Tuesday, September 02, 2014

Monday, October 12, 2009 jake catskill, Community Member, asks

Q: how do i know if its rsd for sure?

For the past month I have had severe pain in my right leg and foot incuding purplish colored skin, skin has also a shiny appearance in areas. I have also had ultrasound, x-rays,bonescan,and mri done including multiple blood tests without answers. They have given me cortisone but it did nothing, also stronger pain meds than I already was on, they do take the edge off but the pain is still there

 

I have djd, no acl, no medial meniscus, bonespurs and arthritis in my left knee so I have been living with chronic pain for sometime, Ive been told if I was older I they would give me a total knee replacement, which would give me more mobility and pain relief not even to mention the joy I would get going for walks with my wife or doing some of the things I used to be able to do. My little girl is on the verge of crawling and I can barely walk, what am I going to do when she starts walking and I cant catch her? My right leg was my strong side now the pain in it is almost at times unbearable. I have not injured it, that I know of, it just kinda came out of nowhere about a month ago and it seems to be getting worse. Two doctors that have seen me suggested that it might be rsd and that the could not help me. How can I know for sure and what do I do then ? I'm becoming very dissabled which has made it very hard on my wife who now is having to take care of her thirty year old husband and our seven month old child, not to mention I cant work because of this. How come it seems that no doctors want or are willing to help you? I'm so tired of hearing " your to young for these problems, we cant help, your just gonna have to live with it" why cant somebody help us?   please help

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Answers (3)
BobinmidMO, Community Member
3/ 5/10 10:31am

First, let's become friends, because I'd like to help you.

 

I don't know yet how to send private messages, but once I figure that out, I think we need to talk one on one without it being a posting for all to see - especially regarding some of the more private thoughts we need to talk about.  Once I learn how to send a private message, I'll give you my contact info, including phone and email address so we can talk in private.

 

Do you have RSD?  I'm not a doctor, but I do have a truck load of experience and with everything you've shared so far (but I have more questions I'd like to ask), I'd say you've got better than 80% odds of having RSD/CRPS.  I'm so very sorry.

 

Let's talk about how to get care.  First, you need to find a doctor who's not scared of RSD/CRPS.  This is a disease that's diagnosed not through blood tests, but through symptoms such as the ones you've listed.  Pain can be managed, and it's clear you're in need of a whole lot better pain care than what you've got now.  By the way, a guy in your age bracket is within the age area when we get RSD.  I was 37 when I got diagnosed.

 

Once you get a doctor who'll say you've got RSD, then it's time you look into disability.  Let's face it, we all need money.  When I applied for SSD, I got my first check deposited 90 days from the day I filed the paperwork.  How did it go through that fast you might say?  As long as the documentation is perfect, Social Security will understand just how bad it is, and what lies ahead.

 

I don't know what kind of medical insurance you have, but if you don't have any, then it's time to check with Family Services and check into getting your local Medicaid as coverage.  RSD requires medical care and meds so the bills add up fast.

 

Instead of doctor shopping (which can hurt you very bad in the end), I'd instead just start calling up doctors first and asking them over the phone if they're use to dealing with RSD?  If they say no, then keep calling more.  When you find a doctors office who claims they deal with RSD all the time, then it's time you make an appointment and get the ball rolling.  I was diagnosed 2 weeks after my accident.  Regarding the fact you don't know how or if you got hurt, that's an odd part of your story, but I'd still bet you did injure yourself in some slight way be it a sprain or even a boo-boo of some sort.  Something got the ball rolling.

 

Please don't give up, and I'd like to stay in contact so if possible, I can help you weave through some of the mess you've got ahead.  For what it's worth, I've been where you are, only it was around 13 years ago, so I really do understand.  Bob.

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buggyboys2, Community Member
7/17/14 8:30am

just wondering if you are still on this site would like to talk to you about  RSDand getting diagnosed  

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mabith, Community Member
11/18/09 2:18am

Some doctors use bone scans to identify RSD but it seems like the more common diagnostic is a nerve block. Though it's possible that the nerve block only works if you have two limbs affected by RSD, I'm not sure.

 

Honestly RSD is in part a fall back. Once you rule out everything else that's even remotely possible then they feel comfortable saying it's RSD (which doctors don't like to say since it's so hard to treat and has so few real treatment options). So six of one, half dozen of the other. Keep getting blood tests sent (make sure they check for Lyme disease), get another bone scan to see if things have changed in that leg, and get a diagnostic nerve block. I was diagnosed through this method at Johns Hopkins by Dr. Raja, who seemed on the ball. No sure where you live, but Dr. Chin in DC at George Washington University also seems very good.

 

I'd work on rushing this as much as possible though. With RSD the sooner you catch it the better. After a year or so it becomes much much harder to treat. New ketamine infusions are also helping people in a huuuge way, so if you do get diagnosed with RSD I'd quite recommend pushing for a ketamine treatment as it seems to be the best RSD treatment we've found up to this time.

 

Good luck,

Meredith

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Mylie-lynn, Community Member
12/30/09 7:12pm

Hello, My name is Mylie and i got R.S.D. when i was 13 on november 14th of 2008 now  i just turn 15. I got mine from being pushed off a wall at school and landed on my neck. The things I feel in my Right arm is burning like a horrible sun burn

and a deep bone ache and a numb feeling like if you put your hands in snow then hurry and put them under hot water. My arm does turn red and purple so you do sound like you have R.S.D. i went to a pain clinic and they tryed many painful proceedures witch did not work so i just went for the spinal cord stimulater implant on december 16th of 2009 and it has helped some of my pain.  Thanks Mylie

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ladiebuggg888, Community Member
1/ 4/10 11:00pm

Bless your soul, i hope the implant helped!!! i was trying to get it. all i had to do was 1 more visit  with the psychiatrist and i would have been approved. they stopped my insurance at that point so now i have no dr, no meds, no implant and absoluetly no help!!

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By jake catskill, Community Member— Last Modified: 07/17/14, First Published: 10/12/09