Welcome From Robbie Lawrence
Published on 12/01,2008
First I would like to just welcome everyone, to our first Fibromyalgia support Blog. I created it with the though in mind, to let the people who have fibromyalgia share their thoughts, remedies, new information on Medications, that they received for the treatment of FM. I have employed this method of communication, to add another tool, to educate, inform, and heal, the wounds that have occurred over time. By miss informed Doctors, Friends and Family. With the advances in technology, the time has come to spread the message that we were never “CRAZY” and hopefully opens eyes and Minds.
11/05,2008, at 23:16
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Sarah,
First I want to think you for contacting us. We all have been through it our self. I read what you currently are taking. I used to be the same way. I did not even want to get out of bed but I had to because, the longer I laid there the more I began to hurt. There are a few medications you can take together to give you a more normal life. Please do not get me wrong I still have my days as we all do and will continue to have. I am not a doctor so you need to see your family doctor or the doctor that diagnosed you with Fibromyalgia, this way he knows what is best for you. I am taking Lyricia (Perqabalin) 150mg two times a day along with Ultram (Tramadol). That?s seems to work like a dream come true. Now depending on the person the Dr may want to place you on Cymbalta (Duloxetine) as well as with Lyricia the studies have found that by combining the two they help each other. Like I said there is several things on the internet about Fibromyalgia, just watch yourself some of the calms made are not totally true. If you are in the Huntsville Alabama area we would love to have you at our support group meetings. The times and place is located on our web in the info section http://www.hsvfm.org or any time you have a question e mail me at support@hsvfm.org . on a final note. The thing I have found is that fibromyalgia is so misdiagnosed. Doctors write proscriptions for pain pills. And before a person knows it they get dependant on them. Out of all the people I have spoken with, things I have read. Pain meds are no help to a person with fibromyalgia. I thought they were CRAZY my self but fibromyalgia is a nerve condition, once you get the right meds to place the coating back over the nerves the leg cramps, I.B.S and so many things seem to get so much better. So as a new comer, please don?t fall into the old trap of taking a lot of pain meds. Give the meds that I have spoken a chance first.
11/05,2008, at 03:58
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Thankyou so much guys! Ive had problems my whole life, I used to sleep through reccess and lunch breaks at school, on the concrete if I had to.I ve tried many sports but had to stop because of joint pain, even when taped up. Ditto for organ and clarinet. Ive had migraines and they never found anything, so Ive been labelled a hyperchondriac, bi-polar, self-stress with chronic joint pain. Now FINALLY Ive been diagnosed with fibromialgia. Its a relief to finally have a name, but I think its so misapplied that its hard to get people to understand. When I cant throw darts because of my shoulder, and I sleep at parties... Thankyou for all sharing your experiences. Has anyone got any advice for a newly-diagnosed? Im taking 50mg Endep, 50mgTramadol and 200mg Brufen daily but there is little or no difference. Painkillres seem to work for a few days then become ineffective. I found the same with my antidepressants. Im going to see a shrink on Friday, I feel like such a drag on my husband. Not even married two years and he's supporting me. Hope to get some stress management and self-worth from the shrink, has anyone found that helps? Iv been to them since I was 5 but I never liked sharing. Now Im accepting I have to, hope it will help. Anyway, glad to finally find some who understand, thankyou.
10/19,2008, at 21:43
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I just want to let everyone know we had to shut down the web. to see why go to http://www.hsvfm.org
10/15,2008, at 11:08
Visit Bev
Josh, I can see that you and Rob might need some help with this Blog and web site. Please contact me as I would like to offer my assistance in this area. Please tell Rob to stay strong...He has my support.
10/13,2008, at 12:54
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Hey My name is Josh, I am writting to let everyone know what is going on with robbie Lawrence. it is a sad thing. as you know he will help all with FM. there was a member that he helped. me and him went over to her house took her fishing with us and made her a part of our life. she was lonley and no friends so we were the friends. she had hot water problems also we helped her out. showed her how to use the computer and attach pic. to e mails. we even spent money out of her pocket, to buy her a new bathroom fixture. and we do not know what happened to her she went crazy. she called the police and told them that we broke into her home, and froze her locks off , that Robbie hacked her computer. and we messed whith her hotwater heater. yes we fixed her water heaterbut whay would she call the police on him and me??? well that was such a stressful thing for him that it made him have a stroke. this lady is all about not hurting any animals or being mean to them, but in turn she will cause a human to just about die, for her mind twisting games. I am so afraid of her and I thought it is like you can be put in to a hospital for harm to your self or to someone, well Terry Sharpe suer did harm him and if anyone has anydoing with her please stay back as you can see. what a thinks for helping someone. so if anyone can imagine what hell we have been through, as of this point Robbie cant even get on this comp. he is confused, and may be the web and all will have to be taken down. with bills and no money and if he has to fight this thing legal costs.
09/14,2008, at 17:42
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Pam, you need to check your our spot light section in our web, we have a great on article this topic, it was written by Lesley Guerin. the link is http://www.hsvfm.org/spot_light.htm or just click on my name visit robbie
09/12,2008, at 01:13
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The thing that I have found that is so hard to take is the family. They believed I was crazy, Now my son (bless Him) now is facing the same problems that I started
having over 20 years. At that time it didn't really have a name. Fibrositis was what they called it back then. I found that most bosses have no feelings when you are having a bad day. They can intimidate you but can't bite. I figure I am not the only one that had to live through this stuff.
Since I no longer work I stay at home and look at the 4 walls and depression is my partner. I use love to go to thrift shops and yard sales a lot, but due to lack of a car and problems with my head and nerves I just stay around here. I am getting to the point that I would just like to stay in the bed or house. My nerves have gotten so bad I'm having panic attach some days and usually just cancel what I had planed to do. If there is some one out there that has faced this and can provide me with some advise on how to fight the panic attaches Please call me (Pam) at 256-852-3440.
I have been on disability since 2004. The first time I applied I was turned down, the second time I had a lawyer and got approved. The thing about disability is that they hope by turning you down or making you keep filling forms that you will just give up and not try again. This is money we earned and paid in so it is really our money. Just keep in mind they can not hurt you and that you are going to fight to the end. I will be glad to talk to anyone that has questions on this. I may be able to provide you with much information but I can listen. I(Pam) can be reached at 256-852-3440 most days.
Hope the best to all keep your head up and bow to God.
09/09,2008, at 22:01
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I am so glad that everyone is starting to use this at first I did not think they would. I just want everyone to kknow our live helpdesk is up and running. we are going to have a few bugs at first. it is working and I hope to have a person on call 24/7 to help people wiith questions relating to Fibromyalgia. I still need input on how to make our web better, as everyone knows we have not tried to make any money to pay for this stuff. I will never ask any of you for money. I know what I am going through. I know anyone with FM has problems with bills themselves. I had been in a battle with NFA (National Fibromyalgia Association)on support. if I can get this thing off the ground they need to be fearing us here in huntsville. we all are not Rednecks, some of us not cant spell or type worth a darrrrrrrn :) but we were not always living in the woods either. if the NFA looks at what Huntsville is known for they just might take a different approach at how they handle or treat there support groups under them, just please give me anyfeed back. thank you
09/09,2008, at 18:42
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i was one of the fourtunate ones that got my disability on the first try. I truly believe that it was the neurosurgeons opinions and diagnosis that moved the disability through. I have been on disability since 2001. money going out keeps increasing and money coming in stays the same. I am sure that all of you feel the same. what i could get by on has now become almost impossible. Not that I could do anything about it. career is impossible. i have found that I schedule things for myself to do each day and stick with it.....If you take a day off and you'll do it tomorrow, tomorrow will never come. Each day is harder to restart. that is why i commit myself for something simple each day, then I have no choice I move and acutally getting some small things accomplished. Mornings are better for me, once it is after 2 pm I'm not much good and more likely to cancel. I have also found that God is always close and His expectations are the only one that counts. I have learned to forgive myself for not being able to do everything and for not being everything to everyone. Learning to think of self first, as in "is that a reasonable thing for me to do? or would I expect anyone with FM to do that? Sometimes it makes my expectation of myself more realistic and learning how to just say ""NO"".
09/09,2008, at 15:14
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just to let everyone know I am in the process of geting our live desk up and running. it should go online today or night. this way if you need to contact us, we will have a live support tech on duty, to help you with all your questions. just click and you will be connected. I am just wating to see when the NFA will start there own Blog and Live desk. I figure it will be in a week or so when they see this working. like the FM friendly DR's thing they used look at our web and then go to theres., and you will see the similitary. kinda funny :) one way street
09/09,2008, at 14:53
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I am too in the process of trying to get mine I want for you to go to this web links and red thim. I was turned don the first time I have not got me a lawyer. if you are truley sick then why pay your money to someone that you can do your self here is the 1st link just copy it and past
http://www.fmaware.org/site/News2?page=NewsArticle&id=6237
http://www.fmaware.org/site/News2?page=NewsArticle&id=6239
http://www.fmaware.org/site/News2?page=NewsArticle&id=6253
That should point you in the right direction
09/09,2008, at 14:39
Visit Sazzy
I have heard all the horror stories of applying for SS Disaability and I don't even know how to start this process. I am currently employed by a government Contractor. I've seen 11 doctors since I was diagnosed with FM in 2005. I've also had a Gastric Bypass surgery and that just compounds my medication problems. Can anyone share with me the process of applying for SS Disability? Should I get a lawyer now or do I need to wait for the first request to be denied. I've heard several things but nothing from someone that has applied and received the benefits. Your comments and suggestions would be greatly appreciated.
09/09,2008, at 13:43
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First I just wanted to say thanks to all the people who has been a part of this. for the last week I have been in contact with the NFA our contact was April Quinn well she kinda was Rude to me. it was more of an Intimidating thing. they had an isue with me using a few things from there web, we here are under thim and they are the big boys so I was not trying to make money with this and she said they saw us not trying to be. so for a week or 3 days I took every thing down relating to thim I had on there wating on permission from them. you know what is funny two days after they told me we had to wate for permission, all of a sudden they have a link for FM friendly Dr's if you want I will show you what we have and what they just posted and sent out as an e mail. I told April about this and she said she could show me doc. of how long they have been working on it. well I am not stupid by no means. I can make anykind of doc on this comp. I got the call on sept 9 back from april and they do not want us to use anything from NFA even thow we are under thim and not trying to make any money, yetthey want to use our Idea here. it is like they want a one way street. they can do what they want and not help a little support group HELP THE PEOPLE! I figure it is all about MONEY if no one go to there site it takes some Google ADsense money away. and with all there stupp they sell. I do not care what you say it is about money. they remind me of our goverenment sometimes the people has to watch them or they will start to do stupid things, well here is a example of the NFA getting Gov money and if they say they do not come on now. they like to miss use there power by telling the little people that they do not matter. thats the way I am feeling at this point. they really made me HOT!!! and they better watch out I do not care how big they are like I have always said ?Take care of the toes you step on today, because they might be connected to the Ass you kiss tomorrow" with that said they do not want me to show them our teeth I must have made someone worry. well they better worry now I am PISSED!! and that is not a good thing I am a layed back guy I will take a little crap but you know when it is time to fight I have no problem with starting to make this group grow, we will start selling stuff, if I have to go so far in dept to make this work and to spred the word on how one way the NFA is I will. I just cant beleave a National group would not back a group thats is under them. what kind of support is that! so if you are thinking on joining the NFA think about how they treated us here first.
09/03,2008, at 16:17
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you do not have to be a memberof our support group, to help out, by you just contacting us is a great thing you are wanting to do.contact me robbie@hsvfm.org that is my e mail, I have no idea on what topic to spot light but everyone knows how it is to have FM and, what we all go through, with life friends, and family. at any time anyone wants to reach me use my e mail. I am just like so many. I want to use everything to my advantage and make sure all the local news meda knows about us, I am in contact with a cable company and we ae getting ready to shoot a short commercial about FM and our support group. also everything to this point is comming out of my pocket. I hopfully will start to get a break. I did not want to advertise on the web but with me being down and not able to work it is hard. to pay the bills and keep things going. so google is wanting to start placing small assd on our site. I really do not want to. Lesley thank you I got to rambling and here is a great topic. FM how it affects your money, I know I am not a lone just about a lot of us with FM cant really work we start out and it gets bad over time. we making a real good living, and one day you open your eyes and it is all gone, I went from making over $120,000 a year to nothing. and that hurt us I mean bad. so with this in mind we have foung our topic :)
09/03,2008, at 12:31
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Hello! I am a new visitor to your website and blog; I'm not a member of your support group. I am a fellow sufferer from the very rural southeast corner of Morgan County. I could write about any number of FM-related topics. If you have chosen a specific topic, and would like me to write about it, please let me know.
09/02,2008, at 13:57
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just wanting to let everyone I am going to shift into a different gear. our next post will be on a topic of any FM related topic. I need help for a new post. I will like to pick a different topic each week. and place a spot light on it.
09/01,2008, at 22:20
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Glad to here from you, at any time you need to contact us I am at http://www.hsvfm.org I have been putting this together to try to help
08/31,2008, at 08:46
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Hello Robbie!! Am a newbie here but have also started a page on the same subject and all you have said is true, I live also with it but work through it, pain and all, except the fatigue.. then my brain says "i'm going to do this" and legs carry me straight to ly down which is quite a strange experience!!!
08/28,2008, at 17:15
Visit Heather Anderson
WAY TO GO!!! I hope someone will share some info on what to do for me. I do not have a lot of Energy. I have tried several things and nothing seems to work??
08/28,2008, at 15:35
Visit Bev
THIS IS A FABULOUS IDEA! This is going to be a valuable tool.