Hello!

I have recently been told I have CRPS. As a result I have found this forum and I have been reading posts after posts to try and find something that would be of help. I understand that every person with this is different and every case is unique. However I'm having a hard time with how or why I have been told CRPS. Everywhere I've read has said it starts with a limb...

I'm going to try and give you a short version of my story in hope that someone could maybe help.

In April of 2017 I had a surgery to remove my fallopian tubes and a potential cyst in my right ovary. It was suppose to be an in and out the same day surgery. I wasn't afraid or nervous as I had had a surgery to remove my gallbladder when I was 10. However when I woke up from surgery I had the worst pain in my life in my shoulder they gave me 3 or 4 different pain meds and it still didn't seem to help. Finaly it calmed down but they admitted me for pain management for 2 days. A week after that I started to get a pain in my right rib. Right under the breast. I went to the ER for a different reason and had mentioned it to them but they shrugged it off as a normal surgery pain. The next week I had severe pain in my rib I could barely walk, stand or lay. I wasn't sleep more then 20 mins at a time at night. I went and seen my family doctor and he prescribed me T3s and after about 2 weeks of taking them I felt better and went off them. Didn't feel the pain again unless I did a little more during the day than normal. September came and my kids went back to school so I started to go to the gym again. First time I went I got very sick and just thought I went to hard after being away from the gym for so long. The next 2 days I took it easier but I got very sick..flu like sick. So I quit going and mentioned it to the doctor. In October I went out with my husband for his birthday and when we got to the restaurant I started getting sick like I would at the gym. I took my T3s and thought about going to the hospital but by the time we left I started to feel better as the T3s started to work. After that my pain started to get worse and I had to start paying attention to the warning signs of when it was going to come on so I could take my T3s before I got to the flu like symptom stage. I did many tests with my doctor and last year I started to see a nerve pain specialist. He gave me an injection and it made my symptoms worse and told me he couldn't do any more as he didn't want to make it even worse.

I have bad allodynia, I can't wear over half my clothes anymore as they can bring on these flu like symptoms, I also can not wear a bra anymore, I can't sit in certain chairs, I absolutely can not get hot at all. I no longer wear a winter coat or I get sick. I recently started to get a chemical like rash on my face off and on. It burns and is hot to the touch.

The pain from my rib has spread to my spine and into my left side off and on.

Mine all started in my rib. However where ever I read it says it starts in a limb. Why is mine in the rib?
I've also only read about people having issues with cold but none with heat. I have read it is possible to have the heat one but is it more rare?

I also want to note that before the 2017 surgery I was having problems with my right arm. I had pain and numbness in it off and on, but it wasn't a bother. I took a fall on it about a month before the surgery and hurt my arm and collarbone. My collarbone if I'm not careful will feel like I pulled it out and be in pain for days. However my arm still feels the same as it did before the surgery minus the allodynia that I have in it now.

I feel like I'm going crazy trying to figure out how I fit into the CRPS title. Maybe it started in my arm and no one realized?

I'm sorry if I'm all over the place.
If anyone could help I would be so grateful l!

It may be 2 or more different things going on.

[I was having problems with my right arm. I had pain and numbness in it off and on, but it wasn't a bother. I took a fall on it about a month before the surgery and hurt my arm and collarbone. My collarbone if I'm not careful will feel like I pulled it out and be in pain for days. ]

The fall on the arm/shoulder /collar bone & the symptoms you mention relating to that make me wonder if it might be Thoracic outlet syndrome (TOS), or something similar..

Explore our TOS forum & useful stickies there to see if more applies for you.
There are treatment & PT /self care ideas also..
https://www.neurotalk.org/thoracic-outlet-syndrome/

Some w/ TOS have rib issues as well.
hyper mobility can play a part....

RSD can happen with TOS also, but many things can trigger it, injuries, surgeries, even minor things at times.

our site search tool can help you find past posts on specific topics or symptoms..
https://www.neurotalk.org/search.php

Thank you,

I looked more into TOS just now because it sounded familiar and I had all recommended tests for it. All came back normal.

That is the one constant. All my tests always come back normal.

I just dont know.

I am borderline TOS/chronic RSI, w/past whiplash, past concussion, RSI shoulder strains.. hyper mobile... but all standard testing comes up negative.. according to general main stream MDs...

My chiro & a PT professor did more in depth & more hands on evaluations and they agreed. Most Drs don't really do that hands on, if imaging or standard test don't show it they don't look deeper..
I do have the white hand when arms are up and flushing red when lowered, plus the trigger points, muscle spasms, and a raised & stuck top rib from extreme muscle spasms- that was greatly reduced by the PT professor with a top rib mobilization.. I related that to chiro and he followed up when needed..
My chiro had a low level laser (aka cold or soft laser) that was awesome for pain relief..might be worth exploring that topic.

So you could be in a similar situation, not severe enough to warrant TOS experts or deep testing, usually those are for pre surgical cases/severe pain.. but the proper PT and gentle stretching & posture can be very beneficial..

You certainly don't want to risk getting into the severe stage...if it is a mild version now. Explore the RSD/CRPS sticky threads too if you haven't yet..

I had been seeing Chiro up until a month after my surgery but had to stop due to finances. I dont have any colour change in my hands or arms and I dont experience any muscle issues apart from general tightness from not being able to fully stretch without causing flare ups. Most of my swelling is from my arthritis. However I have been thinking of going back my chiro doctor. I will for sure mention TOS to my doctors when I see them. Looking up the symptoms though I dont seem to fit. But who knows Stranger things have happened!

Well, don't be surprised if Drs dismiss TOS right away, many have very limited knowledge, unless they have an actual interest in it..

If you feel it isn't a fit right now, just keep it in mind if more things start to match up later on..
My version was more of a pre TOS situation, I luckily was able to reverse & recover from the worst sympoms, now I have more of a Myofascial pain syndrome (MPS) but still can't hold my arms up for more than a minute..

Good luck and keep searching..

First of all, welcome here.

There's lots to wade through, I'm sure; and the way RSD/CRPS is treated varies so much, so so much over the world.

If you haven't gone to a pain specialist or clinic, I would highly recommend it. They *know* CRPS, they aren't "just" there for the pain. That is one big myth.

I had to get over that hurdle myself. Because it feels like you are running out of options, when they actually give you options not to just treat the pain but also potentially treat the condition itself.

I'm thinking bisphosponates for instance.

Anyway, I just wanted to quickly pop in here and say "hi"!

Good luck!!!
& Hang in there!!!

You are not alone in this.

Welcome to the site, I am glad that you found us. I hope you will find helpful information that can help you and your medical team unravel what is going on with your body. It sounds like you have had a rough time, sorry to hear that.
It could be that you have multiple things going on. I have communicated with many ppl who have the hot version of crps, I dont think it is less common.
You are correct about this disease having the ability to show up uniquely in individuals. And for the most part it does begin with a limb. You mentioned that you were having problems with your arm/shoulder and that certainly could have been a catalyst.
The intolerance to clothing on your body certainly makes a strong suggestion for crps. I have a hard time sitting on hard surfaces too. I dont recall you mentioning any unexplained swelling. Have you ever looked at the Budapest criteria? I guess it is used in the ruling in/out process for diagnosing crps.
Please come back and let us know how you are dojng.
Barb

Welcome! I know it says it usually starts in a limb but that doesn't mean it can't start elsewhere. Your sensitivity to clothes makes me think it is CRPS/RSD. I would try desensitization therapy ASAP as it has made the difference between wearing clothes and shoes and not for me. I may have missed it in your post but what are they doing to try to treat it now? Most of us wind up on a medication cocktail and I know mine helps. The biggest part that helps me is the butrans patch.

Thank you everyone!

I am currently lowering my Gabapentin dose and I am on Cymbalta. I'm also waiting on a prescription for a cream. I have a referral to a specialist that I'm waiting for an appointment from.

I don't think I get unexplained swelling. However I have always had swelling in my hands and feet.

Now that I think of it...last summer I had swelling on my injured side. When I put pants on they fit fine on my good side but the other side didn't fit right and I get swelling on my right side of my abdomen.

I currently had a really bad week or so, hence why I haven't replied.

I appreciate everyone's reply! Thank you so much.