CRPS FLARES and no support from family

@sisenberg
If you do not have a psychologist that specializes in helping patients with chronic pain, that would be a good support for you. You may also want to work with a dietitian/nutritionist to review diet/supplements to determine what may best help.

Finding support groups for CRPS would help you as well. Having a spouse that doesn’t understand your condition or show sympathy or empathy is difficult. When you have an invisible pain condition, it is hard for others to understand what someone dealing with chronic pain and suffering is like to deal with daily. If they experienced the pain, they would possibly be more empathetic.

You really need to care for yourself and get the help you need. Trying to get a partner to change is not worth your energy. You need to focus your energies on getting help from others to meet your care needs.

1. https://rsds.org/
2. https://crpswarriorsfoundation.org/
3. https://www.ninds.nih.gov/health-information/disorders/complex-regional-pain-syndrome
4. https://www.acibademhealthpoint.com/finding-crps-support-groups-in-the-usa/
5. https://fighttheflame.org/support-group
6. https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/diagnosis-treatment/drc-20371156

Thanks so much

I feel for you. It’s hard coping with pain when no one can see the cause. I’m sure many think that it’s all imagination. Sympathy is more forthcoming if there is a physical problem that can be seen. Just remind yourself that it’s not their fault as otherwise their attitude makes you so angry which isn’t good for your pain. I feel for you. Take care

I was diagnosed with CRPS 25 years ago. I never married because the lack of empathy from the man I was with at the time and I my family wasn’t helpful either. My Mom and maternal uncle were the only 2 people who tried to understand the disease. I have found that stress makes flares worse, along with cold, inactivity and eating foods and specific to me that worsen the inflammatory response. Find an outlet for pain like walking short distances to move your body and give you some time to think. I was never able to change the minds of my family so some of them aren’t around much anymore. I have replaced them with friends who understand. When was the last time you went to pain management? I had a recent flare after my Mom passed and it was helpful. The new doctor changed my meds and gave me an injection that really helped. She also told me that she was there to support me. It felt good to just hear those words!

Sorry, I could not reply sooner. I was dealing with a particular difficult flare, or I think it was. If you go to the RSDSA website (.org) and click on Community. Scroll down to Support Groups, click on and it will bring you to organizations that would be able to help you. If you keep scrolling, you reach by State. Here are local support groups within a state. I am from Wisconsin and working on getting an in-person support group started for this side of the State. I have been battling this for 40 years. This website has helped me out a lot. If you need to talk, vent, scream, swear, I'm game. I was feeling like that for the last three weeks. The sad part is this "disease" is not well known. When someone finally gets diagnose, that person is almost thrown to the wind. Treatments are a crap shoot. It may or may not help. It may work first, but second a complete failure. There is always support out there. Sometimes you need to dig to find one. Always remember you are not alone. Not sure if I am supposed to include a website, but it has some very good and helpful advice. I hope this helps. The only thing I wish support groups would let you do is really let it out. Sometimes that needs to be done before anything else can be done. Let me know if I can help out in anyway else. My schedule just opened up.

I hear the weight behind what you are sharing, and I want to acknowledge how real that cycle of physical pain and emotional strain can be—especially when those closest to you do not fully understand. I work in the wellness field and have walked alongside several individuals managing CRPS. It can be relentless, and the emotional component is often underestimated.

If you are not already familiar with it, RSDSA (Reflex Sympathetic Dystrophy Syndrome Association) has been supporting the CRPS community for over 40 years. They offer both practical information and emotional validation, which can be incredibly grounding during flares. https://rsds.org/

You might also find this peer-reviewed article, which can be found on pubmed.gov, of interest : Pulsed Electromagnetic Field Therapy for Complex Regional Pain Syndrome. While it's just one study, I have personally seen a few individuals with CRPS (of different types) experience relief—sometimes modest, sometimes meaningful, sometimes powerful—through PEMF therapy, especially when it is part of a broader support plan.

If it would be helpful, I’m happy to share more about what I have observed, and what others have tried—just reach out. Wishing you steadier days and support that brings both physical and emotional relief.