CRPS Specialist
 

I currently see my surgeon and a pain management specialist. Should I be seeing any other specialists? I feel like hardly anyone knows about CRPS. My pain management specialist has told me my memory and cognitive issues has nothing to do with CRPS but these issues did not develop until after my post surgery CRPS. I feel like I’m always in a fog. He also said my blurry vision is unrelated. I got a new prescription and everything is still blurry. Please help.

Brain fog is a common complaint among people with CRPS...I have had badly declining ability to focus, remember, and read over the years. For some this is caused by meds. I do not take any meds...so that's not the cause for me but its possible that just the constant never ending pain is at the root of the issue. All the tests for other causes have come up with nothing.

As for blurry vision...while o highly recommend looking for another cause...crps CAN cause vision problems. I had intermittent blurry vision, double vision, and dizziness for about a year which was resolved when my dr put me on clonidine patches...which regulate blood pressure. CRPS is a malfunction of the sympathetic nervous system which controls blood pressure. Turns out I was so out of whack and my blood pressure was all over the place so I used the patches for a few years and the vision problems stopped. I went off them when I got pregnant 5 years ago and I haven't been back on them. I have occassional symptoms of suddenly spiking or dropping blood pressure...but not nearly as often as I used to.

My recommendation is ALWAYS to search for other causes first because...well...other causes can usually be treated or corrected. But if you exhaust all your other options then new weird symptoms can typically be caused by CRPS. I just wouldn't assume it right off the bat because often it IS something else.

I have not found one single doctor who will just simply accept that CRPS causes "brain fog." Their reasons are usually
1. Meds
2. Lack of sleep
3. Depression

But if you research yourself online, you can find multiple references to CRPS and memory and cognitive function decline. Not just on any website written by and for people with CRPS, but I have found it on professional sites and in at least one medical study. I met several people in my rehab groups not on meds who had the same symptoms. My symptoms hit rapidly during the first year while my meds were stable. I was fine... and then I wasn't.
I have always had depression and it has never caused any issues even vaguely this severe.
Brain fog, cognitive decline, word finding issues, saying gobblety gook instead of real language, I don't see how ALL of this could be caused by meds, especially as I have changed my meds over time, but the symptoms have been consistent.

Becca71, My experience and opinion matches what you posted. Also, I get great sleep....GREAT SLEEP.....and most of the time. Sure, there are those nights we all have, but I am self employed and able to catch up when they happen and after I get symptoms under control. Then, for the rest of the time, I sleep until I wake up, which is usually around 9 hours each night (my meds sort of knock me out, Im sure, but regardless, I sleep like the dead!).

And....I have those symptoms you mentioned (cognitive, all of them).

Its strange to me that for those with Fibromyalgia, they call it "fibrofog" and it's widely accepted as a part of that condition. I have heard some doctors say that CRPS is an extremely advanced case of Fibromyalgia, and while I have no idea if they're right or not, this part of Fibromyalgia is also experienced by those of us with CRPS.
I was diagnosed with Fibromyalgia long before I got the CRPS, fwiw....and I have no idea if I have both conditions, because the CRPS overrides the Fibro and has since day 1 of having it....I never think about Fibro anymore even though my entire body hurts....but in all limbs I have the CRPS, so I do wonder when some CRPS doctors say the two are related.

I developed Fibro a couple years after CRPS. There were some differences, IMO, but the pain was certainly not anywhere near the level of the CRPS. For me it was that the joints would hurt all over my body, while my CRPS is limited to my right foot and leg. And I would feel physically like I had been knocked down with the flu, without actually being sick. And each time it happened I would get a weird mild rash on my cheeks and neck. Etc.

I have also heard that CRPS and Fibro may be related. But heck, there is so much that they don't know about both conditions, other than they are both nerve conditions.

Find a CRPS Specialist
 

After 6 years with CRPS I finally decided to look for a Dr who is a CRPS specialist. I've found that the pain management Drs I went to were just trying to prescribe something to cover up the pain, rather than to look for ways to manage the cause. I'm near John Hopkins in Baltimore, so I searched their website for CRPS and found Dr Raja. Only one visit so far but much better experience than going to another pain management place. He put me on Pamelor, which has been very helpful (for me) so far.

Pamelor seems to be an anti-depressant of the older variety (typical for pain management).

Now we're all different, but I have to tell you anti-depressants never worked for me; they didn't touch the pain whatsoever. I only gained about 10kg on them which is weight I could miss for my knee issue!

CRPS is the worst, isn't it? Then, the fibromyalgia on top, or is it? I see so many people with both, and I read an article earlier today that talked about pain studies (this outfit is in Australia, fwiw). They are studying the brain, and have, among other things, linked the frontal cortex and GABA and, they talked about how cognitive is affected by CRPS, which is my experience, too.
I just really often do think CRPS and Fibromyalgia are linked, it all goes to the spine and the brain, and because so much is unknown, we do get really varied responses from various doctors.
One of my doctors said patients often know more about the disease and the symptoms because we talk to each other so much, and doctors could learn from the busy bees among us, lol....(scary, isn't it....we just dont know enough about this dreadful disease!)

Oh I agree, patients know more about it than doctors a lot of the time! And I have Fibro too, I was diagnosed about two years in. I have read that they are related in some way. Both relating to overreactions of the nervous system.

I have been recently (two months ago) diagnosed with CRPS, following three surgeries in my R UE, followed by a car accident 6 months later resulting in more UE injuries and whiplash. My initial injuries requiring surgery are work related. I am in the workers comp downward spiral of specialists and denials, etc. Anyone else trying to negotiate through workers comp with a diagnosis of CRPS? Any advice would be greatly appreciated!

Highlander, my CRPS was not work related, but over the course of 7 years it has spread, gotten so much worse and dibilitated me to the point that I am now in a hoveround. What I am saying is you need a VERY GOOD attorney who can do the research and defend your case WELLLLLLL!!! This isn't going away and if you are getting denied and shuffled around and bullied or mistreated in any way, you won't get the care you need.
Also, the earlier it's caught, the better the chance some of what happened to me might not happen to you....so denials and lack of care can drastically be detrimental for this condition.
Get the best lawyer you possibly can and be sure they are going to do a top notch representation for you.
Im sorry I don't have more advise, but this is my immediate thoughts after reading your post.

Please engage an attorney. You have a chronic progressive condition, pray that it goes into remission, but plan for the long haul that it might not. I held out believing I did not need one & hired one only when I was fairly sure CRPS had spread. Waiting was a huge mistake. Lawyers keep us from being used & abused by Worker’s Comp.

I was cut off from aqua PT as soon as I was improving. I believe I could have gone into remission at this point. I was misinformed by the PT therapist that she would appeal. She didn’t, so I ended up on my own trying to do my own land & water PT. It was not successful. Had I had an attorney I might have avoided this mistake.

Get copies of all doctor’s notes. Review them. Correct errors in them immediately.

Take photos of your limb in the doctor’s office at every visit. Bring a witness. Have the witness take notes. Bring a laser thermometer to every appointment to take temps of limbs, ask that it be noted. lack of symmetry between opposite limbs is a hallmark of CRPS. You want this documented.

Keep a dairy. Record everything. Your sleep, your pain, your eating habits.

Take daily photos of your limb (s) normal, in a flare, etc. set up an album on your device. Pictures over time are very revealing. In my case, despite lots of exercise, the pictures I have show deteriorating muscles.

Keep a running list of your doctors with dates.

Keep a list of everything you buy with receipts, like a shower chair, compression stockings.

Get a filing system set up now. A file for every doctor. A file for everything above.

Get a copy of your accident statement, if you have one. Make a folder for that.

My files are a mess, because I did not think it mattered, plus I was in too much pain to think clearly. Now I am afflicted in 4 limbs, my stomach & my eyes, everything is beyond the beyond hard for me to do. If I had known how difficult things would be I could have asked someone to set the system up for me.

I will try to think of more, but I am too tired to finish.

I am brand new to site so I hope I am posting inn the right place. My crps was work related too. It is a battle. And now you have a car accident in the mid. That is wicked. I totally agree with everything biobased said. It is a lot of work but necessary. I kept a sort of short diary. Listing dates I spoke to anyone and Dr appt. What I was told. I always took a second person to every doctor appt.

Highlanderatheart. I had a RUQ injury at work in 2012 that resulted in surgery and then CRPS. I agree that the most important thing to do is to get a lawyer that specializes in WC. Interview a few different lawyers and make sure your lawyer has handled CRPS cases before.

WC complicates everything. I have nothing good to say about the process, but I am happy to answer questions/provide guidance. Each state has their own WC laws which makes things even more difficult.

Mlb3815,

I see you're from Boston. Have you seen Dr. Roberto Feliz in Hyde Park? He's an anesthesiologist/pain management doctor. He lectures all over about CRPS and treatments. A significant portion of his patients have CRPS, and he is passionate about treating CRPS. I have never had another doctor know so much about CRPS and be constantly on top of new literature. I would highly recommend seeing him for a consult even if you do not wish to change doctors. He may able to offer you some treatment options that you haven't tried yet.

Good luck,
Gigi