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 10-23-2011, 07:36 PM #1
Rolacoy Rolacoy is offline
Junior Member
 
Join Date: Oct 2011
Location: Texas
Posts: 22
10 yr Member
Rolacoy Rolacoy is offline
Junior Member
 
Join Date: Oct 2011
Location: Texas
Posts: 22
10 yr Member
Default I think I may have RSDS

I will be very brief, i only have one working arm.

I had been having slight shoulder pain (level 2) for a year or so, I think it was from back & neck problems. Aug 22 I was working in the yard and strained my neck and left shoulder. Later that evening the pain level 8. It has got some better, pain avg 3.5 with about 25 mg of Loratab per day. It seems to be pinched nerves. I have been to 5 doctors, family dr, nerve dr says that two nerves are pinched, C-5 & C-6. Neck dr, shoulder dr, and neurologist find nothing that is causing the problem. They have done MRI's and CT scans of my shoulder, neck and head.

I am 71 years old. I don't know if this has anything to do with PsA or not. I was diagnosed with Psoriatic Arthritis about 3 yrs ago. I took MTX for about 1 1/2 yrs. My PsA was light enough that I was able to get off MTX according to blood work every 2 months.

My Arthritis immediately checked for symtoms of Reflex Sympathetic Dystrophy Syndrome when I told her what had happened. Later that day the neurologist also said that it must be Reflex Sympathetic Dystrophy Syndrome. So what do I do now?
Rolacoy is offline   Reply With QuoteReply With Quote

advertisement
Old 10-23-2011, 08:03 PM #2
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
keep smilin keep smilin is offline
Member
 
Join Date: Aug 2009
Posts: 851
10 yr Member
Heart

Quote:
Originally Posted by Rolacoy View Post
I will be very brief, i only have one working arm.

I had been having slight shoulder pain (level 2) for a year or so, I think it was from back & neck problems. Aug 22 I was working in the yard and strained my neck and left shoulder. Later that evening the pain level 8. It has got some better, pain avg 3.5 with about 25 mg of Loratab per day. It seems to be pinched nerves. I have been to 5 doctors, family dr, nerve dr says that two nerves are pinched, C-5 & C-6. Neck dr, shoulder dr, and neurologist find nothing that is causing the problem. They have done MRI's and CT scans of my shoulder, neck and head.

I am 71 years old. I don't know if this has anything to do with PsA or not. I was diagnosed with Psoriatic Arthritis about 3 yrs ago. I took MTX for about 1 1/2 yrs. My PsA was light enough that I was able to get off MTX according to blood work every 2 months.

My Arthritis immediately checked for symtoms of Reflex Sympathetic Dystrophy Syndrome when I told her what had happened. Later that day the neurologist also said that it must be Reflex Sympathetic Dystrophy Syndrome. So what do I do now?
Welcome.... If your neurologists is knowledgeable about RSD, please ask about doing nerve blocks..soon. Time is of the essence... Better success rate... And remember do not use ice.. That will only aggravate your condition.. Otherwise turn to us with questions and concerns...

Take good care, Kathy
keep smilin is offline   Reply With QuoteReply With Quote
Old 10-23-2011, 08:37 PM #3
Russell's Avatar
Russell Russell is offline
Member
 
Join Date: Feb 2011
Location: Blue Ridge Mnts of NC, USA
Posts: 680
10 yr Member
Russell Russell is offline
Member
Russell's Avatar
 
Join Date: Feb 2011
Location: Blue Ridge Mnts of NC, USA
Posts: 680
10 yr Member
Default

Welcome Rolacoy,
Don't just visit join the family. As far as what Kathy said I second that. Please let us know how it goes.
Best of luck to you...
__________________
Hope for better days.....
Russ
okska'sssini ómahkapi'si
.
Russell is offline   Reply With QuoteReply With Quote
Old 10-23-2011, 09:02 PM #4
Rolacoy Rolacoy is offline
Junior Member
 
Join Date: Oct 2011
Location: Texas
Posts: 22
10 yr Member
Rolacoy Rolacoy is offline
Junior Member
 
Join Date: Oct 2011
Location: Texas
Posts: 22
10 yr Member
Default

I have been using ice all of the tine. It feels good, how does it harm the healing process? I think my neurologist knows very little about this. My next appt is not for 2 months. I agree I need a different doctor. Who should we see, we live just west of Shreveport, LA?

Also how can I be sure I have Reflex Sympathetic Dystrophy Syndrome. I know the neurologist was guessing. Here is the meds they have me on.

Dairy Digestive Supplement - at least one a day

St. Joseph 81 MG - 1 each day

Omepraxole 20 MG - 1 per day ( anti-acid)

Meloxicam 15 MG - 1 each day (anti-inflammatory)

Hydrocodon Acetaminoph 7.5-500 (1/2 tablet every 4 hours for pain)

Methocarbamol 750 MG (1/2 tablet every 4 hours muscle relaxer)

LYRICA 75 mg Capsule for Nerve pain, (2 in am, 1 lunch and 2 in pm)

Fanasteride 5 mg (replaces Avodart for prostrate)

Cymbalta 30mg (to heal nerves)

It's a bunch of drugs and I don't like taking so much. I am in physical therapy twice a week. If this is what I have I need som help soon.
Rolacoy is offline   Reply With QuoteReply With Quote
Old 10-23-2011, 10:04 PM #5
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,690
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,690
15 yr Member
Default

Can you describe your pain and any odd skin sensations in more detail?
do any of these fit?
burning skin
skin color changes
swelling
extreme sensitivity to touch or breezes

these are just a few of the main RSD symptoms that are usually mentioned.

If not many fit, you may want to read on our Thoracic outlet syndrome forum (TOS) - to see it it fits.
I thought of it because of your comment -
"strained my neck and left shoulder."
here's the link to the useful sticky thread there-
http://neurotalk.psychcentral.com/thread84.html
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 10-23-2011, 11:20 PM #6
catra121's Avatar
catra121 catra121 is offline
Senior Member
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
catra121 catra121 is offline
Senior Member
catra121's Avatar
 
Join Date: Jan 2010
Location: Illinois
Posts: 1,785
10 yr Member
Default

RSD affects everyone differently, some people have all the symptoms, some only a couple, some symptoms come and go, some things come after a long time. Unfortunately there is no test to find out if it is or is not RSD...the symptoms have to fit and a certain number need to be observed by the doctor to give the diagnosis of RSD. This stinks because often times you end up getting a lot of testing to rule out other stuff before the diagnosis of RSD comes into play and by then you have lost a lot of time.

The important thing though is that if there is even a suspicion that you have RSD you should not be waiting 2 months to see a doctor about what to do next. Acting on it FAST is SO critical if it is RSD. If is not, then nothing hurt by seeing a specialist quickly. Try to find a doctor who specializes in RSD/CRPS and get in to see them as soon as possible.

I pray for your sake that it is not RSD. If you let us know more about your symptoms or any specific questions we can try to help you.

Some of the meds you are taking would be given if it is RSD...some not. Do you know if there are any that are particularly helpful or which ones are not? Everyone is different with meds...but I know that Hydrocodone was of ZERO help to me and I remember reading somewhere that it's not effective for RSD pain (but everyone is different so that's not a definite by any means). I also know that with RSD ice and cold are usually aggravate the pain, with heat generally helping with the pain.

If some of the things you read don't seem to fit then that may be a good sign that it is NOT RSD (and that would be wonderful news). Good luck, and I hope that you find the answer about what is causing your pain soon so that you are able to get some relief.
catra121 is offline   Reply With QuoteReply With Quote
Old 10-24-2011, 12:56 AM #7
Rolacoy Rolacoy is offline
Junior Member
 
Join Date: Oct 2011
Location: Texas
Posts: 22
10 yr Member
Rolacoy Rolacoy is offline
Junior Member
 
Join Date: Oct 2011
Location: Texas
Posts: 22
10 yr Member
Default

I subscribe to a web site called "Visible Body". On the site subscribers can view the whole human body in 3-D. It can be rotated to any angle, zoom in or out. Body parts can be made visible or invisible. I used it to turn off everything but the bones and nerves in the arm and shoulder. The nerve from C-6 goes right to the four finger and thumb. It feels as if my problem is only on that nerve. Also that nerve is very sensitive. Several times recently I have caused my arm to go numb by laying or leaning back in a chair, putting pressure on the nerve under my shoulder blade.

burning skin -------------------- Yes, at first my whole thumb and four finger felt as if they had been scalded, that has improved, now only when I wear wrist support that binds them. They always seem warm to the touch. At first my four arm and upper arm burned, that is much better. It seemed to improve from the top down.

skin color changes --------------- I don't think so.
swelling --------------- I don't think so.

extreme sensitivity to touch or breezes --------------- very much so, maybe not a breeze, but any place along the nerve that I referenced above.

As far as the meds, I have been on 15mg per day, that two pills, for more than two years for back problems. Since this happened I am taking 3 pills per day. I think they help. Sometimes, not often I take a 7.5mg Hydrocodone and I feel pain relief in about 30 minutes. As far as I can tell the LYRICA and Cymbalta, I see no difference. I think they were prescribed for "maybe these will help".
Rolacoy is offline   Reply With QuoteReply With Quote
Old 10-24-2011, 03:57 AM #8
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
10 yr Member
Default

Ice can can cause nerve damage. Do not use it at all until RSD is ruled out.

My best explanation of what RSD pain is like for me, is when you stub your toe, and have that intense burning pain for a few seconds? It's like that, but it doesn't go away. It's much worse than post surgical pain (except for the day of surgery.)

Having someone lightly graze the RSD effected area will be more painful than if normal pressure is applied. You can test this by skimming a cotton sheet over the painful area.

If it is RSD, you must get URGENT CARE. You need a new doc for sure, if he believes you might have RSD, you should have a follow up appointment in a week! He's also throwing you on too many new meds at one time...
LIT LOVE is offline   Reply With QuoteReply With Quote
Old 10-24-2011, 06:35 AM #9
Rolacoy Rolacoy is offline
Junior Member
 
Join Date: Oct 2011
Location: Texas
Posts: 22
10 yr Member
Rolacoy Rolacoy is offline
Junior Member
 
Join Date: Oct 2011
Location: Texas
Posts: 22
10 yr Member
Default

How do I find a neurologists that is knowledgeable about RSD? Are they listed that way?

I did not use ice lasgt night and my arm feels no worse so I will leave the ice alone till I learn more.

I really thank all of you for the help.
Rolacoy is offline   Reply With QuoteReply With Quote
Old 10-24-2011, 06:48 AM #10
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Quote:
Originally Posted by Rolacoy View Post
How do I find a neurologists that is knowledgeable about RSD? Are they listed that way?

I did not use ice lasgt night and my arm feels no worse so I will leave the ice alone till I learn more.

I really thank all of you for the help.
I have a suggestion based on your drug list.

Omepraxole 20 MG - 1 per day ( anti-acid)

Drugs that lower acid in the stomach when taken over a long period of time, (months) will block your body's ability to absorb B12 from food. They also block, magnesium, calcium, zinc, folate, and iron absorption.

All people in the US are now recommended 50 yrs and older to take B12 supplements separately from food and other vitamins.
This is because the older we get the less we make acid anyway.

I would get tested for B12 level, and it should be over 400 (US units). The lab ranges in US are still reported using the old scale, where 200 is considered "normal". In the 200's you can have significant nerve damage. The new scale starts at 400. When your B12 falls, nerve functions become impaired, and if not fixed, and raised, properly, you can suffer permanent impairement. This is a simple blood test.
While you are there get a Vit D too.

Here is my B12 thread:
http://neurotalk.psychcentral.com/thread85103.html
There are medical links with diagrams in it...one is to American Association of Family Physicians.

Regarding the Visible Body... that is a great site, but it some of our members may not be be able to afford its monthly charge.

This link offers a similar 3D body view.... for free.
http://www.healthline.com/human-body...ous-system#6/5

It is not quite so stunning, but maybe useful still for some here.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are 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.

Last edited by mrsD; 10-25-2011 at 01:41 AM. Reason: fixing spelling
mrsD is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
SandyRI (10-24-2011)
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
I have advanced RSDS jdcrunchman New Member Introductions 5 11-06-2010 02:46 PM
Press Release: SS Ruling for RSDS Claims Debby Reflex Sympathetic Dystrophy (RSD and CRPS) 6 07-02-2010 11:51 AM
RSDS.org website peppermintpatty Reflex Sympathetic Dystrophy (RSD and CRPS) 3 05-03-2010 02:12 PM
Need initial RSDS advice gravyboat Reflex Sympathetic Dystrophy (RSD and CRPS) 9 10-23-2009 07:18 PM
nan17051 RSDS nan17051 Reflex Sympathetic Dystrophy (RSD and CRPS) 5 01-17-2008 12:24 AM


All times are GMT -5. The time now is 06:09 PM.

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.