Hi Chris, welcome to the club. Sorry to hear you are having a terrible time right now. I've had crps type 2 for 5 years. Your story sounds alot like my own experience. It started in my right leg. Its from lumbar spinal nerve damage after lumbar surgery 2 lower discs removed, blah blah blah. Anyway, my right foot n ankle swelled, turned red purple , searing pain just like alot of folks experienced. Couldnt sit down without it turning purple, could stand either. Right side abdominal pain, hip pain, all the way to my foot. Went on to develop sensitivity to bright sunlight (need sunglasses all thetime now), then digestive issues- acid reflux n irritable syndrome, dizziness when i go from lying down to standing, anxiety, muscle twitching spasms, cramps, and buzzing all day n night, then to top it all off, i get hypothyroidism, b-12 deficiency, and calcium deficiency. Seemed like a huge windfall of problems and i never had health problems before. I saw all different specialists for each individual thing. It wasnt until i saw a rheumatologist 8 months ago that told me all these things were linked to something called CRPS, and i have fibromyalgia too! The rheumy referrd me back to my primary care doctor. I guess ive finally gotten to where i want to see what other types of treatment is available. This crps has spread to involve both legs and my arms and my strength n stamina afe severely impacted. I just thought i would share my storywith you. It was very scary when all these things kept cropping up not knowing why or how. At least now i understand and i think this has stabilized for the time being. Hope my story helps.

Omg!! That sounds exactly like me to the T. I honestly believe mine started in 2009 or 2010 when I tore the ligament in my ankle for the 2nd time and sprained my lower back both while playing basketball. It just got real bad from hitting my foot on vacation last year.

Did the Dr let u know it was spreading internally or just u know it did? For me I know it is. Everybody think I'm a hypochondriac but I know I'm not. Also, did u get written paper stating u had CRPS?

I went thru years of thinking i had independent health problems that all started after spine surgery. When i saw the rheumatologist she assessed my constellation of health issues and with the results of the ncs/emg test of my legs she diagnosed me with crps type 2. Of course i immediately looked on the internet and found my symptoms lining up with her diagnosis. It all made sense. This thing has gone internal. Thats where the dizziness, digestive, thyroid, anxiety problems, vision problems came from. Glad to know. Eases the mind, really. My spine orthopedic may have thought i was crazy, the neurologist said i was still recovering from spine fusion surgery, another neuro surgeon suggested MS. I was like a ball in an arcade game getting bounce from dr to dr. I knew there was something wrong but none of them could see beyond their own specialty. My primary care dr sent me to the rheum who finally figured out the mystery. So yes its on paper now. I just need to find the right 'team' to fix me up. I,m glad im not crazy and dont have ms.

Thanks sounded a lot like my Dr. journey too. I went through 13 doctors before 2 of them agreed it was CRPS. My family thinks the light headedness and dizziness and shortness of breath is anxiety and stress related and that's all it is. I'm in agreeance with them to a certain point, but 90% of it is my CRPS I know for a fact. Was thinking the cymbalta was supposed to help with that, but not sure it is. Maybe the pm Dr. can help with that issue. It's gotten to a point where I feel like I have stood up too fast just from sitting in a normal chair. It's getting annoying :/ Headed to the ent tomorrow to get my "lumpy" throat and tight diaphragm checked out as well as get my allergy shot. I sure hope I can get something to help soon. Trying to work is becoming a hassle

Once i started taking cymbalta alot of my anxiety and depression went away. It became easier to cope with my health issues. Before i would get overwhelmed very easily when i tried to keep up with my responsibilities - work, family, cooking, cleaning. I was continually falling short in all areas and very upset that no matter how hard i tried, i could not do it. Cymbalta helps me keep calm and cope with moving at a slower pace. I've learned my physical limitations and literally cannot do what i used to do. Its frustrating and at times i get upset about what i have lost. I am slowly building a new life based on what i can do. Someone posted a link to a youtube presentation by dr pradeep chopra about crps. I reviewed it recently and you may find it really helpful in understanding just what crps is,how it affects people, goes internal in some cases, and treatment options. Might be worth checking out.

Okay I will definitely give it a look! I guess one of my biggest questions still is, how do you tell if it has spread internally? Is it the CRPS or am I sick with a virus? etc.

Dr. Chopra had two videos, the more recent one "CRPS Diagnosis and Management" is the one I am always recommending. It has a lot of helpful info on treatments, supplements, things to avoid and is non-doomsday.

On depression and anxiety. It is so important to recognize that these often go hand in hand with chronic pain and illness. Medications to manage these can be helpful when needed. Therapy can also be a tremendous help and sometimes negate the need for medications. Dealing with this illness and the losses that come with it is challenging. Get support. This is a lot to deal with on your own. I made the mistake of putting off going to counseling thinking I would be getting better and be fine. ultimately it made a huge difference in my well-being and ability to cope with pain and life changes.

I found my therapist on the Psychology Today website. She had a specialty in chronic pain and traumatic life change. It was a good fit and I did not need to try others, we got straight to work. She is certified in EMDR and hypnosis, two modalities that go around the conscious brain. I found these to be very helpful in addition to talk therapy. I went for 8-10 sessions and Wow was it worth it!

[QUOTE=krmitdfrog;1150438]Okay I will definitely give it a look! I guess one of my biggest questions still is, how do you tell if it has spread internally? Is it the CRPS or am I sick with a virus? etc.[/QUOTE

How do you know if it has spread internally? Look for a document online called systemic complications of complex regional pain syndrome by robert schwartzman. It has some very interesting info. My advice, make a timeline, start with when you developed crps, how many maladies or health problems have cropped up since then? This document helped me connect the dots between crps and the new health issues that i now have. I never needed a prescription plan, now i complain my co-pays are to high and i keep my meds in a daily pill case because i cant remember whether i took them or not. Duh, brain fog, short term memory issues, and i,m not a senior citizen yet but i sure feel like one.