[loretta]

[QUOTE=babydoll;319884]

Originally Posted by RSD_Angel

HI there,

I have been going nuts with this and its only getting worse... I have this "rash" but it doesnt look or feel like a rash, and it looks like bad dry skin but its not dry at all. very soft.. but this hurts like H3^* and wondering if any of you other RSDers have this.. dont knw if its like a nerve rash or?? this Rash is every where that ihave RSD.. and thats it.. it goes up my leg in the same pattern and in to the other thigh. it avoids where i dont have RSD.... any ideas?

I am gonna post pics soo be forwarned..lol I have tried to put evrything on it , from lubriderm fragrence free and alcholol free and just plain aloe, but everthign makes it worse and it burns like somthing fierce!! HELP!!!!!!!!!!!!!!m Thanks guys !! ,



hI there, I know your post is old but I have had that ...skin just flaking off, my RSD is in my right hand it seems to happen every so often I think they call it Nuro dermitis, I find that taking a warm bath with epson salts has helped.

Hi Babydoll, For some reason, skin problems go along with RSD. I, too, have rashes, red spots with itch, some turn to a permenant brownish mole. I use neosporin, clear lotion for poison ivy, women's personal lotion., None of them burn or make it worse. baths with epson salt help. I don't have alloydonia, so I use a fan by my bed to keep from sweating and getting too warm. RSD affect circulation, body temperature. I have both the burning and the cold to the bone RSD. High and low blood pressure. Hope this helps. Take care, Loretta

[deb115]

[QUOTE=RSD_Angel;111021]HI there,

I have been going nuts with this and its only getting worse... I have this "rash" but it doesnt look or feel like a rash, and it looks like bad dry skin but its not dry at all. very soft.. but this hurts like H3^* and wondering if any of you other RSDers have this.. dont knw if its like a nerve rash or?? this Rash is every where that ihave RSD.. and thats it.. it goes up my leg in the same pattern and in to the other thigh. it avoids where i dont have RSD.... any ideas?

I am gonna post pics soo be forwarned..lol I have tried to put evrything on it , from lubriderm fragrence free and alcholol free and just plain aloe, but everthign makes it worse and it burns like somthing fierce!! HELP!!!!!!!!!!!!!!m Thanks guys !!


Hi there,
My name is Deb,and I have had CRPS/RSd for over a yr now on my left leg and I just found this site today. This is the first time I have seen others with my rash.The one I am currently getting looks like the one in this picture you have.Even my specialists has not seen the rash ever. Yours is almost the same as mine. I am going to put up a pic if I can. I was just prescribed a spray for it by my pain management DR it is Ketamine,lidocaine, MSM and tera hydrochloride. YOu should ask for it as it healed,& helped my 3rd rash almost before my eyes it was a miracle really. I can't figure out how to do a picture can someone explain it to me?? PLease and many thanks. Deb

[deb115]

Hi all~
I have it RSD/CRPS in my left leg and I believe it is starting to spread to my right as I have had the rash outbreak there once. I had a spinal fusion in April 07 on L5-S1 and it developed last yr after 16 weeks of PT where I was improving steadily then slowly got progressively worse. Lots of constant nerve pain for a long time mistaken as sciatic pain. It was not until I started with changes in skin,temp and the rash that they suspected CRPS. I have had 4 outbreaks with lesions in just over 2 months now and they just started to give me the spray which works wonders. I do have extreme Allyondnia (sp) so I can't have a fan, clothing,shoes etc or anything on that leg or foot. I have had severe reactions to both Neurontin and Lyrica. I am currently taking Topamax for the nerve pain and Narcotics as I do not sleep at all or for more then a few hours at a time.The pain keeps me awake. I am seeing a specialist in my area for this finally after a year. This is a workers comp issue and I am currently waiting on approval for nerve blocks etc, Even though they say I am far too advanced for them. I am also going to do a trial for a spinal stimulator. I am willing to try whatever at this point.My understanding is it should have been done last yr,as I am pretty far advanced now.I can't even stand loud noises anymore without pain. Thanks and seeing all the photos here I no longer feel alone.I would like to learn how to post photos here though if anyone can tell.Thanks in Advance.
How do you deal with full body RSD??? I can't imagine it!! Wow!!!!!

[loretta]

Hi Deb115,
I'm so happy you found this site. You will find a lot of answers to your questions and comfort. I'd like to encourage you to read on this forum as much as you can. It was 4-5 years before I was correctly diagnosed, so I didn't have the blocks. Some here have had the SCS and some haven't. Everyone reacts differently to meds and procedures, so would like to encourage you to check it out first. I was on 3200 mg of Neurotin for some time, then changed to Lyrica after it was out for over a year. Lyrica works better for me, pain wise and doesn't seem to keep me snowed under. I've asked my Dr. about a cream, for my feet and hands with same ingredients as your spray. He is checking it out. Do you have a compounding pharmacy make it? Both feet and hands really BURN!.
I don't know how to show pictures? Sorry.
I saw my Dr. Monday and asked him about getting my brown moles from the red dot rashes removed. He said no, even that procedure could make the RSD worse and spread. Even his malpractice insurance wouldn't allow it. Did your surgeon have insurance including RSD as a complication of your surgery. My daughter is a court reporter and has done depositions on RSD as a result of surgery. I don't think years ago insurance companies were as aware of RSD complications.
Try to keep relaxed and stress out of your life as much as possible. I use music, meditation, prayer, comedy, stretching, massages, and anything I can think of. I do take one anti-anxiety pill.
And I have full body RSD and the moles everywhere. The rashes and red dots are everywhere and some of them then turn to a brownish-grayish raised mole. My Dr. is a Neurologist, Pharmacologist, and Psychiatrist. He just opened 3 offices for skin procedures.
Sleep is a big problem for a lot of us. A couple of nights ago, I was awake all night till 9:30 the next morning. Those kind of nights are awful aren't they. I do try to make my sleep time regular and try not to nap during the day if possible so I can keep a routine going. Anyone have any ideas?
Deb, do you suffer from depression? Most of us do, not just because of our losses and change in our life, but it's part of the disorder. Anti-depressants help with nerve pain is why I ask. Let us know how you are doing?Loretta

[hutch0024]

Forever Pain

I have seen the darkness and the light
Lord help me fight this with all my might
The endless days of pain
Leave me wondering what this life has to gain
Then I look into my daughters eyes
I realize I do not have to die
The thought sadly has crossed my mind
But ones suicide is forever unkind
It leaves a scar on the heart of those you love
Choosing life is soaring with wings of a dove
Wish for freedom for all that suffer from this fire
For the future has never seemed quite as dire
Hence now Lord above
Answer the prayers of each and every one you love

Robert A. Hutchinson ©2008

Originally Posted by DDayMBB

Have been DX with TOS and somewhere along the line CRPS, the cold make my hands burn so, that even during mid summer have to wear gloves in the frozen food section. The other day was out for a walk in the woods, when I got done with my walk, I removed gloves (they were not insulated,but fairly warm any way) and as usual my fingers were one fire, thoough I was left with bue/purple blanching almost like a bruise. Was wondering if anybody elses' fingers look like this, fro the cold???

[loretta]

Hi Hutch, yes, I have the same blue purple motley coloring, can't stand the cold, I wrap a cold glass with a paper towel and use gloves in and out of the house, soft cashmere gloves. The poem is so true and writtin with such insight as only one has that is going thru such suffering. Thinking of others and not our pain in the only way to survive.
I'm grateful for so many things and people in my life. Even those that don't seem to understand aren't as compassionate as I would like. I'm sure it's difficult for them to understand what we are goiong thru. Best wishes, Loretta

[Coerley]

Originally Posted by loretta jewell

Hi Deb115,
I'm so happy you found this site. You will find a lot of answers to your questions and comfort. I'd like to encourage you to read on this forum as much as you can. It was 4-5 years before I was correctly diagnosed, so I didn't have the blocks. Some here have had the SCS and some haven't. Everyone reacts differently to meds and procedures, so would like to encourage you to check it out first. I was on 3200 mg of Neurotin for some time, then changed to Lyrica after it was out for over a year. Lyrica works better for me, pain wise and doesn't seem to keep me snowed under. I've asked my Dr. about a cream, for my feet and hands with same ingredients as your spray. He is checking it out. Do you have a compounding pharmacy make it? Both feet and hands really BURN!.
I don't know how to show pictures? Sorry.
I saw my Dr. Monday and asked him about getting my brown moles from the red dot rashes removed. He said no, even that procedure could make the RSD worse and spread. Even his malpractice insurance wouldn't allow it. Did your surgeon have insurance including RSD as a complication of your surgery. My daughter is a court reporter and has done depositions on RSD as a result of surgery. I don't think years ago insurance companies were as aware of RSD complications.
Try to keep relaxed and stress out of your life as much as possible. I use music, meditation, prayer, comedy, stretching, massages, and anything I can think of. I do take one anti-anxiety pill.
And I have full body RSD and the moles everywhere. The rashes and red dots are everywhere and some of them then turn to a brownish-grayish raised mole. My Dr. is a Neurologist, Pharmacologist, and Psychiatrist. He just opened 3 offices for skin procedures.
Sleep is a big problem for a lot of us. A couple of nights ago, I was awake all night till 9:30 the next morning. Those kind of nights are awful aren't they. I do try to make my sleep time regular and try not to nap during the day if possible so I can keep a routine going. Anyone have any ideas?
Deb, do you suffer from depression? Most of us do, not just because of our losses and change in our life, but it's part of the disorder. Anti-depressants help with nerve pain is why I ask. Let us know how you are doing?Loretta

Hey Loretta, I just joined NeuroTalk and was happy reading your message. I want to say that I have RSD in my hands and hip. My heart goes out to those of you that have it all over their bodies. I cannot imagine what that is like. I also, wanted to state that I keep sane and out of depression by working. I can only work 2 1/2 hours a day, but I am a kindergarten para-professional. The kids keep me going. Along with my family. I will keep you in my prayers.

[loretta]

Hi Sue,

Thank you so much for the encouragement. I'm so happy you have the kids for 2 1/2 hrs. to keep you going. Our one and only daughter is 29. I loved being a mother, volunteered for school thru grade school, field trips, middle school my husband I took a parenting communication class, I took it twice, became friends with the school couselor and kept in touch thru high school, then we moved away for college and ended up living in another state. Just called the counselor a couple months ago. I'm happy you are able to be with your kids, although I'm sure some days are very difficult.

My Dr. and I are doing research into HBOT for RSD. He is very positive about it's function for RSD, getting 100% oxygen to tips of hands and feet and throughout body. He's ordered one for each of his newtwo clinics. It also speeds healing for various procedures.
It's rare to find them outside of hospitals. I'm hoping my insurance covers treatment., If not, we'll have to sell more coffee,'Starbucks, Seattle's Best, Tully's etc. We sell to businesses smile. Only problem i'm getting too sick to go out and sell. We've just hired a salesperson to do that for us.

Take care, and please let us know how you are getting along, we care Loretta Jewell

[GoTimothy]

Originally Posted by RSD_Angel

HI there,

I have been going nuts with this and its only getting worse... I have this "rash" but it doesn't look or feel like a rash, and it looks like bad dry skin but its not dry at all. very soft.. but this hurts like H3^*

I HAVE THAT ON MY LEGS, BUT NOT AS BAD. My doctor said it was psoriasis, but I don't think so. I thought it was caused by my
stellate ganglion block that I had in 1993. You might not have noticed the hair loss on the legs like I notice. I had hairy legs, but now there are bald spots on them. I live in Michigan and It gets worse when it starts to get cold. I have to put tons of lotion on three or four times a day. I use the cheep stuff, Suave Skin Therapy. But after winter starts I don't need so much and in spring none at all. The legs itch like hell, but I know better not to scratch. Yours looks like your using oil which makes them soft but that made mine worse. The oil does not allow the skin to breath. Try a different lotion. Was wondering where you live. I am thinking moving to where it does not get so cold.

[sue barbour]

my rsd is sharp pain no rash no swelling and some pain in my arm,RSD is new to me took 2 doc to find out what was wrong after shoulder surgery,is any one in the same boat as me