CRPS - anyone suffering with complex regional pain syndrome

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.

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 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

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

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.

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.

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.

Foot issues and CRPS symptoms:

I’ve had CRPS symptoms for over a year and it’s time I go somewhere to get treated and I’m not talking about just nerve blocks small device is inserted in the spine, I need to figure out where to go to get my nervous system re-balanced the Academy injections or lidocaine injections. Help please 🙂

Hello, I am sorry to hear you have been suffering and not finding relief.
Can you tell me a little more about what you have tried so far? Do you know the cause of the foot pain, or did something happen to get you into this cycle?
It will be easier for others to respond with a little more information about your history.
Sue

Absolutely! Everything started a year and a half ago with a orthopedic surgeon removing a couple of fibromas off of my right foot near the big toe pad. Apparently, he must’ve gotten too close to the medial plantar nerve and either nicked it or scar tissue built up around it so it threw off the communication of the nerve to my nervous system and that set off a cornucopia of bad things. About a month after the surgery I started really experiencing nerve pain in both feet and I also had five fibromas developing in my left foot almost instantaneously after the surgery which is very weird to both my podiatrist and myself. I’ve tried Tenex procedure which is a vibrating needle to remove the damaged tissue, I tried radiation and I’m also getting ready to try a medical grade 4 laser to try to heal my plantar fasciitis which also stemmed from the procedure a year and a half ago. Information, I’ve tried pretty much everything under the sun and I’ve also seen a neurologist, pain specialist (who tried to give me nerve blocks which did very little), two separate podiatrist one of which is a nerve specialist who wants to remove all of my fascia in both feet which I am a bit hesitant to do especially considering the fact that I am CRPS symptomatic. The one great thing about this, from what I understand CRPS pretty much involves 24 / 7 pain and I do not experience that which is definitely a God thing. I have intermittent pain and sometimes the pain is pretty severe but typically it settles down within a day or two. at the moment, I haven’t been able to walk for the last 2 1/2 months due to the tenex procedure and my feet are usually red, hot and swollen. I’m also a retired Air Force veteran with over 26 years in the service I really wish there was a program that I could attend at your hospital to help me but I highly doubt that’s the case. If it all possible, feel free to **send me a private message** and I’ll be more than happy to discuss this in detail. I’m gonna get through this, God‘s got me but I might be able to use your help 🙂