1. < Chronic Pain

Complex regional pain syndrome or reflex sympathetic dystrophy

Posted by oldnana @oldnana, Mar 22, 2016

After knee replacement, I developed RSD (reflex sympathetic dystrophy). I have had severe pain in my legs for a year and half. Does anyone have suggestion as to how I may control this disease

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Cami | @monablue58 | Jan 7, 2021
In reply to @erikas "@monablue58 I would like to extend my welcome to Mayo Clinic Connect. You have been diagnosed..." + (show)
@erikas

@monablue58 I would like to extend my welcome to Mayo Clinic Connect. You have been diagnosed with RSD for 20 years and the disease has progressed. Your salivary glands stopped working and you are experiencing tooth and bone loss. You are now in need of a jaw transplant.

What you are going through must be tremendously difficult. Mayo Clinic Connect is a place for people to connect to give and get support. Other than Mayo Connect, what is your support system look like? I'm wondering if you live alone, have family or friends that visit and help, have been assigned a social worker and/or a therapist, and if you partake in any support groups, etc.

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Hi Erica & everyone,
Appreciate the welcoming note.
My family have been a very good at supporting me. I have a hard time making friends who will stick around when you're going through so many health crisis. Even though I fight very hard not to let this disease control my life.
Pain control, by exercising and eating a plant based diet, a good pain doctor, breathing techniques and just keep moving has helped me maintain some sense of normal. But I have unavoidable bad days or months and still I do my best to reach out to others.
I am in a crisis right now. I need a jaw transplant due to bone loss due to RSD. But I am having trouble getting someone to approve it medically. Or not part of a dental issue. Anyone have any advice? I can't afford to pay for it.
It's just as if I had cancer or any other disease that'll cause me to lose bone.
I'm so frustrated.
Excuse my rant. If there's anything you or anyone can think of that'll help me. I'll listen.
Thanks,
Monablue58

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awareofangels1967 | @awareofangels1967 | Aug 31, 2021
In reply to @lolomarie "I have tried Lyrica several times but it does nothing for me." + (show)
@lolomarie

I have tried Lyrica several times but it does nothing for me.

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I did Gabapentin 400mg 4 x day and it dropped my glucose and bp. Went on Lyrica but didnt help at all.

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awareofangels1967 | @awareofangels1967 | Aug 31, 2021
In reply to @rowan "What about the new one-- Cymbalta??" + (show)
@rowan

What about the new one-- Cymbalta??<br />
<br />

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I take Cymbalta but for my slight OCD and anxiety. Hasnt helped my CRPS. Wondered if anyone else had had success with it.

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awareofangels1967 | @awareofangels1967 | Aug 31, 2021
In reply to @oldnana "What type of therapy did you have?" + (show)
@oldnana

What type of therapy did you have?

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I had stellate injections (Fentanyl, Marcaine and 2 steroids injected into a nerve in my neck to travel to my hand/wrist) to reset the pain/nerve receptors. The next day I did PT for a month. We did this 3 times. I can now move my hand but still have all of the symptoms from CRPS. I had held my hand to my chest for 6 months before the tmt so I am proud of that, at least. We also did Gabapentin and Lyrica as I noted in another conversation. I am available to talk to if need more info.

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jalo | @jalo | Jan 11, 2023
In reply to @janetpr "One way to control RSD is to undergo therapy, whereby you retrain the brain to understand..." + (show)
@janetpr

One way to control RSD is to undergo therapy, whereby you retrain the brain to understand that there is no cause for pain, by exposing yourself to the pain intentionally. After a short while your brain will realize there is in fact no injury or cause for pain and you can go about your normal life. However, every so often it will rear it's ugly head and you'll have to do the therapy. I am a cronic pain sufferer, however, at least I do not have to deal with this all the time anymore. Hope this helps.

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Hi all, I have just been diagnosed with early CRPS in my right dominant hand and arm following a bad break and wrist surgery.
Yesterday was day 1 soecial physio, I will be using mirror box theraphy, desensitization and will start on a low dose antidepressant and tylenol 3 to help control pain.
I am hopeful that agressive therapy will tamd this monster.

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1 reply
shalombendavid | @shalombendavid | Jan 15, 2023

have you explored using calmare/scrambler tx? they have had excellent results for crps.

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1 reply
kasie | @kasie | Jan 17, 2023

I have had CRPS for 22 years. I had surgery for Tarsal Tunnel Neuritis on my right ankle, which in turn caused this chronic pain syndrome. It started out with a cold foot. Later it spread up to my thigh and continued up to the right side of my body all the way to my right side of my face after I fell over a table and hit my right thigh and bruised it. I was put on Cymbalta and started on Gabenpentin, which was increased to 600 mg 4 times a day. It has gotten my burning and hypersensitivity under control. I have my pain under control now and can live better. I am never out of pain, but it is bearable now. I have to have heat on my foot 24/7 now, but have learned to live with that. I have had physical therapy, injections, 2 Dorsal column stimulators inserted, different meds, therapy. You name it and I have tried it! I hope this might help someone on here. I will be happy to answer any questions.

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1 reply
finny4606 | @finny4606 | Jun 7, 2023
In reply to @lolomarie "I have tried Lyrica several times but it does nothing for me." + (show)
@lolomarie

I have tried Lyrica several times but it does nothing for me.

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It made me goofy and forgetful.

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finny4606 | @finny4606 | Jun 7, 2023
In reply to @kasie "I have had CRPS for 22 years. I had surgery for Tarsal Tunnel Neuritis on my..." + (show)
@kasie

I have had CRPS for 22 years. I had surgery for Tarsal Tunnel Neuritis on my right ankle, which in turn caused this chronic pain syndrome. It started out with a cold foot. Later it spread up to my thigh and continued up to the right side of my body all the way to my right side of my face after I fell over a table and hit my right thigh and bruised it. I was put on Cymbalta and started on Gabenpentin, which was increased to 600 mg 4 times a day. It has gotten my burning and hypersensitivity under control. I have my pain under control now and can live better. I am never out of pain, but it is bearable now. I have to have heat on my foot 24/7 now, but have learned to live with that. I have had physical therapy, injections, 2 Dorsal column stimulators inserted, different meds, therapy. You name it and I have tried it! I hope this might help someone on here. I will be happy to answer any questions.

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Do you mean dorsal ganglion root stimulators? How did they work for you?

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chadessa | @chadessa | Aug 6, 2023
In reply to @jalo "Hi all, I have just been diagnosed with early CRPS in my right dominant hand and..." + (show)
@jalo

Hi all, I have just been diagnosed with early CRPS in my right dominant hand and arm following a bad break and wrist surgery.
Yesterday was day 1 soecial physio, I will be using mirror box theraphy, desensitization and will start on a low dose antidepressant and tylenol 3 to help control pain.
I am hopeful that agressive therapy will tamd this monster.

Jump to this post

I have the same, early CRPS diagnosis in my right dominant hand from a break and surgery. I just started prednisone to reduce swelling and was told to make my hand work so I don’t lose flexibility. Please tell me how you are, how you found out about treatment options and what worked. I was told I can beat this at this point and want to be aggressive to do so.

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