About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (33)

Sep 10, 2018 · CRPS - anyone suffering with complex regional pain syndrome in Chronic Pain

Sorry couldn’t respond quicker, had little trouble logging in. My psychiatric doctor switched me over from Wellbutrin to Cymbalta when I was diagnosed with CRPS in 2015. Cymbalta has the advantage of also helping to address nerve pain in addition to depression. Of course each of us can interact with medicines and treatments differently, but I have been able to tolerate it. Feedback from the many, many doctors I have visited re: amputation is “don’t do it.” Can make your CRPS much, much worse. (My CRPS was a result of a right ankle fracture that went bad.) I also participate in 2 other on-line sites specifically for CRPS that have found helpful. One is out of the U.K., but has folks all over the globe sharing (6,000+ members). As new symptoms emerge, it has helped me so much to share and see if others have experienced the same. The other is a national group out of Connecticut. Here are sites if you’re interested (Justin, hope it’s o.k. to share.) http://www.crpscommunity.co.uk and RSD/CRPS Friends in Pain (org is Reflex Sympathetic Dystrophy-A Place for Support-Stop the Burn. May you have a low pain day.

Feb 6, 2018 · RSD/CRPS in Brain & Nervous System

Greetings. While ketamine infusions didn’t work for my CRPS, it did for other patients at the clinic providing them. I now have started meditation & biofeedback with psychiatric pain doctor at Beth Israel pain center and have found that it helps me manage better. I am also getting reike sessions, but it continues to be a journey. I hope the treatments help! Stay strong.

Oct 26, 2017 · Living with Neuropathy - Welcome to the group in Neuropathy

Venki, it is a hard reality to absorb and it does suck. Treatments and medications, etc. generally provide the best assistance possible to manage the symptoms and pain, but they are not a cure. Once one gets over the reality check, though it can be really hard at times, focus on those things that bring joy. In frustration with you.

Sep 8, 2017 · CRPS and Sleep Apnea in Brain & Nervous System

Thanks for the input. Definitely will talk to my doctor about my symptoms and the type of machine I am using.

Sep 7, 2017 · CRPS and Sleep Apnea in Brain & Nervous System

Thanks for suggestions. Started using CPAP in March/April and then had significant problems with medications and blood sugar levels that got me on another track and stopped using during that time. Was recently reminded of the importance of using it and couldn’t remember exactly why I stopped, so started again about two weeks ago. Some nights it isn’t as intense as others, but it can be really bad. I also remembered this was a big reason I stopped with the CPAP before.

Sep 7, 2017 · CRPS and Sleep Apnea in Brain & Nervous System

I have had Chronic Regional Pain Syndrome for 5 years that began in my right foot, but has spread to other areas in my body. This year I was diagnosed with sleep apnea and began to use a CPAP machine. When using the machine, I am finding that I wake up in the middle of the night with my whole body on fire–from my brain to my toes. It is like all my nerves are on alert and on fire. I will be seeing my sleep doctor next month, but don’t think she has had a patient with CRPS before. Has anyone else experienced anything like this?? So hard to understand what is happening to my body.

Aug 17, 2017 · Neuropathy and Blood Flow in Neuropathy

Appreciate your perspective. I’m still in the “figuring out phase” with about 6 years on this journey. It can be so debilitating when you hit the wall and are forced to rest and regroup over and over again. Baby steps…!

Aug 15, 2017 · Chronic Pain members - Welcome, please introduce yourself in Chronic Pain

I agree with you 100 percent. Recently I saw a pain doctor at a prominent center for my Complex Regional Pain Syndrome. My CRPS has spread and I was (and am) looking for more coordinated care. Unfortunately, the doctor I saw told me that CRPS doesn’t spread (she said it’s Complex REGIONAL Pain Syndrome meaning it doesn’t move to other areas). Dr. Schwartzman researched and wrote an excellent article on how it can affect other areas of the body, but she had not heard of him. I just put together a short note thanking her for seeing me and enclosing the article. Sometimes it blows my mind when looking for help I have to “educate.” However, as you stated so well, helping the doctor help you–or tilling the ground so that others may benefit.