1. < Chronic Pain

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....

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BeBold | @bebold | Dec 18, 2022
In reply to @pdxgardener "No major side effects after the first couple days. Until then doctors recommend no driving, no..." + (show)
@pdxgardener

No major side effects after the first couple days. Until then doctors recommend no driving, no drinking, no major life decisions and no shopping on Amazon. It’s similar to coming down off any psychedelic drug.

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No Amazon. Made me chuckle.

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BeBold | @bebold | Dec 18, 2022
In reply to @chuck406 "Back twenty years ago when CRPS was new for me I went through odd sensations where..." + (show)
@chuck406

Back twenty years ago when CRPS was new for me I went through odd sensations where it felt as if my leg skin was crawling. It was so bad that I'd wake up from sleeping and tossing the blankets off because felt like insects crawling on the leg. I don't have the severe sensory issues anymore like bugs crawling but know what you're talking about. These days depending on the pain it can cause garment pain such as light brushes and/or a tightness due to wearing pants even when the pants I wear are not tight. Life is weird.

Saw a doctor recently who did an ultrasound on the fibular nerves and noticed they may be squeezing together due to trauma around area. January 3rd I am doing the injection (up to 6). It's called Common Fibular NU Injection. I assume NU is neuropathy ultrasound injection. I'm out of options at this stage in the CRPS game. If anyone has interest, here's the link for a description of what that means. It is not at this office, but locally for me. https://bostonsportsandbiologics.com/procedures/nerve-hydrodissection-boston#:~:text=Nerve%20hydrodissection%20uses%20fluid%20to,entrapped%20nerve%20using%20ultrasound%20guidance.

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Chuck, also wanted to acknowledge you as a CRPS "long haulers" too. Did I say good luck with your injections. Ive done many but not this one. Betty

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1 reply
drg24242 | @drg24242 | Dec 18, 2022
In reply to @pdxgardener "One year ago Ketamine was given orphan drug status by the FDA, for the treatment of..." + (show)
@pdxgardener

One year ago Ketamine was given orphan drug status by the FDA, for the treatment of CRPS. I’ve had three rounds of five two-hour ketamine infusions over the past year. The second series resulted in 45 days without my CRPS pain. Here’s some info from the Cleveland Clinic:
https://health.clevelandclinic.org/when-nothing-seems-to-help-your-crps-ketamine-pain-treatments-may-bring-relief/amp/

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Thank's @pdxgardener. I will get on that right away. My only concern if they factor in age. I'm 69.Darryl

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1 reply
pdxgardener | @pdxgardener | Dec 18, 2022
In reply to @drg24242 "Thank's @pdxgardener. I will get on that right away. My only concern if they factor in..." + (show)
@drg24242

Thank's @pdxgardener. I will get on that right away. My only concern if they factor in age. I'm 69.Darryl

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I don’t know that age would be a consideration as I am currently 66.

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1 reply
drg24242 | @drg24242 | Dec 18, 2022
In reply to @pdxgardener "I don’t know that age would be a consideration as I am currently 66." + (show)
@pdxgardener

I don’t know that age would be a consideration as I am currently 66.

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Thank's for your information about Ketamine pain treatments. I live only 3 hour's from Cleveland Clinic. Not sure how I could get there back and forth. Can't afford to fly but for this, I'll find a way and also find out if my medicare would cover. Again, thanks! Darryl

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drg24242 | @drg24242 | Dec 18, 2022
In reply to @bebold "Chuck, also wanted to acknowledge you as a CRPS "long haulers" too. Did I say good..." + (show)
@bebold

Chuck, also wanted to acknowledge you as a CRPS "long haulers" too. Did I say good luck with your injections. Ive done many but not this one. Betty

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No. Noluck with nerve blocks or even nerve stimulater trial. Darryl

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1 reply
kenc | @kenc | Dec 19, 2022
In reply to @chuck406 "Back twenty years ago when CRPS was new for me I went through odd sensations where..." + (show)
@chuck406

Back twenty years ago when CRPS was new for me I went through odd sensations where it felt as if my leg skin was crawling. It was so bad that I'd wake up from sleeping and tossing the blankets off because felt like insects crawling on the leg. I don't have the severe sensory issues anymore like bugs crawling but know what you're talking about. These days depending on the pain it can cause garment pain such as light brushes and/or a tightness due to wearing pants even when the pants I wear are not tight. Life is weird.

Saw a doctor recently who did an ultrasound on the fibular nerves and noticed they may be squeezing together due to trauma around area. January 3rd I am doing the injection (up to 6). It's called Common Fibular NU Injection. I assume NU is neuropathy ultrasound injection. I'm out of options at this stage in the CRPS game. If anyone has interest, here's the link for a description of what that means. It is not at this office, but locally for me. https://bostonsportsandbiologics.com/procedures/nerve-hydrodissection-boston#:~:text=Nerve%20hydrodissection%20uses%20fluid%20to,entrapped%20nerve%20using%20ultrasound%20guidance.

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This is not good news for you, but you may want to read about Cileen Dions recent diagnosis.

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2 replies
drorvick | @drorvick | Dec 19, 2022

I have Type 2 since 2006 from spousal abuse. There is a group on Face book that gives wonderful support and loads of accurate knowledge, Positivity with RSD/CRPS.org. Retraining the Brain and neural pathways. Susan is the administrator. She was in bed for over 20 years and is now recovering. Nightly live positivity chats and years of excellent book chapter by chapter are in the files. There are no horrid posts Susan reviews them all before they go to the group. All questions and so much help. This group has turned my life around. All treatment tools are discussed with the positive and negative results from member experiences. Stay away from the negative groups.. I have almost full body now. I hope you join. It is for family members too.

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Chuck406 | @chuck406 | Dec 21, 2022
In reply to @drg24242 "No. Noluck with nerve blocks or even nerve stimulater trial. Darryl" + (show)
@drg24242

No. Noluck with nerve blocks or even nerve stimulater trial. Darryl

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No luck with nerve blocks either. Considered a nerve stimulator years ago but declined.

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Chuck406 | @chuck406 | Dec 21, 2022
In reply to @kenc "This is not good news for you, but you may want to read about Cileen Dions..." + (show)
@kenc

This is not good news for you, but you may want to read about Cileen Dions recent diagnosis.

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I skimmed it, thanks but does not apply to me. CRPS type II for this long isn't good news anyway you look at it, however, I lived my life the way I chose until I was forced to change to an office job. Have worked in various industrial settings for over a decade. Stubborn to change. Blowing my upper back out at Boeing a few years ago and quitting drinking caused massive issues, but I refuse to resort to beer everyday drinking anymore. Occasional single malt scotch usage but even then it's rare anymore because what I like to drink is out of my price range.

I have no other options bud. Injections, diaphragm therapy, exercise at home, and then concentrate on compressed discs in my upper back and looking at the lower back afterwards. I'm not anti-surgery but the odds need to be damn good. Is what it is. I'm thankful the local doctors have long resumes and experience.

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