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| | From:  Tami62 (Original Message) | Sent: 1/27/2008 3:58 AM |
My name is Tami and my husband was diagnosed with Causalgia/RSD about a year and 1/2 ago. He was hurt on the job from a hard bump to his lower shin. We have had to deal with workmans comp and for those of you who have had to do the same you know it is a never ending battle. Probably as aggravating as finding a Doctor who accually knows what RSD is and how to treat it. My husband was lucky enough to get a Doctor who was familiar with RSD within the first 5 months however workmans comp makes it all as hard as possible to accually get treated. Needless to say we have been waiting for surgury (symphthectomy?) to happen for about 6 months now and it has spread up his entire left leg, his hips, lower and middle back and mirrored to the right shin and foot. I fear that it will have spread too far by the time surgury happens that it won't do any good or worse he will end up with whole body RSD and much, much worse pain from the surgury. We are both terrified of what can happen with or without surgury. He is not in a very good place emotionally and in serious pain 80% of the time. He is on Lyrica and another pain med but they aren't helping much anymore. Meditation, soothing sounds music and light tingly rubbing on not yet affected areas of his body (head, arms, upperback) are the only things that bring a little relief. (at least to a tollerable level) I have been surching for a support group but to my surprise, there are very few and none in the city where we live. After reading some of you member entries I finally understand why. It is just too painful to travel or get up sometimes. I guess I didn't really think about that. My husband has always been extremly hyperactive and always doing somthing. He still tries to do all the things he use to so I never really thought about how much pain he was in. Pride can be very harmful to someone with RSD. Over the past 4 months I have started to see how this dystrophy has really taken a toll on him. Our lives have forever changed. Our relationship has been tested continiously and he is always debating wether he should leave or not. It just crushes me every time he mentions it. I love him so much and feel so helpless. Just the stress of it all gets to be too much for both of us. No one who is not affected by this horible dystrophy, truley understands the devistation it causes. My heart goes out to all of you with RSD and to all those who love you.......We are all hurting. Thanks for listening Tami62 |
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Tami, Please check with other doctors regarding the Sympathectomy. I've had RSD since 2001 and any surgery can spread the RSD. My doctor wouldn't even fix my broken finger because of the chance the RSD would spread back into my hands and arms. Please tell your husband that this is a good place to come and visit with other RSD patients. Thoughtfully, Sylvia |
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| | | From: Tami62 | Sent: 1/29/2008 5:15 AM |
Hi Frank, What you said to me brought tears to my eyes and I wrote a letter back to you about my experiences as a spouse of someone with RSD but I guess I got too long winded and my browser timed out so I don't think it went through. I guess I'll try again if you like. I feel better getting it off my chest though. If you'ld like to talk more about what you went through with your wife, let me know. It might help you heal if you can see the other side of RSD. I don't want to push it on you though if you don't want to go there its ok. Anyway, I just want to sue the pants off of workmans comp and all those involved in their decision making and proceedures or rules!!!! Some times I think all the frustration we all experience with all the doctors and insurance companies and workmans comp ect... just makes the RSD worse. Its like we are still not being heard. I want to make them all change their policies and proceedures for handeling and treating suspected RSD patients!!!! I just don't know where to begin or what to do. If I had the money I'd make a video of different people with RSD and their families showing how it affects us all. kinda like those drug commercials that kids do or the smoking commercials that make such profound points only more in depth. I'd play it over and over on every station that I could. Its like it has to be in their face to see it. It's so aggrevating! Ok I'll calm down. I would love to help with this site. I don't know what to do but if you guide me I'll be happy to help. I've never done anything like that before. Frank thanks so much for replying to me. It really meant a lot and helped me see the other side of RSD myself. I hope you are have at least a comforatable day and I look forward to talking to you again. We should really work harder on a chat site though I think more people would be likely to stay in touch. Tami62 |
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| | | From: Tami62 | Sent: 1/29/2008 5:34 AM |
Hi Sylvia, Thanks for the advise. I wish there was some other options out there. We have had 3 doctors recomend this surgury just because it is spreading so fast. Where some people have a longer time to go through all the ropes it does give them a little more time to adjust to it all. He is on the last stages of RSD and it has only been a year and a half. He also has other health factors that have given them concern. Their hope is to slow it down before it consumes his body. Their biggest concern is if it gets to his chest. We know it won't cure him and there is a very high risk that it could make it worse. His only other option because its workmans comp that is controlling it, is to refuse any further treatment and live with the pain. He can't stand it any more and he has a very high pain tollerance. He is willing to take the chance for the small hope of relief. I have talked to him about my concerns and fears about the surgury but it is what he wants. I am terrified. I pray that it goes as they plan but I fear the worst. We don't see any other altrnatives right now. The surgeon said the pump won't help his perticular situation because of how aggressive it is. The blocks didn't work either. He is at his max for meds unless he goes to morphene and he doesn't want to do that. His attourny even tried to talk him out of it. Just say a prayer for him. Thanks for your support and hope to talk with you more. Tami62 |
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Hi there Tammi,,,,,, same Annie as 57011 no problem dear..... Do not in any way blame your husband for not wanting the morphine at all... It is all different with the morphine pump... It is not going thru the liver blood or kidneys... not the side affects neither...... That is the great part.... They do a three day test too see if it works... That is great part... With the the 48 hrs you know if works or not!!!!!!!!! The releif that I got is been great... Now they are adding muscle relaxers too stop the spasms that I have... OR stop the severity of spasms.. Do not know what or how much they will slow down but hope the severity of them...... Hey dear add me too your msn mesenger dear. [email protected]... I will make you assistant here n walk thru the things that u can do.... We Do work great together... since you are not having the health problems that we all do would be super great too have you on dear.... I am getting ready too have more procedures done.. Then surgery again... That I am not sure of all that is going too be happening too me.... Knowing that you all here are helping is super great.... No not worry my dear,,,,,, I have been doing this now for more than five yrs... Still learning at all that can be done... So take your time n look it over... n ask questions I am usually around... slow to answer maybe,,,, will answer yah am online 24 hrs aday... not a problem,,,,, just be away doing something,,, but will answer ,,,, or you can find messages when u sign back on not a problem.......I will answer.... Thanks for helping n being part of the group...... Annie |
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| | | From: lgs131 | Sent: 1/29/2008 5:12 PM |
Tami, My son also had RSD that spread quickly. It started in his right ankle in June 2006 and spread up that leg and went to his left leg in September. It went up that leg and by Feb 2007, he had it in both legs from the hips down. We started giving him pk injections with glutathione. It detoxifies the body and is a powerful antioxidant. If you look at research done in Holland, they think RSD is a consequence of a build up of free radicals and as the extremity gets saturated with the free radicals, they spread. Hence the spreading of RSD. Since my son has had these injections regularly, his RSD has not spread. On two occasions it reduced his pain level dramatically. His pain has not spread since Feb 2007. Of course, it is impossible to predict how it will affect someone else and even to tell whether these injections are really the cause of his RSD not spreading for the last year after rapid spreading before that. Unfortunately, the injections are quite expensive and we have not even tried to get Workers' Comp to pay for them. |
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Tami, I am not suggesting that your husband take opiods but after not being treated for 2 1/2 years and then another 1 1/2 years trying every drug on the market I finally went ahead and started on Oxycontin...it worked but the dosage I have to take is quite high its better that the suffering. Getting addicted in my case was a given, so what...I have to take it for relief. I am sure if it wasnt for that drug I would have used a permenant method of pain relief by now. |
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Here is some more information on Sympathectomy. ( www.rsdrx.com/sympathectomy_failure.htm) I to suffer from RSD. Just recentlty they started me on morphine capsules, they relieve alittle more pain. Although this cold weather causes me more pain. I have had rsd about a year and a half . I also have nerve blocks done weekly. I too had to deal with work comp, they are a joke. My doctors just were talking to me before morphine pills wanting me to try the stimulator,Nothing in my spine I told him. he said well actually they have been having lots of problems with the stimulator,im sure you have heard, so for now that would be a good decision. In my thoughts everthing is different for each one of us.Some can take meds,some have to go with what works for them until one day a cure .That we all pray for everyday. As always everyone is in my prayers. And Tami I give you very much credit for seeking out
for some support. Strong Hearts can take you many places. Ask us a million questions if you need to. May God bless you and your family, Tina
Never miss a thing. Make Yahoo your homepage.
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| | | From: ladojo | Sent: 2/5/2008 7:55 AM |
I thank Tina so much for telling me about this group. We met at the clinic that we both go to... was a blessing that we got to talk for only a minute or two, but long enough for me to give her my e-mail address. I can't believe how much help you all have given to me. God is really answering my prayers. I have been suffering a lot of pain, and my sleeping pattern is all messed up again...But thanks to my new friends... I'm not stressed, and depressed. I may get another nerve block soon, but for now I just take all my pills when the alarm goes off, and thank God that someone is trying to do what ever it takes to give each of us a little comfort, and some day will find a cure... Does anyone know if eating citrus fruits can cause any digestive problems?
Gentle Hugs to all... God bless!
ladojo |
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Very very very very Welcome too the group my dear!!! Glad too know that u r not alone in all of this!!!! Please know that we are here too help.. Even if it is just too vent. Please do not worry... We are here for what u need. Hoping that someone will answer with what u need at that time... sometimes waiting for answers is hard one.. Hoping that we can get everyone active again here. Huggzz!! HI there,,,,,,, so so Very Very Glad that u found Tami...... So neat what talking too strangers can give or how helps.... Amazing!!!!!!!! Happier still too now know that u r not alone n more people do understand what n how things go for you...... My dear,,,,,, what n how foods affects you,,,,,, maybe different for others... Have not heard about citrus affecting anyone!!!!! Not at all!!!!!! Hard Hard telling!!!!!!! Right now,, Have been drinking lemonade like crazzy,,,,, allergys have set in ,,, phlem is in back of throat,,,,, And only thing keeping me from choking.. Grrrrrrrrrr!!!!! From all that I am hearing n reading,,,,,, sleeplessness is caused by the rsd.....Everyone that I know,,,,,,,, each one dealing with rsd,,,, the sleeplessness is making each one cope differently with it... Sooo weird one,,,,,, is meds all make for drowsyness... With four or five meds.. We should all be knocked out for small periods.... Wishing that mine would ,,, four or five days with out sleep is soooo weird!!!!!!!!! N hard,,,,, Hard.... each one of us also deals n copes with pain in each one!!!!!!!!! Knowing that we are not alone,,,,, n able too vent n chat n cope,,,,,, is alot different knowing that someone understands.... Also the isolation that we all go into is another hard factor,,,,, We all do it.... Mostly with out realizing n are deep into isolation with out realizing the deepness that we sunk into it!!!!!! But |
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| | | From: Tami62 | Sent: 2/6/2008 3:53 AM |
Hi ladojo, I want to welcome you to the group. I hope to get to know you better. It is wonderful that you ran into Tina and she was able to offer the support you needed. It's hard to know where to turn when things aren't going right and you feel frustrated. Any time you need to talk just give a shout on the board and we will be there. Hopfully we will be able to chat as soon as the chat board is back up. It's great to make a new friend specially when feel so alone. Talk to you soon. Tami62  |
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| | | From: ladojo | Sent: 2/18/2008 5:46 PM |
Hey! I have missed talking to people in the chat room for a few days... I'm confused as to how to get to the new chat room. I go to the one I first found, and people there, but since the tool bar thingy... I don't find the chat room. I hate being so Ignorant about things, but I would like to chat with you wonderful people again.
If you can... try to send me a message as to how I go about getting in to the chat room. Please... Thank you!
ladojo |
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| | | From: Tami62 | Sent: 2/19/2008 4:43 AM |
Hi Ladojo, I haven't seen anyone in there lately either. You can add me to your buddy list [email protected] I haven't been on chat much in the past few week since I've been busy and trying to finish some new pages to add to the site. I am still looking into other chats as well. I was in there tonight but nobody joined. I don't know if the members don't like the ones I have on here or just don't come in because nobody is in there when they do go there. I have just sent an email to all the other managers today to see if we can all take turns monitoring the chats at different times of day so that it will be more used. As soon as we come up with a schedule I will post it on the site for everyone to see. I have been trying out the toolbar chat lately to see if there is any response in there. You don't have to use that one it is just an option. The link for the download is towards the top of the menu on RSD site right under Newbies. I don't know if you have yahoo or not but if not it is free to sign up and it might help you stay in touch with other members. If you have anymore questions or concerns just email me ok. I work days so I am usually online in the evenings and weekends. I hope to talk to you soon. Tami62  |
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Hi Tami, I noticed you were also on the yahoo group but I can't figure that one out? I would like to tell you are a wonderful wife for reaching out for support. It is also great to hear from the other side of RSD. Those who are watching and suffering in a different way. I sometimes wonder what my husband thinks about all of this. It would be a very positive thing for you to stick around for all of us to share your feelings from that side. Look forward to hearing from you. Many blessings for you and your husband. -Jama |
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I'm even afraid of getting any blocks done Sylvia.....After I fell and the RSD set in....I received a hip injection and that site has alway's been worse discolored than the rest of me....and still to this day painful....I'm convinced in my life that even an injection spreads this stuff....Diana |
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O my dear...... I fully understand you on that fear. After my accident and learning that my life was going too be constantly run by meds n drs. I was scared as _______ You can be assured of that one. I hated drs n medicines totaly.. With the drugs that I was being given n not understanding all the whys or how comes i certainly had too look n find answers. Certainly was maddening that the drs wanted too preach about my cigarrettes handing me drugs in other hand... Well,,, question that come too mind was what could be worse,,, drugs or ciggarrettes???? Did not get no answers on that one.. No more preached at neither.. So that is my experience with the drs on that . I certainly can tell you,,, I had 42 blocks done rsd did not spread. They did help alot. And the discoloring also was helped alot. Now had 8 more done and helped again tremendously well.. Going in for follow up this morning now... The pain is all coming back now n is much much different so this is going to be nex experience for me now.. also a new dr since mine quit here at this office... Hate that he quit.. Was doing me so well. He gone,,,, I am so thankful that he did help me.. Really!!!!!!! Hoping that u having a good week as is possible... Annie |
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