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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@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 am so sorry. I have been in pain for 15 years after shattering my femural head. I was diagnosed in 2007 with CRPS but fought hard not to be labeled. As you can imagine it’s been a long arduous road. So sick of narcotics and detoxing. Just did that again. I got a new knee in December and while I do have pain still I have hope – because of my awesome PT that maybe some of my pain was from an unusual gait. Anyhow, I just want you to know that I am so sorry you are suffering. The only thing we can do is keep trying because the alternative is just too much. I too am? Was an athletic, 64 professional women. Not the life I was hoping for, but I won’t give up on hope.

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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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My left arm felt as if it was being grilled in a BBQ because of CRPS. I agree on not getting an implanted SCS. I went through 2 surgeries over 9 years and it messed me up more than it helped. I was getting pain from the SCS! It isn’t a difficult surgery to have the SCS removed – outpatient surgery. I’m 11 years into having end stage CRPS. I’m 6 on the pain scale. No more stellate ganglion nerve blocks. My interventions are lidocaine 5% patches, Ativan 1 mg. daily, CBD hemp oil 50mg as nessessary, ibuprofen 600mg. (every other day – as tolerated), heat & mild exercises to the arm and of course distract, distract, distract. My heart goes out to all the CRPS sufferers. This has been such a long decade plus journey with chronic pain.

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