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CRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: Apr 27 4:59am | Replies (349)Comment receiving replies
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.
Replies to "I see you had Ketamine infusions. If you were taking Lyrica, hydrocodone, and the worse one..."
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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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