Hi all.

So I've just been diagnosed with CRPS.

Long story I'll try and cut short. Two years ago I tore my meniscus at work (I'm a flight attendant) I was always really active and in great shape. It took around 6 months to get the surgery approved by workers comp and I carried on working the entire time. I had the surgery which I was assured was the easiest oath surgery you could have. I've had a spinal fusion so thought this would be a breeze.

The day I came home from hospital my knee was off the chart with pain. I was clawing at the dressing to get it off and it felt like fireworks were going off inside my knee.

At all my post surgery appointments I kept saying that something was wrong. I couldn't walk let alone get back to running, my knee was red and purple and my legs were turning red and kind of blue, I couldn't wear anything that touched my knee. My surgeon told me to "tough it out" and go back to work. I did and it carried on being agony. Still couldn't wear anything that touched it and it still felt like it was fizzing inside. I changed surgeon and was told I had arthrofibrosis. had surgery for that with a long rehab. Zero improvement. Then Jan of this year the pain had spread to now go from my hips down on both legs. The doc that did my second surgery had lost his license and I found a new one. He looked at me and said he thought I had CRPS which I'd never heard of and ordered a 3 phase bone scan.

At follow up he said the scan wasn't that unusual and showed damage which was probably from my injury but was confident with his diagnosis. I saw another ortho for a second opinion and he agreed. He said the skin colour changes on my legs, the swelling and symptoms were all signs I had it.

My questions are...

1. I feel like I've been messed around so much since the original injury, how confident can I be of the diagnosis since there's no one clear test

2. Both docs suggested nerve blocks to my legs which will be done in the OR by a pain management doctor. They suggested a couple of names and I'm not sure exactly what I should look for a pain management clinic or even what questions to ask.

3. I've been taking gapupentin 2x3 daily. It doesn't really do a lot. I take it with aleve and Solgar Glucosamine Hyaluronic acid daily. Is there anything else that you think would help

The pain is staggering and 24x7. I'm severely limited in what I can do in daily living.

Hello Sibsie,

I am so sorry that you have had to join us and are having so much pain and difficulty. This is not an easy diagnosis to get and we all understand how upsetting and frightening this time can be. Know that you are not alone and that there are reasons for hope. Dr. Stanton-Hicks, a CRPS bigwig of Cleveland Clinic, says 80% of CRPS patients improve over time and I've seen that statistic other places as well.

Since you are questioning your diagnosis (I would too) know that CRPS is a diagnosis of exclusion and appropriate rule out needs to be done. One of the most important rule outs is nerve entrapment or injury. The symptoms are very similar. I am including a very informative and non dooms-day video by Dr. Pradeep Chopra in which you'll find many helpful tips about treatments and therapy. He mentions the need to rule out nerve entrapment as well. CRPSiagnosis & Management - YouTube


(I don't know why the "grin" emoticon is in the title. I didn't put it there and can't get it out but the link still works)


I have a unique ability to testify to the similarity of nerve entrapment/injury and CRPS having had both. I had a branch of my tibial nerve torn during a "minor" procedure and formed an excruciatingly painful neuroma and had the rest of the nerve entrapped. It took 9 months to find a doctor who figured it out and did a 3.5 hour nerve repair which took away massive amounts of pain. My CRPS came later from another surgery. Too many insults I suppose.

You will find information about nerve injuries here at this site for Washington University where my peripheral nerve surgeon was trained.
Center for Nerve Injury and Paralysis
Peripheral nerve surgeons are typically plastics and reconstruction surgeons who underwent a special fellowship. If you can find one they may be able to help determine if you have an injury. They use a special diagnostic test called the "scratch collapse test". It works for any peripheral nerve, mine was in the ankle. My own was positive before my operation and negative after. You'll find a video here. Utility of Scratch Collapse Test in a Case of Failed Carpal Tunnel Releases - YouTube


The other specialty that may be able to help is Physical Medicine and Rehabilitation. Some of them are trained in peripheral nerve ultrasound and can look to see if you have disruption of the nerve, entrapment or swelling that can explain your symptoms. In some cases they can "hydrodissect" scar tissue away from the nerve without surgery.

A caveat on the above doctors...much of my team is in Houston, 3 hours from me at a major medical and academic center. To get the level of care I needed, I ended up having to travel. Hopefully you won't have to do that but sometimes it is helpful if you can't find what you need closer to home.

Treating your pain while all this is going on will help decrease those pathways and help you stay more comfortable. By all means get treatment while you are getting any workup done. I don't know how any of these specialists would work with the challenges of WC but if you can see them, they may be able to give you more info about your case. Finding and treating a pain contributor can make a difference in your outcome.

On pain management, I think it most important that you feel listened to and feel that your doctor is competent. I saw three before finding the one I have now. The others just weren't a good fit for me.

Exercise is beneficial but do be careful not to work so hard at recovery that you flare things up. Your nervous system is in overdrive already. Keeping the limb moving but calm is a tenuous balance at times. Recovery can be slow and there can certainly be set backs. I had to start and re-start many times. Aqua therapy is how I got started and I can now walk a couple of miles without issue most days. It did not happen quickly but that's okay.

Hang in there and let us know how you're doing. I hope you find relief and healing soon,

You might want to ask for an X-ray to see if you have patchy osteoporosis, a hallmark of RSD. Despite a classic presentation similar to yours, it took almost a year for me to be diagnosed. The X-rays confirmed it for the rheumatologist I saw. Unfortunately, despite being in a major city I was unable to find a doctor knowledgeable about RSD. It was somewhat comforting to know what was wrong, but alas no one was able to help me. This plus an incidental finding of a brain aneurysm drove me to research on the Internet.

I found Low Dose Naltrexone, which no doctor would prescribe for me. My life was pretty bleak at this point, as I was out of my mind with pain and misery, so my husband ordered LDN from an overseas supplier. LDN saved me.

Serendipitously right after I became more mobile and had less pain from LDN I visited a friend's pool and discovered that I was able to walk, run, hop in the water. My PT recommended Aqua PT for me, which I started doing this past May, because of my success with it I highly recommend Aqua PT along with LDN.

Feel free to message me if you desire further information.

I'd say keep following what your doctors are telling you. You seem to have a good pain management team on your side. I think.

I'm so sorry you have this. Started in both knees from a dashboard injury in my case. I know what it's like to have a knee issue make it all worse.

Hang in there!

I am sorry that you have had to come and join us here, but welcome to NeuroTalk! There are a lot of great people here that are willing to share their own experiences and what information that they have found along the way.

CRPS is rather difficult to diagnose and treat. We all have that moment of - Can it be anything else? It is not the end of the world if it is, since for most people, it can be managed fairly well once you find a treatment that works for you. Do not go by the 3 phase bone scan alone. It is not a definitive test to diagnose CRPS. Find a doctor that is familiar with the Budapest Criteria, but also find one that you feel comfortable with. I did not feel like the first 2 pain management doctors I saw were treating me correctly, so I started calling and interviewing others before finding the one I have now. It is a learning experience for both my doctor and myself and because of that, there have been a few mistakes made along the way. He is willing to listen to me and make changes as soon as it is realized that something is not working.

Be prepared to travel to see someone. When I originally found my pain management doctor, I lived in Metro Detroit and only 30 minutes from his office. I have since had to move in with my parents again which makes for a 3 hour drive there and back. We make the trip over the course of 3 days and stay at either my sister's house, or a rental house that my Dad owns. I have not been able to find anyone closer that I am willing to switch to.

I would also recommend watching the Chopra video. He is very informative on the different treatments and diagnostic criteria that are used today. I do not take LDN myself, but it does seem to help a lot of others with CRPS. It is just a matter of finding a doctor that will prescribe it. The best thing to do is to try to keep things moving. Like the others have said, aqua therapy is great for this. It takes much of the weight off of your legs and work on any gait issues you may have. I have not yet checked out our local pool, but am on the dock every evening kicking my feet in different directions just to help a little with blood flow, the lake is very shallow and as a result, the water is in the 80s right now. Even that small amount helps some. One last thing, stay away from ice. My doctor's care sheet says to use it to help reduce any swelling. When I brought it up with him, he was surprised that his staff put that on there. Ice should not be used as it can make things worse.

I hope you are able to find the right doctor for you. Please keep us posted and take care.

Thanks so much. Actually I just picked up my gapupentin and found that my PCP had reduced my dose from 2x3 daily to one a day! This is the only thing that helps even slightly so I'm not happy about that at all. Obviously with the big anti opioid push right now it's nigh on impossible to get a prescription for anything stronger but I can't go on the way I have been.

I'm only allowed a one time change of doc in any field of care so I'll be sure to ask around and make sure I get the right pain management doctor.

I find it very hard to explain the pain to people. It's incredibly frustrating.

You aren't saying how many mg the tablets are, but you can go up to 3000 mg of gabapentin a day to deal with the burning. Most opioids will have limited usefulness with the pain. If you do want to go that route, Methadone does work because it is different and affects the NMDA (I think I have those in the right order) receptors. But still, best to use as little opioids as possible.

There are the antidepressants Effexor, Cymbalta, and a couple others that can be effective for the nerve pain as well. Have you tried any of those? I know it seems weird to take an AD but they do work.

Finding a multidisciplinary clinic would be the best. A trained PT can help you a lot with very slow progression of PT to work on desensitization to calm down the nerves. Mirror therapy can help with that as well.

Good luck.

I'm on 300mg x 2daily of gapupentin. My ortho prescribed 300 x2 daily but two per dose. My PCP says that my ortho has to prescribe for me and my ortho says, no PCP does but then she reduced the dose so I'm not sure where I go from here.

I'd rather not get into heavy duty medication because I don't want to build up a tolerance. I have really bad reactions to tramadol and any of the SSRI medications. I pass out and vomit while I'm unconscious on those two. They actually thought it was seizures the first time it happened but that was ruled out.

How much, in the sense of mg of Gabapentin are you taking? Oh right, you just said! Sorry. Didn't read your last message.

But, as others have said, that is what matters. And Gabapentin is NOT a narcotic medication. It is an anti-seizure medication that works extra-ordinarily well on nerve pain.

I'd research your medication a bit before just starting to take it!!!

So that is not very much Gabapentin, and unlike the narcotics, you aren't going to build a tolerance to it. So if you can just get someone to prescribe it, you can increase that dosage and likely get more relief.

Its too bad about the SSRIs, as they can be quite effective. Topamax, a med for migraines, can also help.

Its important to get the pain under control as the longer those pathways are reinforced the harder they are to stop. That's one reason why the sympathetic nerve block is so good, it stops part of the process, which keeps the brain from building up those pathways and reinforcing them. The more that pathway is used the harder it is to get rid of.