CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body – her nerves are on fire… it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense… we keep searching for help and guidance… since many do not understand this horrible affliction…. thanks for any advice….

Interested in more discussions like this? Go to the Chronic Pain group.

Have had it for 6 months what meds work

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I have a recent issue of extreme burning full body itch excruciating!

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@missbiss

I have a recent issue of extreme burning full body itch excruciating!

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Hi @missbiss, welcome to Mayo Clinic Connect. Here's you'll meet other members dealing with CRPS like @gracie2018 @dmac5 @madhouse30 @mlross4508 @janetdh @menville and others.

Missbiss, May I ask what led to your having CRPS? What it an injury, stroke, other? Full body itching must be excruciating. What have you tried anything to help relieve the itching?

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@colleenyoung

Hi @missbiss, welcome to Mayo Clinic Connect. Here's you'll meet other members dealing with CRPS like @gracie2018 @dmac5 @madhouse30 @mlross4508 @janetdh @menville and others.

Missbiss, May I ask what led to your having CRPS? What it an injury, stroke, other? Full body itching must be excruciating. What have you tried anything to help relieve the itching?

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I suffered a Liz fracture of my right foot almost 3 years ago it has spread up to my knee and leg also affects my left foot now this full body burning I have is god awful I have been taking benedryl for 2 weeks now with only slight relief

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@missbiss

I suffered a Liz fracture of my right foot almost 3 years ago it has spread up to my knee and leg also affects my left foot now this full body burning I have is god awful I have been taking benedryl for 2 weeks now with only slight relief

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Benadryl (diphenhydramine) is an anti-histamine, for allergic reactions.

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@colleenyoung

Welcome @pfox.
You mention that your daughter has CRPS. I just want to make sure you mean complex regional pain syndrome which used to be called RSD (reflex sympathetic dystrophy). If yes, we have a couple of active discussions in the Brain & Nervous System group that you may wish to join.
– I developed CRPS (or RSD) http://mayocl.in/2cX10nN
– RSD/CRPS http://mayocl.in/2nJPDog

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Hi all I just heard bout this forum I’m new. I was diagnosed with CRPS type 2 I get hives on left side of body do to a work injury , to my left hip lower back. Long story felt a take my breathe away pain in left hip/ lower back I fell onto big rocks without bracing my fall, company dr kind of blew my hip pain off said it was my back muscles had x ray of back called it a lumbar strain contusion, allowed to work 3 monthes entire time complaining of hip pain they did bone scan and closed mri finally that showed possible fractured hip starting to heal and hip labrum tear. Few days after injury I was getting raised hives on my hip that burned couldn’t touch them , asked company dr. Said no clue. Finally after being pissed I got my own drs had labrum surgery which lead to hives coming two days after from my neck to my ankles. Surgeon saw I explained the pain to touch lots of other issues I’ve never had in 47 years my left ankle swelled no reason etc. all my 4 treating drs that are amazing all agree , of course the work dr that’s hired says he doesn’t think I do. ( save ins. Money) is why says I don’t hit the Budapest criteria which all my drs use and I have 3/4 of all .. I’m getting Charlie horses so bad I’m in tears has anyone had this? From my hip to toes on left side. My pains a constant 5 when it’s real bad a 15-20 I’m in PA and on medical marijuana, 2400 mgs of gabapentin and flexerall. And Suboxen which is very interesting, was on pain meds years and years ago. Never did drugs I didn’t like the opiates and needed to ween down they prescribed Suboxen which also helped with the pain without the opiate side effects, I stopped the subs 5 days prior to surgery, when my surgeon saw the hives after surgery off the subs he pulled up a power point and said I knew I saw this in the crps power point, one of the Medications in the Suboxen helps desensitize the skin in patients that get the hives from the crps / pain they upped to 3 a day and it helps keep hives at bay! Love that I found this. Love to chat with anyone that has similar issues!!

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REPLY

@mfmteam, I copied your post from the other discussion into the CRPS discussion. If you click the VIEW & REPLY button at the bottom of this email notification you will go directly to this post in the discussion and can meet other members discussing CRPS.

Posted by mfmteam @mfmteam, 3 hours ago
Hi all I just heard bout this forum I’m new. I was diagnosed with CRPS type 2 I get hives on left side of body do to a work injury , to my left hip lower back. Long story felt a take my breathe away pain in left hip/ lower back I fell onto big rocks without bracing my fall, company dr kind of blew my hip pain off said it was my back muscles had x ray of back called it a lumbar strain contusion, allowed to work 3 monthes entire time complaining of hip pain they did bone scan and closed mri finally that showed possible fractured hip starting to heal and hip labrum tear. Few days after injury I was getting raised hives on my hip that burned couldn’t touch them , asked company dr. Said no clue. Finally after being pissed I got my own drs had labrum surgery which lead to hives coming two days after from my neck to my ankles. Surgeon saw I explained the pain to touch lots of other issues I’ve never had in 47 years my left ankle swelled no reason etc. all my 4 treating drs that are amazing all agree , of course the work dr that’s hired says he doesn’t think I do. ( save ins. Money) is why says I don’t hit the Budapest criteria which all my drs use and I have 3/4 of all .. I’m getting Charlie horses so bad I’m in tears has anyone had this? From my hip to toes on left side. My pains a constant 5 when it’s real bad a 15-20 I’m in PA and on medical marijuana, 2400 mgs of gabapentin and flexerall. And Suboxen which is very interesting, was on pain meds years and years ago. Never did drugs I didn’t like the opiates and needed to ween down they prescribed Suboxen which also helped with the pain without the opiate side effects, I stopped the subs 5 days prior to surgery, when my surgeon saw the hives after surgery off the subs he pulled up a power point and said I knew I saw this in the crps power point, one of the Medications in the Suboxen helps desensitize the skin in patients that get the hives from the crps / pain they upped to 3 a day and it helps keep hives at bay! Love that I found this. Love to chat with anyone that has similar issues!!

@gracie2018 @dmac5 @madhouse30 @mlross4508 @janetdh @menville and others may be able to share their experience with CRPS with you.

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@johnbishop

@mfmteam, I copied your post from the other discussion into the CRPS discussion. If you click the VIEW & REPLY button at the bottom of this email notification you will go directly to this post in the discussion and can meet other members discussing CRPS.

Posted by mfmteam @mfmteam, 3 hours ago
Hi all I just heard bout this forum I’m new. I was diagnosed with CRPS type 2 I get hives on left side of body do to a work injury , to my left hip lower back. Long story felt a take my breathe away pain in left hip/ lower back I fell onto big rocks without bracing my fall, company dr kind of blew my hip pain off said it was my back muscles had x ray of back called it a lumbar strain contusion, allowed to work 3 monthes entire time complaining of hip pain they did bone scan and closed mri finally that showed possible fractured hip starting to heal and hip labrum tear. Few days after injury I was getting raised hives on my hip that burned couldn’t touch them , asked company dr. Said no clue. Finally after being pissed I got my own drs had labrum surgery which lead to hives coming two days after from my neck to my ankles. Surgeon saw I explained the pain to touch lots of other issues I’ve never had in 47 years my left ankle swelled no reason etc. all my 4 treating drs that are amazing all agree , of course the work dr that’s hired says he doesn’t think I do. ( save ins. Money) is why says I don’t hit the Budapest criteria which all my drs use and I have 3/4 of all .. I’m getting Charlie horses so bad I’m in tears has anyone had this? From my hip to toes on left side. My pains a constant 5 when it’s real bad a 15-20 I’m in PA and on medical marijuana, 2400 mgs of gabapentin and flexerall. And Suboxen which is very interesting, was on pain meds years and years ago. Never did drugs I didn’t like the opiates and needed to ween down they prescribed Suboxen which also helped with the pain without the opiate side effects, I stopped the subs 5 days prior to surgery, when my surgeon saw the hives after surgery off the subs he pulled up a power point and said I knew I saw this in the crps power point, one of the Medications in the Suboxen helps desensitize the skin in patients that get the hives from the crps / pain they upped to 3 a day and it helps keep hives at bay! Love that I found this. Love to chat with anyone that has similar issues!!

@gracie2018 @dmac5 @madhouse30 @mlross4508 @janetdh @menville and others may be able to share their experience with CRPS with you.

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Thank you I don’t know how I see if someone reply’s or wants to chat

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@mfmteam

Thank you I don’t know how I see if someone reply’s or wants to chat

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Hi @mfmteam – If a member replies like I am doing, you will receive an email notification like this one. You can also click the VIEW & REPLY button to get back to this discussion and then scroll to the top and page through the different posts and ask questions of any member that has shared something and you might have a question about it. Hope this helps.

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@johnbishop

Hi @mfmteam – If a member replies like I am doing, you will receive an email notification like this one. You can also click the VIEW & REPLY button to get back to this discussion and then scroll to the top and page through the different posts and ask questions of any member that has shared something and you might have a question about it. Hope this helps.

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Got it thanks so much. I’m hoping someone sees and has common problems. Thanks for all your help.

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@johnbishop

Hi @mfmteam – If a member replies like I am doing, you will receive an email notification like this one. You can also click the VIEW & REPLY button to get back to this discussion and then scroll to the top and page through the different posts and ask questions of any member that has shared something and you might have a question about it. Hope this helps.

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Many thanks

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