Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi Shayna, There was an abstract at the UMDF conference written by Dr Boles regarding the association of RSD/CRPS to maternally inherited mitochondrial disease. Apparently he has quite a few patients who have both. It was a pretty interesting abstract. I'm not sure if it's published yet. Malisa In a message dated 6/30/2006 12:45:26 P.M. Eastern Standard Time, happyclam8@... writes: Dear Enrique, I noticed that some of the mito folks in your family have Complex Regional Pain Syndrome. Would you mind telling me what type of pain they have? Is it neurological (burning, electrical type pain, etc.) or muscular (cramping, aching, soreness, etc.)? Is there any treatment that's helped reduce their pain? Decades ago (before I knew about mito), I was diagnosed with Reflex Sympathetic Dystrophy (RSD). Years later, many doctors started saying that Complex Regional Pain Syndrome was a better name for everyone with RSD. I haven't heard anyone else with mito say they have or have had RSD. Do you know if the pain syndrome your family members have is what used to be called RSD? I would be very interested--what used to they have found anything that helps! Best wishes, Shayna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Hi Shayna, This is the mom to the group with Complex Regional Pain Syndrome, Enrique doesn't do a lot of the medical stuff for our family usually. I sent the post so I thought it would be ok to answer for him. The type of pain they get most often is a burning nerve like pain. It can be very intense, they do have the muscle pain as well where they just ache for no reason at all really, but it is my understanding that the burning nerve like pain is more the CRP from Dr. Boles. had to use narcotics at one point to control his pain. We went through pain management at Children's La to try and help him. It was awful pain that he had at that point from the lipomas being removed, he could hardly stand the pain. It is very hard to watch them be in such pain when it flairs up. Kira will get hot burning pain and her arms will swell up and will be really red and hot to the touch. We use the Ibuprophen 600-800 mg and sleep for her. Sometimes heat/cold to it will relieve the pain but not always. As for Krisalynn, hers wasn't kicked off until she compound broke her arm. It swelled really bad in the cast and the burning pain was almost intolerable for her. The doctor from Loma accused her of being a baby and over reacting, and told me it was just a compound break and to not baby her, until I could get him to talk to Dr Boles and have him explain to this idiot what was going on.( I am not angry at this doctor now am I LOL) We iced her cast with a continuous ice machine that she kept on for 8 hours at a time and gave her anti swelling medication along with codeine., split her cast to allow for the swelling and of course elevated it. It flairs up every once in awhile for no apparent reason now on and off and for the most part icing it and high amounts of ibuprohen seem to help her. We have not found any magical treatment per say for it although Dr. Boles is trying. My kids all take amitriptaline as well which helps with the dysautonomia, which could in turn help with the CRP, but I am not totally sure on that. My family was in Dr. Bole's study which he presented at the symposium. I have not seen what was published as of yet but hope to. I don't know if he has it out as a full publication or not, but I will ask him and let you know. If we can answer any more questions just let me know. It is a crazy thing to deal with, I can tell you that! O Mom to Kira almost 16 yrs- Mitochondrial Myopathy- Maternally Inherited Dysautonomia-Cyclic Vomiter-Complex Regional Pain Syndrome- ASD/VSD mitral valve repair 2000-G tube 1999 13yrs- Mitochondrial Myopathy-Maternally Inherited Dysautonomia- Complex Regional Pain Syndrome- Lipoma removals 2004/2005 upper neck area. Krisalynn 10 yrs- Mitochondrial Myopathy Maternally Inherited Dysautonomia- Complex Regional pain Syndrome set off by compound break of arm 2005-hypertonia of the bladder Enrique- The dad of the group! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2006 Report Share Posted June 30, 2006 Dear Enrique, I noticed that some of the mito folks in your family have Complex Regional Pain Syndrome. Would you mind telling me what type of pain they have? Is it neurological (burning, electrical type pain, etc.) or muscular (cramping, aching, soreness, etc.)? Is there any treatment that's helped reduce their pain? Decades ago (before I knew about mito), I was diagnosed with Reflex Sympathetic Dystrophy (RSD). Years later, many doctors started saying that Complex Regional Pain Syndrome was a better name for everyone with RSD. I haven't heard anyone else with mito say they have or have had RSD. Do you know if the pain syndrome your family members have is what used to be called RSD? I would be very interested--especially if they have found anything that helps! Best wishes, Shayna > > Hi , > > Both My son and daughter have been through treadmill stress tests. With > his legs fatigued very quickly and they had to stop. Kira however was > able to go long enough for them to see what they needed to see prior to her > heart surgery. With they put him in a non weight bearing situation, it > was like a treadmill under water and he walked that for them and they got what > they needed from that. The conventional one was out for him. Good luck > with your test. > O > > Mom to Kira almost 16 yrs- Mitochondrial Myopathy- Maternally Inherited > Dysautonomia-Cyclic Vomiter-Complex Regional Pain Syndrome- ASD/VSD mitral valve > repair 2000-G tube 1999 > 13yrs- Mitochondrial Myopathy-Maternally Inherited Myopathy- Complex > Regional Pain Syndrome- Lipoma removals 2004/2005 upper neck area. > Krisalynn 10 yrs- Mitochondrial Myopathy Maternally Inherited Dysautonomia- > Complex Regiaonl pain Syndrome set off by compound break of arm > 2005-hypertonia of the bladder > > Enrique- The dad of the group! > > > Quote Link to comment Share on other sites More sharing options...
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