Hello all and I'm back with a question about colour changes to the skin.

I've notice that the only time I see color changes is when I have a flare up, (burning, swelling) and with that the palm of my hand turns red. Along side my thumb it gets this blue and red color to it as well as the muscle below my thumb. Another thing I've noticed is that my thumb would sometimes twitch, once it twitched for most of a day, other times only for a while. Once the flare up has calmed down...if there is such a word as calm...the color returns to normal.
Since I've had the ganglion block I haven't had any twitching and that was a little over a month ago.

As far as my skin the hairs on my arm it seems to be just a slightly bit more thicker than the right arm. My finger nails (thumb and last two) have these gooves in them, but so does my left hand (which sometimes it feels like my left hand does).

Temperature in my affected hand, I just took is 94.6F, and the left is 95.1F. My overall body temperature accourding to my thermiter is 98.0. I'm so confused...I know that there is a lot of information out there on the internet, but my case is so complicated that I don't know which end is up.

I've had emg's that proved that I have cubital tunnel in both elbows, more so on the left than the right, possible carpel tunnel in the left wrist, and an MRI that shows in the left side of my neck disc abutment to the canal.

My injury was back in 08 to my left hand and wrist where I had two surgeries with plates and scews in my left ulnat bone and left thumb, the last surgery being the thumb and that was just in Feb of this year. While wearing my cast, which I protected with every inch of my being. I began to sweat and my hand got really swollen and after it was removed. My thumb was really burning and the incision was mascerated and the thin layer of skin that was over it removed. The pain had gotten worse, so much so that I had to have my cast redone at least three times.

Finally once it was removed my skin had gotten in infection from sweating. I was given pain medication, and at that time never knew anything about CRPS so I didn't give those symptoms and thought...silly me! But the pain never went away, only got worse.

My question is this, how long does the sweating last? Is it always there or does it go away and come back? Why does my hands hurt to make a fist, and why does my right hand (unjuried hand) now burn like the left...I'm really confused about this!
I've had two doctors to say I've CRPS, and one to describe my pain as dysesthetic pain, and only the workers comp doctor to change his mind to say that I don't have CRPS! Please advise me as best you can. I don't have health insurance but I am willing to try to pay for a vist to a Neuroradiologist, and another orthopedic surgeon, for their opinion.

I don't have a lot of money, and due to being terminated for lack of Family Medical Leave time, all I have is unemployment and PPD from workers comp to support my family. Workers Comp is fighting me on this CRPS because it would be considered a new case. I just want to get better, or for the most part have some kind of quality of life.

Any advice or insite would be a blessing. Please pray for me...I've already tried to take my life once because I can't take this pain. But I don't feel like taking my life any longer. All I want to do is pray and fight!

Hi Lefty and Welcome back, We are always happy to be of support and comfort to our family of RSDers. We all experience periods of flares and limited calmness. Rsd is a disorder of the sympathetic nervous system-the fight or flight response. Therefore, anxiety, stress, are a part of our symptoms increasing in pain and discoloration of our skin and our skin-body temperature. Our blood pressure, therefore, goes up and down. You can get a machine for about $30 at pharmacy. Most of us are on high blood pressure meds, and the para sympathetic nervous system, causes the pressure to go down, if it goes down far enough, we can pass out (happened to me)
A website that is excellent is rsdrx.com (under puzzles list) it has 150 plus questions and Dr. Hooshmand's answers. It explains how RSD is an autonomic condition, meaning the involuntary organs in our bodies like our heart, lungs, kidneys, bladder, etc are affected. Part of that is our body temperature, going from burning up red hot to ice cold. Also involved is our immune system. Dr. Hooshmand is retired now.
I have had this for 15 years following surgery. I got frozen shoulder following breast tumor surgery. It took a year of physical therapy and massage therapy. but had a year of remission. Then, as they told me, it might go over to the other side. And it did. More physical therapy and massage therapy. Another remission. While water skiing felt nerve pull in hand. Hand was swollen, turned colors, painful, started freezing up-limited range of motion. It's like a claw. The physical therapy got started too late.
This is when I was diagnosed with RSD-4 years following it's beginning. I can't bend my fingers entirely, but can cut my own food, which I'm grateful for now. It's now full body-other hand, both legs, feet, spine, and internal-all major organs. Feel skin temperature is like 105 degrees and inside is hot.
I think a high percentage of us with RSD have thought of suicide at one time or another, but with support from our friends, family, spiritual family and gratefulness of life, resist those feelings. I remember the neurologist that diagnosed me with full body RSD, suggested a psychiatrist. Didn't like the two he suggested and found a wonderful man/Dr. who I have been seeing for 6 years. I don't have insurance either for the past year, but find a way to see him. He is my pain management Dr. Actually he is a Neurologist, Psychiatrist,
Pharmacologist, Internist, continuing education in HBOT, and other fields. You are welcome to ask me about the meds I'm on. I believe I wrote once to you and included that. Anyway, it is the general school of thought, to not have surgical procedures with RSD. Physical Therapy, Massage therapy by educated people is important to keep mobile. Swimming -86 degree temp.
has kept me mobile. Epsom Salt Bathes are good for most of us.
Because it was 4 years when I was diagnosed, I've never had blocks, etc.
Some have been helped with Ketamine infusions. Expensive, but there are free trial studies.
I used to have tremors, electric jolts, jerks, spasms-very violent at times,was on 3200 mg of neurotin- Lyrica is a newer drug for basically same things. They stopped completely. This drug causes weight gain for many, and drowsiness for some. I eventually gradually went off-rarely have any symptoms.
There are medications that help RSD. They work on anxiety, nerve pain, depression-Everyone is different when it come to meds. What works for ne person doesn't work for another.
RSDSA is a national organization for us. By putting in your zip code, you can find help in locating a RSD Dr. and local support group. They also have yearly meetings. The support meetings are wonderful. We have one here in Phoenix, and had the annual meeting last year here in Scottsdale.
You are at a wonderful place for support and compassion. We all need that, and this is exceptional because we truly understand RSD and what it does to our lives. For me it was like losing a loved one in death. The emotional pain of losing our health, things that we loved, like playing tennis, water skiing, snow skiing, traveling, working at a job we loved, playing with our children, even cooking for two days for a big gathering of friends and family. There are many losses and it takes time to absorb that and start concentrating on the things we can do. Being grateful for our life, things we can do, (I just bought a camera) for photography hobby and be able to send pictures thru e-mail. I miss working tremendously, but am going to try this winter to solicit more work by going out an hour or two a couple times a week. We own a coffee business. We've lost some accounts during this recession-depression- and am going to try and get new replacement accounts. We just moved to a house half the size we were in. So there are many changes we adapt to because of the lose of our health. I love our new home, and even more grateful it's paid for. I'm 62 and hubby is 73. We have a wonderful daughter and son in law-31 yrs. that live 5 minutes away.
Lefty, the sweating is one of the 3 major factors of RSD. Skin issues is also another feature for many of us with RSD. Some of us get red skin dots, leisons. Also wanted to mention, keeping a limb casted is not a good thing. we want to keep our limbs mobile, otherwise they become locked. I dailey stretch and exercise so I don't end up in wheelchair, which many are. You many want to check with your Dr. about casting.
Lefty, how do you take your skin temperature????
Lefty, was your injury work related? That is important for litigation and long term financial maintenance. In most states there is 2 years from injury or 2 years from diagnosis to file legal suit. My daughter is a court reporter-did a case on a lady getting RSD.
I am receiving social security, but am going to fight for disability and insurance because of my condition. Besides having RSD, I have fibromyalgia, Post Traumatic Stress Disorder, Trigeminal Nerve Disorder, Ruptured Disc in Neck.
Many attorneys fighting for SSDI do not take upfront money, but after they win the case, take a percentage afterwards.
Please let us know how we can be of support. Take care- one of your new friends, loretta with big hugs

**** I had to apply for social society b/c my long term disability with work told me I had to and show them proof.. Well it only took three months and I was approved. I think everyone could collect if a dr dxs them with RSD/CRPS. Call your local S.S. office and make and apointment but first ask what you will need to bring with you for applying. It wouldnt hurt to check out a s.s. web site. I hate the fact im on it and it almost makes me feel even more depressed about my rsd. The color your talking about sounds like me!! In my left foot up to the knee. The clamy feeling you talked about was what seemed like a year for me. I was dx one year ago this month after having bunion surgery in April 09. I too had screws and wounder how many of us on here have hardware I also had staph infection in my cast.. We are all here if any time you need to talk or vet

Thanks loretta, to answer your questions:

{Lefty, the sweating is one of the 3 major factors of RSD. Skin issues is also another feature for many of us with RSD. Some of us get red skin dots, leisons. Also wanted to mention, keeping a limb casted is not a good thing. we want to keep our limbs mobile, otherwise they become locked. I dailey stretch and exercise so I don't end up in wheelchair, which many are. You many want to check with your Dr. about casting.
Lefty, how do you take your skin temperature????
Lefty, was your injury work related?}

On the subject of casting, and splinting this all was from 08-March 2010. I'm no longer in a cast, or splint.

I took my temp by holding a themomitor in my hand, it seem to work. At the clinic they took it by running a temp probe (the same as they use in the hospital...across your forehead from ear to ear) across the back of both wrist.

My injury is work related, and I do have an attorney working for me.

Loretta early on this I had the sweating on my left hand and forearm. Then after a while it became full body where I had to change my clothes, or night grown. I haven't had any more sweating since the ganglion block.

The only time my skin color changes is during flare-ups. I have notice that from my left forearm and hand is bigger than the right.

I am in Aqua physical therapy, and I see a pain psychologist, and also go to the gym for the warm water work-outs. I just can back from walking around the lake.
Hand began to mildly burn, and swell so I had to cut it short.

As I mention before, this CRPS would be a new case if w/c accepts it. So they are fighting me tooth and nail. This is why on my own, I'm seeing specalist that have dealt with CRPS patients, for their professional opinions.

I did check out RSDSA, and found it helpful. There also was a radio station that feature the founder of RSDSA. I think it was an old broadcast, but I really got a lot out of it. I'm blanking on the guy's name and the radio station. I announcer is a woman with CRPS, but the guy is a social worker, and doesn't have CRPS...just a big heart! You might know who I'm referring to.

Thanks again for all your help, by the way I'm 51 and will be 52 in two months. My injury was in 11/08.

lefty

Hi Lefty, Thanks for the nice letter and information. Is the man's name Jim Broatch. RSDSA had their annual meeting here in Scottsdale AZ a year and half ago. We had over 150 RSDers and Jim was there along with 5 Drs. Scientist in RSD. We do need as much publicity as possible. I did a lot of physical therapy massage therapy and water therapy. Our heated pool saved one foot from freezing up. My toes curled up and didn't touch floor. My Dr. had me in my pool dailey and told me how to squeeze the toes. 4 months and they were touching the floor again. I have one hand that is like a claw-I had been misdiagnosed and delay of pt didn't allow full range of motion. But I can cut my own food, peel potato. I did desensitization which was a life saver.
I know casting is a no no. I didn't know I had RSD for 4 years and after about 50 pt, they wanted to operate and I said no. I was paying for the 50 massage therapy before each pt. I ended up needing another 50 pt treatments. I call my insurance company and told them, I had seen an ortho surgeon at recommendation of the rehab dr. overseeing my pt. I told them I wanted to continue to do the pt and massage therapy. They said, well we pay for pt. but not massage therapy. I said OK your choice, surgery (and I will still need pt after surgery) or pt and massager therapy. He said just a minute-quickly came back and said we would be happy to pay for the pt and massage therapy
It was frozen shoulder that they were trying to get range of motion back following breast surgery for 2 benign tumors. After I was finished with therapy, the therapist said don't be surprised if it goes to other side. I thought that sounded strange, after a year of remission, it did go to other shoulder and had more pt and massage. I feel the massage helped with desensitization.
Hope the best for you. It's been 15 years of RSD and now full body and internal and I'm 62. Just got started on social security, but denied ss disability and insurance. I can't work and get insurance so am going to get attorney for SSDI. I also have fibromyalgia, trigeminal nerve disorder. ruptured disc in neck causing terrible headaches,diverticulitis, and I am going to get tested for Rheumatoid Arthritis-
Take care, your friend, loretta

After your well described list of symptoms there's no doubt you're along for the RSD ride. Now the million dollar question is if it will get worse, stay the same or perhaps burn itself out like around 90% of all RSD cases do within the first 24 months.

Thank goodness we only live life one day at a time because if we knew what was coming up around the corner there might be some days we wouldn't want to take the ride. Meanwhile, just work the problems as they come along the best you can and don't go around driving yourself nuts over the fears of what tomorrow might bring.

Regarding your normal fears about how you'll support yourself long term and how long you'll need to ask for financial help from those who care, all I can say is we've all been there in one way or another. When we're forced into giving up our jobs, I can think of few other moments when I felt lower. Let's face it, most of us live on the income we make. Hopefully you have put a little aside for a rainy day but when I wiped out my retirement account that had a decent balance just so I could keep us above water, it hurt then and still does today. Add to that the sad fact that being a gimp isn't cheap. A set of wheelchair tires for my manual wheelchair are more expensive then they are on my car not to mention all the other health related costs this kind of thing does weigh us down.

Even once you're on SSD, there's still a two year wait till Medicare kicks in and then you'd better have a Medicare supplement ($120 plus a month depending on your age) or you'll find you still can get the medical care you need. Add that with the fact that Medicare far from covers everything and well - the challenges of being handicapped do add up. Every state has some form of Medicaid program and various financial help, but like all things in life, jumping through the hoops can and does take time. If there's nothing else being disabled teaches us, it's patience and humility.

The one thing I advise all is that I firmly believe that we're always able to produce something no matter how much we've lost in body. Please find some kind of volunteer work you can get yourself involved with at some level. It's good for both the mind and soul as you (and me) battle those feelings of not feeling we're worthy of the help we're given by those who care. If you need any help with ideas on how you can keep finding new ways of building a different life than what you had planned, drop me a line and I'll share ways I've found that keep me from going half banana's even when the pain is putting me halfway there.

All the best and remember that we're always a recipient of those same things we share up front. What goes around always comes around. I know you'll do just fine, it's just you're needing to find a new path and new way to walk it. Bob.

Dear Bob - I had no idea that 90% of cases of RSD burn themselves out after 2 years...just wondering where you found this out??

Thanks, Sandy

Lefty, I had similar questions and i have done a lot of research and asking others questions. I have found although RSD/CRPS has specific symptoms not everyone has all or experiences the exact symptoms at the same time. I started with burning, color and temperature change(that comes and goes) but over time it has changed. The cold weather or the cold airconditioning makes me worse. I had swelling that comes and goes where some people seem to have swelling that stays longer and is worse. Medicines have helped prevent a lot of my symptoms (except for burning or aching). For me i have found therapy or water therapy has helped keep my swelling to a minimum. Weight bearing in water has helped me when my toes began to curl under. Since everyone tries different treatments-,meds, therapy, relaxation, biofeedback,mirror therapy ... i think we all experience symptoms differently. What i have found is RSD/CRPS is unpredictable. I use to ask things like-why did mine spread, did i do something wrong but i have found it is just unpredictable if not caught early on. As for w/c if your claim is still open i believe you would have to request a petition to change the description of your injury to include RSD. I am not familiar with what Bob said about 90% burning itself out. I have only read/and been told if caught withing 3-6 months and treated if has a chance to go into remission. momof4

hi...i may be very much out of context here...but you had a history of extensive injury and surgery prior to onset of your symptoms.

well i burnt my hand on a muffin tray 2 weeks ago and was absolutely fine till 1 week back when i developed shooting pain along my right index finger along with intermittent throbbing and mild swelling of finger.its been persistent ..maybe worsening.

i just wanted to know if it could be rsd ?if not how long will nerve damage take to recover.
kindly help me out.thanks

Hi and Welcome,

You should be able to post a new thread to introduce yourself. You kind of get lost in here. I am hoping that you did not get CRPS from your run in with the muffin tray. Burns hurt! And all those little afferent nerves in the skin really hurt when they get burned. Nerves can be very fussy, even a low amount of swelling can affect a digital nerve and make it unhappy. Hopefully, you have a fussy nerve that is just telling you it doesn't like any swelling in your hand. Try not to let it dangle down constantly, maybe try some Epsom salts as a soak (dissolve in warm water but soak in kind of cool for swelling), calendula cream is good for burns and crabby skin and 500mg Vit C daily is good for preventing CRPS to some degree. You may just need another week or so for the burn to calm down.

Failing all that, go see you doctor.
sending Healing Love,
Littlepaw