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CRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: Oct 25 3:58am | Replies (366)Comment receiving replies
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.
Replies to "I hear you and identify with much of your story! I have a complicated story too..."
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.
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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@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?