THis is an excellent question. I don't know the answer but I hope someone out there does.

Hope you're feeling better

klb

Hi Trime

Why don't you ask your doctor to explain his reasoning for reaching his suggested diagnosis? That might put your mind at rest and will be one less thing for you to be worrying about just now. It is a potentially serious condition which can be extremely disabling so the last thing you want is to be worrying about dealing with CRPS if there is a chance that you don't actually have it. It is impossible to say over the internet why he might have reached that conclusion but you have every right to ask for an explanation. Your posts don't seem to describe the sort of range of symptoms that most medical guides dealing with CRPS would nornally list.

CRPS is a diagnosis that is reached by ruling out everything else and by applying a set of clear diagnostic criteria which require certain signs and symptoms to be present before a diagnosis can be made. The "mildness" of your symptoms wouldn't necessarily prevent a correct diagnosis of CRPS but I suppose it may make it less clear cut.

Lyrica is not a drug that can be prescribed for a week "to see how you react". It is a drug that has to be gradually introduced to and then removed from the body and you need to give it a few weeks at a proper therapeutic dose to see if it is working for you. It is an anti-convulsant drug that is commonly used to treat various types of neuropathic pain. If your doctor has prescribed it in the way you have described - ie for a week to see how you react then I'd be concerned about his prescribing knowledge and I would be questioning him on that as well. If you look on the net there is a great deal of info about Lyrica (also known as pregabalin) so you can read up and understand how it works before you speak to him.

I hope that it turns out you don't have CRPS. Either way, at this stage I'd recommend you do what you can to get some explanations and justifications from your doctor asap.

RSD for some does start out as "mild". You may have color changes, skin temp change,swelling and of course pain at the site. There may or may not be sensitivity to air,touch, both or just one of them. Some people will begin with horrible pain,burning and all the other stuff and progess quickly. Going fast or slow and how you rate your pain is entirely an individual thing.

Gymjunkie is right about the lyrica. It takes a minimum of 2 weeks up to a month to see any effect and if it's even helping or not. It's for neuropathic pain. So far, no one, including me, has had it actually help our pain level.

If you have rsd then you need to get a series of lumbar sympathetic blocks done immediately. The goal of these blocks is to interrupt the pain cycle and "reset" the nervous systems. They're done by a pain management doctor who is usually also an anesthesiologist. It's possible that if they're successful you could go into remission. There is no cure for rsd, only remission. If you do have rsd and go into remission it could come back at any time.

I haven't seen you say....forgive me if you have....why does your doc think you have RSD to begin with? What are your symptoms? Besides the pain that is. :-)

Hugs,

Karen

trime,

I think this one statement is pretty accurate. While there are several "classic" symptoms, not everybody has every symptom, not does everyone have the same severity. Some of the more common signs seem to be the swelling, sensitivity, and color changes along this the biggest one - pain that does not have an obvious cause and does not heal.

Different severities exist all over. For instance, you and I can both have a cold, but while you continue to go to work, but take your tissue box along, I might be in bed and not able to face the world.

Early treatment appears to be a key in not having the RSD grow into the monster a lot of us have. It sounds like your doctor may be on the right track that way. But, as Gymjunkie also said, Lyrica takes time to build to a theraputic level. It's not like taking an aspirin for your headache. Have a little patience.

I really wish you well,

Mike

The only common denominator for RSD patients at the very beginning is the pain that is way out of proportion to the severity of the injury. Many of the other symptoms might not be present right away or all the time (!!!), and might even only start to develop further and be present all the time as time and the condition progresses or spreads throughout the limb. By then it could be far far far too late. You might end up with wasted musculature and osteoporosis. It won't make it any easier.

I think it might make it a lot less clear cut to doctors not knowledgeable enough. Mild is exactly what makes it far more dangerous for the progression of CRPS if your doctor wasn't as good or as fast to treat it. Overlooked "mild" can get pretty damn bad, as bad, if left untreated. Luckily you are being treated fast.

I wouldn't consider a frozen knee mild though.

i got rsd in 2001, and it was EXTREMELY mild until 2004 (it was also undiagnosed until last November!).
it's in my left foot, and from 2001-04 the only difference was i could no longer wear heels, flats, sneakers, etc. my pain was nonexistent as long as i wore good gym shoes with inserts. i also had to stop walking barefoot at that time.
in 2004 i began to have unprecedented pain flareups, where i had to go on crutches and get cortisone shots (which i've since discontinued). i also began to lose my ability to do weight-bearing exercises--over time i've lost running, all sports but water sports, biking, walking fast, elliptical, dancing, standing for extended periods of time.
but i'm still a "mild" case, as diagnosed by my doctor at the Rehab Institute of Chicago. i think in my case "mild" refers to the fact that my sleep isn't disrupted by pain, it hasn't spread beyond my foot, and the pain is usually mild to nonexistent when i'm off the foot.
yet it's still progressive, which is scary. i'm doing physical therapy, and tomorrow i'm being given a TENS box for home use. they think i could see some turnaround. i hope that's the case for both of us!

oh, one more thing! i had NO color or temperature changes until a July 2007 flareup--well into my totally crappy RSD period--when my foot turned dark purple and was very cold (now i alternate between cold and hot during flareups). silver lining of this: after six years of skepticism, my dad finally truly understood that i was in pain! as excruciating as it is, the color changes are at least a way to stick it to the cynics. invisible diseases are hard. my mom has fibromyalgia, and i'm sure she sometimes wishes she could show a visible symptom to people who are rude about her being tired.

I guess mine was pretty "mild" at first. It stood my life on its ear but I didn't know that it was caused by my sore hand. The pain in the hand really wasn't that bad and I even used it at first but then I learned that usage would cause it to hurt the next day or the day after. So I started using it less. The pain wasn't high level but it was an awful pain that came with a sense of dread and pessimism. It was a persistent pain that I would avoid at all costs so I quit using it much. Since I was still doing a job that was considered extremely physical they wouldn't diagnose it or even tell me what it was. Of course it got worse but then I got off the medication and satarted making a little headway. I was using the hand again but favoring slightly. I suppose this was a partial remission though I was still pretty bad really.

But then I twisted my ankle and it was sharply downhill. It wasn't long before my mental condition deteriorated. I've achieved a sort of stability now with the drug regimen and avoiding all the stressors which are numerous. I feel more fragile than glass but have the pain under a some control. My life has shrunk to a few square miles which I can navigate in the mornings when symptoms tend to be much milder.

I'm way beyond feeling sorry for myself but can't imagine this being any worse whatsoever. But my heart goes out to so many here who seem to have it so much worse.

One wonders if this isn't apples and oranges; there are just different ways this manifests or maybe we're dealing with more than a couple different disease processes here.

Interesting post.....
I echo what everyone else has said about "how everyone is different. " Not everyone will have the same symptoms.
Also, mild/moderate/severe are somewhat subjective terms--- in other words, each person percieves things differently.

I have it in my stomache (confirmed) and (probably) in both legs as well.

With the RSD/CRPS in my stomache (a complication of abdominal surgery), other than redness, I never had color changes. What I did have was a feeling of "hot" , deep down itching, nerve pain (I have allodynia, so even before CRPS, I was familiar with how nerve pain felt) and burning. Because of the nerve pain feelings, during one of my neuro visit (for other neuro problems) I asked if there were any nerves running near my inscion site. It was almost as if a light bulb went off in his head--- especially after he asked me what me and my GYN (it was pelvic surgery) had tried. I had no clue, and he didn't really mention it in detail to me at the time other than a "hmmm and we can try Botox if another lidocaine injection from your Gyn doesn't help"...... It flares for seemingly no rhyme or reason. Diagnosed about 4 months after my surgery. Unfortunatly it seems to be getting worse....

My legs, on the other hand, are different. The suspected cause of that is the fact that I have broken both feet/ankles--- twice ( I was a gymnast from the age of 3 till 23--- 3 of my breaks were at least partially gymnastics related, at ages 10, 13, 14 and pathologic break at age 24-- unrelated to gymnastic) and countless broken toes, strains, and sprains. Some of the symptoms are the same, but, unlike my stomache, I do have color changes and it is much worse in the summer vs winter. However, I don't tend to have the deep down itchy-ness in my legs. Just recently suspected to be CRPS--- was, by previous drs, just thought to be part of my allodynia or muscle strain or plantar fasciites, etc by well meaning, but not so informed drs, after at least 7 yrs of dealing with it.

My treatments: for my stomache, after several unsucessful lidiocaine injections from my GYN, my neuro wanted to try Botox--- and I agreed (despite severe tactile defensiveness from sensory processing disorder). I was living overseas at the time, didn't have a car to take me from place to place--- so I walked everywhere, and was desperate for anything that might help and allow me to function with less pain. Thankfully, while it hasn't gotten rid of the pain, has been somewhat helpful. He also increased my dosage of Neurontin, which I was already on for Epilepsy and allodynia. For my legs--- I use a TENS unit (which I got before the CRPS was suspected) when I tolerate it, which helps some, and Neurontin does a bit too. I am also on Elavil for allodynia, which helps the leg CRPS (not my stomache), but doesn't do anything for my stomache.

As for the meds, I've been on anti convulsants-- (both for my epilepsy and nerve pain and CRPS) for 16 years. Understand that ANY of them take time to work and build up in your body, unlike a regular pain med. They also come with their own unique set of side effects, that typically fade in time (depends on the med though). I've been on Neurontin, which is similiar to Lyrica ( i did try Lyrica for a bit, but I had a parodoxical reaction to it and it made my seizures worse),-- at various doses, about 3 yrs now. The upside-- the higher the dose, the more it helps. The downside--puffiness (i didn't gain much weight, but i craved salty foods), and for me, cognitive effects. I am on a moderate dose right now to try to deal with a flare and spreading with my stomach and ward off flares in my legs--- hopefully my new neuro will have some more suggestions. In any case, one week is not enough time to give the Lyrica to work or to figure out if the side effects are going to fade in time, so don't rush to judgement based on one week (heck, it took me several weeks to even titrate onto Neurontin and dosage adjustments are made gradually, ditto that when I tried Lyrica as well....)

Keep asking your doctors questions. Keep seeking asnwers and don't hesitate to get 2nd or 3rd opinions or switch drs if your not confident in yours.

Good Luck and Hang in there.

L2L

A neurologist prescribed me Lyrica and instructed a gradual increase. The first dose I took was 75mg's and withiin 4 hours. I could sorta walk without my crutches. soft hugs