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)


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Old 01-26-2010, 08:17 PM #1
rubyvk2 rubyvk2 is offline
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Confused Might have RSD

Hi, my name is Ruby. This is my first time posting and on this site. My doctor thinks that I might be in the beginning stage of RSD. But the nerve doctor says that I don't have all of the signs of RSD. I fell and brused my knee about 5 months ago and the pain is not getting any better. It hurts to set in a chair, to have anything touch my knee above and below my knee, from my knee down to my toes swell up, and my foot is cold about 95% of the time, and it hurts to walk. But I don't have any discolor in my leg, and my leg muscle is a little smaller, but my doctor says that I'm not doing my leg exercises. I don't do them much because it hurts too much. If anyone can help me figure this out i would really be thankful.
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Old 01-26-2010, 10:25 PM #2
AintSoBad AintSoBad is offline
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I feel badly for you. I've had rsd since '83. long time.

I still cannot believe these (doctors) who feel that you must have ALL the symptoms that CAN come along with RSD, to make a dx!
BLAST THEM!

It sounds like RSD, so Treat it like RSD so that you have a chance of putting it in remission!!
Don't wait for a stupid arsd doctor to make up his mind!

You've got to get to work on the cure, swim in warm pools, PT, etc.
Meds, so you can tolerate that!

Please, tell us how this injury happened? Were you at work?

You're seeing the wrong doctor. (nerve doctor), I'm not sure what that is, but find a Neurologist, who's treated and dx'd RSD before!

The ONLY chance of not living with this monster forever, is an early diagnoses (dx).
Get one!

And, in the mean time, Keep moving!
Don't let the pain win!

Keep us posted please?
We've got so many good folks here, who will help!

Welcome, rubyvk2


Pete


asb
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Old 01-26-2010, 11:11 PM #3
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Default I Agree !!

DON'T put it off ! Get the diagnosis on record ASAP, so you can get this treated ! Don't let the doctors give you the runaround.
Have you had any testing (MRI, Cat Scan) to rule out blood clot or something like that?
My issue is with both legs 5 years now. I was in 'denial' the first 2 years. I regret the fact that I let Dr's give me the runaround and spent thousands of $ on needless testing.
5 months is a long time. You need to get someone to take this seriously. You don't have to have 'all' of the symptoms of RSD.
Please find someone who will get on this NOW.
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Old 01-27-2010, 09:55 AM #4
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Default What is going on with my knee.

Hi, this is Ruby again. The doctor that said that I don't have RSD was a neurologist. My knee specialist thinks that I do have RSD. She is going to give me some shots in my knee to see if that will help, but if it does not help then she does not know what to do. She say I can have shots in my back, but I have back problem too so I don't want the shots in my back. I have had a bad knee since I was 9 years old. I have had about 6 knee surgeries on the knee. 5 months ago I was taking my dogs outside in the morning and I tripped over my garden hose that someone left laying around. And I bent my knee to far, it felt like everything in my knee tore. I went to the knee specialist a week later and had an MRI. the MRI showed up that I only bruised my knee. And the pain has not went away. And new things keep coming up with my knee and foot now. I have been taking pain meds. and muscle relaxer to help with the pain. I still walk on my leg. if it was not for the meds. I would not be able to walk at all. My foot is starting to get hot now and my foot and up my leg will swell up so my boot is to tight. Is that normal? Thanks for your reply.

Ruby
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Old 01-27-2010, 11:54 AM #5
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Default Hi Ruby,

My thought would be to find an Anesteologist/PM Dr. They do pretty good at diagnosing RSD and treating it.

I think many of us have went through what you are going through. Drs. donot want to acknowledge RSD due to the long term treatment of it and no cure.

I never had any luck with Neurologist. I saw 4 of them they were jokes. If it doesn't show on their test then most of the time they donot acknowledge it.
I went through that with my TOS and RSD both.

I would try and get some blocks to see if that might put it into remission.

You will get a lot of good help here. Also read up on RSD sites and learn as much as you can about it. Dr. Hooshmand has a good puzzle on a website. Just type in his name.

With RSD the more you learn, the better you can find that right Dr. to help you.

Stick around.

Ada
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Old 01-27-2010, 05:10 PM #6
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Hi Ruby,

I have brachial plexus RSD from stretch injury(s) to my right shoulder, was diagnosed in June 2008 but probably had it longer than that.

I would be real careful of injections into areas that are not already impacted by your condition - I am fairly certain that a series of trigger point injections into my cervical spine and the occipital area of my head caused my RSD to spread to those sites within months from diagnosis from the original site - the right shoulder. I have suffered more from agonizing head pain than any other pain since all this started. My RSD has also spread to both my legs.

I second Ada's opinion on Neurologists - the one I saw in RI attributed my pain to "depression." He just had no clue, and likely didn't have any other RSD patients. I would encourage you to research all you can - see RSDSA.org - it is another great website with a terrific database of medical research articles and can also provide you with information on RSD docs in your area. I have used pain management and/or anesthesiologists almost exclusively since getting sick. Try to stick to the larger university teaching hospitals or city medical centers where the better doctors are located - you will be better off in the long run.

Physical therapy is also very helpful, but only if you find a therapist who knows what's going on. I've have therapists who have probably contributed greatly to the onset of my RSD (at the orthopedist's office, subsequent to rotator cuff repair surgery), to a guy who was awesome and tried very hard to support me and get me better that was elsewhere. It's preally just a matter of making sure they have EXPERIENCE with RSD. Also - make sure that they don't use any ice.

This is a great site with lots of great people. Welcome and the best of luck to you.

XOXOX Sandy
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Old 01-27-2010, 05:39 PM #7
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Hi Ruby,

I have been in your same boat. Actually, still there. I am now looking for a new pain doctor and have found one through recommendation of a friend and another doctor. Hopefully, he will help me.

I had surgery on my left foot for removal of a neuroma in June of 2008 and it has been a downhill ride since then. I have had injections, nerve blocks in the local area (no spinal one, yet), pills, .....you name it. The RSD set in after the surgery.

I would go to a pain doctor that comes recommended. Pain clinics seem to be the new, hot area and some of them aren't great. Maybe you could ask around for someone who knows of a good one. Or, as someone else said , a neurologist. Sometimes, a pain doctor will be a neurologist, too....or an anesthesiologist.

I wish you the best of luck and the best of care. Take good care .
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Old 01-27-2010, 08:43 PM #8
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Frown Thanks

Thanks everyone for your help and kindness. I'm going to go see my family doctor tomorrow and see what he says. And I'm seeing my knee specialist on Feb. 11 to see what she says. I will not get the injections in my back, because I will not be able to get out of bed for a week or more after I get the injections. I have had the injections in my back, but they were for my back pain. I have been reading about RSD and I'm starting to get scared about it. Is there other treatments out there besides the injections? I just wish this would go away.

Thanks,
Ruby
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Old 01-27-2010, 09:07 PM #9
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hi ruby,,,,,,,I hope and pray that you dont have RSD,,listen to the advice to the upper posts and you might want to see a pain management Dr to get an RSD dx.....dont put it off,,if your in the early stages ,its inperaative that you get all the vastly need care that you can,,,,Im hopeing you can get blocks injections to slow it down,,,as Ada noted ,a good anesthologist and pain managementdr;s are a very good way to start to get the Dx that you need,and the proper care,,,,Time is an issue and is a valuable thing not to waste when dealing with RSD,best wishes,,,,I do hope that its anything else but rsd,,,,
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Old 01-28-2010, 08:16 AM #10
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Quote:
Originally Posted by bobber View Post
hi ruby,,,,,,,I hope and pray that you dont have RSD,,listen to the advice to the upper posts and you might want to see a pain management Dr to get an RSD dx.....dont put it off,,if your in the early stages ,its inperaative that you get all the vastly need care that you can,,,,Im hopeing you can get blocks injections to slow it down,,,as Ada noted ,a good anesthologist and pain managementdr;s are a very good way to start to get the Dx that you need,and the proper care,,,,Time is an issue and is a valuable thing not to waste when dealing with RSD,best wishes,,,,I do hope that its anything else but rsd,,,,

Good morning all...

Hello Ruby.. Time is of the esence.. And I third Ada, in that neuologists altho one would think they would be the Dr. of choice for this condition..i saw many and would not give you two red pennies for them.. i treat with a PM Dr. he has the most vast knowledge.. At this time 3 yrs. into my RSD..it has spread and makes each day a challenge but it is my life now.. plz. move quickly and find a good RSD Dr. as to take steps early for intervention.... The very first question to the Dr. is..do you know about RSD??? If they look at all puzzled and don't take you seriously.... move on to another Dr. .. immediately...

Lean on us here..we are a family worth hanging with...

KS
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