Hi from Pepper
 

Hi, I am new so please bear with me, I was shocked to actually read that someone else's RSD itches like mine..at least I know I'm not losing it...so far I only have the RSD rash on my right foot and half way up my leg but my knees have the pain along with my foot and leg...I have heard this can spread to your whole body but did it start like in your foot and spread?? I've only been diagnosed for about 6 months so I hope I don't sound dumb but I really have a lot of questions because my doctors don't really know that much about it and I can't find one that does. Thanks for making me feel welcome...:grouphug:

Hi Pepper,
 

Welcome.

It takes time to find the right Dr. that can dive in and help with the RSD. For me it turned out to be my PCP. After seeing several PM's, Neurologist and other Drs. that knew what it was and didn't know how to calm the pain down then my Dr. said he'd do it. It's like driving a road that seems like there is no end to it at times. When you do get there though you will be amazed at how far you've came with it. It took us about 8 years to get mine calmed down.

Have you had any blocks done? They help a lot of people.

It does spread. Mine started in my right arm and hand and I has spread. I should say too, I have other medical issues along with the RSD so that may be why it took me longer. A lot of people seem to get better as soon as they hit on the right Dr. and the right treatment.

As far as the itching, I haven't had that except from meds. Some meds will make you itch.

You don't sound dumb. Learning about RSD is a work in progress.

There will be others that will help you with this.

Ada

Hi there! Please do not ever apologize for having questions or for being new at this. We were ALL there at one time and there is no question that is not a valid one. I have only had RSD for 3 months now. It started in my left foot after surgery and has already spread from the top of that foot, to the right foot, to the bottoms of my feet, to both hands, and is spreading up both legs. Mine does itch sometimes.....like a sunburn.......but it HURTS to scratch it (so I try not to).

I use Aveeno bath powder or Aveeno lotion to soothe it. It has natural colloidal oatmeal in it that forms a protective film on your skin. The bath powder can also be used in leiu of soap for when your skin is extra dry......just soak for about 20 minutes (check very carefully the temperature of the water.....or use a bath thermometer......many times we cannot "feel" temperature accurately with RSD). It turns the water a kind of muddy gray color, but it FEELS so good......and it is totally fragrance free which helps me because I'm super sensitive to smells with my RSD. I have found that sifting it before adding it to the water helps it dissolve better (it tends to clump) and the name brand clumps less than the generic (but both will work adequately).

It is not uncommon, unfortunately, for doctors to be uninformed about RSD. It is fairly rare, but not so much so that the medical profession shouldn't be educated about it. We all have had to take our care into our own hands, to some degree, being very proactive to learn as much as we can (from forums and from internet research) because docs aren't going to spend as much time learning about it as we are.

I do not have a rash with my RSD.....just color changes, so I feel certain that someone else can help you with that specific question. I would be careful that the rash is not actually lesions or ulcers that can sometimes accompany RSD. There are several sites that have photos of RSD......probably on this forum for starters. Try an internet search on "RSD skin lesion photos" and see if pictures match your own. There are specific treatments for those (and they are notoriously hard to treat due to our poor healing) though sometimes they heal spontaneously.

I am so sorry your RSD is spreading so quickly. Believe me, I totally understand how scary it is. There is no "normal" for this disease. It does what it wants to do and goes where it wants to go. Please keep asking questions. We are like a family here and will help however we can. You can PM me any time as well if you want to talk to someone privately. Our RSD seems to have started in a very similar fashion.

Best wishes to you. Please keep us posted!! Hope to hear from you soon!!!

Hi Pepper
My RSD started in my foot as well and spread up my leg to right above my knee within a 5 month period. I also have the itching which can drive me bonkers at times. Following my first nerve block the spread stopped and it's been 3 years now and I haven't had any further spread. It seems that you have been diagnosed early so you have a good chance of getting better. Have you had Physical therapy yet? They usually start with that. Also, there is a post on this forum from a few days ago that talks about a doctor in florida that treats RSD. His name is Dr. Hashmi. Some of the folks on this forum have gone to him . If you google his name you will find his site.Hope this helps you a little bit. Never be afraid to ask questions. That's how we all learn.....Jeannie

Hi, thanks for the reply
 

:)Hi, how long have you had RSD? Did it start from surgery?

Hi,
 

Mine came out with TOS surgery around 2000. I had 3 blocks that helped put it back into remission and then had Rotator Cuff Surgery that brought it back out again.

I fell several times and messed up my left arm and ended up with the TOS and then ended up with it worse on the right side. I had right side TOS surgery.

I have learned to ask for blocks before every surgery. So far they have worked.

I have had blocks, triggerpoint injections, PT with some very good PT'ers. i was on Methadone for over 5 years and lidocaine patches. I also have 3 heating pads, I had 2 tens units, and hand braces and elbow braces and a shoulderbrace. Almost 4 years of it. I did have TOS, Fibro, RSD, Back problems, neck problems, and several other things going on though. That's why I spent so long in PT.

I laid in bed last night thinking again about how far I have come. Had it not been for my PCP and PA I wouldn't be here today. I have no doubt on that one. I also have some amazing friends from the forums that I made years ago and have helped me immensly.

It takes a lot of support and as I said some good Drs.

You can get better with RSD. I have seen that from the friends I have from the forums. We came a long way together.

Don't give up. You will learn a lot here to help you make some good decisions on what kind of help to get. Just read up on any advice you get from here also and make sure it will work for you.

Ada

I went to the U of Co where they experimented with me. Even though they knew what was going on, they didn't know what to do for it.

Hi
 

Hi, I just wanted to welcome you and let you know that I'm sure you will find supportive people here. Please feel free to ask any questions that you may have. I was diagnosed in 1989 with an injury and spread after surgery. I now have Full body CRPS. I will tell you from the beginning that we all react and respond differently to the treatments. Even though we may share our experiences , some will be different and some symptoms may be the same. I do itch sometimes as well, it is like a sunburn and it feels bruised, or just very painful if I scratch.
After 20 years, I still experience pin pricks, bone crushing pain, spasms, weakness and burning (flaming pain). There is also times when my extremities are so cold, then it turns to burning pain.
You will find a lot of information here that can be useful. You will also find a group that support, care, and even may become some of your best friends.
As I say "You are in Good Company Here". Welcome, Di

hi and welcome
never think that you cant answer question. with rsd you have to do alot of research and know whats goin on.!! that is my first advice to you .i am glad that they caught your rsd year i know that there are a couple good doctors in florida like jeannie said. there are alot of good rsd sites as well.
start asking away. i have had rsd for 11yrs and im still learning things. my rsd is full body basicly head to toe and internally. hang in there and we are here to help or just shoot the breeze if you want

hope to talk soon
carrie

Hi from Pepper
 

Hi, did you get RSD from surgery? I have had Physical therapy but stopped after 1 month, too painful...didn't help anyway...he has taken fluid off my knee 4 times. VERY painful and I've had cortisone shots...nothing helped so far...I did google Dr Hashmi and he is about 3 hours from me..I have stopped driving because of my foot, I can't move it, and I really can't ask someone to drive me that far...have you heard of any other doctors in Fla. I live near Tampa...I haven't found one yet...

Hi Pepper,
The RSD/CRPS Treatment Center is located in Tampa Florida. It is run by Dr. Kirkpatrick. Just type this info into your search engine and you will find his site. I don't know much about it but I think some of the folks on here have been to see him.
My RSD is from a fall that resulted in a broken ankle, torn ligaments and tendons. Let me know how you make out...Jeannie

Hi from Pepper-Dr Kirkpatrick
 

Hi, I did call Dr. Kirkpatrick's office today, it is $500.00 for the first visit, the treatment is a 3 time treatment..$2500.00 each time..they don't take any insurance because it is a research center...it sounds great if I could afford it, but it was worth a phone call...thank you..

Hi Pepper,
If that doesn't work for you than another option is to look for a pain management doctor in your area. They usually do take insurance. Many can be found through your area hospitals. Also, try to type in pain clinics in Tampa on your search engine. You should be able to come up with something. I'm curious....what type of treatment was Dr Kirkpatrick going to do that cost $2500. I've had the nerve blocks which were $1400 each (covered by insurance) Would the office give you the paperwork to send in to your insurance company so you can be reimbursed? Also, he might accept a payment plan. It doesn't hurt to ask. Just an idea. Either way, I hope you find someone soon. The sooner you get treated the better your chances. Also, your primary care doctor should know of any pain management docotrs in the area. Give him a try as well. Keep me posted....Jeannie

Hello and Welcome to Neurotalk, Pepper!! I am so sorry that I am a bit late in Welcoming you - I have been on Vacation and am pretty flared up at the moment but I do hope that you have been finding everything OK and that you have gained some useful information!! Everyone is really nice here so don't be afraid to ask any questions you may have - we are all here for you and will help you if we can!!!

I am so sorry to hear that you also suffer from RSD and I really hope you can find something that will help you and relieve your symptoms real soon!!:hug: I have RSD in my left leg and right arm and possibly left arm also - I developed it when I was 12 years old after an ankle sprain and am now 14.

I also get the itching and rash that you described. I mentioned it to my Pain Management Doctor and he said that it was a fairly common symptom of RSD, although not everyone gets it. It is really difficult to describe how it feels - the only way I can describe it is as though you have been bitten in a million places by an insect and then you have some creepy crawly walking all over you.

Have you tried Anti-Isthemines (sp?)? When I spoke about the itching to my Doctor, he said that Anti-Isthemines might help. I did try some and they helped a little so that might be something to look into. Also, look at the side-effects of your medications as certain meds can cause itching - I know Ketamine does for me!!!

Are you seeing a Pain Management Doctor at the moment?? They are usually the best doctor for treating and diagnosing RSD and are the doctors that most RSD'ers see. It is really important that you see a doctor who knows about RSD and actually listens to you so if you aren't happy with your current doctor, please go and see another one - I know it can be really stressful and might take time but it will be worth it in the end!!

If you are having Physical Therapy, please do NOT give up on it straight away!!!!! I know that it is really painful but it is extremely important that you keep your RSD limb moving as much as possible!!!! I have had PT for nearly 2 years now and for the first 18 months, it wasn't working at all but my PT's explained that it would hopefully stop me from getting any worse than I already was. In September last year, I went onto an Intense PT Program and it was the hardest and most painful thing I have ever had to do BUT in the end, it did help and I can now walk short distances unaided - I still deal with a LOT of pain on a daily basis but the PT helped me regain some function and become more independant.

I'm thinking about you and hope you feel better soon. If you need anything, please know that I am here for you because I DO understand what you are going through!!!

Hi from Pepper=itching
 

Hi, thanks for the welcome...I didn't give up on the PT, the therapist did, he just said it wasn't helping, I did get aveeno body wash to try..I take 2 anti-histamines...today has been pretty good so far except for my head itching...this morning I took a prednisone and a benadryl..maybe it will work...I can walk for about 5 minutes and my back hurts REALLY bad so I have to sit down so I do everything in 5 minutes intervels...I do have a scooter I just bought so at least I can so out with the dogs once a day...you sound like you have it much worse than me and you are young...hopefully you will feel a lot better soon...Me