[Lancs Lad]

Hi all, a newbie here.

I had a visit with my Orthopedic Consultant last night having recently undertaken a number of procedures on my knee.

I originaly went in with Category 2/3 Arthiritis in my knee (Im only 36 years old, and have had 3 arthoroscopies to remove damaged menical tissue resulting in there being nothing left and the arthiritis got worse).

I underwent a Partial Knee replacement in December 2011, resulting in HORRENDOUS pain, the worst in my life, ive broken bones, hand a fair few cuts and injuries before and have never had a problem with pain.

I emptied the drugs trolley when in hospital and they had problems bringing my pain under control. I have a number of phemoral nerve blocks that helped massively until they wore off.

Complications occured and my foot turned 30 degrees, the consultant coudlnt figure out what was going on, pain continued for around 3 weeks and I was then re-admitted and underwent a Total Knee Replacement.

This resolved the foot turn, and likewise the pain subsided. However 3 months on, Im still not able to walk, Ive had severe muscle atrophy still have a fair amount of pain, am on oxicontin its was upto 80mg daily, but Im down to 40mg now (I did try coming off the meds but pain came back with a fair vengance), I have a reduced lag of movement in the leg, it cant get straight, pain is continous when walking and getting up in the mornings is a right grind.

I have some discolouration to the thigh area, but I dont have this "burning" pain that seems to be on the websites, although I do have a number of the other symptoms.

Generaly, I can touch the area without any major pain, I have lost nerves sensation to the right of the scar - its completely dead as a result of the incisions during the procedures.

The consultant thinks that it may be CRPS as we have ruled out any procedural errors and other causes from the surgery.

Ive been reading up on the web, but Im sure you all know what that can do, if you read to much you self diagnose with cancer and give yourselves 2 weeks to live.

The consultant is referring me to his Pain Specialist in the next couple of weeks.

So I thought I would post on here and get the thoughts of those that have the problem to see what you all think.

Is it likely that I have CRPS.

[lorigood243]

Dear Lancs Lad

First Im gad you found us, second, Im sorry we had to meet this way! you have endured a great deal, I know it can be so scary! I have internal RSD also known as CPRS. so i have different problems than what you have, but there are many folks here that have it in their legs that can give you great advice. fortunately you have found a diagnosis, i went for 5 years without one, going to many doctors for help with out anyone knowing what was wrong with me.
I cant tell from your post how long you have been dealing with this, but they say if you catch it early, like the first 3 months, you have a good chance of remission. I hope you fit in this, or some where close. also, there are many good rsd web sites, one that i like is www.rsdhope.org and www.rsds.org
keep asking questions here as they come to mind. there will always be some one here that will have an answer for you, and no question in stupid so ask away. everyones pain is relative to whats going on in their life. some days will be better than others, and bad days might seem like they wont end, but they will. Have hope that you will get on a pain management regimen that will fit you perfectly.
blessings
Lori

Originally Posted by Lancs Lad

Hi all, a newbie here.

I had a visit with my Orthopedic Consultant last night having recently undertaken a number of procedures on my knee.

I originaly went in with Category 2/3 Arthiritis in my knee (Im only 36 years old, and have had 3 arthoroscopies to remove damaged menical tissue resulting in there being nothing left and the arthiritis got worse).

I underwent a Partial Knee replacement in December 2011, resulting in HORRENDOUS pain, the worst in my life, ive broken bones, hand a fair few cuts and injuries before and have never had a problem with pain.

I emptied the drugs trolley when in hospital and they had problems bringing my pain under control. I have a number of phemoral nerve blocks that helped massively until they wore off.

Complications occured and my foot turned 30 degrees, the consultant coudlnt figure out what was going on, pain continued for around 3 weeks and I was then re-admitted and underwent a Total Knee Replacement.

This resolved the foot turn, and likewise the pain subsided. However 3 months on, Im still not able to walk, Ive had severe muscle atrophy still have a fair amount of pain, am on oxicontin its was upto 80mg daily, but Im down to 40mg now (I did try coming off the meds but pain came back with a fair vengance), I have a reduced lag of movement in the leg, it cant get straight, pain is continous when walking and getting up in the mornings is a right grind.

I have some discolouration to the thigh area, but I dont have this "burning" pain that seems to be on the websites, although I do have a number of the other symptoms.

Generaly, I can touch the area without any major pain, I have lost nerves sensation to the right of the scar - its completely dead as a result of the incisions during the procedures.

The consultant thinks that it may be CRPS as we have ruled out any procedural errors and other causes from the surgery.

Ive been reading up on the web, but Im sure you all know what that can do, if you read to much you self diagnose with cancer and give yourselves 2 weeks to live.

The consultant is referring me to his Pain Specialist in the next couple of weeks.

So I thought I would post on here and get the thoughts of those that have the problem to see what you all think.

Is it likely that I have CRPS.

[Lancs Lad]

Hi Lori, the problems started December 2011, with the first knee operation and have continued till now.

The symptoms that I have, I don't know if they "fit" the RSD profile, I don't have this "burning" felling that many of you seem to suffer with, the pain is restricted to the area of the operation - the knee area, quadriceps, patella and hamstrings.

Normally after knee replacements you should be "up and around" within 10 to 12 weeks, walking without aids etc. I cant even go to the store for the weekly shopping without having to get a "scooter" around the store.

I have restricted joint mobility, I cant straighten the leg due to the pain that gets created when I try, the pain is far in excess of what nurses and the consultants have seen. I had the feeling when I was in hospital that they were thinking that I was just trying to get off my head on drugs, with comments such as "you have had enough drugs to sedate an elephant", even though that was the case, it wasn't touching the pain.

What is internal RSD? I guess that you dont have the skin type symptoms that seem to be the norm.

The doc seems to think that I have excess reaction to pain (what he thinks is leading the the CRPS) that is creating my mobility problems.

Is this just the start,,,,does the Burning and other stuff come later?

[birchlake]

I'm assuming you meant that your first operation was December of 2010, not 2011?

When exactly did you have the total replacement?

A solid diagnosis can be difficult and oftentimes takes time and the opinion of many professionals. It is usually a "diagnosis of exclusion", meaning that every possible other root cause is ruled out. I saw 6 doctors and 2 physical therapists, and had countless imaging tests performed before we had a solid grip on my diagnosis.

As for symptoms, it is very individual. You do not need all of the "common symptoms" of CRPS to have CRPS.

Not sure how your health care works, but is it possible to get a neurologist or another orthopedic surgeon to give you an exam? The more looks you get the better, as CRPS can be underdiagnosed or even overdiagnosed (when it is something else)

If you just had the total knee replacement not that long ago, I sure think that there is a "possibility" that what you are experiencing may be related to your recent surgeries, and may not be CRPS. This is where it gets tricky though and where second, third, and fourth opinions are valuable.

I am in need of a partial knee replacement, but because of the CRPS in my right foot, I'm holding out as long as I can. So when the time comes, it will probably be a total replacement, which is okay as then I won't have to worry about a revision.

As for your pain, it is such an individual strategy, as what works for one won't work for another. Lots of trial and error. I was addicted to Percocet after taking it for a year. Weaned myself off of it finally and no take no narcotics, but do take nerve drugs and other pain medications.

Being referred to a pain specialist is a VERY GOOD thing. They oftentimes can help, where orthopedic doctors struggle. And it would be interesting if you were to try a drug commonly used to treat CRPS (like neurontin) to see if you have a positive reaction to it; that would give you another good data point in figuring this thing out.

Good luck and keep us posted!

[Lancs Lad]

Birch, yes, sorry it was December 2010, the 11th to be exact, and the other surgery for the TKR was then undertaken on the 31st of December - great way to spend New years eve....

A later MUA - manipulation under anaesthetic was undertaken in Feb of this year.

As for our health care, Im currently seeing my orthopedic consultant by going "private", which is like your standard health care where I have insurance that gets you treated quicker and at places of your choice, the joys of living in the UK. However I will be seeing the pain specialist under our National Health Service where the state will be paying for any treatment.

The consultant is referring me to the pain specialist with the hope that the pain I feel when trying to use the leg can be got under control, however he said that the "over reaction" of the pain could be CRPD.

Im using oxycontin at the moment as pain management, at 20mg a day, however I have increased this to 40mg today and have been up to 80mg immediately after surgery.

Fingers crossed, once I see the pain guru that they can come up with something that doesnt space me out and enables me to get walking properly.