CRPS: The Misery of Under Treatment

This email was sent 3 weeks ago, and because I had not responded, the patient emailed again today. I have to do a better job!!

Dear Dr. Blake, 

I discovered your blog a few days ago and it has been very helpful in understanding my symptoms. I'm writing to you in the hopes you can offer some advice, but if not, no worries, just consider this a thank you for taking the time to help those of us with foot problems.

About eight months ago during tennis season, I was feeling some tightness and pain in my right achilles, and at the advice of a friend, I bought some rigid, 3/4-length orthotics. I used them in both shoes and proceeded to play one of the longest tennis matches of my life. I took the orthotics out about halfway through, but at that point, the damage was done: since then I have been in constant pain.
Dr. Blake's comment: I am not sure if they were custom made, but orthotics, in general, need to be broken in, tissue stretched out, etc. Also, orthotics really make you use the ball of the foot since that is where they end. But, also there could have been something else wrong with them. 

The orthotics--the front edge of them-- damaged the ball of my feet: the pain is the worst there. But I also experience pain in the arch, the outside edge of the foot, the mid-portion of the foot, and, occasionally, at the front of the heel. I have what feels like muscle pain, but also burning that is nearly constant. I've never had any noticeable inflammation, and when I palpate my foot it is hard to locate any spot that hurts more than another. When I walk or stand for any length of time, my feet seem to go numb, cramp, and feel inflamed, all at the same time. It's not pretty. The only way to be free of pain is to keep the feet elevated.
Dr. Blake's comment: This is typical irritated nerve pain. The constancy of the pain is also classic for nerve pain, not inflammatory pain. The treatment should be directed at the nerve pain. 

After cortisone shots, night splints, a 8-day course of oral steroids, two pair of custom orthotics, every supplement and cream known to man, daily stretching of the calves, exercises, physical therapy, acupuncture, 8 Graston treatments, prolozone therapy, and astym treatments, my chiropractor gave up and sent me in for an MRI on my left foot (we decided to do one foot only as my feet show the same symptoms).
Dr. Blake's comment: If the pain is nerve related, most if not all of these can irritate the nerves more. 

Here's what the MRI says:

Conclusion: Question small tear distal in the fourth MTP plantar plate.

Bipartite medial hallux sesamoid bone with marrow edema in the distal part that may represent sesamoiditis or stress reaction. Small first MTP joint effusion.
Dr. Blake's comment: These may be the cause of pain, but they are really soft calls since these are common for many athletes with no pain. Degenerative changes in the plantar plate and stress reactions can be common to athletic participation and maybe been there before the injury. I am mentioning this only because these do not give you your symptoms right now. They may be part of the picture, but not primary right now. As your symptoms resolve, looking at the individual areas may show that they are somewhat involved. This is nerve injury in my mind right now. 

I went back to my original podiatrist, who seemed totally flummoxed, and suggested I might have fibromyalgia or some kind of connective tissue disorder (!) despite no showing symptoms of that in the rest of my body. He suggested I take muscle relaxants at night and gave me a pain-relieving cream, which seems to do nothing. He also rejiggered the orthotics, which I can't bear to wear for more than an hour.

So I've decided to have PRP treatments on the plantar plate tears (I'm assuming there's one in the right foot as well), but don't know what to do about the rest of the symptoms. I don't really feel any specific pain at the base of my fourth toes, and I can't see how PRP at that site only will be a cure for the rest of my symptoms. From reading your blog, my thinking is that I have an unholy trinity: plantar plate tear, plantar fasciitis and some kind of nerve disorder.
Dr. Blake's comment: Ask anyone with a plantar plate tear, and they can point right to it. PRP is fine to make your ligaments stronger, but it is invasive and your foot is too sensitive right now. Calm the foot down before any thought of PRP. That is for the long-term health of your ligaments, not during this crisis. 

I'm wondering if you have any thoughts about PRP. It seems that the key to calming down the nerves is getting rid of inflammation--but PRP produces it in large quantities. Perhaps it's best to get the tears healing properly and then go about working on the nerve problem.

(Also, for what it's worth, my feet never showed any signs of inflammation, even after what seems like an acute injury.)

Well, there's my story. Thanks again for being so generous with your wisdom and knowledge.

my best,

So, I am sorry it took me 3 weeks and this new email to answer.

Dr. Blake,

I'm writing to you again in the hopes you can help me. If not, I understand.

My condition has gone swiftly downhill. After having PRP treatment, the pain in my feet increased dramatically, so that in the entire foot there is constant burning and waves of numbness. Putting any weight on the feet feels like walking on glass. I've gone from crutches to being essentially bed-ridden.

Dr. Blake's comment: I am personally sorry I did not email you my thoughts on undergoing PRP in the obvious case of nerve damage or hypersensitivity. You are developing what we call complex regional pain syndrome. You should be put on the protocol for this: typically sympathetic nerve block in your back, IV Ketamine infusions, Calmare Pain Therapy. Find out who treats this, or just go to your ER right now and say you have this. There is no diagnostic test for CRPS, previously called RSD, it is a diagnosis of exclusion. It is the only diagnosis that makes sense. It can get worse, it must be treated by a nerve specialist who understands this injury. I am sorry. 

I found a new doctor who believes I have multiple neuromas in both feet. He did steroid injections between the 3rd and 4th metatarsal, which gave me a reduction in pain, about 30 to 40 percent, but that lasted a few days and the pain came roaring back, worse than before. I saw an ortho surgeon who believes, because my pain is bilateral (essentially equal symptoms in both feet), that it's coming from the back. I have had a bad back. Will have an MRI on the back this week.

Dr. Blake's comment: This scenario is unfortunately too common with CRPS. Yes, looking at the back is good since the nerve hypersensitivity may be initiated at the back and then the trauma of the orthotics on the foot nerves set this syndrome off. But, CRPS must be treated now. 

I saw a pain specialist, yesterday, who said I may have CRPS, but he's never seen it affect two limbs this way. He sounded just as confused as everyone else. He prescribed Gabapentin, which is the first thing to have given me some relief. It has taken the edge off so I'm not experiencing constant pain, which is a godsend. 

Dr. Blake's comment: Tell him, and this is the only person you should be seeing right now, that the injury was caused by orthotics in both feet with equal stress on the nerves. Ask him about sympathetic blocks, Ketamine Infusion, or Calmare. The Gabapentin is really the first thing you have taken that works only on nerve pain. See!! I am invested now, keep me in the loop. Rich

These are the best doctors where I live, and they're all coming to vastly different conclusions, taking shots in the dark, it seems. I'm scared, to put it mildly.

Dr. Blake's comment: You are not alone with nerve injury. This is such a common presentation. 10 years ago in the US we really did not have pain specialists, so the profession is evolving. Fight for good treatment of CRPS. Forget inflammatory and mechanical treatments right now. At least for now!

my best,

And the patient's response:

Dear Dr. Blake,

I have been diagnosed with CRPS. While I suspected this, your email spurred me to get a proper diagnosis. It's amazing how fast this disease is advancing. In just the past few days the pain has moved into my calves and my legs feel weak and numb--I can't stand up, even with crutches, without feeling they'll collapse under me. I fear I'll be a cripple soon. I'm trying to find a doctor who understands this condition, but it's not easy.

To be honest, I'm very scared. I'm trying to come to terms with losing the active, independent life I once knew.

I have a question or two if you have time to answer. You mentioned that I should get a sympathetic nerve block, ketamine infusions, and Calmare therapy. I have the option to have all three, but I learned that to get Calmare therapy, I patient must be free of ketamine for six months. If it were you, which would you choose: Calmare or ketamine? (I suppose I could try Calmare first, and if it doesn't work, go to ketamine).

For someone who's just been diagnosed, what would you consider the most important first steps?

I want to do everything I can to limit the advance of this disease and try to live a full life. I have a family who needs me.

Thanks again for your blog, and for your humanity and compassion. 

my best,

Dr. Blake's response:

     Please do the 10 days of Calmare, you will know in 3-4 days if it is going to work on you. I will pray the technician hits the right areas. Also, get a sympathetic block as soon as possible. They can be done at the same time. It should be a 3 or more level sympathetic block on both sides. You can do that tomorrow. Rich