Reaching out to fellow RSD suffers

Hi LordWood,

I see that you only joined this month, so welcome to HW :)

I have had CRPS for 12 years now. My story is in various places on this site, but I have full-body CRPS (including internal involvement and other complications), stemming from a minor knee injury and surgery when I was 14.

How long have you had CRPS for? How did yours start? Where are you affected?

Laura

Hello CRPSpatient, I've been dealing with RSD for over 8 years now. Mine started from my left foot getting stepped on within two days my foot was dark purple with white blotches, extreme sensitivity, the foot was beyond ice cold. Temperature change hurt it as well. Went for 5 months on crutches before getting to Dr. Sherry. During those 5 months I had ever pain med thrown at me as well as nerve block which made it worse.

Once I got to Dr. Sherry I went through his intense physical therapy program. Which is a program that makes boot camp look like baby camp. But out of every treatment on this earth right now his program has put more people into remission than anything else. Sadly I was not one of them, he helped me learn to walk again and deal with the pain in my feet but after mine went internal his program did not help me at all.

2003-Left Foot
2006-Both Knees, Both Hands & Wrists, & Chest Wall
2007-Caused Gastroparesis, Nerves around the heart
2008-Both eyes
2009-Respiratory failure
2010-Tried to reclaim both feet

theres a little idea of what its done. That doesn't include all the hospital visits and treatments.

So you went for ketamine infusions how did it go? my friend gets them and shes back to being able to work and function.

Hello tmjpain and glad to meet you as well. First off I am very sorry to hear about your headaches/migraines I had an aunt that had them very bad. Migraines/headaches are usually linked to heart disease so hopefully your not having any heart issues. I am sorry to hear the ketamine did not work for you, did your doctor work with you to keep upping the dosage? As I know with ketamine you have to work with it and keep raising the level to find what works for you. Some doctors don't like to push and give up to easily so I hope this was not the case for you.

RSD is a very strange disease that still is vastly unknown about because even as advanced as we are in the medical field we still are lost in the idea of the understanding completely the nervous system. It's also bizarre in the aspect that youth RSD is a completely different world from adult RSD. In terms of the youth you are correct it is predominantly females that have it. To be exact 80% of the youth that get RSD are females. No I am not a female, I am a male and one of the very unfortunate and unlucky males to get RSD. I started with RSD at age 13 and am now 21, while yes my 8 years is not as long as others I've met that have been dealing with it for decades I do have the experience of having went through more treatments, meds, and top RSD specialists just like those that have had it for decades and having had my RSD progress faster and do extreme stuff of those with decades of having it.

I know you probably have tried everything all ready but might I suggest you try a mixture of Baclofen and Dilaudid? What meds have you tired I guess I should ask.

I can't get used to this spacing lol drives my eyes nuts with all the white in between.

CRPSpatiet- We are sure its the RSD, true narcotics can cause issues but when narcotics have no effect on your system not even so much as a withdraw after dropping high doses cold turkey. Gastroparesis is caused by damage to the main nerve that controls the opening and closing of the stomach to allow food through. Usually it is the elderly or those that have gastric bypasses that damage that nerve that have gastroparesis. Mine came out of no where and confused my doctors not only due to my age. My crohns was blamed at first because in instances it can cause gastroparesis as well but if it were the crohns it would have happened years ago. Another factor was after having the gasto emptying test and it was found I had mild at that time but we believe now 4 years later were beginning to think it has worsened. You are correct a lot of people on narcotic have side effects from the pill and have a little delayed gastric emptying.

I am severely intrigued in how gastroparesis almost killed you? Mine started out of no where and immediately made me lose 24 pounds which I am slim/skinny as it is so I looked like death. They did a ng tube on me as I could not eat at all because of severe nausea which even with anti-nausea meds used for chemo it still did nothing to help with my nausea. The NG tube was a huge fail with feedings cause all it did was make my stomach fill up with that sick nasty feeding liquid and caused acid reflex to the point that stuff was coming back up. They then did a NJ tube which that in the end failed to. Overall I found that I would just have to live with the nausea and force myself to eat what I could. I try to get one meal down a day and sometime I don't eat at all other then small snacks. The nutritionist I had while I was hospitalized in the beginning told me to try six small meals a day and that did nothing but make me even worse. I've learned to deal with the fact I will always be skinny due to a fast metabolism, gastroparesis, and crohns.

Sorry to hear about the ketamine infusions giving you trouble. I wish I lived in Australia its a lot harder to get infusion treatments done her in the US. Although your where the ketamie infusion treatments were created. RSD is a disease that is non-forgiving and basically like a puppet master it controls its host and will do whatever it wants whenever it wants and your basically at the mercy of it. It is true younger suffers have the greatest chance of remission but even older people do as well because if it is caught early almost 80% of people can find remission through intense physical therapy and for the older people a physical therapy and nerve block routine. In the US we have Dr. David Sherry which is the top pediatric RSD specialist in the world literally as other countries have sent teams to study his physical therapy program and bring it back with them to set up in there countries. His intense physical therapy program is only for the youth up to about 19 because the program is physically impossible to do unless your younger. The adult body just cannot do it. Its very intense and as I put before in my one post it literally makes boot camp look like baby camp. But it results in the most suffers finding remission of any treatment. I was through the program 3 times and am sadly one of the very few who was unable to be lucky enough to get remission. But I met and went through the program with a lot of others that did obtain remission. which most were girls in my three times there I only ever saw one other male.

I am very sorry for your progression and I feel for you I know what it is like. I see you are 26 now and your started when you were younger as well so you know first hand how this disease can destroy your life, take away your friends and family and leave you alienated. I did send you an email so hopefully you got that. I notice you have a spinal cord stimulator hope that gave you better results then mine, they couldn't even put it in as my rsd flipped out and almost killed me. You also have a intrathecal pump with baclofen & bupivacaine dose that help at all either?? i have a friend that has the pump and gets fentynol and bupivacaine and it works enough for her not perfect but some. They did an epidural at the top of my spine and put that bupivacaine in but it did nothing for me so they told me a pump would not be an option as it would not help. I was on baclofen for a good while but on pill form 20mg 4x daily but I got tired of pills and basically gave up just about all of them except 3 pills and my injections for crohns. Hope to talk more.

I believe they did put another two pain meds in through the epidural but whatever they were they didn't do anything. Which it kinda makes sense in my case as screwed up as my nerves are nothing is going to work by pill form or in the spinal cord fluid as the spine is part of the nervous system its all nerves. Give you a clue how screwed up my system is I went cold turkey off being on Oxycontin 80mg 4x daily and methadone 20mg 4x daily at the same time and did not have a single withdrawal problem or issue (i'm that way with just about all meds), That would result in death or coma for most people. My doctor calls me the immortal lol I tell him its a curse. I've also had IV dilaudid an 8mg bolus put in and it did nothing only reason we didn't go higher was because the hospital literally won't do it they think I'm a freak of nature cause of how screwed up my body is. I also was in the hospital for a lidocaine infusion treatment and that didn't work either. Basically ketamine infusion and prialt pump are the only things that have been deemed might help me that I haven't done yet simply because of my insurance but that's being worked out.

Wow your doctor that was treating you should have lost his licence to let you get that bad! I'm sorry you had to go through that. See you have Gastroparesis due to RSD like I do which is far from a simply side effect of narcotics of some gastric emptying as you and I have and always will have the problem others simply go off the meds and are fine. Laura it is and please call me Austin. I'm here to chat whenever you like, as I mentioned previous I sent you an email so you have that as well. Glad to meet another trooper.

I wasn't saying you didn't know, I was pointing out the obvious difference of RSD gastroparesis vs side effect gastric delaying and how RSD can cause other issues. I see I didn't know you resisted hospital treatment I thought you just didn't get treatment cause your doctor let you go. That's good you've got a good one then. The hard part is with gastroparesis from RSD there is no help like normal people with gastroparesis unlike them reglan doesn't work for us and the NJ tube feedings don't work either. Were forced to simply learn to live with it. The joys of all ready having to deal with an unimaginable pain and then to add on more complications like we don't have enough to deal with.

Through talking with other RSD patients that have had close to death experiences as well I've come to the general opinion that this puppet master will not let you die until its done having fun torturing you. In my opinion of course as how else do you explain some of the occurrences. This disease is unlike anything else and doctors, even the ones claiming to be specialists and having studied neurology for years are really still the students in the suffer to doctor situation. As each persons RSD is different and you are truly the one that knows the most as your dealing with it. A good doctor knows this and works with you hand in hand. That's the only way to work towards getting help.

Another thing I'm sure you notice is the medications making you nauseated even more just sitting there. For me after the gastroparesis started medications were harder to take because all they did was make me worse with my nausea, there worthless anyway so I took myself off them and only take the ones that are somewhat useful. Anyway again its been nice to meet you Laura and hope your having a hopefully a good morning as thats what I'm guessing its there.