[swimtime]

We saw a new pain management doctor today, who seems very thorough. He wants bloodwork done to rule out infection or inflammation as a source of pain. (My son has a history of juvenile rheumatoid arthritis.) He left me scratching my head a bit though. He noted in the exam that his foot temperature was the same as the other foot. (Usually it's colder.) He's really big on using the Budapest criteria for diagnosing, and making sure to rule out any contributing causes.

Because he doesn't have allodynia (thankfully), and no temp difference (at least not today), he doesn't feel that he meets enough criteria for a firm CRPS diagnosis, even though 6 other doctors have agreed it is CRPS, and his foot is usually colder than the other one. He doesn't have swelling, either. But he does have extreme pain, and a purple foot. So he's calling it neuropathic pain and not necessarily CRPS. So I don't know whether to feel confused or hopeful. He's flared up pretty badly from the surgery still, and can't really walk on it right now.

I want to hope that the temp improvement is a sign that the CRPS symptoms are starting to reverse themselves with the hardware out. Yeah, let's just go with that for now. I need a little bit of hopeful. He'll start pool therapy again in a few weeks. Until then, back to the Y we go! (As I take a deep breath and tell myself we can do this again.)

On a funnier note, he joked that they needed to hire me to work there, because of how much information I came with about this whole ugly disease. I've only spent the last year researching all I can about it, often in the middle of the night because that's the only time I can have a complete thought in a house full of kids.

Blessings to all of you, and hoping for more pain free days.

[Littlepaw]

Hi Swimtime,

I think it's great the new PM is being thorough and ruling out the obvious. That so often gets overlooked.

The Budapest criteria allows for temperature or color difference "at one time" in the past in allowance for symptom/sign changes. There is so much variation case by case. Not everyone has allodynia. The TREND consortium that does a lot of the Euorpean research even states a certain percentage of CRPS patients have autonomic symptoms in a limb without pain (lucky them!)

I wouldn't worry too much about the diagnosis. It's great that he's not florid enough for this doc to consider it a no brainer. The treatment for CRPS and neuropathic pain are going to be quite similar. Even ketamine infusions are given for neuropathic pain.

The improvement in temp is tangible progress. It is not delusional to see this as hopeful. Getting in the pool and starting more exercise is going to help a LOT. Purple to me says stagnant blood sitting around not doing its job. If light compression is tolerable give it a try again. The more oxygen that gets to the tissue the better.

Thanks for checking in. I understand it can get disheartening reading the stories here. Just remember that this is the place where people come when symptoms are severe, when they are just diagnosed or are the percentage of patients who don't have improvement. The majority are going to improve over time. It just always take more time than anybody wants. Hang in there, this rodeo ain't over yet. Of course you two can do this!

Loads of hugs are coming your way. Tell the boy he still rocks and my bet is on him.

[mama mac]

Dear Swimtime,
I hope your son does not have CRPS and there is something else found with a more direct and successful treatment protocol. That said, no one is questioning my diagnosis and I do not nor have I ever had allodynia. Temp changes are variable. At first it was hot most of the time, now after a year it's cold some of the time. I do have apopping in my ankle sometimes, but I usually describe it as crunching. Point is, to meet criteria symptoms can still vary. I'm sure you know this with all your research, but I thought it might help to hear it from someone living it too. You sound like a wonderful, resourceful, supportive Mom. All the best ~mama mac

[Neurochic]

As far as the relevance of testing for inflammation markers is concerned, I've pasted below a copy a short excerpt taken from an article called "Complex regional pain syndrome in adults" by Andreas Goebel published in the Oxford University Journal of Rheumatology in 2010 (revised 2011). The relevant bit and the reason the blood work would have been requested by the pain specialist and any judgement reserved on whether it can be diagnosed as CRPS, is shown in red. Dr Goebel is one of the clinicians and researchers who could genuinely be called a CRPS specialist. The references in the text are to a copy of the Budapest Criteria which I didn't copy here but the full article is available free online if anyone wants to look at the criteria.


FIG. 2
Budapest diagnostic criteria (A–D must apply). Note that it is possible to distinguish between CRPS-1 (without damage to major nerves) and CRPS-2 [associated with (yet not causing) damage to a major nerve, a very rare presentation], but there is currently no RCT-derived evidence that this distinction has any consequence for treatment. aThe reflected understanding of allodynia as painful sensation to a number of normally non-painful stimuli is under review by the IASP taxonomy group. Some experts suggest that the term allodynia should be reserved only for brush-stroke evoked pain (dynamic mechanical allodynia). bHyperalgesia is exaggerated pain to a painful stimulus such as a pinprick. cFor example, raised systemic inflammatory markers are not associated with CRPS, even in the initial inflammatory phase; such a finding of raised markers would lead to a search for an alternative or concomitant cause. Abnormal nerve conduction studies do not exclude CRPS, but the primary cause of the observed abnormality must be clarified: CRPS, by definition is always secondary, its presence cannot explain major nerve damage. Figure adapted from Ref. [4].