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

Hey Jennijojo,

First of all, I'm so sorry to hear about your diagnosis. And secondly, I totally understand the pep talk thing that you referred to about people assuming it isn't that bad. It is that bad, on some days it is unbearable, I've been there, so I am so sorry that you are having to endure this. You mentioned that you are worried about work, are you full time? Because if you are, I might suggest talking to your employer to see if you can cut back on your hours a bit. I have found personally that this has helped while I have been trying to deal with having a majority of bad pain days, especially when you are new to it and trying to work out how to manage the pain. If this is not possible, the best thing to do is to build up your file with any helpful information, which would include maybe starting a pain journal, in which to document pain levels, moods, treatment progress and test results and maybe even dietary triggers for your pain. As far as the pain getting in the way of work and being afraid how much it will affect you, I totally understand because mine is in my dominant arm. I have found that you really need to gauge your pain level, and try to only push yourself as much as you can before horrible pain sets in. This is harder to do some days more than others. My biggest piece of advice is take it one day at a time. Some days you will be able to do more than others and that is okay. We are here for you! :grouphug:

Thanks for this info Littlepaw....one day my CRPS just broke my bone...no patchy osteoporosis, bones actually look healthy. And because the bone healed I kept being asked "how did your bone break?" In other words, what did I do to break it. I do worry this can/will happen again; :(

That is horrible Enna! Did it just break or was it flaring as well when you broke it? I don't know that much on the bone stuff, I'm just wondering.

Don't give up HOPE you CAN beat this!!
 

Jenn,

My name is Emma. I'm 31 and have had Crps since Oct. 2012. It started in my left arm and hand from a botched IV attempt, that injured my radial and median nerves. I am so sorry to hear that you've been diagnosed with CRPS. I know how scary and daunting it can be once you find out what CRPS means and all its entirety.

NOW is the time you need to act. The key to being able to push CRPS into remission is acting as quickly as possible when you first find out. The longer you go without proper treatment the less likely you are to be able to push it into remission. It is very important to find a good doctor that knows about CRPS specifically. Finding a good CRPS doctor can be difficult but it is possible. You should also look into finding a pain management psychologist or therapist. Also it is extremely important to find a good physical therapist one who will work closely with your doctor.

The reason physical therapy is so vital at this time is because it will help prevent muscle atrophy and tightening of your muscles which can create that clawlike appearance to hands and turned in club feet. A lot of people will say that physical therapy is not good but it is is long it is the correct kind of physical therapy. The sooner you can start that is better. However it is important not to push yourself too hard it needs to be very gentle even though it will hurt. The only reason I'm able to have near full range of motion of my arm and hand today is because of the physical therapy that I did two years ago.

Here are a few things I found VERY helpful. And some things that are EXTREMELY VITAL to KNOW.

1. Probably one of the most important is
NEVER USE ICE!!! Below explains what can happen. Never let any doctor or PT tell you differently and if they do they don't know anything about CRPS and you should find someone else.

http://www.rsdhope.org/ice-and-crps.html

2. Find a good and knowledgeable physical therapist and start on it as soon as possible as long as your doctor is in contact with and approves of the physical therapist. Below shows why PT is so important.

http://www.moveforwardpt.com/Symptom...7#.VRKE8n3n9GA

3. Find a good pain management therapist/psychologist. Crps is tough, extremely, and can push people to the brink. 70% of patients with crps consider or attempt suicide. I'm seriously not trying to terrify you, but it's a fact that needs a lot more awareness. It can also be an invaluable tool to help your family and loved ones understand what you're going through and help them with their stresses as well as everything it can do for you. You don't need to bear this burden alone and a therapist can help you work through a lot of the stresses your face in trying to beat or live with CRPS.

4. You should start a daily pain journal or diary. This can help you keep track of pain levels payment type. You should also keep track of your daily activities. This can help you talk with your doctor at your appointments and keep track of when your pain is the worst what pain needs more attention and what medications or treatments might help that. As well as it can help you discover activities they could because he knew more pain without you realizing it. For example, I kept on having massive pain flares but we didn't know what was causing it. Until we took a look in my pain journal and found out that two days after I vacuumed I would have a big pain flare. So I was able to have somebody help me with the vacuuming and keep my pain from flaring one more way!

5. Seriously try to stay as positive as you can. Focus on the things that are wonderful in your life not the things that have been going wrong. This can be true of anyone in any situation but it is imperative for people with CRPS to try to pain-free as possible. Nerve pain and nerve conditions like CRPS can be directly related to emotional stress. The phrase getting on my nerves? Is very literal in our case.

6. Make sure that if this doesn't come up in talks with your doctor or your physical therapist that you work on desensitization!!! It is really hard to do and can be kind of painful but it is very important. Do things like taking a a soft wool or a piece of cotton or whatever you can and gently touch or rub it on the affected parts of your body . You don't have to do it for long you don't have to do it all day and do it gently but try to do it at least once a day. You don't want to do it to the point where you're crying from agony but do it for as long as you can tolerate . This can help prevent the extreme extreme hypersensitivity/allodynia. Trust me you will thank yourself for doing it because it can mean the difference of being able to wear a pair of soft gloves in the winter or a long sleeve shirt that way you can actually stand to have some things touch your skin.


Finally I am listing below a few sites that had some really good information on CRPS and resources to be able to tap. I found them very useful in my journey and I really hope you will find them useful as well.

http://www.rsdhope.org/what-is-crps.html

http://rsds.org/

http://www.rsdhope.org/crps-treatments.html

http://www.medicalnewstoday.com/articles/184338.php

http://www.rsdcanada.org/parc/englis...treatment.html

Please feel free to contact me anytime for any reason for anything. CRPS patients of all people know the support it's needed to be able to beat or deal with this condition. And only people with CRPS can know what it's like to deal with it because there is nothing else out there like it!

Stay positive fight hard and you do have a chance of beating us . I know you had said you were worried about it spreading to another part of your body ? Just so you know it's something like under 7% of people with CRPS that actually end up having it spread so your chances are pretty low . Just know that we are always here for you and if you like you can private message me anytime send a friend request and I will get back to you.

Sending Love and Gentle Warm thoughts~~~
Emma

Sorry took me so long to respond. I'm still in the same place I was. The dr referred me out and the clinic didn't see it etc etc and once they found the referral couldn't get me in for months. so now I'm waiting for a referral somwhere closer.

So I was working doing hair about 30 hours a week started shortly after having shoulder surgery. Then my opposite hand was giving me trouble I figured it was carpool tunnel but the Ortho said arthritis and stop doing hair. So I haven't been working cause I'm looking for a new field. My other line of work is drawing blood and requires a lot of my affected hand (my dominant hand). So I'm trying to figure out what to do for work.
I've been doing hair at home lately and the day after I have huge swelling and now my arm will hurt all the way to my shoulder. Feels like the deepest worst sunburn ever on the entire arm. (Best way to describe it) so I'm so curious is continuing doing this as a job going to just make my pain to where I can't get under it to get it to stop without a day off....again gotta have that dr appointment so I can ask all these questions!
I am most bothered by not knowing what my work will do to my hand/ arm and my desire to work!
So yeah so far I have no new info :(

Thank you Emma! Such good info! I discovered the ice thing before the diagnosis and was quite surprised!
You mention getting treatment ASAP and I am still waiting, my question is this dr thinks this stemmed from something that happened years ago...this worries me. however, I didn't start having this problem till I started having some over use joint problems two years ago which promoted cotisone shots and it all went downhill. Actually it started going down hill after the shoulder surgery and the a not so great interscalene block on the other arm (they got it in my blood stream and my heart went nuts). I had nerve pain for months after. Ended up having an akinetic septum in my heart ( drs questioned the block as the cause) I ramble but my point is
I don't think I will ever know the cause and I'm worried I've already waited too long to have remission including while using my hand repeativeky for work?

In a side note, I am frustrated today cause I saw the Ortho that referred me to hand clinic while my daughter was seeing him and told him the diagnosis. He called it a waste basket diagnosis :confused: