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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I had Chronic Regional Pain Syndrome in my foot and ankle. I was prescribed a boot initially after a foot injury. After wearing it for a few weeks my pain did not improve in fact it worsened. I went back to my family doctor who had prescribed the boot. He examined the foot, asked me a few questions and said he thought I had something called Complex Regional Pain Syndrome. He explained what that is and referred me to some sort of a specialist who confirmed the diagnosis. This doctor felt I had the potential for a full recovery, and referred me to a physiotherapist who dealt with my condition. After 6 months of treatment I was able to walk without a cane. As time went on I could do more and more walking and that was key in my rehabilitation. I became pain free a few months later and I was 90% better. This was about 10 years ago and I can walk anywhere but need to be careful on uneven surfaces. I was fortunate to have 2 doctors who were aware of my condition and knew what to do about it.

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My Grandaugher has CRPS diagnosed over a year a go. It is in both legs, the pain is so bad she can't get a good nights sleep, her legs are burning or feel like Ice all the time. Been to 4 or 5 different Drs. This is really a nightmare with no answers. The last Dr. is suggesting Perpherial nerve blocks, but says its only for temporary relief.

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@kaynine

I have received a diagnosis, which seems to be the most difficult leg of this incredibly wonderful (Sarcasm doesn't come through in text… but you can be assured, it's there) rollercoaster. This all started with a broken leg, fibular fracture, that my initial "surgeon" allowed to manifest into one heck of a nasty infection over the course of a year and a half. My wife, using the doctors at the Mayo Clinic, saved my life by forcing a second opinion. After all of the antibiotics and debridement surgeries (ya, more than one.) I started exhibiting symptoms of CRPS. Started in the shower. As soon as the water from the shower head hit my foot, my entire world came to a screeching halt. So, before collapsing in the tub and writhing in agony, I pondered, "… that's weird, I thought I turned the water on and someone must've replaced the water in the tank with already on-fire gasoline." The next two hours in the bath tub were pretty rough.
More to the point, though. I've received two different sympathetic nerve blocks through injections, one in my lumbar/spine and the other at my knee. The relief from the injections was so intense I openly wept without regard for decorum and it was awesome, for about an hour. Then I gradually slipped back into my new normal, which is pain. Debilitating, overwhelming, ever-changing and excruciating pain. The "On a scale of 1-10" schtick that every P.A. starts any appointment off with is usually an invitation for me to dive into a diatribe of innocuous drivel about how pain scales on a ten-point basis are ineffective, irrelevant and subjective.
10. It's a 10. I've become so brow-beaten by several different broken systems and I have very little fight left in me, so I tend to just stare at the wall and wait for the doctor to say whatever they've already decided they're going to say before feigning to listen. I don't know what part of the brain generates empathy, well that's a lie its the right supramarginal gyrus, but I digress. My point is, most physicians that I have encountered aren't interested in my input at all. Vanity seems to be the causation here, but I could be wrong. I have a fairly high IQ, which is always received by physicians as a threat of some kind to their superiority.
So, now my Doc at Mayo had scheduled the surgery to implant a neurostimulator that would have most likely generated some semblance of relief in my life and my insurance provider is refusing to cover the procedure because it is "experimental". Which, I don't understand how since it's been around since '65, but I'm just one human represented as a number to Cigna (Health insurance).
Which leads me to here. I was wondering if anyone else has encountered this issue? Every other story I read is a long one as well, which is terribly sad, because there seems to be a lot more of us than is being represented. Anyway, I can't work.. I can barely make sure I eat something every day(lack of drive, not in need) and the social security administration arbitrarily decided that I'm not disabled, even though every doctor I see seems to believe otherwise. How is it that the SS is more qualified to make a medical decision than a team of physicians at the Mayo Clinic?
The Mayo is doing great by me and I wouldn't be here without 'em. It just seems like there's this general belief that I'm playing hooky or something by everyone else involved, causing roadblocks, detours and round-a-bouts.
In the interim, I sit in agonizing pain and just stew; worrying that I'll be forced to continue on subsisting like this.

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I hear you and identify with much of your story!

I have a complicated story too (probably like most people here). I have been in chronic pain for nearly 5 years as a result of a botched shoulder/bicep surgery (not at Mayo). The surgery left me with nerve damage, structural shoulder damage and now CRPS. I have had 2 corrective surgeries to remove scar tissue on my shoulder, bicep and medial nerves near my bicep. I have had 10-12 nerve blocks, 5-6 steroid injections, countless hours of PT, and just spent 5 days at Stanford having Ketamine infusions. I spent 100 days at Stanford in the last 18 months seeing doctors having MRI's etc. All of this has left me in more and more pain. I am 64 and was a very good athlete but now I can barely use my right arm. Any movement or resistance irritates my arm/nerves. My World is upside down because movement is bad not good (ugh!). I am in so much pain that I need to lie in bed most of the day and ice my arm to cope. I take Lyrica (100 mg/3xday), Hydrocodone, and Lorazepam (to sleep). The only tangible step that I have left is putting in a DRG (dorsal root ganglion) stimulator. I saw that you are looking at a spinal cord stimulator and thought I would mention that some doctors feel DRG stimulation is superior to SCS for CRPS. It took my insurance company 3-4 months to approve the stimulator. I am not certain I want to move forward with it. I am concerned that because I have multiple causes of my pain (nerve, shoulder, crps) and the doctors at Stanford have not been able to isolate exactly which nerves are involved, that it would be a miracle for a stimulator placed in 1 or 2 locations in my spine to impact all of the damaged areas in my arm/shoulder. I am also a bit gun shy because everything I have done up to this point has exacerbated my pain. I know the right thing to say is that I won't let my pain own me, but right now that would be a lie. I have lots of confidence and am an accomplished person, but pain has a way of humbling the best of us. Right now my pain is winning. I wish that wasn't the truth, but it is. I haven't given up, but this is quite a fight.

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@cindy78

Hello I’m Cindy’s and I was recently diagnosed with CRPS after an accident I had at work in 2019 to my left foot and the pain is absolutely intolerable. I’m seeing a pain management doctor which has me on gabapentin she also just prescribed terazosin and a cream to apply when I’m able to touch my foot. I had a nerve block done in January 2020 and I had a severe reaction to the steroid and ended up in the hospital so needless to say the nerve block didn’t work. My employer, friends and family do not understand the unbearable pain I’m constantly in. I was wondering if anyone has any advise or suggestions on how to deal with the pain or anything that has worked for them. I have an appointment to go to the Cleveland Clinic on Monday for more treatment. All suggestions and advice is very much appreciated. Thanks

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I don’t have CRPS but I have a lot of crazy chronic pain that can be anywhere on my body it seems . I am very skeptical of products that are not seen as mainstream FDA -approved treatments . But in desperation , my son bought me this CBD cream from Whole Foods – the name is ShiKai CBD BODY LOTION . I was amazed at the pain relief I got in my neck and otter joints or extremities . It is not cheap , but it is worthwhile . My husband has started to use it also for his hip and now he is a believer now .
I do hope you find something to relieve your pain/ I know how desperate you can feel at times . God bless you !

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Hi Has anyone done scrambler in Calif?

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@bayvino2121

I hear you and identify with much of your story!

I have a complicated story too (probably like most people here). I have been in chronic pain for nearly 5 years as a result of a botched shoulder/bicep surgery (not at Mayo). The surgery left me with nerve damage, structural shoulder damage and now CRPS. I have had 2 corrective surgeries to remove scar tissue on my shoulder, bicep and medial nerves near my bicep. I have had 10-12 nerve blocks, 5-6 steroid injections, countless hours of PT, and just spent 5 days at Stanford having Ketamine infusions. I spent 100 days at Stanford in the last 18 months seeing doctors having MRI's etc. All of this has left me in more and more pain. I am 64 and was a very good athlete but now I can barely use my right arm. Any movement or resistance irritates my arm/nerves. My World is upside down because movement is bad not good (ugh!). I am in so much pain that I need to lie in bed most of the day and ice my arm to cope. I take Lyrica (100 mg/3xday), Hydrocodone, and Lorazepam (to sleep). The only tangible step that I have left is putting in a DRG (dorsal root ganglion) stimulator. I saw that you are looking at a spinal cord stimulator and thought I would mention that some doctors feel DRG stimulation is superior to SCS for CRPS. It took my insurance company 3-4 months to approve the stimulator. I am not certain I want to move forward with it. I am concerned that because I have multiple causes of my pain (nerve, shoulder, crps) and the doctors at Stanford have not been able to isolate exactly which nerves are involved, that it would be a miracle for a stimulator placed in 1 or 2 locations in my spine to impact all of the damaged areas in my arm/shoulder. I am also a bit gun shy because everything I have done up to this point has exacerbated my pain. I know the right thing to say is that I won't let my pain own me, but right now that would be a lie. I have lots of confidence and am an accomplished person, but pain has a way of humbling the best of us. Right now my pain is winning. I wish that wasn't the truth, but it is. I haven't given up, but this is quite a fight.

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@bayvino2121 I just came across your post from December. Your story really speaks to me and I relate to your quest for pain management. How are you doing? How have you been managing?

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My daughter, age 32, has been dealing with crps in the left hip area for 5 years. Lidocaine infusions have helped but leave her groggy for most of the time. She also takes numerous antianxiety medications and medication for depression. She spends 23 hours a day in bed and uses a walker. She is unable to sit. We are looking for an in-patient program for ketamine. We feel that an inpatient program would be best given her emotional difficulties and medications. Is there a place that offers ketamine infusions in an inpatient program? She would want to follow up with a program for crps as well.
Thank you.

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@dmac5

Look up Spero Clinic in Fayetteville Arkansas. Dr. Katinka is doing some interesting things. Also, Scrambler therapy. Watch Dr. Chopra's lecture on CRPS via YouTube. There is a link between gut health and CRPS and possible link of MTHFR and CRPS. There is hope.

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First of all I want to say God is in control of ALL things. God gets me through every single day without fail. My father God is what I depend on. If I live or die I belong to Jesus. Since August 2016 I have had a closer walk with my saviour because of c.r.p.s. I pray a lot.

If you don’t have to worry about money being an object Dr. K in Fayetteville is Knowledgeable. The micro current and vector do offer some relief. However, I would personally recommend Dr. Rhodes in Texas, instead. Dr.K will have to go through him to get you a vector machine anyways. Dr. Rhodes is the one that made the vector machine and he is very knowledgeable and sympathetic he truly understands he made the vector machine to help his wife that had crps. He is very good with his patients. I have never heard a complaint about him.

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@bayvino2121

I hear you and identify with much of your story!

I have a complicated story too (probably like most people here). I have been in chronic pain for nearly 5 years as a result of a botched shoulder/bicep surgery (not at Mayo). The surgery left me with nerve damage, structural shoulder damage and now CRPS. I have had 2 corrective surgeries to remove scar tissue on my shoulder, bicep and medial nerves near my bicep. I have had 10-12 nerve blocks, 5-6 steroid injections, countless hours of PT, and just spent 5 days at Stanford having Ketamine infusions. I spent 100 days at Stanford in the last 18 months seeing doctors having MRI's etc. All of this has left me in more and more pain. I am 64 and was a very good athlete but now I can barely use my right arm. Any movement or resistance irritates my arm/nerves. My World is upside down because movement is bad not good (ugh!). I am in so much pain that I need to lie in bed most of the day and ice my arm to cope. I take Lyrica (100 mg/3xday), Hydrocodone, and Lorazepam (to sleep). The only tangible step that I have left is putting in a DRG (dorsal root ganglion) stimulator. I saw that you are looking at a spinal cord stimulator and thought I would mention that some doctors feel DRG stimulation is superior to SCS for CRPS. It took my insurance company 3-4 months to approve the stimulator. I am not certain I want to move forward with it. I am concerned that because I have multiple causes of my pain (nerve, shoulder, crps) and the doctors at Stanford have not been able to isolate exactly which nerves are involved, that it would be a miracle for a stimulator placed in 1 or 2 locations in my spine to impact all of the damaged areas in my arm/shoulder. I am also a bit gun shy because everything I have done up to this point has exacerbated my pain. I know the right thing to say is that I won't let my pain own me, but right now that would be a lie. I have lots of confidence and am an accomplished person, but pain has a way of humbling the best of us. Right now my pain is winning. I wish that wasn't the truth, but it is. I haven't given up, but this is quite a fight.

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I see you had Ketamine infusions. If you were taking Lyrica, hydrocodone, and the worse one of all with Ketamine infusions is a Benzo. All of these meds and many more block the effects of Ket. They fight each other preventing a person obtaining pain relief. Your doctor's must have been aware of this. There is a correct protocol for Ket. infusions for CRPS. Ten day 4 hours a day loading doses. The loading dose is 2mg Ket per Kiligram of body weight. A person also needs to be on a protective bladder protocol weeks before and after the infusions. Ket is known to destroy bladders. I found out the hard way. My bladder recovered. I have almost full-body CRPS type 2 from a misplaced steroid injection. and spousal abuse. I have been getting ket infusions for 11 years with a lot of pain relief. Research Spinal Cord Stimulators with CRPS. I have had 2 hugh messes with them. They are not for CRPS period. I will look for the information and research done with SCS. Please do not get one. What will all that electricity do to your nerves down the line? I still have the second one in. They say to traumatic to remove. However, they are sure up to putting a new one in. All about the big dollars. I wish you the best. Research Ket and the drugs not to be taking when getting infusions. I am retraining my brain using mindfulness and positivity. This is tough to do. I have tried everything for this miserable disease. Ket and positivity are the only things that have helped me. Also do not get IV Zofran if you have AFIB or any heart trouble with Ket infusions. Almost all depression meds are a no with Ket too.

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I have crps for the past 3 years. I’m on multiple pain meds and 3600mg of gabapentin. The best treatment so far has been ketamine infusions! I live in NY so it is very expensive but was well worth it. I went through treatments, pt, meds, creams, ganglion block etc but the only thing that helped to bring my pain down from a 10 to a 8 which to me was amazing… before Ketamine I could barely breathe or move without feeling like my skin was being hit with acid and after the 2nd treatment I could breathe again. Don’t get it twisted I still have pain usually consistently a 8 but I also have other health issues so it makes it complicated but the ketamine infusions definitely helped the crps so if you could afford it I highly recommend it because it does help even though I still am on pain medicine, it’s better even when you know that there’s help out there. Praying for anyone dealing with crps! May you get the help you need from this awful pain

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@drorvick

I see you had Ketamine infusions. If you were taking Lyrica, hydrocodone, and the worse one of all with Ketamine infusions is a Benzo. All of these meds and many more block the effects of Ket. They fight each other preventing a person obtaining pain relief. Your doctor's must have been aware of this. There is a correct protocol for Ket. infusions for CRPS. Ten day 4 hours a day loading doses. The loading dose is 2mg Ket per Kiligram of body weight. A person also needs to be on a protective bladder protocol weeks before and after the infusions. Ket is known to destroy bladders. I found out the hard way. My bladder recovered. I have almost full-body CRPS type 2 from a misplaced steroid injection. and spousal abuse. I have been getting ket infusions for 11 years with a lot of pain relief. Research Spinal Cord Stimulators with CRPS. I have had 2 hugh messes with them. They are not for CRPS period. I will look for the information and research done with SCS. Please do not get one. What will all that electricity do to your nerves down the line? I still have the second one in. They say to traumatic to remove. However, they are sure up to putting a new one in. All about the big dollars. I wish you the best. Research Ket and the drugs not to be taking when getting infusions. I am retraining my brain using mindfulness and positivity. This is tough to do. I have tried everything for this miserable disease. Ket and positivity are the only things that have helped me. Also do not get IV Zofran if you have AFIB or any heart trouble with Ket infusions. Almost all depression meds are a no with Ket too.

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There is a group on Face Book for more information on every thing about Ketamine. Both for mental health, chronic pain, CRPS, and others. It has a list of legitimate doctor's state by state and other countries. Also a list of Ket doctor's that follow proper protocol. Does any one know if it is alright to post the name of this group? I don't want to break any rules. I am also in two positivity groups. No unacceptable posts get in. Members are all considerate and caring of each other. I also am in a group that is real negative. Unacceptable posts get past administration. Scam type things out of other countries. A few of us stay in this group trying to post positive things to help. Right now I am on the Fentanyl Patch and Hydormorphone for other issues. I have bone on bone in both knees. My feet are a mess. No doctor will fix because of the CRPS. I wouldn't be able to walk with out the Pain medication. I am not using Ket at this time, but I need the compounded nasal spray again. This helps with burning and numbness even when I was on a lot more pain meds, Benzo's and Soma. Ket is also compounded in Troche's (these dissolve under the tongue), another type of sub-linquil, and capsules. Insurance may cover some, but not usually. I have also had Ket 7% in a compounded cream with Lidocaine5%, Gabapentin,
Trazadone, and some other things. Very expensive. It did not help. Didn't go deep enough. I feel like murrodic acid or hot fryer grease has been poured inside of me. Along with the other symptoms you all know. The nasal spray helps the most for me. It is 100mg Ket per ML. one spray in nostril every hour as needed. No two sprayers deliver the same dose it seems. I was using only half of a spray. You don't want it running down your throat or our of the nose.. I had relief in one minute that lasted for up to 4 hours. Also ask it be compounded using simple saline.
Sometimes what the Ket posder is reconstituted with caused my head inside to burn. You need to be careful with this as tolerance builds quickly. Also the proper bladder protocol. That is available in the Ket Face Book group. The best paharmcys to use are also listed. There are about 10,000 members that share information. If any one knows if I can share these groups here please post. I know the groups will help you. The support and understanding helps me. I wish every one the best. I care and know what you are enduring. I will check in tomorrow. Your friend, Doreen

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@no1likemo

I have crps for the past 3 years. I’m on multiple pain meds and 3600mg of gabapentin. The best treatment so far has been ketamine infusions! I live in NY so it is very expensive but was well worth it. I went through treatments, pt, meds, creams, ganglion block etc but the only thing that helped to bring my pain down from a 10 to a 8 which to me was amazing… before Ketamine I could barely breathe or move without feeling like my skin was being hit with acid and after the 2nd treatment I could breathe again. Don’t get it twisted I still have pain usually consistently a 8 but I also have other health issues so it makes it complicated but the ketamine infusions definitely helped the crps so if you could afford it I highly recommend it because it does help even though I still am on pain medicine, it’s better even when you know that there’s help out there. Praying for anyone dealing with crps! May you get the help you need from this awful pain

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I have CRPS. I’m sorry to hear you do, too. I went to an anesthesiologist who specializes in pain management. I could not get any type of medication to work on my body. My CRPS is in my legs. In March I had a permanent spinal cord stimulator implanted in my spine. I am using the Boston Scientific one. It has taken some time to adjust to it however, I do not regret putting this in at all! I strongly recommend it.

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