Reaching out to fellow RSD suffers

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LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/22/2011 1:43 AM (GMT -6)   
I would like to extend support to anyone dealing with RSD (Also known as RND & CRPS). I have been dealing with this monster since I was 13, it has destroyed my life as well as my family and friends. I've lived in the medical field ever since seeing a lot of specialists even the top ones and doing almost every treatment available.
 
Throughout my experience with this disease I've met a lot of people, fellow suffers some of which have been fortunate enough to achieve remission and others that are like me still searching for even something to be able to manage us.

After treatment after treatment and pill after pill failed and then specialist after specialist giving up not knowing what to do next and hospitals turn you away because your to advanced for them to deal with you start to find that the best support and strength against this monster is through the communication with other suffers, as no one else can even begin to imagine what this disease is like, that being said everyone's RSD is different but yet know what its like.

Should any fellow suffers out there wish to talk or wish to ask info on treatments on medications I am here for you and if you have Facebook you are even more welcome to join my private group of RSD members that together we have over many years of experience and know this disease quite well as we range from anywhere of a couple years of dealing with it to some that have been dealing with it for over 24 years.
 
 I created the group not only to help create a support group for my closest RSD friends but for use to be able to help others on more of a personal level instead of so many groups where you post concerns or questions and are either bombarded by 50 different answers or completely ignored.

By personal basis I mean that each of us help each other out and help to make sure the answers and information given are reliable as we had found from other sites people where being misguided. Plus its the benefit of our experience that is a great help to others, especially so you don't have to be lead into treatments which only make you worse and the sole purpose is nothing more then the greed of doctors which once they do what they want and it doesn't work simply either pass you on to the next or their egos get in the way with the idea that if they can't cure/help you then no one can and simply abandon you.
 
 To many RSD patients are filed in for treatments that they do not need to have when they can get help far better results but because of that promise of hope from this or that so called treatment doctors prey on suffers because of false hope.

The hope that you'll try anything to be rid of the pain. Which sadly many screw up there attempts at remission because of being misguided. Another item is RSD comes in 5 levels this crps I & II scheme is nothing more then keeping it simply for doctors, RSD is not simple and never will be. Anyway should any of you wish to talk reply back I am up almost all the time so you will not go unheard. I wish you all better pain free days!!



Edited for easier reading. Please split up your paragraphs in future replies.Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 8/22/2011 8:37:03 AM (GMT-6)


CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1148
   Posted 8/22/2011 9:10 AM (GMT -6)   
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
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 11300
   Posted 8/22/2011 1:36 PM (GMT -6)   
Lordwood, I responded to a post of yours on another thread here and provided some info to you. You had questions for Tina about some of her medications. I see that CRPS responded above, she recently tried the Ketamine infusions.

As I had mentioned in my first post to you, if you will use the search feature here at the forum and type in Ketamine infusions you probably will see CRPS/Laura info on the infusions.

Take care.
Moderator Chronic Pain Forum

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/22/2011 3:57 PM (GMT -6)   
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.
I currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2021
   Posted 8/22/2011 5:41 PM (GMT -6)   
Hi Lordwood
Glad you are joining us here at this wonderful forum. The members are great caring people and very understanding.
 
Sorry that you are suffering with CRPS. It is an awful illness and i know you must be suffering greatly. I have looked after children with this illness and it sure broke my heart to see these little ones in horrible pain. I assume it is a predominantly female illness as I have not heard of any men having this, but not positive.
 
It appears to be very difficult to get any medications to help with this pain. I sure hope you will be able to find something. I see you mentioned trying ketamine. Myself I suffer from constant headaches and after trying everything my pain doc tried me on ketamine. I had started receiving this at home, first via subcutaneous infusion and then to a PIC line. I had three sets of infusions each lasting three weeks, one week off and back on. Unfortunately it did not help my pain. The idea with this is to try and reboot the nervous system and get things back on track. So at the moment i have nothing that helps my pain. I hope something new will pop up in the research for headaches.
 
I also hope that you can find some relief soon as well. May I ask how old you are? It seems those with this illness are so young. And i assume you are female.
 
Glad you joined us here and i look forward to chatting with you.
 
Suzane

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/22/2011 7:26 PM (GMT -6)   
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.
I currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1148
   Posted 8/22/2011 7:45 PM (GMT -6)   
It's interesting to see that you say your CRPS has caused gastroparesis - are you/your doctors sure this is the case, or is it more due to the effects of the medications you're on. I'm not doubting you for a second by the way - I have GP caused by CRPS and nearly died as a result - also have other autonomic issues (brady- & tachycardia, severe orthostatic hypotension), but a lot of CRPS patients have a degree of delayed gastric emptying and aren't always aware that it is often caused by medications - opioids in particular are fairly notorious for causing this!

Ketamine - I have had four inpatient infusions. One was several years ago and caused a few problems with my heart so we gave up on the idea for some time. We tried again late last year and that gave me relief while in hospital, and for three days after, the others have given me nothing. One of my biggest problems is that I am extremely sensitive to it. A normal infusion dose as my doctor does it is anything from about 10mg/hr to 50mg/hr. I start getting very sick and dysphoric on 6mg... I consider it a treatment well worth trying for CRPS patients though - it Is very commonly done here and I know a lot of people who've been through it. Most experience at least a few weeks relief and I know of at least two who are still in remission several years on.

Your progression sounds like mine, once mine took off -
1999 - right knee
2005 - had more surgery on right knee > spread to rest of my right leg
2008 - entire left leg, back (following SCS revision surgery), both hands, arms
2008 - gastroparesis, tachycardia
2009 - nearly died from gastroparesis
2009/2010 - bradycardia/tachycardia, orthostatic hypotension
2010 - flares involving face
2011 - renewed involvement of both arms, shoulders, ribs, chest wall

As far as pathophysiology goes, there is a lot more being discovered. I have a recent article that covers a lot of interesting material. If you are interested, drop me an email and I'll send it to you.

Suzane, it's true that more females than males tend to be affected, but a great many men/boys are affected by this also. It's becoming more commonly diagnosed in children (I suspect probably because it's becoming better recognised) but I think it's most common among the middle aged. The 'good' thing about CRPS in children is that they have a much higher rate of remission than adults - maybe because their nervous systems are still so dynamic and have the capacity to be retrained more easily?

Laura

Post Edited (CRPSpatient) : 8/22/2011 6:57:47 PM (GMT-6)


LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/22/2011 8:50 PM (GMT -6)   
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 currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1148
   Posted 8/22/2011 9:24 PM (GMT -6)   
LordWood- call me Laura :)

The gastroparesis almost killed me because I almost starved to death. I am doing better now than I was on that front (for reasons unknown - and I am not one to look a gift horse in the mouth!), but when my GP was at its worst, and even now when I go through bad patches, I don't keep anything down. I eat, then 2,4,6 hours later it comes up again. I saw my GI specialist just last week and we were talking about how sick I was two years ago - he told me then that he'd never had such a critically ill patient as me survive before - basically think of the images of concentration camp prisoners, or the some of the the worst photos of anorexia nervosa sufferers, and that was me. I'm 5'4 and I weighed about 60lb. The one drug that made a small difference to me, I can't have because of heart issues/ECG abnormalities.

My pump helps, but only indirectly with pain. I have dystonia of my lower legs, ankles and feet, which means that the muscles are in a kind of constant spasm resulting in contractures through my ankles - my feet have now twisted around and under like a club foot. The pump helps to relax the muscles and stops any acute spasms (baclofen tablets didn't help me) - thereby does reduce my pain a little. Did they try injections of other drugs with you, or just the bupivacaine?
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/22/2011 10:11 PM (GMT -6)   
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 currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.

Post Edited (LordWood) : 8/22/2011 9:14:20 PM (GMT-6)


CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1148
   Posted 8/22/2011 10:33 PM (GMT -6)   
Yes, we know that mine is caused by the CRPS. I was just making a general point.

It was not my doctor's fault that I got that bad - we tried medications, Botox, every nutritional supplement under the sun, and I resisted hospital treatment far too long. Even once I agreed to an NJ tube, the enteral feeding stuff made me sick. My doctor is a wonderful man - without his effotrts I wouldn't be alive...
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

LordWood
Regular Member


Date Joined Aug 2011
Total Posts : 59
   Posted 8/22/2011 11:03 PM (GMT -6)   
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.
I currently take: Cimzia 2-200mg injections, Zolpidem 5mg 1x daily, Vyvanse 70mg 1x daily, Dilaudid 8mg 4x daily
Health Issues: RSD, Crohns, Gastroparesis, Arthritis, Osteoporosis, Dysautonomia, & Remicade Induced Psoriasis.
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