Quote:
Originally Posted by lefty
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!
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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
