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 03-10-2020, 12:46 PM #1
Ninat Ninat is offline
Newly Joined
 
Join Date: Mar 2020
Posts: 4
3 yr Member
Ninat Ninat is offline
Newly Joined
 
Join Date: Mar 2020
Posts: 4
3 yr Member
Default CRPS but no pain???

Hi I've today been diagnosed with CRPS. I broke my tibia plateau on December 9th 2019. I was diagnosed with MS 2015. It was my bad leg that was broken.

Today was meant to be my last Xray.

Unfortunately I was told none not healed completely . Then upon further examination, got told I had CRPS

I've naturally googled the hell out of it, all afternoon.

BUT I dont have any pain. Yes my foot and leg are swollen and are a strange colour compared to good leg.. but no pain?

Could I have been misdiagnosed?

Please help.
Ninat is offline   Reply With QuoteReply With Quote

advertisement
Old 03-10-2020, 02:19 PM #2
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

Hi Ninat

Welcome to NeuroTalk .

I am sorry to read about your CRPS.

It is something that I have no personal experience of but hope that other members will be able to offer you good ideas.

All the best.
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
Old 03-10-2020, 02:56 PM #3
Ninat Ninat is offline
Newly Joined
 
Join Date: Mar 2020
Posts: 4
3 yr Member
Ninat Ninat is offline
Newly Joined
 
Join Date: Mar 2020
Posts: 4
3 yr Member
Default

Thank you Kiwi 33
Ninat is offline   Reply With QuoteReply With Quote
Old 03-10-2020, 08:29 PM #4
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,721
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,721
15 yr Member
Default

Did you find the Sticky threads in the upper area on the RSD/CRPS page?
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 03-11-2020, 03:32 AM #5
Ninat Ninat is offline
Newly Joined
 
Join Date: Mar 2020
Posts: 4
3 yr Member
Ninat Ninat is offline
Newly Joined
 
Join Date: Mar 2020
Posts: 4
3 yr Member
Default

Hello. I will have a look thanks
Ninat is offline   Reply With QuoteReply With Quote
Old 03-11-2020, 06:28 AM #6
Irish's Avatar
Irish Irish is offline
Junior Member
 
Join Date: Apr 2019
Location: Milwaukee, WI USA
Posts: 19
5 yr Member
Irish Irish is offline
Junior Member
Irish's Avatar
 
Join Date: Apr 2019
Location: Milwaukee, WI USA
Posts: 19
5 yr Member
Default

Ninat
I am new to this forum, so I hope I am posting my reply in the right place. I am, however, not new to crps. If you have been looking around you have probably found the Budapest criteria? That is the standard used to determine if a patient has crps. But, in truth it is just a guideline. Since crps is a diagnosis of exclusion it can make diagnosing it difficult. On top of that, it seems to have different appearances from person to person. I can understand why you are questioning whether or not you have it since you (thankfully) are pain free. I know people who have varying degrees of pain. Many people describe their pain differently, some say stinging, some say burning, somempeople have hot limbs, some people have cold ones. As the name implies it is complex. But I cant say that I have met anyone in my 7ish year journey that had no pain.
There are many ppl who think doctors over diagnose this disease and there are many like me who fgo for 3 or more years before someone figures it out.
The discoloration and swelling of you leg are certainly classic symptoms. I guess the best advice I could give you would be to seek a second opinion. Your leg is swollen and discolored so something must be going on with it. You did not say where you are located, but if you have access to a large teaching institution that might be a place to help you find answers.
I am glad that you found us here. I hope you will keep posting and let us know where your journey takes you. Hopefully we can help and support you along the way.
Best
Barb
Irish is offline   Reply With QuoteReply With Quote
Old 03-11-2020, 02:20 PM #7
Ninat Ninat is offline
Newly Joined
 
Join Date: Mar 2020
Posts: 4
3 yr Member
Ninat Ninat is offline
Newly Joined
 
Join Date: Mar 2020
Posts: 4
3 yr Member
Default

Thank you so much Barb.

Yes, I'm very puzzled because I have read that the pain some poor people suffer with this illness is so bad, they request amputation.

I'm so grateful that I have no pain. I'm still wondering if the pain might come later, ie... no pain in early stages?

Yes. It's the same with MS. Doctors are the luck of the draw. You get those that over diagnose then those that ate the opposite.

Thank you.... I may well ask for a second opinion. I have been referred to a neuro surgeon and will report back.

I'm based in the centre of England.
Ninat is offline   Reply With QuoteReply With Quote
Old 04-12-2020, 07:50 PM #8
cdwall cdwall is offline
Member
 
Join Date: Jan 2014
Location: NC
Posts: 136
10 yr Member
cdwall cdwall is offline
Member
 
Join Date: Jan 2014
Location: NC
Posts: 136
10 yr Member
Default

In one large study I read years ago, 7% of CRPS patients have no pain.
cdwall is offline   Reply With QuoteReply With Quote
Old 04-13-2020, 03:50 PM #9
Imahotep Imahotep is offline
Member
 
Join Date: Feb 2007
Posts: 606
15 yr Member
Imahotep Imahotep is offline
Member
 
Join Date: Feb 2007
Posts: 606
15 yr Member
Default

If amputation solved this it wouldn't be so bad. It does not and often makes it far worse.

I have limited pain most of the time but in order to avoid the pain I must go to extremes in how I live my life. My problem is that usage tends to bother me a day or two later and I never know what's harmful. So it's a balancing act between doing as much with it as possible and trying to avoid the pain later.

I could live a normal life with one hand.

Everyone's different. But as a rule you need to learn what helps and what hurts and you must use the affected limb at least a little or the condition will worsen. As a rule you need your sleep and you need as little stress as possible. There are meds that will help almost anything that goes wrong but most of the meds to help RSD pain have limited effectiveness. The pain itself (and emotional pain) are hard on your health and are to be avoided as well. Find things that work for you and ask questions.

Best of luck.
Imahotep is offline   Reply With QuoteReply With Quote
Reply

Tags
crps, diagnosed, leg, pain, told


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
back pain,crps know what you mean eevo61 Reflex Sympathetic Dystrophy (RSD and CRPS) 0 01-24-2014 08:03 PM
CRPS 1 but with NO pain? CRPSed Reflex Sympathetic Dystrophy (RSD and CRPS) 7 07-13-2013 09:30 AM
Is it CRPS if you don't have pain? jeichmann21 Reflex Sympathetic Dystrophy (RSD and CRPS) 12 05-27-2012 03:04 PM
PCP Treating TOS, Pain & CRPS olecyn Reflex Sympathetic Dystrophy (RSD and CRPS) 4 02-17-2011 05:53 PM
What does CRPS-pain feel like Tiril Reflex Sympathetic Dystrophy (RSD and CRPS) 7 01-08-2008 03:14 PM


All times are GMT -5. The time now is 06:56 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.