your doctor, blindly trusting them. You should research every treatment, every medication, and every supplement suggested to you. Do not just Google the official websites either, but look up, for example, “Drug X side effects.” That way, you will connect with ten thousand actual people who took or are taking drug X, discussing their own experiences with it. Get into the habit of taking your pain medication only when you have to. Never let taking medications become a habit.
6. Become a researcher
Stay on top of your condition. Do not expect your doctor to do this for you. With the Internet at your fingertips, this is not as hard as it used to be. Try using Google Scholar when looking for the latest research. For example, just type in “Irritable Bowel Syndrome CRPS” (Also ). The research is always dated. Not all articles are free, but many are. Print out relevant research and share that with your doctor.
Note – Click more if you want to learn more about CRPS & The Digestive System.
7. You have the right to be supported
Consider your condition to be a serious one. Sometimes, when so many doubt you, you may start doubting yourself.
While it is good to stay positive, please do not feel the need to pretend that you feel good all the time. When you stuff all that pain down where others can’t see it, you only do more damage.
If people around you offer their support, accept it. Try to find others in the same boat to whom you can vent every now and then.
It may be a good idea to sit down with people you are fairly close to (not just you very inner circle), and explain to them that your condition causes you to hurt every day.
I tell my patients to word it something like this: “I want you to know how much our relationship means to me. I know that you care about me and my health and I appreciate it. Generally, I am going to have pain every day. I appreciate it so much when you ask me how I am feeling, since it makes me feel that you care. Please understand though, that generally, my good days will be very rare. It is important for me to say this to you, as I sometimes feel that people get frustrated if my answers never change. Does this make sense to you?”
Most people will respond positively to this conversation, and if they don’t, that is not your problem.
8. Keep expecting to heal
My opinion here might not be popular, but I stand firmly by it. If you decide that you will never get better and that CRPS will be your lifelong companion, the chances are that you are right.
You have to keep on fighting, keep an open mind, keep researching, and keep your eyes and ears open for new developments. Like the saying goes, whether you think you can or think you can’t, you are probably right.
9. Approach your body as a unit, not a bunch of parts
Start understanding how one part connects with another part. Develop a basic philosophy and appreciation for how the body works and how intelligent it is. Rebuild and heal it as a unit. Make sure you understand Sympathetic VS. Parasympathetic function.
10. Be kind to your body
To the extent that you can, support your body with good food, good water, sunshine, and love. No one needs this more than you do. Every available speck of energy should be conserved in your case, so that it can be applied to healing. You do not need to waste energy on things like unhealthy food, emotional stress, smoking, or other energy thieves.
11. Learn how to wake up your Parasympathetic Nervous System
Remember, this is your “rest and digest” nervous system. Simple things like mediation (I like Wayne Dyer’s book ‘Getting in the Gap’ to start with) or breathing exercises, if performed every day habitually, can be tremendously helpful in this regard.
12. Try not to isolate yourself from the world
When you need a hug, ask for one. When you are having a bad day, share that. Try to interact with your friends and loved ones as much as you can, even if it means that you are just watching a movie with them on the couch in your PJs. Even getting some of you is still better for them than none of you at all.
13. Give all disciplines of health care an equal shot
I have run into this often. People often seem disappointed that I am not a medical doctor. “Oh. You’re a chiropractor.” Don’t be a health care snob! No matter what the letters behind their name says, it is my opinion that doctors and other professionals learn what really matters after they graduate, through experience and postgraduate studies. Your guide to health may not be a medical doctor, or even a doctor. Research their results, and make sure that they are knowledgeable and good at what they do.
14. Do not put up with any abusive behavior or bad treatment from a health care professional
If your doctor is ignorant about CRPS, and unwilling to learn, fire them.
A good sign of this is if they accuse you of faking or exaggerating real pain, or saying ignorant things, for example, that CRPS cannot spread or affect the GI tract. If your doctor is short, rude, dismissive or uncaring, also fire them. Again, you employ your doctor, not the other way around. Doctors are not untouchable gods who may not be questioned or relieved from their employment as your caregivers. They are mortals.