Hi Momof4,

I hope you Dr. appt. went well on Wed.!!

Keep in mind RSD doesn't act the same for any two of us. It has spread for some of us and I am one of them. Try not to get anxious over you concerns it only makes your pain worse.

My break through pain can be awful my pain is bearable most days. When I am anxious or stressed I can feel the pins and needles increase in severity. When I sit for too long of a time the first few feet of moving are painful then the pain gets better. I try to get up and move around more often to keep from getting stiff and sore.

My shoes hurt my feet. I wear a lot of clogs it depends on where I am going as to which ones I wear. They are easy to slide off and on when my feet start to hurt. If I have been on my feet for too long of a time you can feel the pins, needles and burning take over.
Once I sit down and take off my shoes and socks (if it's colder weather) the pain will increase for a few minuets. However, after resting them the pain will decrease.

I have learned there is a price to pay for what I want to do. I have to ask myself how badly do I want to do something that I know will increase my pain. What steps can I take to lessen my increase in pain? Is there a different way to do something to lessen my pain? Sometimes the answer for me is to take extra pain pills the day before and after I do something that may increase my pain.

Water walking is great exercise and easier to do in the water than on land. We are weightless in the water and for me I don't feel the burning and pins and needles in the water. The cool pool puts the fire out in my skin. Then I move to the theraputic pool the temperature of the water is best for the exercises. I go to my local YMCA.

I wish you the best of luck in finding what works for you to control your pain. I know it's hard and easier said than done. However, try and stay calm anxiety only increases our pain.

Take care of yourself,
Sherrie

Hey there Momof4 I'm dad of 5. I hope there are some answers to your questions here. I personally wouldn't know what I would have done if I didn't find this place when I did. Any way I am also dealing with a jumping spread myself. I have recently found this place call Athletic Republic in our neighborhood which happens to have an endless pool. This thing is great. you can increase the temp to what ever temperture you like and do some walking or you grab the handle, turn on the machine and do some kicking or even swimming at you own pace. Its great u have your own life guard that shows if you are doing things right. You can walk against the current or just walk in the big tub with no one else in it to bump you or kick you. Its a great workout and can be tailored to anyone. I would recommend it for anyone who is looking for a pt alternative. Its really keeping my right leg and foot from atrophy.

Thanx Krank

Mom0f4,
I am so sorry that you are going through this...I can't say what I want to say. I, too have had my crpsII spread very quickly. My original accident was Jan 09 diagnosed in my left foot/ankle in Sept 09 and now it is to the hip where there are days I can't sit at all. I am angry, scared...too many emotions to go through. I just pass you words of encouragement that some time soon the pain will not be there.

Chefsuzz

original-update
 

Thanks to everyone for reading/replying. I went to my pm Dr. He was quite upset-he said yes it is spreading and that when it spreads it may just be the burn, or sensitivity that it doesn't have to be exactly as original area. He changed my narcotic to Oxycontin which I am so against but he said you are chronic and not using it recreationally the most important thing is getting it to stop spreading. He recommends SCS implant(trial went well) but suggested 2nd opinion for other options. Have an appt. with Dr. S beginning of March. My husband thinks i should do the SCS and not wait. Did I mention it is also burning in my other hand-only down hand and ring finger. I feel like i am under the gun-do i take action now or do i wait and risk spread? I have seen psych for relaxation techniques and they are helping. Looking for pool therapy or maybe just YMCA as someone mentioned although i dont think i could get into a cool pool. I am very thankful i have you guys for support. momof4

Hello RN Mom!

You're going to see Dr Schwartzman, in Philly? That's great!
He dx'd me back in 89 or so, after 7 years of nobody knowing.
You sound completely taking the right approach, did you say you were looking for a warm pool? Most all Rehab hospitals have warm pools! Just call,
and find out!

I'm intrigued by what you say about it going down your other hand and ring finger.
I forget what your injury was? How did you acquire this? The reason I ask, is because of what you say about your other hand. I, personally haven't heard rsd to spread that way, you may have TOS (thoracic outlet syndrome), especially if you were in a MVAccident.

This is what I have, rsd/tos from my first accident, and Dr S had it pegged within minutes.

About your meds, it's often wiser to take something stronger, than taking too much of something that doesn't work as well. After meeting Dr. S, I was quickly switched to methadone, and have been with it ever since. I really hope that the Oxy works well for you!
Unfortunately there is no magic wand or cure for what we have.
Keep moving, and smiling.
Cry when you must and rest.
Eat what's good for you, stay away from too much sugar and especially artificial sweeteners.
And, don't feel weak, if you need a psychiatrist. Usually PM doctors that are psychs work well. You must keep your mental health well, with this.

This is a "Managed" disease, not a cured disease. I was taught to think of it as High blood pressure, or Diabetes. Not a broken bone.
It would be wonderful if you could get into remission, and that will/might happen if you do a good job at managing it.

Prayers,

pete

Hi RN
I would ask you Dr his opion,,,if you are receptive to the trial of the scs,,then i personally would procede,,if you are still in smp,,,take avantage,,but if you wait until youve gone into sip,,then the scs will not work,,,My Drs waited too long,the blocks only aggravated my condition[crps 2 causalgia],,,Pray on the matter for guidance,,,go with your inner feeling,,,,in one aspect,,march is a long time away when were talking about the window of reversal,,,early aggresvise treatment is imperative,,,,,,,,,,,I wish you well,,may the lord guide you,,,,,,,bobber

We are all different for me the cool pool helps with the burning. My RSD is full body. The Y also has a therapuetic pool that is great for getting the muscles to lossen up. I can't remember the temperature of the pool they can tell you at the front desk. The therapuetic pool is used for the arthritis classes.
I went to see Dr. S in Philly several times. His knowledge of RSD is so comforting. Even though I don't have any future planned appointments. He is a great source of information. When I have questions I call him and if he doesn't return the call one of his nurse will. Call his office for an opinion on your SCS being implanted.
I ask God for directions with my medical care. Prayer is a must in my routine for care.
Take care,
Sherrie

Also, with Dr. S.
If you let his office know you're early on, and are looking if possible for a cancellation, they'll usually try to work that out for you, if they can!
Are you near the Philly area? (I see Dr Knobler, in Ft. Washington, who used to be Dr. S's partner. They are good friends.)
I'm not suggesting one over the other, I"m sure you waited for Dr. S for a while. But, if you're close to the area, Dr Knobler is surely as excellent choice.
I've been with them both since 89 or so..(rsd memory)...

Wishin' and hopin' for the best!

pete

what brand scs do you have? where did they implant the generator?

Sandy, i just purchased the fur crocs and they are great. They feel so good and lite on my feet. ? Although mine has spread to me feet- they burn & ache but i have no swelling. Did you always have swelling? I have always walked but it is getting harder.