Which advice would you give to someone who has just been diagnosed with CRPS Complex Regional Pain Syndrome?

See some advice from people with experience in CRPS Complex Regional Pain Syndrome to people who have just been diagnosed with CRPS Complex Regional Pain Syndrome

CRPS Complex Regional Pain Syndrome advice

Advice for Someone Diagnosed with CRPS (Complex Regional Pain Syndrome)

Receiving a diagnosis of CRPS (Complex Regional Pain Syndrome) can be overwhelming and challenging to process. This chronic pain condition affects the nervous system, causing severe and often debilitating pain. While there is no cure for CRPS, there are various strategies and treatments that can help manage the symptoms and improve quality of life. Here are some important pieces of advice to consider:

1. Educate Yourself:

Take the time to learn about CRPS and understand its symptoms, causes, and treatment options. Knowledge is power, and by educating yourself, you can better advocate for your own health and make informed decisions about your care. Consult reputable sources such as medical professionals, support groups, and reliable websites to gather accurate information.

2. Build a Support Network:

Living with CRPS can be emotionally and physically challenging. It is crucial to surround yourself with a supportive network of family, friends, and healthcare professionals who understand and empathize with your condition. Joining support groups, both online and offline, can provide a sense of community and a platform to share experiences, coping strategies, and advice.

3. Find a Knowledgeable Healthcare Team:

Seek out healthcare professionals who specialize in pain management and have experience treating CRPS. This may include pain specialists, neurologists, physiotherapists, and occupational therapists. Collaborate with your healthcare team to develop a comprehensive treatment plan tailored to your specific needs.

4. Explore Treatment Options:

CRPS treatment typically involves a multidisciplinary approach, combining various therapies to address both physical and psychological aspects of the condition. Some common treatment options include:

Physical Therapy: Working with a physical therapist can help improve mobility, reduce pain, and increase strength and flexibility. They may employ techniques such as gentle exercises, stretching, and desensitization exercises.

Medications: Your healthcare provider may prescribe medications to manage pain, reduce inflammation, and improve sleep. These may include analgesics, anti-inflammatory drugs, antidepressants, or anticonvulsants.

Sympathetic Nerve Blocks: In some cases, nerve blocks can provide temporary relief by interrupting the pain signals sent by the affected nerves.

Psychological Support: Chronic pain conditions like CRPS can have a significant impact on mental health. Consider seeking therapy or counseling to address any emotional challenges, anxiety, or depression that may arise.

Alternative Therapies: Some individuals find relief through complementary therapies such as acupuncture, biofeedback, meditation, or relaxation techniques. While these may not work for everyone, they are worth exploring under the guidance of a healthcare professional.

5. Manage Stress:

Stress can exacerbate pain and make coping with CRPS more difficult. Incorporate stress management techniques into your daily routine, such as deep breathing exercises, mindfulness, or engaging in activities that bring you joy and relaxation. Prioritize self-care and make time for activities that promote mental and emotional well-being.

6. Maintain a Healthy Lifestyle:

Adopting a healthy lifestyle can positively impact your overall well-being and potentially alleviate some CRPS symptoms. Focus on eating a balanced diet, getting regular exercise within your limitations, and prioritizing adequate sleep. Avoid smoking and excessive alcohol consumption, as they can worsen symptoms and interfere with treatment effectiveness.

7. Keep a Symptom Journal:

Tracking your symptoms, pain levels, triggers, and treatment outcomes can help you identify patterns and make informed decisions about your care. Use a journal or a smartphone app to record your daily experiences, which can be valuable during medical appointments and discussions with your healthcare team.

8. Be Patient and Persistent:

Living with CRPS can be a long and challenging journey. It is important to be patient with yourself and the treatment process. Some treatments may take time to show results, and it may require trial and error to find the most effective combination of therapies for your specific case. Stay persistent in advocating for your needs and seeking the best possible care.

9. Stay Positive:

While it is natural to feel frustrated, angry, or discouraged at times, maintaining a positive mindset can significantly impact your overall well-being. Surround yourself with positivity, engage in activities that bring you joy, and celebrate small victories along the way. Remember that you are not alone in this journey, and there is hope for managing and improving your quality of life.

10. Seek Financial and Legal Support:

CRPS can have a significant impact on your financial situation, especially if it affects your ability to work. Explore available resources, such as disability benefits, insurance coverage, and legal assistance, to ensure you receive the support you need.

Remember, this advice is not exhaustive, and each individual's experience with CRPS is unique. It is essential to consult with your healthcare team for personalized guidance and support. With the right approach, management strategies, and support network, it is possible to navigate life with CRPS and find ways to improve your well-being.

Diseasemaps

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.

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

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.

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/

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.

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,

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

Translated from portuguese Improve translation

Courage! Unfortunately, there is always worse.
It is not the end, is a trial.

Posted Oct 29, 2017 by Isabel 500