# Reflex Sympathetic Dystrophy { RSD }



## BOGGS (Apr 1, 2000)

Hi everyone, My doctor now tells me that I have either Fibro or RSD . I was just wondering if any one has ever heard of this or is suffering from it ? My pain seems to be spreading through my whole body . I have never been in this much pain in my life . I do a real good job of hiding my pain from coworkers. I come to this group to vent about things that I don't discuss any where else . My doctor has set appointments for 2nd opions on the neuro , uro , he even got a 2nd opion on his own diagnose . I will be haveing test done all through Aug. Please say a prayer for me that I will get a answer on all this pain. Thank you for all your support and I will keep everyone posted on test . Pat


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## Guest (Jul 29, 2000)

Pat, I have never been told I had that, don't know much ablout it either. I know how scary this all ia. I remember how hopeless I felt when they didn't have a name for my FM. I too went from one doctor to another unti they gave it a name and when they did it was the greatest thin and relief because then I knew I wasn't going crazy and I had a name to tell my family. I really do have something wrong I'm not just goofing aroun here. I will pray for you and hope they come up with something to call it so you can know for sure. I have found a lot of caring people here and you will too. Be sure and let us know how it's going all the way through o.k.? Good luck and rest because you'll need it going throughthose test. Probably nothing painful but it's all just very tireing. I have a lot of things to be praying about but Im a p[raying woman and will remember you. Keep in tough. jfaith------------------


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## BOGGS (Apr 1, 2000)

Hi jfaith, Thank you very much for the prayers. I will be praying for you too. You are are right about getting a name for what is going on . One doctor says it is this and another doctor says it is this . I feel like thay are passing the buck because thay can't figure out what it really is . Thay all make me feel like it is all in my head . I feel so alone on this. I don't mean to vent but this whole thing is really getting to me. What little bit that I have read on RSD it is some nasty stuff . I know I have ask this question before . I just wanted to start a new post so I can keep everyone posted on what is going on with me. Thanks again for your concern it means alot to me. Pat


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## squrts (Aug 14, 2000)

prayers,best wishes. squrts.


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## Guest (Jul 29, 2000)

Dear Pat,I'm so sorry you are in such pain.It seems to me that more and more, they are finding links to these conditions with viruses, bacteria and genetic links.I really don't care if they ever come up with "names" for them. I want them to find their *causes* which may suggest a *cure*.Two interesting sites I found, just within the past couple of days: http://www.cnn.com/2000/HEALTH/07/28/fat.virus.ap/index.html Excerpt from above article:Experts are not completely surprised by the Wisconsin group's results. In the last few years, they have found signs that many chronic health conditions are caused by infections. Three different microbes are thought to contribute to clogged arteries. Long thought to be a product of high stress and a poor diet, ulcers are now known to be caused by the bacterium Helicobacter pylori.============Another interesting article I ran across last night. A genetic link. High cholesterol, but no heart disease. http://komotv.com/news/story.asp?ID=5816 I empathize greatly with you for the pain you are going through.calida


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## BOGGS (Apr 1, 2000)

Hi, Thank you sguirt and calida for your replys . I knew that I could count on this group for support . Out of all the group that I am in or read . This group is the best . There is a great group of people in here . I haven't even read one negative replys to any body . This is the way a support group should be . Calida you have a very interesting point . I will check out your site for sure . I was dx with IBS 3 years ago. Then I started getting bladder infection 3 months in a row. Then the pain started and it has been a cat and mouse game every since . I had blood and infection in my urine but the uroligist couldn't find anything wrong . He even did a bladder scope still nothing wrong . Then my back started hurting I had a MRI done on back . Thay found 1 herinated and 2 bulging disk in back . Went to neuroligst and he said no herinated disk just bones are grinding together . He sent a recomandation to my MD that I see a rumetoligist { spelling ? } . My doctorr told me that now he is leanning toward RSD . He set a 2nd opion on every doctor and every test that I have already done { ahhh ] Thank you everyone for your concern and support I come here and get things off my mind so that I don't take it out on my family . God Bless and my prayers are with evey one that has to live with all this PAIN . Pat PS Sorry post is so big , and I will keep everyone posted on my appointments .


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## weener (Aug 15, 2000)

Hi Boggs:I'm so glad to hear from you. I was beginning to worry. Haven't heard from you in awhile and was wondering how everything was going. I gather from you posts that things aren't the greatest right now. Are the meds not helping? I'm sorry but I don't know much about RSD. If I come across any info I will definitely forward it to you. Please try to hang in there and know that we are here for you. Pat have you read the posts on mycoplasma. Very interesting reading. I wonder if your doc knows about this. Good luck with your upcoming appts and I will say a prayer for you tonight. God Bless you.


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## BOGGS (Apr 1, 2000)

Hi weener, Thank you for your post you have always made me feel welcome in this group. No things are not going very well for me . It is taken all I got to make it through my shift at work . I am supporting a family of 5 and missing work is not a option . I am taken enough pain pills to put a horse to sleep . If my doctor increases any more of my doses I won't have to worry about pain because I will be asleep all the time LOL . I just wake up everyday and try my best to make it through the day . I will not let this beat me no matter what it is . I will mention mycroplasma to my MD next time I see him . I just wanted to post and say thanks for being there for me . I will keep all of you in my prayers, and God Bless. Pat


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## Feisty (Aug 14, 2000)

Pat, Just wanted to let you know I'm thinking of you. Hang in there! I know that's a favorite phrase to use, but I also know how tough it can be when you are in so much pain and there are no real answers for you. You are in my thoughts. I hope they can get to the bottom of this soon so they can start healing you. Your pain has got to be awful. Thinking of you.Karen


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## BOGGS (Apr 1, 2000)

Hi , Thank you for your prayers aand concern Feisty . I long for the day that I can go a whole day with out pain . I know that day will come I just have to deal with it until then . I don't want to be on pain killers the rest of my life . I pray everyday that they will find what my problem is and start working on a cure . I just wanted to say thank you for your post . I will let everyone know if any things happens with my appointment . Weener how are you feeling . I hope you are doing well. God Bless. Pat


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## Guest (Aug 1, 2000)

Hi Pat,I'm sorry I missed you in the Chatroom that night. I have been up late nearly every night but I can never remember to check the room. I'm sorry you are feeling so badly, its as hard on the mind as it is on the body. I'll be thinking of you.Lori Ann


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## BOGGS (Apr 1, 2000)

Hi everybody, How is everyone doing. Thank you for the post Lori Ann. I am starting to feel better now . My doctor increased some of my pain Med . I am glad that I can atleast go through the day not being in sever pain all day . I still go through alot of pain at nite. I just wanted to do a quick post and say thank you to all who took the time to reply to me . I knew this group would give me the support that I needed . I know all the prayers that people has said for me makes a diffrence . My prayers are with you all. God Bless Pat


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## weener (Aug 15, 2000)

Hi Boggs:I'm so happy to hear that you are feeling better. If increasing the meds helps you function better then that is what you need for now. I hope and pray that they will find out what it is soon. This week has been an okay week. My hubby is on vacation so we've been doing a lot of visiting. Long drives. I just have to do a lot of stretching. The weather in Ontario has been very hot and humid. It's been rainy all week and they are calling for rain until the weekend. We are off to an antique mall today. Take care Pat and hope you continue to feel better.


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## Guest (Aug 2, 2000)

Hi Pat & Weener,I missed you both on mon. night. I went there but no one was there.Pat I hope increasing your pain meds will help you with this flare up. Which med did you increase? I am always curious to see what works for each person. It varies so much from person to person.Well take care,Sea


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## BOGGS (Apr 1, 2000)

Hi Sea and Weener, Weener I hope you enjoy your hubbys vacation . Please take care of yourself and don't over do it like I always do. Sea my doctor increased my Neurontine and Ultram . I am still feeling better during the day. I haven't felt this good in months . I feel so good during the day that I almost forget about the pain . Then when it comes bed time the pain comes back . I have my fingers cross that my good luck will continue . I know that all the prayers being said for me makes a diffrence . Thank you all for your prayers and concern . I will be having test done on me starting next week . I will keep everybody posted. God Bless Pat


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## Guest (Aug 4, 2000)

Hi Pat, I noticed in the last message you mentioned taking Neurontin. Did you know it can CAUSE muscle spasms? A friend of mine took it and had to quit for that reason. Sorry to hear you are having such trouble. I would like to hear more about RSD. DeeDee


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## BOGGS (Apr 1, 2000)

Hi DeeDee, No I did not know that Neurontine can cause Muscle spams . From my findings with other grroups alot of people take Neurontine for Fibro and for RSD . For now I am going to take what my doctor recommends . Thank you for letting me know this . I will discuss this with my MD .  I am still learning about RSD . It is alot like Fibro . From my findings a persons Sympathetic Nerves cause them alot of pain . It is mostly cause from a injury that damages your Sympathetic Nerves. Alot of people have to get Nerve blocks . This is very painful too . The support group like this one has alot of good people on it too . Alot of the post on the RSD board sounds just like this board . One of the big diffrence is you can have test done to determine Fibro. RSD is like IBS if nothing is found wrong then it is IBS / RSD . Alot of people that have RSD also has Fibro . I am still learning on this maybe someone in this group knows more about it ? That is why I made this post . I will gladly give any info that I find out about RSD . This stuff is really nasty . I want a answer to my pain but I truely do not want it to be RSD . Thanks again for your info and post . God Bless. Pat


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## Guest (Aug 10, 2000)

Boggs; I happen to come across your article by accident, I was looking up a prescription and came across the Fibromyalgia discussion. and was curious for my best friend and my Aunt suffer severly from this (illness) My Aunt was at one point of not being able to walk or for that matter not much of anything she had to get a aide to come in and help her, My best friend I just watched her get worse and worse very sore and extremely tired.Well the good news to this depressing note is my Aunt (whom searches to no end came apond a book Titled what your Doctor may not tell you about Fibromyalgia. by R.Paul St.Amand both Aunt and friend read the book and followed the program- which includes taking a cough medicine (tUSSIN) TAKES COUPLE MONTHS BUT THEY NOTICED A CHANGE RIGHT AWAy. Please take amoment to look up www.Geocities.com-Hotsprings-spa-5252 It tells you alittle about the book and arthor. This is my very first time to log on to a discussion I hope to have been a help to any whom reads this note my prayers are to you







Tweety


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## BOGGS (Apr 1, 2000)

Hi Tweety, Thank you for your post and info. Welcome to our group . You will meet a bunch of great people in here . I tried to bring up the site that you posted but my old computer would not do it . I will look for the book you mention for sure . Feel free to post me anytime . It is good to hear that someone has found a way to deal with fibro I just wanted to reply back to your post and welcome you to the group . I hope to hear from you again real soon . My prayers are with you all . God Bless Pat P.S. I am sorry that I can't make the monday chat . If anyone wants to meet me in the chat room any nite at 2 am Michigan time I would love to talk. Take care


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## moldie (Sep 25, 1999)

Hi Boggs, Haven't been real regular on the board lately but I too noticed you weren't around for a period of time and I was wondering how you were doing. I am sorry for the troubles you have been going through. I have not heard anything about Reflex Sympathetic Dystrophy so I am afraid I will not be of much help, but seems you must have been searching on the web since you already found a support group. Has this condition been around for awhile? I just recently heard of another similar to fibro called eosophilia myalgia. There are so many different conditions out there it is difficult for all the doctors to keep up. Specialist seem to be the way to go it seems, but it is often difficult to find one and costly. I hope that you will be able to sort things out with job and family. Taking care of your health is important, because without it is difficult to enjoy life. Go ahead and keep the dumping here, because you are right, it is better than dumping on the family! That is not to say that you shouldn't be discussing things with them, because after all you are in it together. Don't be afraid to ask for help when you need it! God Bless.Leave it to calida for some good "site seeing". Thanks, you sure know how to surf people around the place!














Welcome Tweety and all newbies to the group!


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## BOGGS (Apr 1, 2000)

HI Moldie, Thank you so very much for your reply . I was surprise to see this topic still going . After reading your post and doing alot of thinking on my walks . I have decided to set down with my wife and discuss everything with her . I have come to terms with this. I don't know if it is fibro or RSD but we will go through this thing together. I try to play the male thing and not say anything . I got some good news about the bladder pain . Now I need to find out about the back and rib cage pain . Pain is the first thing that I feel when I wake up and it is the last thing that I feel when I go to bed. It never stops and I won't stop fighting it. Thanks to all for there care and concern . I hope someday I can help someone on this board like everyone on here has helped me. God Bless and take care . Pat


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## Guest (Aug 27, 2000)

there is a message board on E-groups (formerly called onelist.com) called RSDNet (or try www.rsdnet.com) and also RSDHope ...there is alot of info there and thousands of those who have rsd...my aunt and friend have this..when I first researched it when they were diagnosed I received hundreds of emails from others...


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## Guest (Aug 27, 2000)

here is the correct link http://www.egroups.com/group/RSDnet


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## BOGGS (Apr 1, 2000)

Hi everyone, Thank you Lazybones for your info . I will be checking it out after this reply. I have my appointment with the neuro surgeon this Tuesday . I hope that he can give me answer for my pain . The 2nd opion on the Uroligst paid off for me. He told me that I had chronic prostatitis . That is not great news but it was a relife getting some kind of answer . Now I hope this neuroligist will help me. If he don't have a answer for me then I have a appointment with the Ruematoligst next month. I get so frustrated sometime dealing with this pain everyday . I can't do half the things I use to do. It makes me feel like I am half the man I use to be . I push myself way to hard , and pay for it latter on . Well just wanted to vent alittle and tell you thanks for your replys . God Bless and Take Care . Pat


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