Man, I feel for you, it is scary. As Iam sure it isn't good for me but I still refuse to let myself believe it. Which is probably why I'm currently sitting here in complete shock that I can't draw anymore (its in my right hand and wrist and moving up my arm) and on the verge of tears....I think it's sinking in. Anyways I've fou d this place such a blessing. It's so important ( in my opinion) to have people to talk to and ask questions. I always do. Then go away feeling better! There aren't many people I find in my daily life who have even a clue what crps/rsd is let alone finding someone local who has it.
Good to meet you! And I know you will find what you are looking for here!

That makes sense. Okay I'll give it another shot. I'll see about getting pm near my neuro . my rheumatologist is in opposite direction. Trying to get em all in a single location. I'm just worried I may have cancer. I get so tired doing the easiest of things, I.e. folding laundry or limping from one room to the next. It's summer now, so I'm gonna try the pool as often as I can. I was going to pt for my foot and back, but it was a 45 min drive. I'm hoping the pool will help with all that. Do you happen to know much about photobia?

Hello there!! I too am still in denial. Am hoping neuro can find something wrong so they can treat it, but on other hand don't find anything cuz it could be worse. I look forward to chatting with you.

hi chris
 

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.

I don't k ow much about photophobia, but I can tell you hot sun brings the pain all the way up to my shoulder. I am a redhead and the sun already is not a friend to my skin but since this started, soending too much time bare skinned in that arm is very painful.
I recently started massage and it's taken a bit to not have that overwhelming nerve response to touch calm down enough to allow it. Now I enjoy it. (But one stelate ganglion block really helped that for the first one, now it's wearing off) I also use my horse to rub my arm on for desensitizing in a way that also brings me great joy and positive feedback and it's very helpful. Do you have a pet that you may be able to pet with your foot when you are in a time you are feeling peaceful and relaxed?

I get worn out too easily also. I checked and no cancer. Just my CRPS affecting my lungs making the simplest of activity to make me get tired quickly. The only thing I seem to do luckily is playing piano. One handed of course...

Here's a heeling hug for all... :hug:

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 know what u mean Russell. It's getting to that point for me. Know anything about the lump feeling? Gets worse when I keep my head down. Starting to feel more and more light the more work I do. I get light headed if I have to bend over and stand back up too. When I was younger, in my teens, I would ride coasters and pass out when going upside down. Anytime I went upside down I'd pass out or maybe it was blackout.

Have you had an MRI of your brain and neck? The reason I ask is some of you symptoms sound like Chiari Malformation. Blackouts, numbness and tingling, difficulty swallowing. I would check with a neurologist. Personally, I know I feel better when I have a diagnosis. Unfortunately sometimes more than one condition is needed to cover all symptoms.

No matter what happens the support here is better than any I have ever experienced. The people here are often more educated in CRPS than many healthcare professionals. I am lucky enough to have a very supportive family but they don't really understand. However having people who are going through what you deal with everyday is invaluable.:grouphug:

That is so very true. I just actually talked to my family about some things I was going through, and they think it is just anxiety/stress :/ I have had MRI done, and it was normal. Xrays confirmed at chiropractic office that I have stage 3 disdisc degeneration in my neck and lower back. Just made an appointment with my primary care dr. So I can see about getting set up with pm clinic here locally. In the mean time, I may try the 1% capsizin on my entire foot/ankle. I agree that this support is really awesome. I know it is helping me a ton.