You need to know Complex Regional Pain Syndrome is a real disease.
You need to know the pain is real.
You need to know you are not crazy.
You need to know there are people who understand what you are going through.
You need to know there are people experiencing pain like you are.
You need to know it CAN go into remission.
Remember, lonely and alone are 2 different things, you are NEVER alone!
Complex Regional Pain Syndrome or CRPS is just a disease and it does not define who you are. You are strong and this disease will not beat you. Yes, you are in for THE battle of your life, but you don’t need to fight it alone, there are more of us than you think. Facebook is a great place to start looking for support groups! Over the past few weeks, I have joined dozens and they are an absolute lifesaver. Just search crps or rsd.
When you need to cry, cry. When you need to yell, yell. When you need to scream, scream. Let it out, let it all out. Bottling up how your feeling is not healthy and can work against you, expressing how you feel is a good release. Speak with your spouse, family, friends, a doctor or a therapist, support groups, anyone who will listen. This disease wrecks havoc, not just on the body, but your mind also. Your mental health is just as important as your physical health, treat them equally, you need balance restored to your entire being.
Find doctors that are very familiar with CRPS, do not be afraid to ask how many patients they have successfully treated with the disease, they work for you, hire the right people for the job. Some doctors will not know anything or very little about CRPS, this is OK, it just might make finding the right one a little tougher. Find a support group, join forums or even start a blog, make Google your search partner. You only want positivity in your life. Be selfish, it is OK. This is time to take care of you.
It is very important to remember that your loved ones will not understand what you are going through or feeling. Be patient with them, they love you. They may be scared or are unable to watch someone they love in pain. This disease will not only push you to your limits but your family and friends too. You may lose some along the way.
Keep a positive attitude. Stay busy. Exercise the affected limb. Be honest with your doctors. Do your own research. Be the Chief Executive Officer of your CRPS, take charge. Get to bed early. Have healthy eating habits. Have a sense of humor, sometimes laughter IS the best medicine.
Never quit, the pain shall pass eventually. It may last a minute, an hour, a day, a year or even longer, but there will be an end. Always remember to breathe through the pain. Keep only positive thoughts in your head, negativity must not be a part of your life. You are stronger than you even know, keep telling yourself that you can do it, you can beat it!
I do understand, I am living with this disease too.
I am here for you, and you may feel lonely but you are NEVER alone!