Life turned upside down/relentless suffering

newross · 10-21-2012, 10:59 AM

Hi, this site and this topic seems like a really awesome resource. Thanks to whomever started it and all who post. I'm a 38 yr. old man. I had an ambulatory phlebectomy surgery just over 2 mos. ago (to remove a huge varicose vein in my right calf from just below and behind the knee to the foot). I was under general anesthesia for the surgery and as that wore off that evening I started feeling severe pain in my shin. This isn't the operative area so it was weird. I wonder what happened during that surgery and the surgeon says the shin wasn’t touched…said “yes, that is strange…I have no idea what happened”. It got so bad but I didn't want to drag my wife and 2 young daughters to the ER in the middle of that night. The next day, I went to the practice that did the surgery and they had me admitted into the hospital for an x-ray and ultrasound (neither showed anything wrong). A large bruise showed up on my shin and it eventually had a sac of clear fluid on it. The bruise is now gone but the pain in the non-operative areas has gotten insanely worse. Awful pain has recently spread down my leg and up my leg into my knee. My knee is very stiff now. My leg gets hot then cold and swells a bit often. I can’t touch my shin. The slightest touch sends me through the roof. I lost my job because I was unable to concentrate due to the pain (IT professional at a large bank). The surgeon referred me to a pain management practice that she is directly affiliated with within the same health campus. They all know each other and have financial ties. On my 1st visit, a physician’s assistant diagnosed me with CRPS and ordered 3 lumbar sympathetic blocks within 7 days. I had never heard of CRPS. All of the blocks were the same: warmed my leg and relieved pain for a few hrs. Then they passed me on to a pain specialist at the same practice who ruled out CRPS because the blocks didn’t work. I researched this and found that these unsuccessful blocks don’t rule out CRPS. I absolutely do NOT want to have CRPS. Who would?! I just need to know what my diagnosis is and what to do. All signs point to CRPS. This Dr. has diagnosed it as “pain”. That’s it. Just “pain”. Really?! An MRI revealed nothing. I have been taking Naproxen and low dose Percocet, using a TENS unit and applying topical cream. The only thing that helps with the torturous pain is Percocet unfortunately as I have tried the others mentioned w/o Percocet and it barely touches the pain. I tried Neurontin and Lyrica but the side effects were God-awful and prevent me from taking them even when I titrated slowly with them. I don’t know how I can continue to live with this level of pain and stress(?) My doctor is now having me wean off of the Percocet (says that opiods don’t help this kind of pain) but the pain is worse and worse as I lower my dosage. It’s the only thing that makes me functional enough to not be hiding from the wife and kids, writhing on the floor. I’m reluctant to stand up for myself about the opiods because I don’t want him to think I’m a drug addict or something. He referred me to an occupational therapist and an acupuncturist. The acupuncturist won’t work with me because he can’t put needles in the area due to the high-sensitivity. He said it might make my condition worse. I got a referral from my PCP to a Pain Specialist at Univ. of Pennsylvania for this Wed. I’m at my wit’s end and need help. I’m suffering badly and doing my best to hide it from kids and wife. I’m scared and just want the burning pain to stop. My life as I knew it is being taken away from me in a cruel way. Sorry for the long post. Any guidance or suggestions? Thanks.

Jimking · 10-21-2012, 02:21 PM

newross, very sorry you're going through this. Hopefully its not RSD. I don't have RSD my wife does. She's had it for 10 years. Unlucky for her she was not diagnosed with it for years so her condition worsened. You, on the other hand have been diagnosed quickly with RSD if in fact it is RSD. The good side of this is treated agressively early remission can be achieved.

At this point in your condition it is my belief your pain should be brought under control using narcotics especially if the doctors don't have a clue. You need to seek out doctors who know how to treat RSD in your state. If its Pennsylvania, I've heard of good treating doctors, but can't recall their names. I bet if you start a new tread asking if anyone on this site knows of a doc near you you'd get some good responses. You should also check out this site which has loads of info about treatment and locations of treating doctors.

http://www.rsds.org/index2.html

Kevscar · 10-21-2012, 11:32 PM

I really hate to say it but I think you do have CRPS.
Print this out and take it with you, point out t them which ones you have
http://www.rsdhope.org/crps-symptoms.html
Have a look around the site and print out anything else you think will help

newross · 10-22-2012, 11:20 AM

Yikes. Thanks for your reply and link though....

ginnie · 10-22-2012, 12:18 PM

I am sorry you are going through all this with RSD. The other post is correct, there are things that help. Some people have Katemine infusions, which I have heard worked for them. Please seek out specialist that deals alot with RSD. Many doctors who confront it don't know that much about it to start with. If you post where you are located, perhaps one of our members will help guide you to the approiate type of physician. In my own case I go see a physiatrist. She deals with pain, and the whole person at a cellular level. Often this type of physician, knows about RSD and can help you better. I have RSD or PN in my left foot and ankle. I use a cream, which feels awful to rub in because of sensitivity, but over the course of the next six hours I am very numb, to the burning and pain. I can post the ingrediants if you want, and you can ask your doctor. It is a compound, and for me it helps in conjunction with low dose narcotic. I wish you all the best in this. I know that trying to hide this kind of pain is most difficult. Maybe you should level with your family, so they can provide some of the comfort, compassion, and help they can give you. As humans we don't know all the time, how we react to things, until it presents. Allow your wife, and the kids to help you through this. We all need each other. I will keep you in my thoughts and prayers. always glad to talk to you too. Neuro talk will be there for you. ginnie

RSDcandice · 10-22-2012, 01:34 PM

Quote:

Originally Posted by ginnie

I am sorry you are going through all this with RSD. The other post is correct, there are things that help. Some people have Katemine infusions, which I have heard worked for them. Please seek out specialist that deals alot with RSD. Many doctors who confront it don't know that much about it to start with. If you post where you are located, perhaps one of our members will help guide you to the approiate type of physician. In my own case I go see a physiatrist. She deals with pain, and the whole person at a cellular level. Often this type of physician, knows about RSD and can help you better. I have RSD or PN in my left foot and ankle. I use a cream, which feels awful to rub in because of sensitivity, but over the course of the next six hours I am very numb, to the burning and pain. I can post the ingrediants if you want, and you can ask your doctor. It is a compound, and for me it helps in conjunction with low dose narcotic. I wish you all the best in this. I know that trying to hide this kind of pain is most difficult. Maybe you should level with your family, so they can provide some of the comfort, compassion, and help they can give you. As humans we don't know all the time, how we react to things, until it presents. Allow your wife, and the kids to help you through this. We all need each other. I will keep you in my thoughts and prayers. always glad to talk to you too. Neuro talk will be there for you. ginnie

I see a neuro & Pain specialist, and my GP (for depression/anxiety side to rsd) monthly

newross · 10-23-2012, 08:35 AM

Quote:

Originally Posted by ginnie

I am sorry you are going through all this with RSD. The other post is correct, there are things that help. Some people have Katemine infusions, which I have heard worked for them. Please seek out specialist that deals alot with RSD. Many doctors who confront it don't know that much about it to start with. If you post where you are located, perhaps one of our members will help guide you to the approiate type of physician. In my own case I go see a physiatrist. She deals with pain, and the whole person at a cellular level. Often this type of physician, knows about RSD and can help you better. I have RSD or PN in my left foot and ankle. I use a cream, which feels awful to rub in because of sensitivity, but over the course of the next six hours I am very numb, to the burning and pain. I can post the ingrediants if you want, and you can ask your doctor. It is a compound, and for me it helps in conjunction with low dose narcotic. I wish you all the best in this. I know that trying to hide this kind of pain is most difficult. Maybe you should level with your family, so they can provide some of the comfort, compassion, and help they can give you. As humans we don't know all the time, how we react to things, until it presents. Allow your wife, and the kids to help you through this. We all need each other. I will keep you in my thoughts and prayers. always glad to talk to you too. Neuro talk will be there for you. ginnie

Thanks for your kind reply. I live in south-central PA about an hour and a half away from Baltimore and Philadelphia. I'm going to see a pain specialist at the University of Penn Pain Medicine Center tomorrow. My wife is going with me. I think Penn sounds great but we'll see how much the physician knows about this I guess.

Just in case: if anyone knows of good rsd/crps specialists in my general area please let me know!

thanks again for your help.

ginnie · 10-23-2012, 12:53 PM

I will pray that the doctor in your state, can help you. Please let me know how your appt. goes. don't get discouraged no matter what. I will be here for you and so will Neuro Talk. ginnie

newross · 10-26-2012, 03:24 PM

Thanks ginnie. You're so kind. I went to Univ. of Penn Pain Center on Wed., accompanied by my awesome wife, and was diagnosed with crps and rsd of the lower limb. It's a beast of a drive during rush hour (2 hours +) since it's in downtown Philadelphia, so the dr. referred me to his son (also an anesthesiologist pain specialist) whose practice is closer to my house. Unfortunately, his son is not in-network with my insurance. He actually whipped out his cell phone and called his son's practice during the appt. to try and get me in asap! What a great dr. (Dell Burkey). I was devastated by the diagnosis but feared that's what it is anyway. So now I'm looking for an in-network dr. or team of drs. that is closer to my house. Either that or drive to Philly once a month or even more often. could be much worse though. thanks again

ginnie · 10-26-2012, 04:00 PM

Glad your appt. was OK. I do know about down town Phylly. I did Art Shows in that area every year for many years. Also my folks were from Chicago area, and we went Down the Eisenhower Expressway. NO FUN AT ALL!!!!
I am glad this doctor you saw, called his son. That was really kind, and maybe he can find someone within your insurance circut who can help. If a Physiatrist, is in your insurance program, try this kind of doctor. Mine is a pain specialist/physiatrist, who treats the whole person, rather than just the parts. I think I have PN not RSD at this point, because my ankle/foot/calf, does not change color. This doctor of mine, as gotten it under control. I sure hope this happens for you. Glad you have that wonderful wife of yours, shelter in her arms, and draw strength from each other. Phylly should have a good selection of doctors. I hope and pray you find one to help ease your pain. ginnie