[buppy911]

I am so glad I found this forum. Now I have not been diagnosed with RSD nor do I know if I have it and I'm not sure where to go from here. This is my story. Back in the first week of April I noticed a small area on the palm of my left hand that was a little bit sore...only when I pressed on it or bumped it. I thought nothing of it until it got worse a few weeks later and started to get red. I went to my pcp ( I am also diabetic so this concerned me). She put me on antibiotics for a few days. They did not help at all. I was admitted to the hospital where they put me on iv antibiotics (vanco). I was on this for a week while my hand/wrist continued to swell and got redder. I saw orthapedics, infectious disease, and a few other doctors. They decided that it needed to be opened up and cleaned out and wanted to take some tissue sample cultures.

They did the surgery and took the cultures. When they opened up my hand/wrist, there was no sign of infection (they had been calling this cellulitis) All of the cultures came back negative. All blood tests were normal.
They did not know what to think. I spent 15 days in the hosp (this time) and went home. A week later my hand started to "flare up" and I was admitted back into the hosp for another 12 days...coming home with a picc and on iv antibiotics. This did not help. We stopped the meds and my hand seemed to be doing better. Now it's been a month since it's "flared up" and all of a sudden, it's back again. I am going to therapy 3 times a week...it's been 3 months since surgery and i still can't make a fist. It is getting more and more stiff, swollen, super sensitive, burning sensations, sharp shooting stabbing pains in my wrist, sweating, my finger nails on that hand grow like mad and it hurts like a sun of a bumble bee!!

My therapist mentioned RSD and I did some research...every single sympton they list...I have in that hand and wrist. I'm not sure where to go from here. My pcp has me on neurontin, but I just started it and it doesn't seem to be doing much of anything. Do I see a neurologist?

Any information would be greatly appriciated!
Thanks in advance

[Rrae]

What an ordeal!!

I'm so sorry you are dealing with this! BUT!...
You've come to a fabulous place! The care and support here is beyond amazing. Everyone here 'knows' the anguish of pain and the endless cycle of unanwered questions.....

I just wanted to say 'Welcome' and am glad you've happened upon this place that has become my 'safe haven', as i like to refer to it

Others will be along to share and give good insight

You'll get plenty of good support and suggestions......


Caring
Rae

[buppy911]

Thank you so much for the warm welcome and kind words. It means the world to have a place to come and share with people who know what I'm going through. I forgot to mention about the loss of muscle and strength in that arm and hand. My arm from the elbow down is half the size of my right arm and the therapist tested the strength in both hands. My right hand was 70 pounds and my left was 7. It's nearly impossible to do daily chores and such. It's scary to think about what could happen in the future. I am getting a sore spot on my right hand now just like the left one started out as. I am hoping that maybe I just bumped it and don't remember...keeping positive and hoping for the best!

I look forward to talking with people here. I have done a lot of reading here tonight and I am beyond impressed with this forum and the caring atmosphere here.
Thanks again

[peppermintpatty]

I'm so very sorry to hear about your symptoms. I agree with Rrae, this place is wonderful. It's the only place I've found where people actually 'get' what you're talking about.

I would for sure start with a neurologist and also try to get a pain management referral as quickly as possible.

Hang in there.

[dreambeliever128]

You might try an Anesteologist also. Find one that has his office set up and not only works in a hospital. They are becoming PM Drs. also.

Ada

[butterflykisses]

Hi buppy, i am new to this site also and after reading lots here and recieving a warm reply to a thread that i posted. I am feeling very encouraged and not quite so alone in this journey. I was diagnosed july 13,2010, so yes its is new and scarey and i have to leave my home town to go for weeks of intensive therapy. .I am feeling very optimistic and ready to get started on this detour. It is not the route i would have chosen to take but hey i will make the most of the scenery along my way and endure what it takes to try and work through the stiffness and pain in my hand and arm. I can keep hoping for a remission and support to stay positive through this journey is something i think starts within onesself and then is richly enhanced by the wonderful people in this group from what i have seen here so far. I think we are blessed to have found this place. wishing you happiness and all the best !

[General]

Originally Posted by buppy911

I am so glad I found this forum. Now I have not been diagnosed with RSD nor do I know if I have it and I'm not sure where to go from here. This is my story. Back in the first week of April I noticed a small area on the palm of my left hand that was a little bit sore...only when I pressed on it or bumped it. I thought nothing of it until it got worse a few weeks later and started to get red. I went to my pcp ( I am also diabetic so this concerned me). She put me on antibiotics for a few days. They did not help at all. I was admitted to the hospital where they put me on iv antibiotics (vanco). I was on this for a week while my hand/wrist continued to swell and got redder. I saw orthapedics, infectious disease, and a few other doctors. They decided that it needed to be opened up and cleaned out and wanted to take some tissue sample cultures.

They did the surgery and took the cultures. When they opened up my hand/wrist, there was no sign of infection (they had been calling this cellulitis) All of the cultures came back negative. All blood tests were normal.
They did not know what to think. I spent 15 days in the hosp (this time) and went home. A week later my hand started to "flare up" and I was admitted back into the hosp for another 12 days...coming home with a picc and on iv antibiotics. This did not help. We stopped the meds and my hand seemed to be doing better. Now it's been a month since it's "flared up" and all of a sudden, it's back again. I am going to therapy 3 times a week...it's been 3 months since surgery and i still can't make a fist. It is getting more and more stiff, swollen, super sensitive, burning sensations, sharp shooting stabbing pains in my wrist, sweating, my finger nails on that hand grow like mad and it hurts like a sun of a bumble bee!!

My therapist mentioned RSD and I did some research...every single sympton they list...I have in that hand and wrist. I'm not sure where to go from here. My pcp has me on neurontin, but I just started it and it doesn't seem to be doing much of anything. Do I see a neurologist?

Any information would be greatly appriciated!
Thanks in advance

I'm also knew to this board but joined for a singular reason.... I received a coma induced Ketamine treatment 3 weeks ago (two day coma) and am happy to say I am 90-95% pain free. My hopes are that it last a long time. You may also consider procedures such as spinal blocks. In the first few months these have been reported to CURE RSD. Perhaps that's a good route before the coma as that was like going through hell and back for me at the time. Pain meds will help to a degree, but that's a slippery slope as pain meds were not really designed for nerve pain. I've lived with this for four years and my wife has worked at our hospital for 22 years. I was a Flight Manager for for a fighter squadron before I retired and all my Flight Docs work at the hospital. We had friends in very high places running research for us. Unfortunately, RSD tends to be a dumping groud for doctors who cannot figure out what is causing your pain. Therefore good doctors tend to make the diagnosis too late for the spinal block. THERE IS HOPE! I am living proof. Most pain doctors are also anesthesiologists so that is an excellent route to go. Also get in with a therapist (both physical and mental) who deals specifically with RSD patients. Trust me when I say you cannot do this alone. Now you have friends out here who will always be around to solicit advice from or just lend a friendly ear. Be safe my friend and our prayers and thoughts go with you. God Bless and Peace.

General
USAF Retired

[Al1952]

Diagnosed with RSD last August. Comp finally allowed treatment April this year. Did Blocks, made it worse. Cannot lay down. RSD is in left shoulder, arm, hand - now going into back, chest, and right side. Does anyone know of a Doctor who specializes in RSD in Northeast Ohio, who will LISTEN to sypmtoms and pain? Riding in a car is excruciating, so the closer to Canton or Youngstown, the better. Went to "specialst" in Cleveland who after 5 trips , said "well if you can't lay down, I can't help you." Yea - he listened!

[mjl1261]

My husband has RSD in his left hand from sawing through median and ulnar nerves with his table saw. Accident was a year ago tomorrow, as a matter of fact. They grafted nerve from his leg to repair the damage. He had the whole list of symptoms too, except for ultra-sensitivity. Big swings in color and temperature in his fingers, nail and hair growth, terrible burning pain...

He was very lucky that he was diagnosed immediately and they got him into PT and did some blocks. At the time, he didn't think the blocks helped but he is now in at least partial remission so something worked.

I will say that at PT they did tons of passive exercises (which we also did at home every single night) as well as ultrasound to break up the scar tissue. He was on a pile of gabapentin for several months (3600 mg/day) but didn't think it was doing much so he weaned himself off.

He now takes no medication and has no pain. His fingers are still shiny and I think he's stuck with swollen knuckles for the rest of his life, but as long as the pain stays away, who cares?

He does not sit around the house. We live on 2 acres and he is constantly outside "piddling." He runs the weedeater, the lawn mower, used a plate compacter earlier this spring, accidentally ran a hand grinder across his shin. I thought he needed stitches but he brushed that off. He's done dozens of things that I was sure would bring back the symptoms but so far they have stayed away. I worry constantly and don't take a single pain-free day for granted.

There are many on here who have had this syndrome for many many years and are very wise. Based on our own very limited experience, I would say to try to use that hand as much as you can. Squeeze a sponge. Make fists with your opposite hand and copy it with your injured one (mirror therapy). Have someone curl your fingers in for you, if you can stand it. Initially, my husband could barely raise his individual fingers off the table (as in playing a piano). This went on for weeks and weeks but he kept at his exercises. He also soaked his hand in epsom salt every night for 20 minutes (because I made him) for swelling.

The other thing that I strongly encourage is to be your own advocate. You have made a great start by finding this forum. These people know! Better than doctors! But you need to know what all is out there for you so educate yourself. There will be times when you're sure you're at the end of the internet and then something will just pop up. 90% of what I learned, I found on this forum and by Googling different combinations of words. I suggested things to my husband's doctor and made him research them. He was kind and game for anything, but clueless. Straight out of med school! I come back to this forum each day because I have no idea what we'll do if the symptoms come back. This forum is my Continuing Ed!

I wish you all the luck in the world and I hope you will keep us posted.

[keep smilin]

Originally Posted by Al1952

Diagnosed with RSD last August. Comp finally allowed treatment April this year. Did Blocks, made it worse. Cannot lay down. RSD is in left shoulder, arm, hand - now going into back, chest, and right side. Does anyone know of a Doctor who specializes in RSD in Northeast Ohio, who will LISTEN to sypmtoms and pain? Riding in a car is excruciating, so the closer to Canton or Youngstown, the better. Went to "specialst" in Cleveland who after 5 trips , said "well if you can't lay down, I can't help you." Yea - he listened!

I am so sorry for your long ordeal..Much hospital food huh?? I highly recommend just as Ada for you to see a neurologist or a anestisologist.. someone well versed in our disease..in seek of what is happening with you..If it is RSD, which I have had for 3 + years, timing is important..As they can perform blocks and such to possibly relieve you from some of the pain and head for remission. RSD is not nice and we all here live with the battle and meaness of it everyday..So I want to wish you luck on your dx.. please act fast as it will be to your benefit, no matter what you may be suffering from...Please, keep us posted here and allow us to answer any questions you may have along the way...

Hugz, Kathy