Think sons CRPS has spread??
 

I am new here and want to give a little background first,

My son was severely injured in work. He had major crush injuries with a lot of surgeries. He would complain about his foot, especially after most of the many surgeries, even though his foot was not operated on. They did all sorts of tests and just figured it had to do with positioning and being non-weight baring. Months later after being discharged he went back in for another surgery. He walked in and came home on crutches because of his foot (again, foot not involved in surgery) 3 days later his PM dr diagnosed him with CRPS, that was 14 months ago. She started him on Lyrica with immediate improvement. Months later slowly weaned him off. Whenever he was scheduled for a surgery since then he would start on the Lyrica 3 days prior. In December he ended up hospitalized with an infection and 2 surgeries. His other foot, (left) started hurting but not too bad. Then in January after the death of my mother-in-law his left foot again started worse than December but not crippled. Right on the Lyrica and didn't really get worse.

2 1/2 weeks ago he went to bed fine. When he got up he said his left foot was really hurting again. Started on Lyrica immediately. He was limping and tried to keep positive. Next day he woke up and basically crippled. Couldn't put any weight on it, hurt to touch and very swollen couldn't put shoe on. He continued meds. PM wasn't available but called and told him to go to ER. Xray showed nothing which we knew, they gave him antibiotics and sent us home. Next day we called PM because pain seemed to be going up calf. She sent him for an ultra-sound to make sure no blood clots and gave him an anti-inflammatory and increased dosage of Lyrica. 3 days later we saw her and she increased the Lyrica again. There has been some improvement to where he can walk without crutches. It takes a lot to get going in the morning but if he does too much, by that I mean stand or walk for an hour or two to do things around the house he ends up in pain with foot elevated again.

He is now thinking it may not be the CRPS, I disagree. There was nothing to bring on the flare-up but there was also nothing that he did to cause this. What are your thoughts?

My doctor told me once you have CRPS you always have it. It may go into remission, but it can return at anytime, with or without a trigger. I thought I had "beaten" it, but I was wrong, as soon as I over-challenged my CRPS limb I had multiple flares and a resurgence of electrical shocks and sensitivity. Fortunately, with exercise and pool work I am back to improving.

That said, my thought is he might want to try taking Low Dose Naltrexone and getting into a warm pool to exercise his limb asap.

Is the temp of the foot cold or hot?

What is Naltrexone? His foot is warm to the touch, it is not as sensitive to the touch as it was 2 weeks ago. He feels since lyrica isn't working and there were no triggers it may not be CRPS, I feel there is no other explanation

Sometimes only time will tell. Lyrica isn't the only medication to treat CRPS, there are many, many other treatments that work for some and not for others (Lyrica didn't work for me, for example). And you don't necessarily need a trigger for it to spread.

That said, none of us are doctors and we can only speak from our own experience. Clearly something is wrong with his leg and foot. PM should be following closely.

We are in regular contact with PM. PM didn't think it was CRPS at first because there was no trigger. After other things were ruled out she was marking it as CRPS on his file. The problem comes in where if it is the CRPS it is result of accident which means it falls under WC, if not his state Medicaid insurance with different doctors.

It is difficult to be between two insurances, I am owed thousands of dollars which I doubt I will ever recoup, because of two insurance companies. If we had single payer there would be no issue. I hope he gets a diagnosis soon for financial peace and for the financial piece.

Starting PT in the water ASAP is to his benefit whether this is CRPS or not. It is best if he starts it now, before lasting brain changes are made.

Low Dose Naltrexone is a drug protocol used to treat auto-immunity. It is novel, because it is neither a cure, nor symptom control. Basically, it stimulates the body to heal itself! It's a totally different treatment. I have had great success with it, along with PT in a warm, salt water pool. Dr. Pradeep Chopra, A CRPS specialist from RI, rates this protocol highly, too. The beauty of it is, it is affordable, has few to no side effects, and it usually eliminates the need for pain killers. I take it daily and have an emergency supply of Tramadol.

Hi MrsKnot,

I am so sorry for what your son is going through. I know it must be very hard on you as Mom.

Having a crush injury and multiple surgeries makes for a complicated medical situation that is potentially difficult to untangle. Nerve pain and symptoms in the foot can come from a variety of sources besides CRPS, an injury further up, an entrapment from scarring, even a problem at the spine. People can have nerve issues from positioning or even how they slept. One of my doctors at a major medical center told me of a case they were convinced was CRPS but turned out to be deep seated infection. It can really take diligence to sort out.

You didn't say what kind of surgeries your son had or where his injury was. I personally feel it very important to rule out all other causes and treating accordingly before accepting diagnosis. Sometimes this requires specialists outside the box and additional work up and imaging. Physical Medicine, Peripheral Nerve Surgery, neurology and orthopedics may have an alternate view from the pain management doctor. It is important to keep treating the pain no matter the cause but you can keep searching for answers in the meantime.

I hope that your son finds relief and healing soon. He has been through an awful lot. Please tell him to hold on to hope. If he does have CRPS 80% of people improve over time. If he has another issue, even a complicated one, they may yet be able to find it and treat accordingly.

Hang in there Mom, we are sending good vibes and healing love, :hug:

I don't really know whether it is CRPS or not...but I CAN tell you that I often have flare ups with no trigger...or a trigger that isn't easily seen. Stress, temperature changes, pressure changes, the touch of clothing...all of these things can cause a flare up for me. Usually I can figure out what caused it...but it honestly has taken me YEARS to sort out many of the more unusual triggers. Every once in a while I still have horrible flares that seem to come out of no where...and it can take days or weeks sometimes to recover from those flare ups.

With many foot surgeries or because of the crush injury itself, really have them look deeply into pinched or compromised nerves , just in case it is something repairable.

Outside the box ideas-
expert chiropractic to check for & adjust if any misalignments in the foot, leg or back.. possible use of other therapeutic modalities - ultrasound, low level laser or IF stim or e stim..

18 months ago he was on construction site talking to a forklift driver, driver ran his foot over before he moved away and my son went down. Driver panicked and hit gas and ran over his pelvis. He was hospitalized for 50 days then rehab for 10. He suffered a crushed pelvis and a severed urethra. The crush caused devolving injuries on both thighs. He was bagged for 9 months while they tried to fix urethra. He had 10 surgeries while hospitalized and 10 since. The surgeries were to fix pelvis, clean out lesions, suprapubic tube, skin graphs to close lesions and urethra relairs. There were no broken bones in his foot or legs but was in traction for a week until they repaired his pelvis.