Mentor Program For CRPS Patients


One of our most successful programs is our Mentor Program here at American RSDHope. Would YOU like to be a Mentor? Do you need a Mentor?

What is a Mentor?

A mentor’s main purpose is to help another CRPS patient learn about their disease, move forward in spite of it, possibly find local help, and sometimes just be someone who they can talk who truly understands what it is like to live with this disease. Since the expectations of each person will vary, the mentor’s job is to encourage the development of a flexible relationship that responds to both the mentor’s and the other person’s needs.

Let’s face it, having this disease is scary. Many times Doctors tell a patient very little about what the disease entails short and long term. There may even be a great deal about the disease itself that the newly diagnosed patient does not understand about it; sign, symptoms, where to go for information, where NOT to go, how to deal with loved ones and friends who seem to disappear as the disease progresses.

Can only newly diagnosed patients be a part of the Mentor Program? How can I become a Mentor myself? Read on!

Who needs a Mentor?

1) A newly diagnosed CRPS patient, or
2) A patient struggling with the diagnosis and in need of help in dealing with the associated problems, or
3) Loved ones of CRPS patients who need help in understanding the disease, or
4) Parents dealing with children diagnosed with CRPS.

What is the Mentor Program?

What is a mentor? What type of person/patient becomes involved in the program as a mentor?

The Mentor Program is a way for patients who have dealt with CRPS for a number of years to help others. They are patients who have learned; how to accept their disease and move on; that things are not necessarily better or worse, just different; that education is vital to surviving this disease; to pass on that information; and that learning that you are not alone in dealing with this disease is an amazing thing.

A Mentor must be someone with a positive outlook, someone who has been through the struggles and worked through the problems. It doesn’t mean it is someone who has conquered the world, just someone who is fighting the good fight and is willing to share what they have learned with others. Mentors are just everyday people. They don’t have to have all the answers just be able to say they have come across a lot of the same questions and want to help other CRPS patients.

What the Mentor Program Is Not

If they are CRPS patients, most likely they are not in remission, very few patients are. Hopefully that will change in the near future with the new medications coming out in the next year or two. These patients have just gotten better control of their pain, or as many patients like to say, they are “maintaining”.

The Mentors will not be officially affiliated with or working for American RSDHope. While we will be there to provide advice when asked, there is no direct connection. If people decide to participate in this program it is a one on one connection, something between the two of you, not connected with American RSDHope.

A Mentor is NOT a substitute for a Medical Professional. They are not there to provide medical advice; nor to tell you which treatment you should or should not have; to start or stop a treatment or medication; but rather to guide you emotionally through this disease and to help you as you learn to deal with your new diagnosis. If a mentor does provide you with medical advice, push a particular type of treatment/physician, or advocate your stopping/starting a medical treatment you are currently undergoing that is outside the scope of the program and we ask that you bring it to our attention immediately.


Thinking You Might Want To Be A Mentor?

Not Sure What Might Be Involved?

Let’s assume you are a Mentor for an CRPS patient. What might be involved?

As a Mentor you might help them learn things such as:

– How to find a good Doctor, if they are local to you.
– Maybe locate a support group using online or your own resources, either a state or city group.
– Find an on-line support group that meets their needs.
– Help them to understand exactly what it is they have since many Doctors will simply tell them “You have CRPS” and that’s it. Help them to learn about the disease, use our website as a great resource for that or the RSDSA’s.
– Be able to recognize when the newly diagnosed person needs professional help, such as a Psychiatrist or Counselor, be able to direct them to available resources (we have a list of Suicide hotlines here just in case)
– Explain the symptoms of CRPS so they don’t think they are crazy; such as memory loss and the extreme pain involved, lack of ability to concentrate and sleep.
– Help them to understand medical terms.
– Help them to explain the disease and its impact on their families and friends.
– Help them to understand the impact on their lives and future through the many articles available on the website.
– And maybe the most important thing of all, help them to understand they are not alone .
– Lastly, how to navigate around this and other websites and make the most out of the experience, and gain the confidence to become a mentor themselves if they wish to.

You don’t have to personally know all of that information, it is all on the website! I put many of the links right in the article above and when you have some spare time why not peruse the website and discover what else is on there? You might find an article or two from patients who write about their disease that you find very helpful to share, or what about the CRPS Fact Sheet? Or the National CRPS Awareness Ribbon? Awareness Month? The difference between CRPS and RSDS? Applying for SSDisability? Or what to do if your Mentee is going into the hospital for a procedure or maybe just going for bloodwork? What precautions should they take? There is a ton of wonderful information on the website waiting for you to share with them, with your friends, family, Drs., whomever.

Sometimes it might even mean taking the kid gloves off and sending a proverbial wake-up call via email or phone to a fellow patient, something that can only come from another patient, telling them it is time to stop the complaining and DO something about their disease. Maybe that is going and finding a better Doctor for themselves, or educating themselves when their Doctor won’t explain things thoroughly, or simply demanding more from their current Doctor. Maybe the patient just doesn’t want to accept the diagnosis itself. Let’s face it – none of us wants this diagnosis, but there comes a time when we have to accept it. Sometimes we have to be pushed to take that first step, it helps to have someone take it with us.It might mean talking with one of their loved ones or if you have a loved one who will do that with you that is even better.

Would you like to be a Mentor to a newbie? Have you been down this CRPS road before and would you like to help someone else go down it? Would you like to share what you have learned over the years? (typically a mentor would need to have had to have been through at least a couple of years of CRPS). Are you willing to devote some of your spare time to a newly diagnosed person? To help them through this difficult experience? It is a rough road. There will be difficult times, understand that. Before you say yes, you must ask yourself if you are up to this commitment because your mentee will be dependent on you and you must be there for them. 

Usually we have very little notice as to when someone needs a mentor and when the mentee gets assigned to you so your information MUST be current at all times. American RSDHope must be apprised of all contact changes.

We are also looking for couples (where one spouse has CRPS) and men who have CRPS that would like to mentor. These are two areas that we find there is a great need for but not many offer to become mentors. We have only a few couples and men who mentor and they have been wonderful and have had great success but they always in demand! We could always use more parents as well. We have many children coming along who have CRPS and many in their early to late teens and have found great support with each other but younger children need to find their niche in the CRPS world.

If this is something that interests you please contact American RSDHope and tell them about yourself – HERE.
Please be sure to include your contact information; email, address, and phone.

CONVERSELY, IF YOU ARE A Newly Diagnosed Patient, or recently diagnosed and would like a Mentor in your life just tell us what you are looking for in a mentor. Provide the same information as above except explain how you think one could help you. If you aren’t sure, that’s ok too.

If you do not include the contact information needed you will not be considered for a Mentor or a Mentee so please include ALL information.

Don’t be bashful! It can make a difference in your life. This isn’t a disease to take lightly, nor is it a journey you have to take alone. Many of us have been down this road before so let us show you some of the things we have learned along the way to make your journey easier than ours was. You aren’t in this alone. Lynne and Keith are there too if you ever have any questions you cannot answer and the American RSDHope website is full of information and articles to help as well as a wealth of other websites dealing with CRPS/Chronic pain. Remember, you can be an important stepping stone in a person’s journey.

Those who have become mentors have thoroughly enjoyed it and many have made lifelong friends.

Take care,

Lynne Orsini, Executive Director
Keith Orsini, Director
American RSDHope