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View Full Version : has anyone had very infrequent pain in the first few weeks of diagnosis?




fewdalord
04-18-2009, 11:37 AM
I have pinching pain in knee from time to time, maybe 7 times a day and it passes
I also have striking pain in a small toe and left side of foot
I seem to have swelling in left ankle and foot and redness in ankle and foot
the reason I ask if my diagnosis is correct is that I dont have constant pain
My injury was 4 weeks ago and diagnosis was one week ago
sweeling seems to be abated some also




allentgamer
04-18-2009, 11:51 AM
This month is my 10 year anniversary with RSD. It took the doctors 3 and a half years to come to the conclusion that I have RSD type II. I have read over and over again that an early diagnosis, and some aggressive treatment could put RSD into remission.

Too bad my doctors were so slow to realize that the monster was RSD for me. They kept trying to tell me that I was imagining the pain, or was faking for the pain pills. To this day I still feel like I have to prove myself every doctor visit. So sad. :(

I am sorry to hear that you were diagnosed with this awful thing called RSD. But am glad you found this place, as it has the most caring, understanding folks in the world right here. :hug:

Dew58
04-18-2009, 01:58 PM
I have pinching pain in knee from time to time, maybe 7 times a day and it passes
I also have striking pain in a small toe and left side of foot
I seem to have swelling in left ankle and foot and redness in ankle and foot
the reason I ask if my diagnosis is correct is that I dont have constant pain
My injury was 4 weeks ago and diagnosis was one week ago
sweeling seems to be abated some also
fewdalord,

I can relate to your post. Everytime I have to visit my PM doc, he tells me that I will never be cured of this syndrome..get use to my new sedentary life.

I cry everytime, as if it was the 1st time I had heard those words. I keep hoping that this diagnosis is a big mistake, and I can have my active life back. I realize "denial" of the syndrome is not healthy for me, emotionally..but, sometimes..I choose to think that this is just a weird thing happening to me right now and all will be back to normal.

Hope is a good thing;denial is fooling oneself. You are new to this culprit. You will go through stages as if you are grieving..because you are grieving. Please know you have support here, I am here for you anytime.

hugs,
Dew

ali12
04-18-2009, 03:23 PM
When I first developed RSD, I didn't always have the constant burning pain. The pain that I initially got was a shooting type of pain and redness around my ankle bone. Over time, it got worse and worse and turned into a constant burning pain with shooting pains also.

If you don't believe your diagnosis is 100% accurate, I would seek a second opinion. Sometimes doctors can mis-diagnose RSD or put it down to be something else. It's important that you feel that you have been diagnosed accurately so never be afraid to ask for a second opinion if you feel it is neccasary.

If it is RSD, you are lucky in the sense that it has been diagnosed quickly. The best chance of it going into remission is if it is caught within 3 months.

I'm sorry that you are going through all of this. Please know that you aren't alone though and that we will try and help you if we can.

Take care and please keep us updated when you can.

GalenaFaolan
04-18-2009, 06:14 PM
The main thing about rsd is that everything else has been ruled out.

It's not unusual at all in the early days of rsd for the pain to come and go or to feel relatively mild. Everyone has a different pain threshhold which also plays a huge part in how they rate their pain. Some have a 10 pain right from the get go that never stops. Others, it comes and goes, as does the discoloration of the skin and swelling. I had swelling of my left knee and lower leg for the first 4-5 months. Once I began walking on my own again, the swelling disappeared. Since then, just over 6 yrs ago now, I only have minor swelling in my ankles and that's it. I've had my hands swell a couple of times but only because I seriously overdid it.

The ruling out of everything else is the reason why docs will have x-rays, mri's, emg's and bone scans done if they suspect rsd. Those along with the physical symptoms will confirm it. It's important the doc is knowledable about rsd and also don't have their head full of myths.

My pain was pretty bad right from the start but I had good days when the pain wasn't so bad. This up and down thing is what gets to many people. They expect rsd to be horrific pain and if they don't have it they think they don't have rsd. It's doesn't have to be that bad but as time goes on without treatment, it can become that way. RSD is a disorder with a lot of fluctuations of symptoms. A lot of things are "normal", and it's always a good idea to be sure it's not something else.

Hugs,

Karen

loretta
04-18-2009, 11:05 PM
Hi Dew58,
I appreciate your thoughts about grief and rsd. so very true. It wasn't until 8 years into this disorder (took 4 years to be diagnosed) that I found a Phychiatrist, Neurologist, and Pharmacologist 3 in 1 Dr. that really helped me get to a better place with this, He is my pain management Dr. He actually just has a part-time Dr. found him in the yellow pages! He knows rsd, and for the first time really got to understand the disorder, and get the right meds and now am ina better place physically. Still have some ad days, but am mobile, gone completely of 4 meds and with some more weight loss, hope to cut back on high blood pressure meds. I gained a lot with neurotin and lyrica, but I was having daily electrical shocks, jolts, jerks, spasms, etc. Plus of course, all the sports our family was involved in had to stop. This is a wonderful forum with lots of kind, knowledge people. I enjoy your posts, nice picture too. Have you looked into HBOT? My Dr. is building two clinics here with a HBOT in both of them. I am looking forward to trying it. Met a lady at the national conference that was really helped. There is information on the web, I'm sure you would have to fight WC, but I have a feeling you aren't going let them push you around.They really messed up delaying your treatmen. Our window of time for remission is
small. Take care, loretta

CRPSbe
04-19-2009, 11:52 AM
The ruling out of everything else is the reason why docs will have x-rays, mri's, emg's and bone scans done if they suspect rsd. Those along with the physical symptoms will confirm it. It's important the doc is knowledable about rsd and also don't have their head full of myths.



Well said, Karen!