I am wondering what steps toward diagnosing crps/rsd are advisable. Have been working toward a diagnosis on my ankle and foot pain through what appears to be just an endless set of hoops to jump through over the last few years. Is my insurance to blame or am I using the wrong language? My surgeon wants to do more surgeries, would be my 7th in that area if I did. My neurologist said to me "nobody is going to diagnose your problems because your insurance won't pay for it." He wrote me a referral for physical therapy that I think will help me to get back to being more mobile again, but he recently switched to a private practice so is unable to get prior auth through the insurance at this time. Before he switched the referral for PT he gave me was to a doc that didn't take my insurance.

My PCP seems to care but hardly ever says a word in our meetings and after she leaves the room I get a new referral. I will see my PCP early next month and hopefully at that time get a referral for PT that is validated and once I start that they will have to say why there is so much pain in the ankle and foot, I think.

Hi cactus foot, It sounds like you have NOT been officially diagnosed with RSD? Is that right? It was an orthopedic Dr. that officially diagnosed me-a few years after my rsd following surgery. Neurologists and Rheumatologists also are familiar with this disorder. All the information I've read is, surgery on a RSD patient can and often does cause further damage and spread. Hope you get some answers soon. Physical therapy helped me regain the use of my shoulder (for frozen shoulder) really RSD and also PT helped after it spread to hands and caused frozen hands. Take care and keep trying for a diagnosis. How is your pain level?How is your mobility in your foot? your friend, loretta

My diagnosis was from my PMD. He had me go see my neurologist for confirmation. My OT therapists also had an idea that it was RSD. Mine was diagnosed after my 3rd surgery for a median nerve release on my arm. The surgeon opened it end to end. Looking back now I think the RSD was presenting after the 2nd surgery. My surgeries were all within a year and a half of each other. If I could do it all over again I wouldn't have had the final 2 surgeries as it resulted in nerve damage and RSD.

I like Loretta had good results from therapy. I don't think I would have any use of my hand if it wasn't for my therapists. It gave me movement in my fingers... although they are still a little curved in. It helped give me a little strength in the hand and work on the sensitivity to touch.

IMO surgeons want to cut. They generally don't seem to say things like let's try and help this without surgery. I may be jadded as my surgeries didn't end well and my surgeon was an arrogant idiot

I am confused about some of the things you have mentioned about quite how your insurance is a potential complicating factor in obtaining a diagnosis but I will give you my thoughts for what they are worth.

It's entirely possible to have chronic pain in a limb and not have CRPS. It's entirely possible to have chronic pain that has all the classic hallmarks of CRPS type nerve (or neuropathic) pain in that limb and not have CRPS. There are a whole series of other clinical signs and symptoms that must be present in order for a diagnosis of CRPS to be made. Those diagnostic criteria are clearly documented and generally accepted internationally.

For many people with post trauma or post surgical chronic nerve pain problems, the reality is that the therapeutic 'treatments' offered will be much the same as would be offered to someone diagnosed with CRPS. The drugs are the same, the physio and occupational therapy will be much the same and the potential need for psychological support may be similar. However, there can be a number of additional complicating signs and symptoms in CRPS that may warrant additional medication, procedures or management. These additional problems can be severely disabling and complex to manage in CRPS.

If CRPS is present, it is recommended that no invasive procedures are carried out on the affected limb or limbs so a CRPS diagnosis would normally preclude any further surgery unless it was an emergency. A knowledgable orthopaedic surgeon would (and should) be very reluctant to operate on a CRPS affected limb. That is not an issue for a non-CRPS chronic pain condition.

There is no reason that once you start your PT referral, that anyone "will have to say why" you have so much pain. There are vast numbers of people living with chronic pain who never get a reason, a diagnosis, a name or a cure for their pain. This can be the case even after endless tests and examinations. Don't assume you will get answers, you might, but it is as likely that you will never get any answers. Like so many things, diagnosis of the underlying cause of pain is notoriously difficult. I say this, not to be a total misery, but to forewarn you that you might need to be prepared to come to terms with the day to day reality of coping with your pain without a diagnosis plus any financial/admin difficulties this gives you in getting approvals from your insurers if you don't have a "label".

Orthopaedic surgeons are typically poor at recognising and diagnosing CRPS. If your surgeon is recommending further surgery then you need to be asking why - what exactly does he think the cause of this pain is and why will the next proposed surgery be treating that pain? Before going through with it, if there is a realistic possibility you meet the criteria for CRPS, then you would ideally be asking your PCP for a referral to a pain clinic to see a pain management specialist (often someone who has trained as an anaesthetist) or a rheumatologist since they do a lot of pain management by virtue of the types of painful conditions they deal with. Either way, the specialist would examine you and take a detailed history to try and rule CRPS in or out.

Sometimes it is diagnosed by neurologists (technically it is classified as a neurological condition) but that can be rather hit and miss unless you happen to know that the neurologist you are referred to has real, decent experience of CRPS. Is your neurologist saying that your insurance company won't pay for you to have a specific referral, examination and testing by a pain specialist to determine what he/she thinks the cause of your pain is?

I hope that this is of some help and I'm sorry if I have misunderstood anything you were saying. I'm sure other people will add their thoughts and if you have any questions, just ask.

Seems most of the responses have questions, I have a photo in the pictures thread that should answer most of them.

I'd link but this site wants me to have 10 posts first.

Have you tried swimming? Warm water PT is great for RSD.

In case it is RSD do not use ICE! Do not allow more surgery until you get a diagnosis.

Regular PT can be harmful. Make sure your therapist has RSD experience or is at least knowledgable.

Pics are NOT enough for even a qualified RSD doc to determine what's wrong. There are other disorders that are similar such as neuropathic pain from diabetes.

If your insurance includes mental health services, a pain psychologist would help. Not only is isolation a factor with a severe pain disorder, but there are several things you could use help addressing: financial stress, coming to terms with your changed lifestyle, how other's deal with your illness, potential disability, learning to reduce stress, learning coping strategies such as deep breathing, etc... And you might not click with the first one you meet--but there are good ones out there.

BTW, are you hypersensitive to touch? Vibrations? Noise?

Yeah found out shortly after leaving the hospital when the pain set in that ice made it worse. Have stayed away from it since. Warm/hot water is soothing but the motion of any substance in certain areas is intolerable. It's a lot of nerve damage from about half calf down, leaving me with a slab of numbness in the center and a literal gateway to hell on the left side of the foot, ankle and heel. Fortunately the right side of the foot is mostly normal, the big toe is healthy and strong, and my right leg has no problems. The first 3 surgeries were done in the 2 weeks following the injury where they removed some shattered bones, adjusted some relocated stuff and cleaned it up. The next 2 were about 5 years apart starting 5ish years later, and the last one was 14 months ago. I don't want any more surgeries, I've never wanted any except they say they know what is wrong and how to fix it and when you constantly hit that 10 on the meter throughout your most careful of days you look for ways out. And when they are wrong and it doesn't make things any better only worse they say NOW WE REALLY KNOW! LET US CUT YOU AGAIN LOL

I would get in and see a PMD or a neurologist. Just make sure they are familiar with RSD/CRPS before making and appointment. I was fortunate that the neuro I have seen for my migraines is also versed in RSD so it was easy to get an appointment to confirm the diagnosis.

I was dx over the summer and still working with my PMD to try and come up with a good mix of medication. Even with a dx there is no one pill that will help lessen the pain. I'm just muddling through and learning as I go.