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)


advertisement
Reply
 
Thread Tools Display Modes
Old 02-03-2007, 11:13 AM #1
lauriegraham lauriegraham is offline
Junior Member
 
Join Date: Feb 2007
Location: Lantana, Fl
Posts: 10
15 yr Member
lauriegraham lauriegraham is offline
Junior Member
 
Join Date: Feb 2007
Location: Lantana, Fl
Posts: 10
15 yr Member
Unhappy New Member Recently diagnosed w/RSD - NEED HELP!!!!!!

Hi, I am new to this forum, and basically new to forums in general. I have never done this, although I have been in Technology since 1978. I am a 57 grandmother who use to be very active, getting up at 4:30 every morning to workout for 40 minutes. I have a very stressful job in Infrastructure Technology, working around 50-60 hours a week. Last March, 2006, I was involved in a car accident. A lady cut me off and we collided. My beautiful new 300z convertible had around $16,000 worth of damage. Anyway. my pain revealed that I had Spinal Stenosis. Never had pain down my leg before, always only disk and muscle (not to say this isnt painful also). Well, I was told that I needed surgery. Postponed till I couldnt walk anymore. Wasnt a candidate for epidurals. Had 5 level lumbar laminectomy L2-S1 on Oct 30. Spent 8 days in hospital (was told it would only be 2). Had some many complications. Was told by surgeon that 2 weeks after surgery I can start walking and getting back to work. So I went for a short walk, and all hell broke out. That's when the excruating nerve pain started in my right thigh. I get very sharp cutting pain (like Edward Scissorshand is having fun), along with painful pins and needles, and burning. I cant even touch my thigh without causing more pain. Couldnt do anything. Went back to surgeon, took MRI, was told that his surgery was successful, didnt know why i was in pain, go figure it out myself, BYE BYE. Then went to Neurologist, took EMG (THE most painful test ever, had more pain after). He told me I had RSD, and dont get depressed, and get pain management and pt. Went to Neurosurgeon, told me that I should of had only a 2 level surgery, my recovery time should have been 6-8 weeks of doing nothing, I didnt need more surgery (every time I twisted or bent I get a very sharp cutting pain in my leg and then cant walk for a day), had chronic pain, go seer pain management and pt. So now I'm getting pain management (on Lyrica, Kadian, and Percocet). Had 3 series of 6 nerve blocks, all which left me in more pain. Tried PT, which caused me more pain also. Its 3 months now. I was released to work from home. Dont know how I'll be able to go back into the office. Cant walk from meeting to meeting. I am an A type personality that bounces off walls.

So, basically, HELP!!!! Has anyone been in my situation, any suggestions? I really dont know where to go from here. I guess I am getting depressed from all this. I'm not use to just sitting or being in so much pain. I was the one who yelled when people smoked, or took the elevator. My daughter is having my 3rd grandson (she lives in San Diego), and I CANT go there to help and see him. Both of my other 2 grandsons (10 and 4), I saw them at 5 minutes old. I held them, I helped out. Now I cant. This is NOT FAIR!!!!!!


lauriegraham
View Public Profile
Send a private message to lauriegraham
Find More Posts by lauriegraham

Today, 09:02 AM
lauriegraham is offline   Reply With QuoteReply With Quote
Old 02-03-2007, 11:53 AM #2
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

Hi Their,
I want to welcome you here. Hugs. Roz
  Reply With QuoteReply With Quote
Old 02-03-2007, 12:20 PM #3
Braindrain's Avatar
Braindrain Braindrain is offline
In Remembrance
 
Join Date: Sep 2006
Location: Baltimore, MD
Posts: 128
15 yr Member
Braindrain Braindrain is offline
In Remembrance
Braindrain's Avatar
 
Join Date: Sep 2006
Location: Baltimore, MD
Posts: 128
15 yr Member
Thumbs Down been there, done that!

Hi, Laurie:

I don't have RSD, but I do have spinal stenosis in my lower back and
degenerating discs. I also have pain in my left leg. It starts in my
groin and goes down to just above my left knee. I've been to Pain
Management and had an RFA done, to cauterize the nerves in my
lower back that are causing the pain. My back feels much better
(not 100%, but at least I can get out of bed/chairs without falling
on the floor ). The doctor was only expecting a 50% reduction
in pain after the RFA, anyway. I can live with that.

I recently found out that the pain in my groin was a problem with
my hip flexor (sp?). So, I'm starting PT again and hopefully things
will work out much better than the last time. I also found out that
I have some bursitis in my right hip,from the way I walk when my
hip flexor acts up-which is most of the time.

Right now, I'm using a quad cane to get around and the Physical
Therapist I went to earlier in the week suggested that I get a
second one (one for each hand) to help with my balance. I had
tried a walker, but it didn't help and the hallways/doorways in
this house are too narrow for the walker, anyway.

Ask your Pain Management doctor if you're a candidate for the
RFA procedure. It really did help me with the pain in my back.
If it weren't for the bursitis and the hip flexor, I wouldn't be in
as much pain as I am now.

Good luck!
__________________
Gina

congenital hydrocephalus, porencephalic cyst,
epilepsy, lumbar spinal stenosis, degenerative
disc disease
Braindrain is offline   Reply With QuoteReply With Quote
Old 02-03-2007, 01:09 PM #4
InHisHands InHisHands is offline
Member
 
Join Date: Dec 2006
Posts: 808
15 yr Member
InHisHands InHisHands is offline
Member
 
Join Date: Dec 2006
Posts: 808
15 yr Member
Default

Welcome!! This forum is great- so many helpful people here!

In was recently dx with RSD, too (dx in Nov. '06).It's hard, but hang in there!
InHisHands is offline   Reply With QuoteReply With Quote
Old 02-03-2007, 01:21 PM #5
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,687
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,687
15 yr Member
Default

Welcome laurie,
Nice to meet you - I hope we can help, and we can always give support.
Sometimes we need to adapt and become type C instead of type A.
But we usually go thru the 5 steps of grief/loss on our way to adapting.

Have you had any physical therapy or a evaluation by an expert PT ?{or expert chiro}

There are alternative therapies also that might help for the pain-
HBOT, Low level laser, TENS...

much info is listed our useful sticky thread -
http://neurotalk.psychcentral.com/showthread.php?t=247
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 02-03-2007, 03:44 PM #6
lauriegraham lauriegraham is offline
Junior Member
 
Join Date: Feb 2007
Location: Lantana, Fl
Posts: 10
15 yr Member
lauriegraham lauriegraham is offline
Junior Member
 
Join Date: Feb 2007
Location: Lantana, Fl
Posts: 10
15 yr Member
Default

I was doing physical therapy for 2 weeks. they used different methods to desensitize my thigh (it hurts just to touch it. any clothing or blankets hurts). They did massages (which hurt like hell), TENS, and stretching exercises for my quad and hamstring. When I did these, I couldnt walk for days. I think this pain cam from my surgery site which I think I have instability. But it then agravited my RSD in my thigh. At this point i am not going back. What I am going to do is more research, and then look for specific pain management and pt that specializes in RSD, not just any pain or therapy. I dont think the group I went to really understood what I have and their therapy was not geared to my specific pain.
I just found this website, and I am going to make use of the information and support.
I going to be putting specific questions in, but right now, I wanted to just say hi, and thanks for the support.
lauriegraham is offline   Reply With QuoteReply With Quote
Old 02-04-2007, 06:38 AM #7
frogga's Avatar
frogga frogga is offline
Member
 
Join Date: Nov 2006
Location: UK
Posts: 830
15 yr Member
frogga frogga is offline
Member
frogga's Avatar
 
Join Date: Nov 2006
Location: UK
Posts: 830
15 yr Member
Default

Hey

just wanted to welcome you here - it is a brill site to be part of (though we all wish we weren't here!).I have full body RSD after a fall 5 years ago.

Hope that you find the info you are looking for here

Rosie xxx
__________________
It's always darkest just before dawn... but smile and the world smiles with you, cry and you cry alone
frogga is offline   Reply With QuoteReply With Quote
Old 02-04-2007, 07:45 AM #8
AnnBon AnnBon is offline
Junior Member
 
Join Date: Feb 2007
Posts: 64
15 yr Member
AnnBon AnnBon is offline
Junior Member
 
Join Date: Feb 2007
Posts: 64
15 yr Member
Default I Know how you feel...

Hi and Welcome,

I have RSD also. I was diagnosed after a sports inquiry and many surgeries to correct, which was corrected, but was left with a somewhat serious case of RSD. I am with an excellant Pain Dr. who specializes in RSD among other pain conditions.

I also had a go,go,go type personality before all this, it's hard to get adjusted to.

My suggestions is, to seek a Pain Dr. who has experience with RSD. Depending on what part of the country you live in try to seek out teaching hospitals. I see Drs in NYC and also PA. THere are many good RSD doctors just don't go to any Pain Dr. Use the phone don't run around to a lot of appts. To stressfull.

If you live on the East Coast of course NYC, Boston Mass-General, John Hopkins-MD,Tampa-FL( I don't know to much about the FL group). In the MID-WESt of course Mayo-CLinic,MN,AZ and FL branches, CLeveland Clinic-OH. I hope this helps. I have had RSD for almost 4 years and I have done a ton of research.


I truly wish you the best.

Ann
AnnBon is offline   Reply With QuoteReply With Quote
Old 02-04-2007, 11:31 PM #9
HubbyWithRSD's Avatar
HubbyWithRSD HubbyWithRSD is offline
Member
 
Join Date: Jan 2007
Location: Wisconsin
Posts: 145
15 yr Member
HubbyWithRSD HubbyWithRSD is offline
Member
HubbyWithRSD's Avatar
 
Join Date: Jan 2007
Location: Wisconsin
Posts: 145
15 yr Member
Default

Quote:
Originally Posted by lauriegraham View Post
I was doing physical therapy for 2 weeks. they used different methods to desensitize my thigh (it hurts just to touch it. any clothing or blankets hurts). They did massages (which hurt like hell), TENS, and stretching exercises for my quad and hamstring. When I did these, I couldnt walk for days. I think this pain cam from my surgery site which I think I have instability. But it then agravited my RSD in my thigh. At this point i am not going back. What I am going to do is more research, and then look for specific pain management and pt that specializes in RSD, not just any pain or therapy. I dont think the group I went to really understood what I have and their therapy was not geared to my specific pain.
I just found this website, and I am going to make use of the information and support.
I going to be putting specific questions in, but right now, I wanted to just say hi, and thanks for the support.
Hey there - Welcome to the forum. There is loads of great information here and lots of people willing to share.

My husband has had RSD in his leg (went into a "remission" of a sort) a few years back. Things that worked for him for his leg....PT in the form of massage therapy AND most importantly hot-tub therapy. The hot-tub REALLY worked for him - somedays that was ALL that worked for him. (Might be something for you to look into - You can do this at PT center, Your local Y, or even get one at home - our insurance paid for it...) Hubby now has RSD in his right arm after having ulnar nerve surgery and it appears that nothing is working at this point. They having him doing tens, on meds, and doing pt (excercising and massage) - Looks like he may be soon heading down to mayo for pain clinic, etc. With his arms it's been way different but we're hoping for something to work - early diagnosis is the key.

Think on that hot-tub therapy - If you can tolerate the heated water it could work well for you.
__________________
HubbyWithRSD


.



.
HubbyWithRSD is offline   Reply With QuoteReply With Quote
Old 02-04-2007, 11:50 PM #10
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,687
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,687
15 yr Member
Default

I found some pain management info for Palm Beach-
http://www.google.com/search?q=pain+...ient=firefox-a


Pain Management
www.CaringInfo.org Free Pain Management Resource. Find Information & Suport Groups.

Headache and Pain Center of Palm Beach
Robert J. Friedman, MD - Headache & Pain Center of Palm Beach. West Palm Beach Florida Area Pain Management and Neurology Doctor. Specializing in: ...
www.palmbeachpain.com/ - 8k - Cached - Similar pages

Back Pain, Neck Pain, Pain Management, Neurology, Pain Expert ...
Robert J. Friedman, MD Robert J Friedman, MD Pain Management Expert, Neurology Expert in West Palm Beach Florida. Board Certified: Neurology ...
www.palmbeachpain.com/staff.html - 8k - Cached - Similar pages

ExpertNeurology.com, Pain Management & Neurology Expert, Robert J ...
pain expert, neurology expert, pain doctor in west palm beach florida, pain management. Neurology and Pain Management Specialist in West Palm Beach, Florida ...
www.expertneurology.com/ - 9k - Cached - Similar pages

Palm Beach Pain Consultants - Pain Specialists - W. Palm Beach, FL ...
Welcome to the website for Palm Beach Pain Consultants, a pain management specialty practice based in West Palm Beach, Florida, with appointments also ...
[Click for more information] Map of Ste 4000, 1411 N Flagler Dr, West Palm Beach, FL 33401
www.palmbeachpainconsultants.com/ - 16k - Cached - Similar pages

Health news and resources for Palm Beach County and the Treasure Coast
Palm Beach Post - The Palm Beach Post newspaper, your top source for Palm Beach ... Ophthalmology, Orthopaedic Surgery, Otology-Neurotology, Pain Management ...
http://www.palmbeachpost.com/health/...ome/index.html - 49k - Feb 3, 2007 - Cached - Similar pages

Pain Medicine Florida (FL) - Find a Local Pain Medicine Doctor ...
Florida has 354 practicing pain medicine doctors. Broken out by city, ... in Ormond Beach is 1, in Pahokee is 1, in Palm Beach Gardens is 1, in Palm Coast ...
http://www.healthgrades.com/local-do...ine-search.htm - 29k - Cached - Similar pages

Physical Medicine & Rehabilitation Palm Beach Gard, FL - Find a ...
Find a physical medicine & rehabilitation doctor in Palm Beach Gard. ... pain management and/or physical therapy, to achieve rehabilitation. ...
http://www.healthgrades.com/.../flor...beach-gard.htm - 14k - Cached - Similar pages

[ More results from www.healthgrades.com ]
Testimonials Palm Beach Spine and Pain Institute
Dr. Lawrence Gorfine and his staff at the Palm Beach Spine and Pain ... is very qualified in the field of pain management and I would not hesitate to ...
www.helpain.com/testimonials.html - 13k - Cached - Similar pages
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
just diagnosed with Syringomyelia northendjoy Spinal Disorders & Back Pain 5 03-02-2012 02:23 AM
just diagnosed with Syringomyelia northendjoy Spinal Disorders & Back Pain 7 02-04-2010 11:19 PM
getting diagnosed Lily Autism 7 11-22-2008 09:44 PM
Newly diagnosed but.... fiberowendy2000 Bipolar Disorder 9 11-23-2006 03:21 AM
New and Just Diagnosed! GJZH Fibromyalgia and Chronic Fatigue 15 11-07-2006 08:27 AM


All times are GMT -5. The time now is 07:22 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.