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 03-10-2020, 12:46 PM #1
Ninat Ninat is offline
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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.
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Old 03-10-2020, 02:19 PM #2
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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.
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Old 03-10-2020, 02:56 PM #3
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Thank you Kiwi 33
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Old 03-10-2020, 08:29 PM #4
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Did you find the Sticky threads in the upper area on the RSD/CRPS page?
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Old 03-11-2020, 03:32 AM #5
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Hello. I will have a look thanks
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Old 03-11-2020, 06:28 AM #6
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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
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Old 03-11-2020, 02:20 PM #7
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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.
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Old 04-12-2020, 07:50 PM #8
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In one large study I read years ago, 7% of CRPS patients have no pain.
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Old 04-13-2020, 03:50 PM #9
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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.
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