Short answer · Medically reviewed summary · Last updated: 2026-04-07
The most important advice for someone newly diagnosed with Complex Regional Pain Syndrome (CRPS) is to assemble a multidisciplinary care team immediately and prioritize early, gentle physical therapy to maintain limb function and prevent secondary complications. Building Your Care Team Because CRPS affects multiple body systems, you need a coordinated team. Seek out a pain management specialist—often an anesthesiologist or neurologist—who has specific, documented experience treating CRPS Complex Regional Pain Syndrome.
27 people with CRPS Complex Regional Pain Syndrome have shared their first-person experience on this question at DiseaseMaps.
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Which advice would you give to someone who has just been diagnosed with CRPS Complex Regional Pain Syndrome?
Advice for the newly diagnosed with CRPS Complex Regional Pain Syndrome, written by people who have lived it. What they wish they had known on day one.
The most important advice for someone newly diagnosed with Complex Regional Pain Syndrome (CRPS) is to assemble a multidisciplinary care team immediately and prioritize early, gentle physical therapy to maintain limb function and prevent secondary complications.
Building Your Care Team
Because CRPS affects multiple body systems, you need a coordinated team. Seek out a pain management specialist—often an anesthesiologist or neurologist—who has specific, documented experience treating CRPS Complex Regional Pain Syndrome. A physical therapist familiar with desensitization techniques is equally vital to help you maintain range of motion despite allodynia.
Managing Daily Life and Energy
Living with chronic pain is exhausting. Practice "pacing," which involves breaking tasks into small segments to avoid "boom-and-bust" cycles that can flare your symptoms. Keep a symptom diary to track how changes in temperature, stress, or activity levels affect your CRPS, as this data will be invaluable during your clinical appointments.
Finding Support and Resources
You are not alone; connecting with the 1,998 members in the DiseaseMaps community for CRPS can provide emotional validation that few others can offer. For caregivers, the best support is to provide practical help—such as assisting with household tasks—while learning to listen without trying to "fix" the pain, which is often beyond their control. Regarding financial or research support, look to organizations like the RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) for guidance on navigating disability benefits and identifying legitimate clinical trials.
Staying Informed
Medicine moves quickly, but be wary of "miracle cures." Rely on peer-reviewed literature found on PubMed and updates from the NIH Genetic and Rare Diseases Information Center (GARD). When discussing new treatments like ketamine or nerve stimulation with your doctor, bring printed summaries of clinical guidelines to ensure your care aligns with the latest evidence-based practices.
Disclaimer: This information is for educational purposes only and does not constitute medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
References
- NIH Genetic and Rare Diseases Information Center (GARD)
- Orphanet: The portal for rare diseases and orphan drugs
- Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
Author: DiseaseMaps Editorial Team
Reviewed against authoritative medical sources (NIH GARD, Orphanet, OMIM)
Last updated: 2026-04-07
Sources cited: NIH Genetic and Rare Diseases Information Center (GARD) · Orphanet: The portal for rare diseases and orphan drugs · Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) · PubMed · WHO
Medical disclaimer:
This information does not substitute professional medical advice. Always consult your doctor before making health decisions.
Source:
DiseaseMaps.org
My advice would be you were picked for a reason, you are strong and you were picked because you can handle it if not it wouldn't be you. You got this don't give and stay strong!
Posted Apr 20, 2017 by Chloe 1000
Don't give in. Life can and will get better. It might not be what it used to be physically, but new possibilities will come along.
Posted May 9, 2017 by Jon 1100
The best advice I could give is get educated as much as you can about this disease, as many times you are your own advocate at doctors, ER, and elsewhere. You will have to explain your disease to most to get the proper care and to get answers. Many will question you on what it is and how you can look well when experiencing the pain levels that we warriors with crps experience. The next step would be to find support groups on line and in your area if possible. These will become like a lifeline when you are having your worst days. The ones you will meet will become like family to you. You will lean on them alot as sometimes it is hard to talk to your spouse or family members, as you will feel like you are becoming a burden to them. By talking to those that have crps, you will not have that feeling as often. Do week counsel of some sort not only for yourself, to deal with the new diagnosis and the feeling of loss you will experience, but as a family so that this disease does not drive a wedge in your relationships. It is a hard diagnosis to get since there is no cure, but with support, love, friends, therapy, and your own stubbornness you can live a good life with crps.
Posted May 24, 2017 by Vicki 500
Be supported by a team of professionals who understand CRPS.Reach out to others who have the disease and join groups. It helps to talk about how you are feeling.
Posted Sep 6, 2017 by [email protected] 5060
Keep trying to do everything you can. When it comes to treatments and meds research it then research it then research it again before ever agreeing to try it
Posted Sep 11, 2017 by Craig 1600
Read about and find ways that help you. Everyone us different.
I started reading others comments on facebook but soon realised most were negative and i needed positivity.
I started reading others comments on facebook but soon realised most were negative and i needed positivity.
Posted Sep 13, 2017 by Andy 3550
CRPS is a rare condition, so it is not likely that you will know others with the disease. It is also quite possible the medical professionals in your area know little about it and will be unable to give you answers to your questions. I highly recommend connecting with a support group online. Facebook has several groups dedicated to CRPS including Complex Regional Pain Syndrome Awareness, CRPS/RSD Positive group, CRPS A Patients Perspective, CURE CRPS, Midwest RSD/CRPS Support, and the group I facilitate: Iowa CRPS Support. Virtual groups are great for people dealing with chronic illness. If you life in a metropolitan area, you might find a live support group through your local pain management clinic or hospital or the RSDS.org website. If there isn't one, start one! I did! There is nothing better than having people commiserate with you who really get what you are going through. You can ask questions like "Does anyone else..." and get useful and supportive answers. Make sure you're part of a community that does not tolerate harassment or bullying. I would also be careful of joining a group sponsored by someone who has a treatment modality to sell. Support groups should have a list of rules of conduct and require that any information shared be documented, researched and verified. We are healthcare consumers and need to be wise. Learning what has worked for others living with this disease is the most helpful thing you can do for yourself.
Posted Sep 15, 2017 by DrLisa 3750
Remain positive and be determined. Be proactive with your physio
Posted Sep 19, 2017 by Alex 2550
Research!
See as many professionals as you can quickly!
Go to physical therapy.
Get treatment immediately.
Find a pain clinic that specializes in CRPS.
Get a 2nd then a 3rd opinion
Keep going
See as many professionals as you can quickly!
Go to physical therapy.
Get treatment immediately.
Find a pain clinic that specializes in CRPS.
Get a 2nd then a 3rd opinion
Keep going
Posted Oct 8, 2017 by Valerie 1500
Work hard with physio
The harder you work early stages of devolving Crps the better change of going into remittion. It's hard but you really do have to push threw the pain.
Don't be scared of the pain because Crps causes so much pain all the time you are going to be in pain if you don't do it so why not try and do stuff your find the pain will not be much different either way.
The harder you work early stages of devolving Crps the better change of going into remittion. It's hard but you really do have to push threw the pain.
Don't be scared of the pain because Crps causes so much pain all the time you are going to be in pain if you don't do it so why not try and do stuff your find the pain will not be much different either way.
Posted Nov 11, 2017 by Katie Banks 1015
Find an expert pain doctor who actively treats crps patients and find a psychologist that does the same. You will need both!!! Do not think you can do this yourself because you can’t. You will fail
Posted Nov 11, 2017 by Robbie 2000
I was blindsided totally. I didn’t know what it was, being given some information with facts and basic information would have been helpful to me. Letting them know that you can still have a life with CRPS and that your life isn’t over with the diagnosis. Finding your way to live with your diagnosis is what they need to do
Posted Nov 11, 2017 by Aj 2000
Ask lots of questions (from medical professionals and other CRPS patients) to gain a better understanding of the disease. It’s important to realize that you are your best health advocate..
Posted Nov 12, 2017 by Kim 400
Find a good support group! Whether they have the disease or not, someone who can empathize with what toy are going through is critical. Seek treatment early! The earlier it is treated the more likely to prevent spread and have a positive outcome.
Posted Nov 12, 2017 by Shanna 5000
If you believe it has been less than six months since initial onset, find a professional who is knowledgeable about the condition and work vigorously with them to possibly get the condition into remission. If not within the six months, seek out knowledge from the same type of professional and support groups who have other people with the same condition. Also, keep a log of everything you can write down having to do with your CRPS.... it will help with doctors and your own sanity too!
Posted Nov 12, 2017 by organizernut 350
Find a provider that specializes in CRPS. They will be able to treat your injury properly. If your injury was work related, find a lawyer who specializes in CRPS.
Posted Nov 12, 2017 by ladyff1481 2050
If diagnosed, start graded motor imagery exercises immediately and ask to be sent to a pain management clinic.
Still struggling for a diagnosis? Learn the language. Describe in detail your pain. It's the only way to get your diagnosis of CRPS. And follow the above advice -- graded motor imagery exercises but start with the first. Don't advance without professional help.
http://www.gradedmotorimagery.com/
Still struggling for a diagnosis? Learn the language. Describe in detail your pain. It's the only way to get your diagnosis of CRPS. And follow the above advice -- graded motor imagery exercises but start with the first. Don't advance without professional help.
http://www.gradedmotorimagery.com/
Posted Nov 13, 2017 by Thea 3150
I was recently diagnosed, Jan of 2018,. I've learned to take 1000mg of Vit C per day to avoid it spreading, and to do as much therapy as possible. When I was told to go to Pain Management for the Stellate Ganglion blocks, I was petrifies- I hate needles- and wasn't having a shot in the neck! But, I had awesome Dr & nurses, and a mega dose of Xanax, and that really helped take the hard edge off of the pain. Some of it has since come back, and if it gets too bad, I will call and set up another block. No fear!
Posted May 15, 2018 by Tammy 800
Don’t panic.Remember, you are not alone. Get a good Pain Specialist, clinical physycologist.
Don’t listen to others Regards their medication as they may not work for you .
Research this disease to understand exactly what is happening to your body.
Don’t listen to others Regards their medication as they may not work for you .
Research this disease to understand exactly what is happening to your body.
Posted Oct 25, 2018 by Misty 2100
It is important to learn as much about it as you can. Knowledge can assist you to get the help you need. Realize there are very few people who understand what this is. You know your body better than anyone else. And in spite of what you or other's may believe...you are not crazy!!! Stay strong!!!!!!!
Posted Nov 1, 2018 by Judy 3000
Seek diagnoses quickly from a Neurologist or Specialist to start a series of blocks to possible put into remission. Start anti-inflammatory meds and pain meds and most importantly Physical Therapy!
Posted Jan 5, 2019 by Cynthia 4000
If you just were diagnosed w CRPS/RSD , and your symptoms are under year, there is a great chance of successful treatment and remission.
If not don't lose heart. Keep fighting for the treatment that works best for your body. Be it ketamine, scs implant, pain meds or out of box meds ie anti sezuires meds. And or combination of them all for you.
Or medical marijuana.
Pain sucks. But keep going. Rest when needed. Use hot pad when needed.
And don't forget tear ducts God creation. So use them too,
If not don't lose heart. Keep fighting for the treatment that works best for your body. Be it ketamine, scs implant, pain meds or out of box meds ie anti sezuires meds. And or combination of them all for you.
Or medical marijuana.
Pain sucks. But keep going. Rest when needed. Use hot pad when needed.
And don't forget tear ducts God creation. So use them too,
Posted Jan 16, 2021 by Patricia 3050
Get treatment immediately
Posted Mar 19, 2021 by Melanie 1200
It's okay to be scared. Find a good support system and find people who also have CRPS and talk to them. You will need to advocate for yourself. Doctors might not always take you seriously, but please don't let them be dismissive of your symptoms and experiences.
Posted Mar 29, 2021 by Sage0920 2000
Before receiving a diagnosis I was absolutely terrified. Had no clue wgst this unbearable pain was at all. I was lucky. I have always been treated byban osteopath and he suggested CRPS. As soon as I found this out I demanded a referral to the Walton Centre for Neurogical Excellence at Aintree and they have looked after me ever since. A support network is vital. It is a massive learning curve to.learn to.live with such an incredibly psinful.life changing condition which is still so.unknown and in 74% of cases misdagnosed. Used to feel like banging my head against a brick wall as some doctors and nurses have never heard of it. Plus in a lot of cases it is invisible but pain is. There is a lot of grief involved fimding you cant do things as well or at all anymore but thete is always a way around things. Improvise adapt overcome. Never give up basically. Gave up Twitter and doom scrolling looking for magic answers on some medical website for a cure. At the moment there are none despite what dodgy websites may promise. After I stopped doing all of that things are a lot better. Acceptance is such a big part. Might not be able to do something this way hut what abput trying it this way. That is only my.opinion. Others may not agree
Posted Nov 3, 2022 by Heather 5020
Take a moment and breathe. Each patient is different. Each of us has a different "initiating event" so each of us have a different experience. Some are better than others & some are much harder. But the most important part of life is the opportunities we have to live. So no matter what you find, your experience is going to be different.
Posted May 6, 2026 by Flora Langel "Naanad" DeKock 1745
Translated from portuguese
Improve translation
Courage! Unfortunately, there is always worse.
It is not the end, is a trial.
It is not the end, is a trial.
Posted Oct 29, 2017 by Isabel 500
