Complex Regional Pain Syndrome & Type 1
I had Type 1 Diabetes for close to 42 years. I was diagnosed with Complex Regional Pain Syndrome (aka CRPS or RSD) in Mar 2015. The CRPS is a Neurological disorder that affects the sympathetic nervous, central nervous system, autonomic nervous etc… It was triggered by surgery I had on both hands in Mar of 2014. It causes pain 24/7 and has now spread to my left foot. It’s crazy how all of these “autoimmune diseases” start and then seems to make us more susceptible to others.
Just read a VERY interesting book called Medical Medium by Anthony William. After you read about how his journey all started, the author goes into great detail about what he feels is the real cause of so many mystery diseases. It’s worth a read and gives a person a lot of insight about why we may all have these autoimmune disorders. A very interesting book:)
Hope this finds you all happy and relatively well.
I’ve done very few forums, so I’m very new at this. Lol!
@ammaly…I’ve done other forums, but I’m new to this site as well. I’m very interested in this Complex Regional Pain Syndrome. I’ve never heard of it but after doing my own research it makes since to me.
I’ve had diabetes x45 yrs and after I had my first child via cesarean, 6mo later I developed a burning sensation in my lower right abdomen. After scans, mris, my doctor dx’d me w Thoraco -abdomenal neuropathy… what a mouthful! He gave me info but I didn’t fit the criteria. Middle aged, vomiting, wt loss. After my second delivery also cesarean, the pain went up on the right side of my back, across ribs, chest, and collarbone. I have other pain issues as well but the burning…like a bad sunburn, it makes sense now. The way I control it is to try and keep my bgs as normal as possible, Tylenol and heat.
My former doctor believes t1 causes every weird thing, but I can’t and won’t believe that. One of my biggest problems is anxiety which I choose to believe can affect every- thing.
p.s…you did great w this forum. you helped me and probably others😉
Are you in an area where there’s a pain management specialist? There are MANY doctors who know NOTHING about crps/rsd. It’s scary. I was lucky, given that I live in smaller populated area in Washington state. The sooner you can get a correct diagnosis, the better. rsdhope.org is a great website for info about the condition.
Stress/anxiety can have a major impact on both the t1d & crps. I know that when I’m stressed, my pain levels increase and blood sugars aren’t as stable. It sucks. I try to avoid stress, but even getting up and starting to move, raises my bloodsugar. I think that’s due to the stress and pain increase upon getting up and moving. Lol. I use meditation, a lot, to try to calm my nerves and stress.
I take 250-350 mg of Tramadol per day and have Hyrocodone w/ tylenol for breakthrough pain. I need something stronger much of the time, but don’t like to take heavy narcotics. I don’t think it’s good for your body and I need to be able to think straight to manage my diabetes.
I’ve also had docs that blame everything on the t1d. Some docs seem to get tunnel vision. Be your own best advocate in caring for yourself and your body.
On the more happy side…I’m on the Priority Access list for the new Medtronic 670G hybrid insulin pump. I should be getting a call in June. I’m very excited about that.
I’ve got an exercise class to get ready for, so I’ll talk to you later:)