NOW WHAT??? (WHAT TO DO WHEN FIRST DIAGNOSED WITH CRPS.)
Receiving a diagnosis of CRPS can be very overwhelming, confusing and frightening. What you read on the Internet about CRPS is not always true. For every disease there are horror stories and situations which are hugely exaggerated. Get the facts from our site. Then use our CONTACT US page to further clarify any questions you may have. We know people do research on the Internet however it is best to stick to the charity sites, well known clinics and hospitals. (Please see our LINKS page.) Chat rooms are often run by non-medical professionals who do not have the knowledge or facts. They basically provide horror stories.This only serves to further terrify people. Please replace any fear of CRPS with knowledge. You can do this by contacting us. We have been doing this for 16 years.
Please watch our videos. CRPS FACTS
SO YOU HAVE BEEN DIAGNOSED.......
1. Think back to when signs and symptoms first appeared? Was it 0-6 months ago? Early cases need prompt attention. Make sure your family doctor is on board and see if he/she will make a referral to a doctor/clinic recommended by PARC. Then call our HELP LINE for recommendations or visit our CONTACT US page and email us with your request. Your personal information remains confidential.
2. Physiotherapy. Any case of CRPS needs a physiotherapist (or certified hand therapist for upper limbs) to start your rehabilitation program. The earlier this therapy is started, the better. CRPS makes muscles atrophy and joints stiff. Movement becomes difficult. Range of motion is quickly lost. If you have an affected hand, foot or other body part which does not move well, you may also need graded motor imagery and/or mirror therapy. (See http://www.noigroup.com) Physiotherapy may be ongoing for a long time. You may also have exercises to do at home. Anyone doing PT needs to work very hard and not give up!
PT is crucial to improving your CRPS. The main thing is to move and keep moving. Recovery is possible.
3. Do you already have a specialist referral? If you do, you can check with us to see if he/she is on our referral list. This is especially important if you are an early case up to six months.We can recommend a specialist. It is important to make sure that the specialist has a good track record, just like a thoroughbred's racing form. The specialist can be a neurologist, anesthesiologist, pain medicine doctor, physiatrist (PMR),pain management doctor, rheumatologist or any doctor whose "interest" is CRPS. Unfortunately, CRPS does not have a "specialty" like neurology or cardiology. Not every doctor can treat CRPS and to reach the experts people will have to travel.
4. Does a medical professional suspect you have CRPS? Please take this seriously. The person could be wrong but why take the chance? It could mean a huge difference in the quality of your life from now on. Often the physiotherapists see it first. Sometimes the Orthopedic Surgeons see it but cannot treat it. Please get in contact with PARC and we can help.
5. What else can I do? While you are waiting for your medical appointment there are many things you can do. You can start your physiotherapy. Please read through the site which has the latest information on CRPS (research, events, therapies, treatments, etc). Our alternative treatments, advice from patients (ADVICE) and survival tips (SURVIVAL) are from other patients who have been exactly where you are. This advice is non-medical in nature. Please read Treatments. (Please note: We do not give medical advice.)
6. What if I need more information? If you send us a request via the CONTACT US page we will send out a CRPS package by mail. If you need a doctor recommendation, ask us. Emails sent are about current treatments, research and news. People can always send questions by email as well.
7. What if still want more information? It is possible to join our Canada-wide network where you can find others with CRPS to talk with. Joining means you are entitled to PARC ALERT, Newsletter, Ongoing Support, PARC Forum and a free PARC Consult to discuss your plan: a CRPS Self Management Program. Please see our Membership page.
8. Our HELP LINE days are Monday-Thursday 7-10 PM.TEL: 905 934 0261. Any changes are recorded on the voice message. (no weekends or holidays). Due to the many time differences (six time zones) across Canada, we can arrrange a personal call during a specific day/time via e-mail contact. We hope you will be considerate of the time differences. To check your time zone and ours, please click on TIME ZONES.
Please use our CONTACT US page.
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