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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Who to go to for RSD treatment?

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Unread 10-03-2009, 06:37 PM   #1
WolfLarsen
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Default Who to go to for RSD treatment?

I was diagnosed with RSD by a foot & ankle specialist. He first tried some simple physical therapy treatments but it hasn't worked yet so I'm wondering what course I should persue next.

It sounded like I should go to a neurologist, who then might refer me to a pain clinic, with anesthesiologists specialising in pain management. I'm curious to hear what advice others might have on this- on who to see and what treatments are worth considering, etc.

I want to keep costs down- I don't have insurance or a job right now- but I also want to get this cured.

Also, whats the best way to find specialists who are sufficiently knowledgeable about this? It seems to be pretty critical with RSD. This went undiagnosed for months until I finally found someone who figured out what it was- my primary care guy ranted about how I was a hypochondriac and wasting his time.

Right now I live 50 miles from Sioux Falls, SD, but staying with relatives is an option- I have some that live about 90 miles from the Mayo Clinic.

Anyway, any advice anyone has is surely appreciated!

If anyone's curious this is kind of where my RSD is at right now:
My RSD by the sound of it seems less severe than may cases. Its mainly very weird about temperature. If it gets below the low-mid 80s I have to bundle my foot heavily to keep it warm, and it tends to become very stiff and immobile. But if it gets too warm, which is pretty frequent, it gets red and inflamed and very uncomfortably hot. I wouldn't say it hurts much except if its really too hot (burning) or too cold (aching), although its extremely touchy and easy to injure by overexertion or walking on it when stiff, etc.

I had been able to walk on it pretty well until recently a physical therapist did some ill-advised stuff to it and messed it up so bad I was crutches only for a week, which was apparently enough for the RSD to worsen dramatically just from inactivity and I now find my foot so stiffened and touchy that more than a few steps walking on it seems risky. It also abruptly spread to my other foot, which I had slightly injured, and for awhile I was getting an exaggerated pain sensation in addition to hot and cold, although its tapering off a bit now.
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Unread 10-03-2009, 07:55 PM   #2
Mslday
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Dear WolfLarson,

First I'm very sorry to hear that you have been diagnosed with RSD. Please go to http://www.rsdsa.org This is one of the best resources out there for RSD patients especially if you are in the US. If you contact them directly they should be able to give you the referral information for doctors in your area that specialize in treating RSD or as you suggested at the Mayo clinic.

How long has it been since you developed the RSD? The reason I ask is that it is very important for you to get help as soon as possible. Please don't delay as time is of the essence.

Your symptoms sound just like mine when I first developed RSD in my left foot. Keep it warm, which means some times you'll need to dress like it's the middle of winter even when it's not. Keep it moving as much as possible. If you can't bear any weight simple gentle range of motion exercises can do wonders as can hydro therapy (going to a warm pool). Try as hard as you possibly can to desensitize your foot, use things like a paint brush or a feather to apply to the sensitive areas. I use an exfoliation glove that can be picked up at a drug store in the bath section. You can adjust the pressure as you're able to tolerate and work up to more touching and self massage. Stay connected to your foot.

Try some Arnica gel, you can get it from a natural heath store, arnica helps with pain, swelling and bruising, I like it particularly when my foot gets too hot and swollen. It helps calm it down. (don't put it on an open wound)

If money is a concern personally I'd skip the neurologist and head straight for the Anesthesiologist that specializes in Pain Management. He/she should be able to offer you the all the treatments that are appropriate for you, medicines, nerve blocks etc...

Welcome to the forum, you will find many people here who have a great depth of knowledge and compassion.

Good Luck.

MsL
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Unread 10-04-2009, 12:07 AM   #3
hope4thebest
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Hi Wolf,
I am sorry you are facing the challenge of RSD in your foot and possibly both feet. The mobility factor is a frustrating one..I too have lower limb RSD with symptoms and patterns very similar to yours..in addition to the burning, though, I have extreme pain in the left foot due to injury/surgery..

I agree with Mslday to go the a pain management doc first but be sure he/she is also an anasthesiologist..as the doc will have expertise in all possible modalities (blocks, trigger point injections if appropriate, meds, etc)

I would research first though to be sure your choice of doctor is well versed and experienced with RSD/CRPS...

Go to your appointment as educated as possible so that you will have familiarity with the options your doc provides..you'll wnat to be informed so that you can make wise decisions about his recommendations.
for the stiffness, warm epsom salts soaks are soothing and therapeutic and a good place to do gentle range of motion exercises to loosen up the foot.
Warm water therapy pool is an excellent way to walk with less pain because of the weightlessness in the water.
It's good to meet you, Wolf! I have found information, support and understanding on this board and I hope you will too!
Hope4thebest
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Unread 10-04-2009, 05:02 AM   #4
fmichael
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Wolf -

I'm in complete agreement with both Mslday and hope4thebest that time is truely of the essence with a fresh case of RSD/CRPS. There are treatment options in the first six months (to maybe a year) of the disease that simply don't exist later on.

But as to locations, the webpage of the Sanford/USD Medical Center in Sioux Falls indicates that while it has a "back pain clinic" there doesn't appear to be a more comprehensive pain management service that would treat RSD. Here's their webpage http://www.sanfordhealth.org/ and you can give them a call.

As to the Mayo Clinic, having grown up in Rochester, I know from personal experience that their pain management group does not want to treat "out of town" RSD patients who they can't follow up with on a regular basis. (I learned this as an "out of town" patient with RSD, even though I was staying at with my parents at their home a few blocks away while I was going through the Clinic.) That said, they see a lot of patients, as I know does UCLA in Los Angeles where I now live, through a series of wholly owned feeder clinics, something called the Mayo Health System, with facilities stetching as far west as Lamberton MN. http://www.mayohealthsystem.org/mhs/live/page.cfm If that would be an option for you, you could then be treated in Rochester and followed up through a local clinic, assuming you live in Western Minnesota.

As far as financial assistance, the Mayo Clinic traditionally is very supportive, so long as you have first applied for public medical assistance. (And I suspect that the USD Medical Center operates under the same general rules.) Accordingly, I would make your first order of business on Monday morning calling your county social services department to find out what programs you can qualify for. Please be aware, however, of the following information form a Mayo Clinic websites, which is almost certsinly applicable to other health care providers as well:
Medical Assistance (Medicaid)

Iowa, Minnesota, Montana, Nebraska, North Dakota, South Dakota, and Wisconsin and MinnesotaCare

Mayo Clinic, Saint Marys Hospital and Rochester Methodist Hospital participate with the state Medicaid programs of Iowa, Minnesota, Montana, Nebraska, North Dakota, South Dakota and Wisconsin and the state-sponsored program, MinnesotaCare. This participation allows Mayo Clinic to provide services to and bill for patients from these states, with some restrictions. MinnesotaCare and most of the Medical Assistance programs require that some services have prior authorization before payment is allowed. In addition, MinnesotaCare and the Medical Assistance programs typically provide coverage through a managed care health plan. If your coverage is through a managed care plan, you will need an approved referral from the health plan to receive coverage at Mayo Clinic. We recommend checking with your state's Medicaid office or your managed care health plan to verify your health plan's requirements and see that the necessary authorization and/or referrals are completed before your appointment. A pre-service deposit of the estimated charges will be required for unauthorized services. Please call 507-284-4366 with questions.
http://www.mayoclinic.org/billing-rst/#assistance

Finally, this page contains information regarding the Mayo Clinic's policy on "Charity Care": http://www.mayoclinic.org/billing-rs...cialassistance

Good luck. Let us know whenever you think there is any more information we might be able to provide.

Mike
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Unread 10-04-2009, 02:23 PM   #5
bobber
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Hi Wolf
Im sorry to hear about your situation,,I do think hopping over to a painmed dr is a good idea,,but if he wants to run nerve blocks in the back,,their exspensive and theres no guarentee that he wont either miss or need a series[and they are exspensive ,about up 1,600 a pop] and he will want to run an EMG,,thats expensive,,and I dont know how far gone in rsd you are but if you are in SIP then the nerve blocks will more than likely inflame the rsd,,but if your still in SMP then it will calm it down,,,You have a small window to get a higher % of a remmission if treated early,,and finding a good pain med dr;is hard to find as well,,I also highly recommend activity,,I as others use a swimming pool,,I aqua jog,,activity pushes rsd backwards into a remmission or at least keeps it at bay until you get treatment,,I also found that you want to desensitize the affected area by not only touch,,but [like swimming] it also desensitizes tempature changes to the affected limb,,so now my legs are not painfull or affected by cold or hot water due to the pool theropy and then shower rinsing after in warmer water to knock off the clorine,,,,you also need to find out if you have rsd 1 or 2 ,,two is causalgia ,which means youve got a trapped nerve,,and if thats the case ,,the rsd will spread rapidlly...if you need anything,,holler and ask away,,I will lift you up in prayer,,,,,,,,,,bobber
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Unread 10-04-2009, 04:44 PM   #6
loretta
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Quote:
Originally Posted by WolfLarsen View Post
I was diagnosed with RSD by a foot & ankle specialist. He first tried some simple physical therapy treatments but it hasn't worked yet so I'm wondering what course I should persue next.

It sounded like I should go to a neurologist, who then might refer me to a pain clinic, with anesthesiologists specialising in pain management. I'm curious to hear what advice others might have on this- on who to see and what treatments are worth considering, etc.

I want to keep costs down- I don't have insurance or a job right now- but I also want to get this cured.

Also, whats the best way to find specialists who are sufficiently knowledgeable about this? It seems to be pretty critical with RSD. This went undiagnosed for months until I finally found someone who figured out what it was- my primary care guy ranted about how I was a hypochondriac and wasting his time.

Right now I live 50 miles from Sioux Falls, SD, but staying with relatives is an option- I have some that live about 90 miles from the Mayo Clinic.

Anyway, any advice anyone has is surely appreciated!

If anyone's curious this is kind of where my RSD is at right now:
My RSD by the sound of it seems less severe than may cases. Its mainly very weird about temperature. If it gets below the low-mid 80s I have to bundle my foot heavily to keep it warm, and it tends to become very stiff and immobile. But if it gets too warm, which is pretty frequent, it gets red and inflamed and very uncomfortably hot. I wouldn't say it hurts much except if its really too hot (burning) or too cold (aching), although its extremely touchy and easy to injure by overexertion or walking on it when stiff, etc.

I had been able to walk on it pretty well until recently a physical therapist did some ill-advised stuff to it and messed it up so bad I was crutches only for a week, which was apparently enough for the RSD to worsen dramatically just from inactivity and I now find my foot so stiffened and touchy that more than a few steps walking on it seems risky. It also abruptly spread to my other foot, which I had slightly injured, and for awhile I was getting an exaggerated pain sensation in addition to hot and cold, although its tapering off a bit now.
Hi Wolf and Welcome to Neurotalk,
I'm so sorry for your diagnosis, but glad you were diagnosed early. You have the best opportunity for remission in the early stages. Physical therapy was a lifesaver for me. I also used massage therapy, gently and water therapy. The water needs to be 86 degrees. There are public pools, that offer water aerobics at very low cost or just adult times you can do your own or swim. Even your bath tub with epsom salts. My toes were curling and my Dr. had me do exercises and in about 4 months my toes touched the ground again. I have one hand partially paralyzed due to wrong diagnosis and delay of treatment. But I'm grateful to a sports injury hand specialist who diagnosed me in 1 minute from seeing my hand. He did a neuclear med test and was confirmed. I had therapy for desensitization and also did therapy at home. Take 4-5 plastic bowls and put different textures in them. I used cotton balls, coffee grounds, rice, popcorn kernals, sand, run your hand and feet thru the bowls. It's really important to desensitize your limbs.
I have one Dr. who happens to be a neurologist, psychiatrist, & pharmacologist. When I went full body, I really needed to talk to someone and am grateful to find him. Been seeing him for the last 5 years and attribute
my mobility and mental health to him. I see him once every two months. Saw him once a month until 4-6 months ago. Because it was 4 years when I was diagnosed, I've only had p.t. massage therapy and meds.
RSD is an autonomic disorder, which means it involves your involuntary organs. rsdrx.com is an excellent website from a rsd dr. that is now retired. the puzzles list is 140 questions about rsd and his answers. It's an excellent source of information besides the ones already mentioned.
Please read as much as you can. Never hesitate to share you pain and your good days with us. This is a wondeful group who are so compassionate and want to help in any way we can. Like others mentioned, don't waste any time in getting in to a pain dr.
The Mayo Clinic here in Scottsdale, AZ was the site for the ketamine studies a few years ago. 56th street & Mayo Blvd. There is a Dr. there that specializes in the feet. He is the only one I believe. I have a friend that works in administration if you need any names or phone numbers.
Wish you the best and please don't delay. Take care, loretta
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Unread 11-30-2010, 10:36 AM   #7
lou68847
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Quote:
Originally Posted by WolfLarsen View Post
I was diagnosed with RSD by a foot & ankle specialist. He first tried some simple physical therapy treatments but it hasn't worked yet so I'm wondering what course I should persue next.

It sounded like I should go to a neurologist, who then might refer me to a pain clinic, with anesthesiologists specialising in pain management. I'm curious to hear what advice others might have on this- on who to see and what treatments are worth considering, etc.

I want to keep costs down- I don't have insurance or a job right now- but I also want to get this cured.

Also, whats the best way to find specialists who are sufficiently knowledgeable about this? It seems to be pretty critical with RSD. This went undiagnosed for months until I finally found someone who figured out what it was- my primary care guy ranted about how I was a hypochondriac and wasting his time.

Right now I live 50 miles from Sioux Falls, SD, but staying with relatives is an option- I have some that live about 90 miles from the Mayo Clinic.

Anyway, any advice anyone has is surely appreciated!

If anyone's curious this is kind of where my RSD is at right now:
My RSD by the sound of it seems less severe than may cases. Its mainly very weird about temperature. If it gets below the low-mid 80s I have to bundle my foot heavily to keep it warm, and it tends to become very stiff and immobile. But if it gets too warm, which is pretty frequent, it gets red and inflamed and very uncomfortably hot. I wouldn't say it hurts much except if its really too hot (burning) or too cold (aching), although its extremely touchy and easy to injure by overexertion or walking on it when stiff, etc.

I had been able to walk on it pretty well until recently a physical therapist did some ill-advised stuff to it and messed it up so bad I was crutches only for a week, which was apparently enough for the RSD to worsen dramatically just from inactivity and I now find my foot so stiffened and touchy that more than a few steps walking on it seems risky. It also abruptly spread to my other foot, which I had slightly injured, and for awhile I was getting an exaggerated pain sensation in addition to hot and cold, although its tapering off a bit now.
I see you have not been on line for a while. I am from Yankton, Sd .
Was wondering If you found any doctors around here for your treatment of the RSD. I have RSD also , But I dont fell my doctor is doing much for it. I am on WC and he is doing my MMI in March . I am not sure where we really stand on the RSD .
And Ideals regarding Doctors around he would be great.
Thanks Lou
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