Hello Y'All..........Christine's Story

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From: FiNdAcUrEnOw Sent: 8/16/2005 8:13 AM
Hi Casa,

I haven"t yet posted my story. I just found this site. I came across your message and just had to repond. I have to tell you, you have no idea how much worse you could have it as a fellow Workers Comp patient with RSD I can tell you without a doubt, that I know all too well what your going through, not just with the RSD, but the Workers Comp is almost as bad as the RSD itself, at least in my case. But, it doesnt sound like you are having too many problems with Workers Comp, you are the lucky one in that regard. I would like to say a few things about what you wrote. We have a lot of things in common in our cases. I too came to have RSD from mistakes from doctors. Except mine was worse, it was actually caused by a mistake during a supposed to be, "routine type surgery" from an injury I sustained at work. Then was soon as the surgeon realized I had developed RSD, he not only did not want to help me, he actually refused to even have me as a patient any longer. He stated that he did his surgery and I was now going to need a specialist and he was not qualified to treat me any longer. Well, he was obviously not qualified to treat me in the 1st place, but it was too late now. This could go on for 20 pages but I wanted to speak to a few things you had mentioned in your message. I don't know if you have had more answers since you posted your message, but I'll say it anyway. Oh and first let me tell you I can so emphathize with you on the weight part. I have always taken pride in the fact that even into my 40's I have always been under weight, well since this evil RSD, I am now very over weight and it is almost as depressing as the RSD. Just like that, pounds just came out of no where. And it's not from food, because I really never eat. It's from medication and none activity because of pain and RSD problems. I used to be very active, now I do pretty much nothing. Now this brings me to one of the things in your message, gabapentin, also known as Neurontin, well, I'm not a doctor and wouldnever tell anyone not to take something their doctor told them to take, but please realize doctors don't always know everything. I have to say because I believe it so strongly (and please be aware that this is my opinion from research I have done) Neurontin WILL NOT HELP RSD! It will do nothing, aside from weight gain. I hope you will go to the following website, http://www.rsdhope.org/ShowPage.asp?PAGE_ID=33&PGCT_ID=2536 This is only one site that has exposed neurontin for what is really is, A SCAM drug. It has been prescribed for Bi-Polar, even to someone I know, and it did nothing to help, except make her gain 100 pounds. So, the 1st thing I think you should check into is getting of Neurontin. The next thing that is similar is the question you asked at the end of your message about the "Paula Abdul Story" Well this is another very bad press story. People magazine should have done their homework before they printed that story. That drug they mentioned that "cured" Paula is NOT an RSD drug, and Paula doesnt even take that drug for RSD. And Please I'm sure if you are on this site, you know by now, there is no cure for RSD, so if Paula Abdul has it, she is not cured either. The drug they mention was for a different condition altogether, not RSD. I don't know what she does take for RSD but it isnt the drug they printed and the story was really printed wrong. It a shame to because a celebrity could have been great for the casue, but they wrote the story so poorly it just gave people false hopes. I believe the doctor who gave Paula that drug even wrote something to tell people that he did not prescribe Paula that drug for RSD. Okay, I guess thats enough on that. I guess I wanted to also tell you that maybe you should consider finding another doctor? If your doctor told you your RSD is not permanent, he obviously doesnt know enough about the disease. There is no cure for RSD. Some never even have remission, and it does spread, I am a prime example of that, it has seriously spread in my case. Now I'm not trying to be totally bleek here, although I know it seem that way. There are people who have periods of remission and there are some things that work very well for some people and they can live a semi normal life. First what you need is a specialist. A pain specialist. By all means Do NOT waste another day with a doctor who isnt helping you. You can't afford that time. Move on until you find a doctor who knows RSD and knows all the treatments that might help you. Don't stop until you find that doctor. And I would like to tell you some of the things that I know have worked for many. One is Ketamine topical ointment. It real works to stop the "burning pain," and there is something called a spinal cord stimulator, that I'm told is a last resort, but is supposed to really work. Now the last thing is Hyperbaric Oxygen. This may sound strange, but, it really does work, at least for many. I personally went into remission for several months after 10 treatments. There are a lot of sites on the internet on Hyperbaric Oxygen, try looking some of them up, there should be some centers in Canada. If you can get your doctor to believe in it he/she may be able to get it paid for by Workers Comp. Well there are a lot of other things to say, but as usual it's 4am and I am still siting here,, so maybe I will reply again tomorrow. By the way, do you have insomnia? Boy is that a huge problem for me. For now, I wish you and all RSD patients the best of luck and hopes for a cure one day. The day will come! We all just have to stand up and raise our voices and raise them loudly! Thank you to RSDhope, they are a wonderful site and we need a million more like them. They can give a person a new heart, I can not believe they can not cure RSD. Stay Positive! p.s. I will try to put my story on soon. you would not believe the trouble I've seen, only hope it can help others to maybe know it and avoid it!


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Recommend Delete Message 8 of 10 in Discussion

From: Rittlemom1 Sent: 8/16/2005 8:52 PM
Hi Casa, I have read through your story as well as the replys you have gotten. The one thing that I want to impress upon you, and I am sure Robyn will agree with as she also says it often. What works for one may not for another and visa versa. We can each react differently to the same situation all act the same. I say that to react to one of your replys which states strongly that neurontin is useless. I on the other had say it is the one treatment since I have been diagnosed that has helped me the most. So that shows you that the same drug may or may not work for you and you have to make choices based on your research and the help from docs that you trust. The neuro stimulator that many people have had such good luck with, go figure has not helped me much at all.lol I read a lot ask a lot of questions here, docs other patients etc, and then try to make the best choices I can. I don't let another persons bad experience stop me from using something but I do put it into the mix of items I consider. Hope this all makes sense to you, did not mean to lecture or anything just wanted to add another thought into your mix, so to speak, lol Hope things starting looking better for you take care, hugs kathy


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Recommend Delete Message 9 of 10 in Discussion

From: casa7036 Sent: 8/17/2005 11:46 AM
Hey there Kath, Hope your surgery went well, I am a little upset that you felt that you had to respond to my posting here instead of emailing me directly, but maybe we have just grown too far apart for you to realize exactly who this is. Well Once again I hope all is well with you. And once again you could not find it in your heart to email me back and let me know how your surgery went. This does make me very sad, but I will always keep you in my thoughts and prayers as I promised to do from day one. I am glad you have this site to help you through since it seems that you no longer need me. I will always remember you as my bestest painpal.
Christine


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Recommend Delete Message 10 of 10 in Discussion

From: casa7036 Sent: 8/19/2005 8:55 PM
well I really must apologize to rittlemom for my response, it was replied to the way it was due to myself very badly misunderstanding her reply. So once again all I am very sorry Kathy I hope you could please forgive me. Sometimes I can be nothing but a knucklehead.
Christine

From: casa7036 (Original Message) Sent: 5/18/2005 9:06 PM
I am a 33 year old single canadian mother of two boys aged 10 and 8. Before my injury I worked full time and had been enjoying my life with my twoo children and then I was injured at work back in September of 2004, I twisted my left ankle. When I went to the hospital and had exrays done, the doc thought I had a slight break, so I was put into an aircast for 4 weeks. I then went to my family doc and she could not understand why the swelling would not go down so she sent me to see an orthopediac surgeon. You have to remember though that all through the 4 weeks the same family doc had been examining my foot and it took her 4 weeks to refer me and then another 2 before I could get into the surgeon. After seeing the surgeon, all he did at the time was look at the exrays and tell me that infact it was not a break but a very bad sprain. People always tell me that sprains are worse than breaks so at that time it made sense. The surgeon then sent me back to my family doc with some reccommendations. That I was to stay off work for about 4-6 weeks and then back to see him in about 6 weeks. So In the meantime I went back to see my family doc and she decided that it had been 5 weeks and that it was costing my company too much money to be off so she sent me back to work for 2 hours a day. I argued with her but to know avail I had to go back. I also tried to contact my surgeon and get in to see him a week early, but I could only get in to see him on the exact same day my doc sent me back to work.
So I went back to work on crutches, in an automotive parts factory, (my isn't it amazing the rules they break just to get you back to work) I went to work at 8am - 10 am and then to see my surgeon at 1pm. When I seen him he was quite upset that I had been sent back to work and at that time diagnosed me with RSD and put me off work again. This was right before Christmas, and just because I went back to work for the 2 hours on that one day and then was off again, Workers Comp cut my pay cheques off. It was terrible. Needless to say it "only" took me two months to get my money back.
I have been through 4 epidural block, 4 cathedar blocks oof 7-10 days each. I am on 1800 mg of gabapentin, 40 mg of amitriptline and about 2 - 4 percocets a day depending. Nothing seems to be helping. Like everyone else here I am looking to find some answers. Unfortunately all along my doc has been telling me that it would be highly unlikely that this would be a permanent disability that most people get better. I am finding out that that may not be entirely true. It seems to me that there are more people out there than others realize that have this terrible disease.
RSD is at this point totally been running my life. Not only is the pain intense, but now I have a weight problem again. That I have previously worked so hard to lose. It took me a total of 4 years to lose the weight I needed and now it is slowly creeping up on me. I have a very unsupportive family doc that knows nothing about RSD that has come right out and told me that she does not like the fact that I have cost my company so much money and that I am too overweight and need to do something about it. Needless to say she did not have a very freindly response. The hard thing right now is that docs here are very scarce. So right now I am just looking for all possible options on my own and if I find some new friends and support groups that is all that much better. So let me just say thank you in advance to all of you that offer me any help or support.
I am sure that there is so much more about my personal experience that I could write, but I do not want to bore you all with all the same symptoms, although I do wish to tell you that comp has sent me to see a pscycologist (spelling) to learn to deal with the pain, which I was quite skeptical about however, one thing he did teach me is that your body temp should be about 95 degrees. He says that stress lowers that temp and therefore drops the temp in your extremities thus no endorphins etc. He took my temp between my thumb and first finger and my temp was 77 degrees, he then showed me relaxation techniques (breathing etc) and as I relaxed the temp went up. He feels that if we can get the temp up to 95 degrees that will help the blood flow and everything in the extremities. He has not proven this too me yet but if it helps I will let you all know. I have just started seeing him. Right now i will try anything to rid my life of this pain.



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Recommend Delete Message 2 of 10 in Discussion

From: byrd45 Sent: 5/19/2005 9:43 AM
Hi casa,
I am so sorry that yet another person is forced to deal with unknowledgeable physicians and workers comp. I hate both of them and really who is the doctor working for, you or the company? She doesn't seem very caring about your welfare and sounds downright rude and unprofessional. Sorry, I just hate how people with RSD are treated it makes me sick. You don't deserve that at all. Have you stopped seeing her since she told you that you are fat and costing the company so much money? That is just really out of line on her part and I am glad you gave her a negative response she deserves that. That is the first time I heard of the temperature explanation,but it sounds like it would make sense. Relaxation techniques are a good thing to know to help the pain and if it helps your blood flow too great. It is non-invasive so I would be willing to try too. It really is good to look at all our options. As for RSD just going away you are right it doesn't usually go that way. It can go in remission where your body stops having RSD symptoms and the disease stops progressing and yes that is possible with some people. It is remission not a cure there is no cure at this time, but there is hope. Research is being done everyday and new ways of treating RSD are coming forward. Please don't ever think it is a lost cause okay. It can be scary and I know I have felt that way in the past, but the more stress you don't allow in your life the better. Stress is very bad for RSD. That is why relaxation techniques are a great idea. Please keep in touch and let us know how that is going for you. I would love to hear more about it!
Love,
Robyn


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Recommend Delete Message 3 of 10 in Discussion

From: casa7036 Sent: 5/19/2005 4:59 PM
Hey there Robyn, thank you for all your comfort and support. I will definately keep you updated on the body temperature thing. I was just wondering if you have been contacted by any other canadians? I have been to 2 RSD sites and everyone is from the US. I knwo that there has to be more canadians that have RSD as well. Not that I am saying there is anything wrong with the people in the US because I have made some great new friends that will remain my friend with or without RSD. But, it would be nice, to have someone maybe closer to me that I could share info with, incase they may have any information about some procedures that may be taking place around me that I am not aware of. Also have you heard of the drug Enbrel that Paula Abdul uses? I read an article where it says that it helps her a great deal and that she had to inject herself. It just sounds so different from anything that I have done. Any info you may have for me would be greatly appreciated, and i thank you for taking the time to respond to each and every new person to join. Its that personal touch that keeps me coming back. Thanks again! If you need anything from me dont hesitate to contact me
Christine


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Recommend Delete Message 4 of 10 in Discussion

From: wooggyyee Sent: 5/21/2005 4:47 AM
Hi Christine,
Im so sorry to hear about your experiences. I don't know what to tell you but hang in there and try to keep life together and perhaps someday they will find a cure for this RSD.
I would suggest perhaps you find another Primary DR so that all your treatments combine thru a central system so to speak. Its so hard with all the differnt DR's I see to keep all them informed on what the other one wants.
So I keep a journal with me I write down things such as Med changes and procdures ect. Evey time I go to a differnt DR I show them my journel and it helps keeping it.
I too do the tempature thing and I also have a mental imange of a peaceful place I have been to that when the pain is servere I am able to "go" to.
Anyway, I just wanted to respond and let you know I too am new to this feel free to email me anytime........
Rose
aka Wooggyyee


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Recommend Delete Message 5 of 10 in Discussion

From: byrd45 Sent: 5/22/2005 6:08 PM
Hi Christine,
We do have another member that I know of that is canadian. Marg, is canadian and she has a loved one with RSD. If we have any other members that are they haven't mentioned it. I will research about Enbrel and post what I find out on the general board so keep checking for it okay! I hope you are enjoying your weekend.
Love,
Robyn


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Recommend Delete Message 6 of 10 in Discussion

From: casa7036 Sent: 5/22/2005 11:34 PM
Hey Robyn
Thanks for the info. I know you said that Marg was canadian. Could you
contact her and ask her to email me. I went to the website to see if I
could locate her but was not able to . Thanks alot
Christine

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