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.

I was diagnosed with 1 year ago after crushing my wrist. I’ve been taking a supplement that combines Palmitoylethanolamide (PEA) with luteolin, called “Mirica”. It has helped me more than anything. Reduced the pain by at least 4 points. Also LDN and bisphosphonates can be helpful. With CRPS it usually takes a combination of things to get symptoms under control.

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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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i was diagnosed 4 yrs ago with CRPS. I have had 2 nerves cut. each time the pain has jumped to another nerve. My dr. wants to cut the 3rd nerve but said he is 99 percent that it will jump to another nerve. I have been in the hospital 3 times with a bad infection caused by the tissue deteariating. Has anyone had similar experiences?

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I have had first RSDS and now CRPS. I have had it now for 21 years. I had a sympathectomy which didnt work. It started in my left ankle after a crush injury due to a forklift accident. I have had about 100 lumbar epidurals. Which helped alot until it wore off. I was then put on Methadone tablets to help control the pain. That was 21 years ago and i am still on the Methadone which now carries its own problems. I have suffered with depression and anxiety for the same amount of time. Many times i had thought of laying my leg on a train track as it would be quick and easy. But never did as i am to scared to do it. It has been an utter nightmare. I am now 61 years old. And i dont think its going anywhere soon. I am also on Citalopram, Proprananlol. I have tried Fentynl. But didnt like the way it made me feel. Gabapentin. Not on it now. It is very difficult to find a doctor that believes you and trying to convince family members its not all in your head. (Well i guess it is in a way) but it doesnt affect all people the same way it has affected me. Some get it alot worse and some get rid over time. But unfortunately not me.

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Wow! I too have a similar story, only mine is truly in my head. A stroke 7 years ago left me with a central pain syndrome. The kicker is, nowhere on the painful leg is there any type of damage to cause the pain. The issue is the normal messages the brain receives are being perceived as pain in my stroked out brain. So what to do. Well, I’ve tried a lot of things from amitryptitalline (spelling?) to acupuncture, opiates, physical therapy, massage, and excersise. Currently using 100 mcg Fentanyl patches q72 hrs, Norco 10 for breakthru, on Gabapentin and Neurontin to slow down and misdirect the messages to the brain so they won’t be perceived as pain. And I can tell the difference when I don’t take them. And more drugs for the side effects of the above: depression, constipation, etc. I’ve had to go on an ASV MASK and Machine which is like a souped up Bipap only it has the ability to act like a ventilator if needed; because of the effect of the drugs slowing my breathing so much that I now have sleep apnea. I’ve lost over 40 pounds since the stroke and am Immune Deficient. More drugs for that. I started using Pure Organic Medical Grade Essential Oils (EO) to help with the pain because as you know, after being on the opiates for so long, ive built such a tolerance that the opiates don’t manage the pain like they used to and with the FDA going nuts in the ‘opiate craze’ as the FDA likes to call it, my MD won’t go up on my Fentanyl nor shorten the time between changes, although we’ve done both before. He’s also cut my Norco down so that I get less than I use too. Although that’s not his fault but the pharmacy, they won’t fill over 120 pills at a time. Well, I’ve spilled my guts here. I do want to encourage you to try the EO’s. They have really saved my life and really do actually work against pain and inflammation. I signed up as an associate with no responsibility to purchase more than an original kit ( which did contain 7/10 items I could use for pain & inflammation. This also allowed me to purchase EO at wholesale prices, so I could get the extra items to use for pain as I learned more about EO’s. Hope some of this helps.

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@knowles

Wow! I too have a similar story, only mine is truly in my head. A stroke 7 years ago left me with a central pain syndrome. The kicker is, nowhere on the painful leg is there any type of damage to cause the pain. The issue is the normal messages the brain receives are being perceived as pain in my stroked out brain. So what to do. Well, I’ve tried a lot of things from amitryptitalline (spelling?) to acupuncture, opiates, physical therapy, massage, and excersise. Currently using 100 mcg Fentanyl patches q72 hrs, Norco 10 for breakthru, on Gabapentin and Neurontin to slow down and misdirect the messages to the brain so they won’t be perceived as pain. And I can tell the difference when I don’t take them. And more drugs for the side effects of the above: depression, constipation, etc. I’ve had to go on an ASV MASK and Machine which is like a souped up Bipap only it has the ability to act like a ventilator if needed; because of the effect of the drugs slowing my breathing so much that I now have sleep apnea. I’ve lost over 40 pounds since the stroke and am Immune Deficient. More drugs for that. I started using Pure Organic Medical Grade Essential Oils (EO) to help with the pain because as you know, after being on the opiates for so long, ive built such a tolerance that the opiates don’t manage the pain like they used to and with the FDA going nuts in the ‘opiate craze’ as the FDA likes to call it, my MD won’t go up on my Fentanyl nor shorten the time between changes, although we’ve done both before. He’s also cut my Norco down so that I get less than I use too. Although that’s not his fault but the pharmacy, they won’t fill over 120 pills at a time. Well, I’ve spilled my guts here. I do want to encourage you to try the EO’s. They have really saved my life and really do actually work against pain and inflammation. I signed up as an associate with no responsibility to purchase more than an original kit ( which did contain 7/10 items I could use for pain & inflammation. This also allowed me to purchase EO at wholesale prices, so I could get the extra items to use for pain as I learned more about EO’s. Hope some of this helps.

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Gosh i am so sorry to hear what you have been through. I forgot to mention on my original post that i was diagnosed with lung cancer in 2015.(thought i had pulled a back muscle that didnt get better with time) i ended up having tumor attached to my ribs that apparently was the size of your fist. I had a lobectomy and a resection(removed left lower lobe and 4 ribs) and patched the area. I had 1 session of chemo and ended up in hospital sick as a dog. So i didnt want to end up killing myself to live. I have my third annual xray this may. And every time they come around i get terribly stressed and scared to death as thr drs.told me the type i had was a very aggressive type of cancer. So aswell as this coming around annually and the high stress my crps tends to act up alot more. I will give what you said a try

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@knowles

Wow! I too have a similar story, only mine is truly in my head. A stroke 7 years ago left me with a central pain syndrome. The kicker is, nowhere on the painful leg is there any type of damage to cause the pain. The issue is the normal messages the brain receives are being perceived as pain in my stroked out brain. So what to do. Well, I’ve tried a lot of things from amitryptitalline (spelling?) to acupuncture, opiates, physical therapy, massage, and excersise. Currently using 100 mcg Fentanyl patches q72 hrs, Norco 10 for breakthru, on Gabapentin and Neurontin to slow down and misdirect the messages to the brain so they won’t be perceived as pain. And I can tell the difference when I don’t take them. And more drugs for the side effects of the above: depression, constipation, etc. I’ve had to go on an ASV MASK and Machine which is like a souped up Bipap only it has the ability to act like a ventilator if needed; because of the effect of the drugs slowing my breathing so much that I now have sleep apnea. I’ve lost over 40 pounds since the stroke and am Immune Deficient. More drugs for that. I started using Pure Organic Medical Grade Essential Oils (EO) to help with the pain because as you know, after being on the opiates for so long, ive built such a tolerance that the opiates don’t manage the pain like they used to and with the FDA going nuts in the ‘opiate craze’ as the FDA likes to call it, my MD won’t go up on my Fentanyl nor shorten the time between changes, although we’ve done both before. He’s also cut my Norco down so that I get less than I use too. Although that’s not his fault but the pharmacy, they won’t fill over 120 pills at a time. Well, I’ve spilled my guts here. I do want to encourage you to try the EO’s. They have really saved my life and really do actually work against pain and inflammation. I signed up as an associate with no responsibility to purchase more than an original kit ( which did contain 7/10 items I could use for pain & inflammation. This also allowed me to purchase EO at wholesale prices, so I could get the extra items to use for pain as I learned more about EO’s. Hope some of this helps.

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I have CRPS . I have just injured my knee by twisting it ever-so-slightly. But because i have CRPS from the hip down on the left leg which is the one with CRPS. It has agravatted the crps. So well i am in extruciating pain now all down my leg rather than just my knee. The leg has a real issue with hyper-sensitivity all the time. Even a wee bang on the leg is 100x more painful than it should be for the injury. Anyone else have the same problem with hyper-sensitivity and terrible nerve pain from a lesser injury? And should i tell my GP i have injured my knee which has intensified the pain in my whole leg. All this whilst suffering with clinical depression and anxiety.
Gosh i really hate this chronic pain disease.

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Oh my god. I cant imagine a young person having to live with this terrible pain disease. I have had it for about 24 years now. It can go into a slight remission when the electrical, burning stabbing and horrible pain. I have extreme sensitivity with mine. If i hit or bump into something the pain,well, is extreme. If i pull a muscle it takes longer to heal than if it was a normal pull. I am sorry to give you advice on some of the horrible symptoms but i dont know of anything good to say about it.
I DO HOPE it goes into remission soon. I have had loads of different treatments over the years.even a sympathectomy. But will share those with you if you wish at a later time.
All the best.

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@knowles

Wow! I too have a similar story, only mine is truly in my head. A stroke 7 years ago left me with a central pain syndrome. The kicker is, nowhere on the painful leg is there any type of damage to cause the pain. The issue is the normal messages the brain receives are being perceived as pain in my stroked out brain. So what to do. Well, I’ve tried a lot of things from amitryptitalline (spelling?) to acupuncture, opiates, physical therapy, massage, and excersise. Currently using 100 mcg Fentanyl patches q72 hrs, Norco 10 for breakthru, on Gabapentin and Neurontin to slow down and misdirect the messages to the brain so they won’t be perceived as pain. And I can tell the difference when I don’t take them. And more drugs for the side effects of the above: depression, constipation, etc. I’ve had to go on an ASV MASK and Machine which is like a souped up Bipap only it has the ability to act like a ventilator if needed; because of the effect of the drugs slowing my breathing so much that I now have sleep apnea. I’ve lost over 40 pounds since the stroke and am Immune Deficient. More drugs for that. I started using Pure Organic Medical Grade Essential Oils (EO) to help with the pain because as you know, after being on the opiates for so long, ive built such a tolerance that the opiates don’t manage the pain like they used to and with the FDA going nuts in the ‘opiate craze’ as the FDA likes to call it, my MD won’t go up on my Fentanyl nor shorten the time between changes, although we’ve done both before. He’s also cut my Norco down so that I get less than I use too. Although that’s not his fault but the pharmacy, they won’t fill over 120 pills at a time. Well, I’ve spilled my guts here. I do want to encourage you to try the EO’s. They have really saved my life and really do actually work against pain and inflammation. I signed up as an associate with no responsibility to purchase more than an original kit ( which did contain 7/10 items I could use for pain & inflammation. This also allowed me to purchase EO at wholesale prices, so I could get the extra items to use for pain as I learned more about EO’s. Hope some of this helps.

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Hi @daddylonglegs, I've been following your messages on Connect. First of all welcome. Second, I'm sorry to hear that you just injured your knee and that with CRPS, a slight twist is a big deal of pain. While I don't have CRPS, I would think it is a good idea to mention this hyper-sensitivity to your doctor. Do you only experience the hyper-sensitivity in the leg or elsewhere too?

I read that you are a lung cancer survivor, too. I invite you take part in the discussions in the Lung Cancer group. Would you like to start by introducing yourself here:
Living with lung cancer – Introduce yourself & come say hi https://mayocl.in/2m0p4ZO

Pain and depression often go hand-in-hand. Several members of the chronic pain group also share in the Mental Health group. https://connect.mayoclinic.org/group/mental-health/

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@knowles

Wow! I too have a similar story, only mine is truly in my head. A stroke 7 years ago left me with a central pain syndrome. The kicker is, nowhere on the painful leg is there any type of damage to cause the pain. The issue is the normal messages the brain receives are being perceived as pain in my stroked out brain. So what to do. Well, I’ve tried a lot of things from amitryptitalline (spelling?) to acupuncture, opiates, physical therapy, massage, and excersise. Currently using 100 mcg Fentanyl patches q72 hrs, Norco 10 for breakthru, on Gabapentin and Neurontin to slow down and misdirect the messages to the brain so they won’t be perceived as pain. And I can tell the difference when I don’t take them. And more drugs for the side effects of the above: depression, constipation, etc. I’ve had to go on an ASV MASK and Machine which is like a souped up Bipap only it has the ability to act like a ventilator if needed; because of the effect of the drugs slowing my breathing so much that I now have sleep apnea. I’ve lost over 40 pounds since the stroke and am Immune Deficient. More drugs for that. I started using Pure Organic Medical Grade Essential Oils (EO) to help with the pain because as you know, after being on the opiates for so long, ive built such a tolerance that the opiates don’t manage the pain like they used to and with the FDA going nuts in the ‘opiate craze’ as the FDA likes to call it, my MD won’t go up on my Fentanyl nor shorten the time between changes, although we’ve done both before. He’s also cut my Norco down so that I get less than I use too. Although that’s not his fault but the pharmacy, they won’t fill over 120 pills at a time. Well, I’ve spilled my guts here. I do want to encourage you to try the EO’s. They have really saved my life and really do actually work against pain and inflammation. I signed up as an associate with no responsibility to purchase more than an original kit ( which did contain 7/10 items I could use for pain & inflammation. This also allowed me to purchase EO at wholesale prices, so I could get the extra items to use for pain as I learned more about EO’s. Hope some of this helps.

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@daddylonglegs I would suggest you have the knee checked out by your GP at a minimum. With the CRPS, it may be worse than you you would ever know because of the all over leg pain. If that is the case and if it is not addressed, even if your CRPS gives you a few easier days, your knee may still cause remarkable pain. I do know that the last thing any of us who see way too many dr. offices regularly that we hate to go for any "new" reason, but it could do more harm in not going. I do hope it gets better regardless of how you address it.

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My sister has been diagnosed with a severe case of this illness, but it's given no real solution or means to ease her pain. Is there anyone out there that is in this similar situation. I am just dumbfounded that she can get no help or treatment for this.

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@twztdktty

My sister has been diagnosed with a severe case of this illness, but it's given no real solution or means to ease her pain. Is there anyone out there that is in this similar situation. I am just dumbfounded that she can get no help or treatment for this.

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I have it as a result of a fall from a seizure that broke my sacrum, hip, pelvis ankle and leg, severed my sciatic nerve, busted my head open and was unconscious in the hospital for four days. I was released from ICU despite my screaming in pain and it went undiagnosed for 3 months. I lost the use of my left lower leg as the nerves never regenerated and ligaments were damaged beyond repair. I went through several 12-week in-patient hospitalizations for brain/spine injuries where PT was the focus. My prognosis was “Pain, PT, and Prayer”. I was already disabled by a neurodegenative disease with unbearable pain and I had No Idea how much worse it could get. My CRPS spread and strong opiates was my only option as I cannot pursue any of the surgical options. The opioids aren’t a solution either; merely a bandage with harsh consequences. Being mentally strong is hard but necessary as living with RSD is beyond challenging. It has destroyed my bone density and physical therapy results in breaks with any pressure. I was already in a wheelchair when I had the seizure that lead to CRPS Type II. Seek out a neurosurgeon and a pain management specialist for this specific reason. I found my existing team was limited and couldn’t see past my other health issues to treat the #1 Chronic Pain disease on the pain scale. I relied heavily on my therapists to help me see the forest through the trees. There’s a website called RSDHope.com and I am meeting with another specialist in this field in a few weeks. It’s been five years for me come this October. I have met many people that have been able to manage this!! I hope we can all find a path of understanding and relief from something that is very much misunderstood.

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Does anyone else in the group have CRPS/RSD? What is your primary site? Is anyone’s primary site their jaw? (Me). Has it migrated to other body parts? When were you initially diagnosed? How does CRPS affect your daily life?

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