A Letter On The Day Of Your Child’s CRPS Diagnosis. . .
To Myself and Every Other Mother, Father, Or Caretaker
Wow. I know you are feeling really overwhelmed right now with this CRPS diagnosis. The flow of information during this visit, this simple visit where a doctor took a quick look at your child, did an exam and announced, “This is CRPS”. This isn’t your first doctor’s office – not your second – probably not the tenth . . . this day may have been a month in coming, it might have been 7 years . . . no matter how hard you have searched for an answer to this mysterious pain that is plaguing your child, this day is overwhelming.
There are so many things you don’t know right now. The little brochure they handed you, tells you the tip of the iceberg and you will be tempted to take to the internet, because that’s what we do, right? Beware of the internet. It is a home to wonderful support groups and other parents, it is also the home of horror stories and scary pictures and misleading information at times. Finding a safe place to ask your questions will be a vital part of your journey.
Those letters that you’ve just heard. Whether they called it CRPS or RSD or RND. The reality that while the pain now has a name, it has no cure and the treatments vary – depending on your doctor, your PT, and your team – is scary. You will have to go beyond the hell that you have been in with your child to find the right doctor, the right treatments, and the right course of action for your child . . . and what works for other kids may not work at all for yours. Such is the reality of CRPS syndrome.
So, here is just a little bit of information I wish I had known on that first day as we took our first steps as warriors against CRPS:
- This is not your fault. This is not your child’s fault. No matter what the minor injury, surgery, illness, or if there is no known trigger – it isn’t anyone’s fault.
- The CRPS pain your child is feeling is real. CRPS disease is not a mental health disease, it is a disorder of the nervous system and it causes the pain, whether the pain is in one area or has spread, it all has to do with what is going on in the nervous system. Your child is not making it up, faking it, exaggerating – your child is a warrior and so are you.
- CRPS Physical Therapy is going to be a big part of your child’s CRPS treatment. There are two schools of thought regarding physical therapy for CRPS. One is hard-core, push through the pain, physical therapy where your child will learn how to function through the pain – as the pain is not going away, but it can sometimes be lessened with movement. Movement is important to maintain function. The other school of thought is more about helping the brain retrain itself – there are specific apps on the phone that have guided motor imagery to help the brain regain the ability to tell left from right, through visualization, and through mirror therapy. These PT visits are less brutal and do have a lot of impact. You may find one, the other, or a combination of the two works best for your child. If one seems to be terrible for your child, ask about the other option. You have to know they exist in order to ask!
- Remission is possible, but may be much less likely than they tell you. If your child’s pain is new, you have a better chance, but CRPS does have the possibility of remission. Remission may or may not last, but if your child finds it, celebrate it while keeping in mind that it may not be a life long reality. Hope is harder to find if/when the pain comes back, so practicing coping skills and focusing on enjoying the good times is important whether in or out of remission.
- Time with a mental health professional is beneficial. This isn’t because the disease is mental, it is because developing positive coping skills is incredibly important for handling pain, isolation, and all the other challenges that come along with having a condition like CRPS.
I wish I had answers and advice that would make this go away. But, I don’t. What I do know is that you aren’t alone in this journey and neither is your child. They say this disease is “rare” but it isn’t as rare as you might think. There are amazing support groups, both for you and for your child, along with organizations, both big and small, designed to help you find the resources you will need as you fight this war. This is a war. You will win some battles and lose others, not fighting alone helps you keep up your stamina and not feeling alone is a survival tactic that can’t be overstated. You will have really terrible days as a momma. Seeing your child in pain and pushing them through it to help them live life is and always will be one of the most emotionally traumatic challenges I have faced up to this point. There will be times when your inner momma is saying, “NO!” to the decisions and pressures you and your child face, but despite that feeling, you can’t actually just shutter the windows and stay under the blankets forever. Isolation is the biggest predator that you will have to find a way to slay.
So, what advice can I offer?
- Find a good team of doctors. You want to make sure you find a team that has a pain specialist, physical therapy, and a pain psychologist if at all possible. You may need more CRPS specialists as you go on, but those are a good place to start.
- Check out the internet for organizations that are there to help you – RSDSA, TCAPP, or US Pain Foundation – but don’t do random internet searches until you have settled in and learned a little more, it’s just too unpredictable and can be really overwhelming!
- Give yourself a break and don’t forget to take care of yourself. I know, I know . . . everyone says it, but who has time? You do. You have to make time, because this is a marathon and not a sprint. If you don’t take care of yourself you will not be able to take care of your child and they will need you in top fighting form at all times. Take deep breaths, eat regular meals, try to exercise, and sleep.
- Help your child find their passion. CRPS changes everything and while life won’t be the same, that doesn’t mean there aren’t bright spots ahead.
Okay, it’s been an overwhelming day with this CRPS diagnosis and I know your mind is racing. Remember, no matter how hard this is, you are not alone. Reach out and get in touch and find community/ a CRPS support group, it changes everything about this journey and together we are stronger than we can ever be alone.
Love and Gentle Hugs,
President of Ferocious Fighters
To read more about Meg and her story click here