Hi, I posted my conditions yesterday regarding my Dr. concern that my surgery recovery could be due to the onset of RSD (Post titled: Early detection? Lyrica?). He's opted to put me on Lyrica for a week and see how my knee reacts, so we'll see but right now I'm reacting kind of like a dizzy sack of potatos. lol

Anyway, I spent some time reading the posts and I could not believe the pain and trouble so many RSD patients are enduring. It broke my heart and really scared me. Right now, I really don't have symptoms that can compare to so many on the forum.

Basically after my surgery recovery was slower than expected (I'm 6 weeks out from the date of my surgery) and my knee has sort of frozen up, like as if it was full of cement. When I go to PT it can be excruciatingly painful when we try to gain any range of motion (basically massaging and pushing on my knee as it hangs off the table to get it to drop)...BUT when I'm just resting at home or getting around on crutches, I have more of an uncomfortable pain. My symptoms seem like nothing compared to what I've been reading in this forum and I'm wondering "why" my Dr. thinks it's RSD as I have no where near the symptoms and troubles a lot of you are experiencing. Is it possible to have a "mild" case of it or is this just how RSD begins and if I do in fact have RSD I will develop the more extreme symptoms?

Thanks for your feedback and my heart goes out to all of you struggling with this disease. The strength and support detailed in the pages of this forum are unbelievable. You are all hero's.

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

Sorry to meet you this way! I'm Sally and I've had RSD for 9 weeks. It's in my right hand and arm to the elbow. I was put on Lyrica right after the injury. It made me so dizzy and blurry eyed that I asked to be taken off but the pain was too intense. So I put up with the blurry vision, dizziness, weight gain, inability to concentrate, fatigue, ringing in the ears and constipation, in place of the unbelieveable pain. It took 6 weeks to adjust to the 300 mg per day of Lyrica although all of those side effects remain.

I too feel fortune that my case is mild compared to others on this site. My heart goes out to everyone that endures years of this disease.


Sally

what Sx do you have with your RSD. and its right about the lyrica it take a while to build it up in the body and i week wouldnt be long enough.. i have had rsd full body or 11yrs now . im sorry that they think its rsd. i would ask what makes the dr think that you have rsd ? if you feel like you dont think that you have ... hope that they figure it. nice to meet ya


carrie

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.