Newly diagnoses with crps
 

Hi there everyone!

So for the last year I have been having pain in my wrist and weird swelling and color changes in my thumb and fingers. I figured it was because I was doing hair for 20 years. I went to a hand specialist and he ordered a bone scan.
I was fully expecting a call with a surgery date for decompression or something. Nope they called and said I have crps.

I'm feeling frustrated because I'm not seeing a way to fix it. I really wanted to go back to working in my field of work. I am just not sure how that is going to work because moving my hand is very painful.

It's also frustrating because I didn't even know what this syndrome was and had a friend ask me if it was a mental disorder. My mind runs away with me because I have a lot of pain in other areas of my body and am seeing crps can be in other areas of the body. I just always assumed I had arthritis all over. Now I'm wondering.

I'm 39 and was crushed by a horse 7 years ago, broke my back and well it hurt me in lots of places. One thing I noticed thought the last few years is I will injure myself (such as breaking my ribs) and they seem to heal up and then one day down the road it hurts again but with more intensity. I was starting to think I must be nuts. is this something that could be related? Not being nuts but the reoccurring pain?

My dr suggested pain management straight away. This is also new to me as I've been feeling like a wimp cause Tylenol just doesn't help at all. ( I have ibd with avms and bleeding and NSAIDs are absolutely never a safe option for me sadly cause they help) not even sure what pain management has to offer but am intrigued.

I came here cause I need to talk and read along with people who won't say "suck it up buttercup there's no surgical option so nothing must be wrong"

Welcome jennijojo. :Wave-Hello:

Welcome. I know how you feel, I was just diagnosed yesterday so I am right there with you. Feel free to vent to me anytime.

Carolinarose, how did your diagnosis come about? Man this is a really alienating feeling cause I usually am pretty good and being close with my suspicions and this crps stuff doesn't sound like a short term or easy thing. It actually reads very scary.

The hand specialist I went to is one of the best and my family keeps reminding me of that when I say he's got to be wrong. He thinks having my body crushed was probably what started this. But the only thing that broke was my back. And I had that reconstructed (when I got insurance years later).

What did your doctor suggest? Did you know about this (what do I call it? A disease?)and did you suspect it?

I can't figure out if I should go back to being a hairstylist and just having terrible pain. Also I drop things alot and do things like accidentally poke my finger in someone else's mouth lol luckily it was a long term client. The doctor said use it or lose it but my brain says rest it dont test it.

All I've been referred to is a pain management specialist. Who am I going to ask my questions to? And really is this a forever thing? As I think I can tie so many things to being a possibility of another affected area. Ugg I am just so glad I found a place to talk about this. Cause that's what I feel I need to do.

Can anyone tell me, as I've been reading lots of drs are resistant to acknowledging this syndrome but they were really old articles, am I going to be met with my gp for instance, thinking myself and this hand specialist she sent me to is nuts? (His reputation is top notch. He's been noted for being a leader in digit regeneration research so he's no quack)

My diagnosis was a last resort. I broke my leg (fibula) and ankle 15 years ago I had to had screws and plates put in. I have always had issues with my leg off and on and limited mobility. Recently I noticed a red spot on my ankle that was very painful, then 2 months later another red spot farther up my leg and intense pain with touch or just movement then the skin got tight and another spot showed up on top of my foot. My GP sent me to Orthopedics who did x-rays and a bonescan which showed increased inflammation in the right leg, decreased blood flow to both feet, and a fracture in my left foot. The ortho sent me to an orthopedic specialist who did more x-rays and said I had irritation from my metal but he didn't advise removal because it only causes more damage that leads to more pain. So he sends me home with nothin. I go back to my GP tell him all of this armed with all of the test results and he is the one to mention the pain syndrome. His words were "some sort of pain syndrome ". So he refers me to the pain clinic, I did alot of research on my on throughout this whole drawn-out process and found nothing even close to the symptoms I was having together until he mentioned the pain syndrome and it all fit. The pain clinic has me classified as RSD or Reflex Sympathetic Dystrophy, they are really the same thing that is just how they dictated it. The only treatment I have been offered at this point is a sympathetic nerve block and m-contin pain meds.

It is really a tough blow but having an answer is the first step in the right direction. Only YOU know what you can and can't handle. I know how it is with the naysayers, my boyfriend has been to my appointments with me. He knows what the outlook for this is in my case and still he treats me as though I should still be doing everything as I was before. As far as your doctor's research your area for someone who deals with CRPS try to get in to see them.

I hope some of the veterans of the group can answer some of your questions better.
[emoji253]

Hi, welcome...sorry for the reasons, but glad you are here. Great bunch here, very knowledgeable and kind....

Yes, CRPS can spread.:mad: Keep us posted on what you decide and how it works for you....:grouphug:

Welcome Jenni,

I am sorry you had to come and find us, but you will find solace and compassion here. There is a lot of misinformation about CRPS so you have to be careful of what you are reading. I always recommend a video by Dr. Pradeep Chopra. It is from 2014 and is called"CRPS Diagnosis and Management". It is on YouTube if you just google Dr. Pradeep Chopra and CRPS. Sorry I don't have a link for it. ITt is over an hour long and gives loads of good information on treatments, therapies and nutrition. This doctor worked and published with Schwartzman who is a retired CRPS specialist that is highly regarded. Chopra's info is a good starting point, it is non-doomsday, holistic and reasonable. National Institutes of Health and the major specialist write that 80% of CRPS sufferers improve with time. PT that is gentle and does not cause pain flare is helpful. The limb must be kept moving and working but not aggravated. http://www.rsds.org is a good site for info.

It is always good to get a second opinion and to be really sure there is no nerve entrapment or other contributor. Symptoms are similar and treatment is different. additionally, CRPS can be caused by entrapment. You can ask for a nerve conduction study to be sure impulses are getting through. If you can find a Physical Medicine and Rehabilitation doctor who does hydrodissections for carpal tunnel they would have the skills to look at the nerve in the wrist via ultrasound to check for scarring or swelling. These do NOT show well on MRI. The repetitive nature of your work could cause any number of contributing factors. Don't give up on answers.
Hang in there and trust your own wisdom. Get your Vitamin B and D levels checked, they are commonly low and contribute to chronic pain and nerve problems. Come here when you have questions or need to vent. There is always help close by. You are not alone and you are not crazy. Okay maybe you are :eek:, just kidding, but not because your hand is turning colors and hurting. BTW, the old articles that still link CRPS to psychological conditions are full of crap. You did not do this to yourself by being a nut job or some other nonsense like that. Your nerves are going haywire, end of story.
Keep us posted. I am sending Healing Love,
Littlepaw:hug:

I've been reading about symptoms...I do feel at times like I've had a rubber band around my thumb and the skin has been torn off. Usually its rather red and swollen when This happens. Doctor said the bone damage consistent with crps is in my wrist and not my thumb. I feel like my wrist is broken is how I would describe the feeling there. However I'm not seeing much info about bone pain. Is this par for the course? Must of what I've been reading is it is nerve pain.
Which also leads me to wonder why it's showing in my bones.
My dr called to inform me and I didn't get to ask many questions. He was just telling me what he saw and that he believes pain management would be beneficial.
Anyone else have bone pain?

If I don't move my wrist at all the pain there lessens. But not my thumb. Don't even want to touch it. But again dr said it was dire I did not stop using this hand and wrist. Not gonna lie, that's not going to be easy.

Hopefully when I go to the pain management place they will be able to answer some questions. I have so many!

Thank you all for your responses! This page has been so beneficial and it gives me some peace to know there are people I can talk to

Thank you for links and suggestions! I've been reading about Schwartzman and am about to look up chopra! Thank you!

Not everyone has bone pain or symptoms but they are a common feature. CRPS causes accelerated bone resorption in some, so you are not laying down new bone as quickly as you are taking it back out. This can cause the appearance of patchy osteoporosis. Biphosphinates that address osteo are sometimes used and per literature can be helpful for patients with bone symptoms and pain. Fosamax can be taken as an oral tablet, the other meds are done as infusion.

Littlepaw