Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Hello, We are and have been in the same boat. Finding an affordable, skilled, and available therapist in Houston is almost non-existent. Here is what we did and helped us tremendously. We attended the parent workshops at www.Behavioranalysts.com. They are in California, but they also have online classes for parents that are affordable and invaluable. We decided that we are not going to wait for a therapist to help, we'll do it ourselves and in the meantime, we keep looking. Also FEAT Houston has a list of therapists, but you have to do the homework yourself in finding one that could work for you. The University of North Texas has also online classes as well. Contact www.featnt.org for more info. New and Frustrated > I have a son who will turn five in March, he's a great kid, the joy > of my life. Six months ago we went through testing at the Myer > center in Houston. He was diagnoised to be autistic. Since then > denial has come and gone, my son needs ABA therapy, but I am not > having any success in finding therapy for him. I live in Houston and > have contacted Texana, still waiting. Contacted Shape of behavior. > Still waiting.. Could anyone provide another avenue so my son can > get help. > > > thanks, > > > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by Disability: > SeekingJoyinDisability/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 Hello, We are and have been in the same boat. Finding an affordable, skilled, and available therapist in Houston is almost non-existent. Here is what we did and helped us tremendously. We attended the parent workshops at www.Behavioranalysts.com. They are in California, but they also have online classes for parents that are affordable and invaluable. We decided that we are not going to wait for a therapist to help, we'll do it ourselves and in the meantime, we keep looking. Also FEAT Houston has a list of therapists, but you have to do the homework yourself in finding one that could work for you. The University of North Texas has also online classes as well. Contact www.featnt.org for more info. New and Frustrated > I have a son who will turn five in March, he's a great kid, the joy > of my life. Six months ago we went through testing at the Myer > center in Houston. He was diagnoised to be autistic. Since then > denial has come and gone, my son needs ABA therapy, but I am not > having any success in finding therapy for him. I live in Houston and > have contacted Texana, still waiting. Contacted Shape of behavior. > Still waiting.. Could anyone provide another avenue so my son can > get help. > > > thanks, > > > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by Disability: > SeekingJoyinDisability/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 ... If you are looking for therapists in the west side of Houston I may be able to give you some good contacts. Please email me off list. KK New and Frustrated > I have a son who will turn five in March, he's a great kid, the joy > of my life. Six months ago we went through testing at the Myer > center in Houston. He was diagnoised to be autistic. Since then > denial has come and gone, my son needs ABA therapy, but I am not > having any success in finding therapy for him. I live in Houston and > have contacted Texana, still waiting. Contacted Shape of behavior. > Still waiting.. Could anyone provide another avenue so my son can > get help. > > > thanks, > > > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by Disability: > SeekingJoyinDisability/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2004 Report Share Posted January 21, 2004 ... If you are looking for therapists in the west side of Houston I may be able to give you some good contacts. Please email me off list. KK New and Frustrated > I have a son who will turn five in March, he's a great kid, the joy > of my life. Six months ago we went through testing at the Myer > center in Houston. He was diagnoised to be autistic. Since then > denial has come and gone, my son needs ABA therapy, but I am not > having any success in finding therapy for him. I live in Houston and > have contacted Texana, still waiting. Contacted Shape of behavior. > Still waiting.. Could anyone provide another avenue so my son can > get help. > > > thanks, > > > > > Unlocking Autism > www.UnlockingAutism.org > > Autism-Awareness-Action > Worldwide internet group for parents who have a > child with AUTISM. > > SeekingJoyinDisability - Prayer support for those touched by Disability: > SeekingJoyinDisability/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Hi, I highly recommend Marc Mullins from Austin. He works with Autism Partnership. He is their Texas consultant and travels around Texas helping parents set up programs. His contact info is available on their website at: http://www.autismpartnership.com/staffemail.htm If you are looking for something more like a treatment center, you might try contacting parents in the houston area and networking with them. There is a FEAT chapter in Houston- their website is at: http://www.feathouston.org/ They might can better direct you to resources in and around Houston. Don't give up. ABA, (and other therapies) have turned my sons life around (positively!) Good luck, J. P. Reirdon Webmaster <http://www.featnt.org/> " Building a Bridge of Hope " Webmaster <http://www.AutismTreatment.info/> You CAN treat Autism!! Get treatment tips for children with Autism, PDD and Aperger's Syndrome from parents who have successfully helped their children. Webmaster <http://www.StarThrowers.org/> Fundraising for In-Home treatment programs Message: 2 Date: Thu, 22 Jan 2004 02:55:23 -0000 From: " dreece318 " <kevin.reece@...> Subject: New and Frustrated I have a son who will turn five in March, he's a great kid, the joy of my life. Six months ago we went through testing at the Myer center in Houston. He was diagnoised to be autistic. Since then denial has come and gone, my son needs ABA therapy, but I am not having any success in finding therapy for him. I live in Houston and have contacted Texana, still waiting. Contacted Shape of behavior. Still waiting.. Could anyone provide another avenue so my son can get help. thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Hi, I highly recommend Marc Mullins from Austin. He works with Autism Partnership. He is their Texas consultant and travels around Texas helping parents set up programs. His contact info is available on their website at: http://www.autismpartnership.com/staffemail.htm If you are looking for something more like a treatment center, you might try contacting parents in the houston area and networking with them. There is a FEAT chapter in Houston- their website is at: http://www.feathouston.org/ They might can better direct you to resources in and around Houston. Don't give up. ABA, (and other therapies) have turned my sons life around (positively!) Good luck, J. P. Reirdon Webmaster <http://www.featnt.org/> " Building a Bridge of Hope " Webmaster <http://www.AutismTreatment.info/> You CAN treat Autism!! Get treatment tips for children with Autism, PDD and Aperger's Syndrome from parents who have successfully helped their children. Webmaster <http://www.StarThrowers.org/> Fundraising for In-Home treatment programs Message: 2 Date: Thu, 22 Jan 2004 02:55:23 -0000 From: " dreece318 " <kevin.reece@...> Subject: New and Frustrated I have a son who will turn five in March, he's a great kid, the joy of my life. Six months ago we went through testing at the Myer center in Houston. He was diagnoised to be autistic. Since then denial has come and gone, my son needs ABA therapy, but I am not having any success in finding therapy for him. I live in Houston and have contacted Texana, still waiting. Contacted Shape of behavior. Still waiting.. Could anyone provide another avenue so my son can get help. thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Call Crossley-Dantzler, BCBA, M.S.Ed., at Including Kids in Humble at 281-852-0501. She has a center-based ABA program. Our son (almost age six) has been with her program since 6/02. Good luck! Amy > I have a son who will turn five in March, he's a great kid, the joy > of my life. Six months ago we went through testing at the Myer > center in Houston. He was diagnoised to be autistic. Since then > denial has come and gone, my son needs ABA therapy, but I am not > having any success in finding therapy for him. I live in Houston and > have contacted Texana, still waiting. Contacted Shape of behavior. > Still waiting.. Could anyone provide another avenue so my son can > get help. > > > thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Call Crossley-Dantzler, BCBA, M.S.Ed., at Including Kids in Humble at 281-852-0501. She has a center-based ABA program. Our son (almost age six) has been with her program since 6/02. Good luck! Amy > I have a son who will turn five in March, he's a great kid, the joy > of my life. Six months ago we went through testing at the Myer > center in Houston. He was diagnoised to be autistic. Since then > denial has come and gone, my son needs ABA therapy, but I am not > having any success in finding therapy for him. I live in Houston and > have contacted Texana, still waiting. Contacted Shape of behavior. > Still waiting.. Could anyone provide another avenue so my son can > get help. > > > thanks, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Thank you so much for your response. I will call tomorrow. Re: New and Frustrated Call Crossley-Dantzler, BCBA, M.S.Ed., at Including Kids in Humble at 281-852-0501. She has a center-based ABA program. Our son (almost age six) has been with her program since 6/02. Good luck! Amy > I have a son who will turn five in March, he's a great kid, the joy > of my life. Six months ago we went through testing at the Myer > center in Houston. He was diagnoised to be autistic. Since then > denial has come and gone, my son needs ABA therapy, but I am not > having any success in finding therapy for him. I live in Houston and > have contacted Texana, still waiting. Contacted Shape of behavior. > Still waiting.. Could anyone provide another avenue so my son can > get help. > > > thanks, > > Unlocking Autism www.UnlockingAutism.org Autism-Awareness-Action Worldwide internet group for parents who have a child with AUTISM. SeekingJoyinDisability - Prayer support for those touched by Disability: SeekingJoyinDisability/ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2004 Report Share Posted January 22, 2004 Thank you so much for your response. I will call tomorrow. Re: New and Frustrated Call Crossley-Dantzler, BCBA, M.S.Ed., at Including Kids in Humble at 281-852-0501. She has a center-based ABA program. Our son (almost age six) has been with her program since 6/02. Good luck! Amy > I have a son who will turn five in March, he's a great kid, the joy > of my life. Six months ago we went through testing at the Myer > center in Houston. He was diagnoised to be autistic. Since then > denial has come and gone, my son needs ABA therapy, but I am not > having any success in finding therapy for him. I live in Houston and > have contacted Texana, still waiting. Contacted Shape of behavior. > Still waiting.. Could anyone provide another avenue so my son can > get help. > > > thanks, > > Unlocking Autism www.UnlockingAutism.org Autism-Awareness-Action Worldwide internet group for parents who have a child with AUTISM. SeekingJoyinDisability - Prayer support for those touched by Disability: SeekingJoyinDisability/ _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Hi and welcome, This group has been so much help to me...I can't thank them enough!! My daughter is 9 and has trouble with her cloths being " just right " mainly her underwear. I have had her to one psychiatrist that saw us both together 3 times and changed her meds three times... and then threatened to put her in the hospital for 3 days to " make her stop " doing these things. Needless to say we called for another referral...my next appointment is Friday for an hour long appointment... I don't know what to expect...but I will NOT allow the doc. to see her alone... that would crush Crystal. Right now she's been on Zoloft 50mg. for a month and a half.... I have seen positive results as far as the anxiety attacks over her cloths and she's no longer violent...but she still has her routine with the cloths going in the dryer " to tighten them up a bit " ... I will post after the appointment... Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Hi, welcome! I have a son, 16, whose OCD ordeal began around age 11.5. I'm just a parent, but with your description it certainly sounds like OCD!! A good place to read about OCD is at the OCD Foundation website at http://ocfoundation.org There you will read about medications that can help and also Cognitive Behavioral Therapy (CBT) and Exposure & Response - or Ritual - Prevention (ERP). Psychiatrists will generally prescribe medication(s) for OCD. This can help lower all the anxiety associated with OCD, and sometimes the obsessions and/or compulsions ease up also. But CBT with ERP is what the main therapy/treatment for OCD is, so you might ask this doctor if he can refer you to anyone who is *experienced* in treating OCD in children with CBT & ERP. Many of the children in this group use medication, often from a very young age. And meds don't have to be a " life long " thing. The tools learned in therapy can help a great deal with learning to boss back OCD. My son was sooooo bad also when his OCD began. And it seemed pretty abrupt with its onset. He did have some minor OCD behaviors growing up but it was nothing that distressed any of us/him (tracing over letters he wrote sometimes, asking reassurance questions a lot -same ones again & again, and other little things). At the beginning of 6th grade, he had 24/7 compulsions. He said he felt he had to do them or " something bad would happen to him " and he had to get a " just right " feeling. His involved a lot of touching (apparently not scare of germs!) rituals and some odd movements; he went thru some repetitive things; doing things the " right " way so it " felt right " was hard and he'd repeat, his writing even changed and became illegible...I could go on and on!! Those first months I thought he might need hospitalized, it really was bad. Anyway, today things are sooooo much better and OCD is very much in the background of his life and the rest of the family's! So tho I wasn't sure he/we would survive those terrible months that first year, things DO get better! Just my opinion here - I think the psych will go by what you say, what your dd might say and prescribe medication. Ask him for any referrals to therapists he might know of; check with your insurance company for any referrals on their list; ask here for anyone who might live in your area if they know of anyone. A lot of times a person can't get much out of therapy if their OCD is so intense/disruptive and meds can help ease things up a bit so that they can participate in therapy. I can't emphasize " experience in treating OCD " enough, as " talk " therapy won't work. We had no one near us who was experienced, and I work at our local mental health center (though we are a pretty rural area I guess, but even nearby cities had no one for kids, not really adults either). With the help of this great group and LOTS of reading, we managed on our own to work on things but it would have gone MUCH faster with a good therapist. Well, I have dragged on here! Hang in there, it's really tough when OCD is sooooo bad and causing such distress to sufferer AND family, and the sufferer really can't help it, saying " stop " just will not work! And remember it is also called the " doubting " disease and just defies logic (logic won't work!) and it can wax & wane with symptoms. Keep us updated and write us here anytime! Hang in there, things will get better, it just takes TIME these first appts and in seeking treatment! single mom, 3 sons , 16, with OCD, dysgraphia and Aspergers , 16, twin (not identical) Randall, 20 > Hi everyone, > > My dd will turn 8 next month and has had several dx beginning with > low muscle tone/ sensory integration and at 4 years old Asperger > syndrome. I find myself here because in the last 8 months we have > noticed obsessive behaviors that have become worse. My dh and I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2005 Report Share Posted August 22, 2005 Hi, welcome! I have a son, 16, whose OCD ordeal began around age 11.5. I'm just a parent, but with your description it certainly sounds like OCD!! A good place to read about OCD is at the OCD Foundation website at http://ocfoundation.org There you will read about medications that can help and also Cognitive Behavioral Therapy (CBT) and Exposure & Response - or Ritual - Prevention (ERP). Psychiatrists will generally prescribe medication(s) for OCD. This can help lower all the anxiety associated with OCD, and sometimes the obsessions and/or compulsions ease up also. But CBT with ERP is what the main therapy/treatment for OCD is, so you might ask this doctor if he can refer you to anyone who is *experienced* in treating OCD in children with CBT & ERP. Many of the children in this group use medication, often from a very young age. And meds don't have to be a " life long " thing. The tools learned in therapy can help a great deal with learning to boss back OCD. My son was sooooo bad also when his OCD began. And it seemed pretty abrupt with its onset. He did have some minor OCD behaviors growing up but it was nothing that distressed any of us/him (tracing over letters he wrote sometimes, asking reassurance questions a lot -same ones again & again, and other little things). At the beginning of 6th grade, he had 24/7 compulsions. He said he felt he had to do them or " something bad would happen to him " and he had to get a " just right " feeling. His involved a lot of touching (apparently not scare of germs!) rituals and some odd movements; he went thru some repetitive things; doing things the " right " way so it " felt right " was hard and he'd repeat, his writing even changed and became illegible...I could go on and on!! Those first months I thought he might need hospitalized, it really was bad. Anyway, today things are sooooo much better and OCD is very much in the background of his life and the rest of the family's! So tho I wasn't sure he/we would survive those terrible months that first year, things DO get better! Just my opinion here - I think the psych will go by what you say, what your dd might say and prescribe medication. Ask him for any referrals to therapists he might know of; check with your insurance company for any referrals on their list; ask here for anyone who might live in your area if they know of anyone. A lot of times a person can't get much out of therapy if their OCD is so intense/disruptive and meds can help ease things up a bit so that they can participate in therapy. I can't emphasize " experience in treating OCD " enough, as " talk " therapy won't work. We had no one near us who was experienced, and I work at our local mental health center (though we are a pretty rural area I guess, but even nearby cities had no one for kids, not really adults either). With the help of this great group and LOTS of reading, we managed on our own to work on things but it would have gone MUCH faster with a good therapist. Well, I have dragged on here! Hang in there, it's really tough when OCD is sooooo bad and causing such distress to sufferer AND family, and the sufferer really can't help it, saying " stop " just will not work! And remember it is also called the " doubting " disease and just defies logic (logic won't work!) and it can wax & wane with symptoms. Keep us updated and write us here anytime! Hang in there, things will get better, it just takes TIME these first appts and in seeking treatment! single mom, 3 sons , 16, with OCD, dysgraphia and Aspergers , 16, twin (not identical) Randall, 20 > Hi everyone, > > My dd will turn 8 next month and has had several dx beginning with > low muscle tone/ sensory integration and at 4 years old Asperger > syndrome. I find myself here because in the last 8 months we have > noticed obsessive behaviors that have become worse. My dh and I Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2005 Report Share Posted August 23, 2005 I am new to all of this as well, but it does soundlike your dd does have some OCD symptoms. It is unfortunate that doctors, including psychiatrists, are often paternalistic and do not explain their thoughts about a diagnosis and their treatment plans (I am a nurse). In some cases this is necessary, but I would say in most cases, the family and patient can be included. That being said, if you could establish a better communication system with your doctor it sounds as though he is doing the right thing. Best wishes, Bonnie > Hi everyone, > > My dd will turn 8 next month and has had several dx beginning with > low muscle tone/ sensory integration and at 4 years old Asperger > syndrome. I find myself here because in the last 8 months we have > noticed obsessive behaviors that have become worse. My dh and I had > just decided that we should make an appointement with her Doctor but > decided to wait until after our vacation. That was a big mistake. > We drove for 5 hours with her refusing to touch the armrests for fear > of germs. I had brought goodie bags for her and my other dd and > every new toy I produced was met with joy that lasted all of 5 > minutes. She then announced that someone had put drugs on them and > she couldn't touch them. We went through 2 boxes of wet wipes and > when we finally arrived at our destination we had a crying miserable > girl on our hands. This caught us completely off guard. After a > long conversation with her Dr. we followed his advice and took her > to an ER where they did an exam to rule out brain tumor, etc. We > then came home and were referred to a Psychiatrist. I have been to > several psychologists and my daughter has received some services in > the past but this is very confusing to me. The first appointment was > just me. This Dr spent only 20 minutes with me. He hinted that we > had received the wrong dx to begin with and grilled me on the mental > health history of the family. He has seen my daughter alone 2 times, > 20 minutes each time and I am still wondering what do I do to help > her in the meantime? I called his office and told him she was in the > fetal positon after refusing to go outside because a rabid animal may > have drooled on the grass. He told me not to confront her and to > divert her attention and get her involved in something else. After I > pushed him into giving me some feedback he said he was relatively > sure she had ocd and was considering meds. I feel so left out of the > process. Is this the normal course of action? > > Sorry so long, thanks for any input. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Hello , here. I have fibro and chronic fatigue, MFS ,Lyme disease, migraines, a rare form of anemia {born with this}, thyroid problems and liver/kidney issues. I have had Fibro longer than it has been diagnosed but it was diagnosed nine years ago. The rest has been diagnosed as the years go on. You will find that when you have something like Fibro or MS or even Cancer you have got to be your own researcher and doctor. You will have to research, study and bring that research and ideas about your symptoms to your doctor and more often than not you will have to change doctors more than once. I have a primary care doctor. One that is not a very good diagnostician but she will do anything I request of her. Will send me to any doctor I need to go to and do any test I require. My real doctor is a Naturopathic Doctor. I trust her the most. Naturopaths study medicine for four years right along side regular doctors then branch out in their 5th year to their specialties. They know how to read tests in greater detail picking up things that your primary would never see, the know everything about homeopathy, they can do adjustments, cranial/sacrial work . etc...etc..etc. They cure they don't just have you manage. As for you fatigue there is a cruel reality to it. Sleep does not help because we do not get the kind of sleep that is necessary to replenish the body. I think of my day as in points. I have ten points a day. Sometimes less, sometimes more. I also have a diet that support my body. I do not eat anything that can trigger the Fibro or irritate the immune system. I eat a superior diet and I eat enough. I do not starve my body of protein so it can work on rebuilding and repairing itself. I am also at my proper wieght. I never, I mean never eat anything processed, do not eat sugar, wheat,grains or use any toxins on my body. I have horses and train. I have a design business. I have a special need teenager that is gifted and very high maintenance. I have lots of animals. I have a legal battle with my school system for my daughters rights. I am married to a husband who is very helpful and understanding {however I did have to train him and send him via email lots and lots of info on fibro}. I have a very full life. Some days I just have to call it a day and rest. Like today. I had a migraine, took my meds and I am going to lie in the sun and rest the whole day. I have to. No other choice. You have to adjust your life. I still battle with that and I still get told to sit down and rest. Now this does not mean that I have given up. I have a plan. Holistic meds and supplements working towards curing my problems. I am better. But it is going to be a long haul. Probably a five year haul. My life has had to adjust. I fought it very hard against adjusting so my fibro got very, very bad. Now look at where I am at. Now the good thing is you are among people who know alot. That can help you, support you, give your research and hold your hand as you design a life that supports you. That is what you need. Feel free to always email me whenever you need to. Anytime. I will always answer. hugs, Sue I included a picture of Nell and I. From: Gaduyon <noerzmom@...>Subject: new and frustrated Date: Wednesday, May 20, 2009, 10:40 PM Hi everyone, I am brand new to the group. I have a couple of questions .How do you know if you have fibromyalgia, chronic fatigue syndrome or both? It seems like the main symptoms are the same. this is my story.About 9 years ago, I was told that I had CFS. I had to quit work and really slow down for a bit , but it went into a remission. I did well for about 7 years and then it begain to return. I was in deep denial because I didn't want to go through all that again. It started with the brain fog and progressed into joint and muscle pains and fatigue- all very reminiscent of the time before. that was when I finally went to the Dr again and they siad FMS, probably. They did the usual blood tests and x-rays and ruled out a bunch of stuff like lupus. Then, I started having neurological symptoms(burning skin, buzzing, weird muscle cramps like charley horses but they happen no matter what I am doing - not just sleeping or exercising-My Gen Pract sent me to the neurologist who really expected to see nerve damage based on my symptoms, but none was there. I also have gastrointestinal issues, dizziness and the fatigue lately has been awful. I feel like it is robbing my child of the mom he should have, becasue by the time I get home from work, I need to rest and on the weekends, I am so tired and have so much to do. Nobody at work knows what an effort I have to make to be there everyday and my husband just doesn't understand and gets frustrated becasue I am always tired and feeling icky. I am sorry to be so long winded and whiny. I know there are people out there much worse off than me. I just get frustrated, and I know y'all will understand. also, I ahve been able to find some meds that help some with the pain, but I still can't find anything to help with fatigue. Anybody got any suggestions for that- besides sleep (haha) Thanks for listening. G 1 of 1 Photo(s) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Your story sounds so familiar. Welcome to this group!!!! For me since I can't take anything for my Fibromyalgia I have learned to adapt and have had to listen to my body and how it is feeling from day to day and even moment to moment. It is difficult when even the simplest task like getting dressed, brushing hair not alone washing it, brushing teeth, even just moving is so hard somedays. I know these suggestions will not be for everyone but what I have found has helped me is When I cook meals I make extras so that on the days where I can't I have stuff already made up. If I can just even do 2 minutes at a time around the house throughout the day then it helps keep the house in order. I break big things down and make them into sections like vacuuming and doing floors etc. For laundry I will take a few things down as I go to the laundry room and put them in the washer so that when I am ready most things are already there ready for me. I make a list of 10 items that needs doing and play with other people so you are not always in control of what number gets called. I will sort mail as soon as it comes in and shed right away and then put bills to pay on top of the printer so it is ready to pay. These are just a few things that I have learned to do to adjust. The big one though is if I know that i am going out I will plan for a light day and take a nap before hand or just rest and take it easy. I know what it is like to to give up working full time because of Fibromyalgia and give up a lot for I used to be so active always involved in sports and now I walk with a cane. But I have also gained so much as well that with my positive attitude and smiling I encourage others and that is a big blessing. Take care and I hope that you and your family are healthy, happy and having a great day, On Wed, May 20, 2009 at 8:40 PM, Gaduyon <noerzmom@...> wrote: Hi everyone,     I am brand new to the group. I have a couple of questions .How do you know if you have fibromyalgia, chronic fatigue syndrome or both? It seems like the main symptoms are the same. this is my story.About 9 years ago, I was told that I had CFS. I had to quit work and really slow down for a bit , but it went into a remission. I did well for about 7 years and then it begain to return. I was in deep denial because I didn't want to go through all that again. It started with the brain fog and progressed into joint and muscle pains and fatigue- all very reminiscent of the time before. that was when I finally went to the Dr again and they siad FMS, probably. They did the usual blood tests and x-rays and ruled out a bunch of stuff like lupus. Then, I started having neurological symptoms(burning skin, buzzing, weird muscle cramps like charley horses but they happen no matter what I am doing - not just sleeping or exercising-My Gen Pract sent me to the neurologist who really expected to see nerve damage based on my symptoms, but none was there. I also have gastrointestinal issues, dizziness and the fatigue lately has been awful.    I feel like it is robbing my child of the mom he should have, becasue by the time I get home from work, I need to rest and on the weekends, I am so tired and have so much to do. Nobody at work knows what an effort I have to make to be there everyday and my husband just doesn't understand and gets frustrated becasue I am always tired and feeling icky. I am sorry to be so long winded and whiny. I know there are people out there much worse off than me. I just get frustrated, and I know y'all will understand. also, I ahve been able to find some meds that help some with the pain, but I still can't find anything to help with fatigue. Anybody got any suggestions for that- besides sleep (haha) Thanks for listening.  G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 , If you can't take anything for your fibro, you need to talk to Sue. Sue knows all about natural treatments, the best diets, the best everything. Sue is a gem. Pam Re: new and frustrated Your story sounds so familiar. Welcome to this group!!!! For me since I can't take anything for my Fibromyalgia I have learned to adapt and have had to listen to my body and how it is feeling from day to day and even moment to moment. It is difficult when even the simplest task like getting dressed, brushing hair not alone washing it, brushing teeth, even just moving is so hard somedays. I know these suggestions will not be for everyone but what I have found has helped me is When I cook meals I make extras so that on the days where I can't I have stuff already made up. If I can just even do 2 minutes at a time around the house throughout the day then it helps keep the house in order. I break big things down and make them into sections like vacuuming and doing floors etc. For laundry I will take a few things down as I go to the laundry room and put them in the washer so that when I am ready most things are already there ready for me. I make a list of 10 items that needs doing and play with other people so you are not always in control of what number gets called. I will sort mail as soon as it comes in and shed right away and then put bills to pay on top of the printer so it is ready to pay. These are just a few things that I have learned to do to adjust. The big one though is if I know that i am going out I will plan for a light day and take a nap before hand or just rest and take it easy. I know what it is like to to give up working full time because of Fibromyalgia and give up a lot for I used to be so active always involved in sports and now I walk with a cane. But I have also gained so much as well that with my positive attitude and smiling I encourage others and that is a big blessing. Take care and I hope that you and your family are healthy, happy and having a great day, On Wed, May 20, 2009 at 8:40 PM, Gaduyon <noerzmom > wrote: Hi everyone, I am brand new to the group. I have a couple of questions .How do you know if you have fibromyalgia, chronic fatigue syndrome or both? It seems like the main symptoms are the same. this is my story.About 9 years ago, I was told that I had CFS. I had to quit work and really slow down for a bit , but it went into a remission. I did well for about 7 years and then it begain to return. I was in deep denial because I didn't want to go through all that again. It started with the brain fog and progressed into joint and muscle pains and fatigue- all very reminiscent of the time before. that was when I finally went to the Dr again and they siad FMS, probably. They did the usual blood tests and x-rays and ruled out a bunch of stuff like lupus. Then, I started having neurological symptoms(burning skin, buzzing, weird muscle cramps like charley horses but they happen no matter what I am doing - not just sleeping or exercising-My Gen Pract sent me to the neurologist who really expected to see nerve damage based on my symptoms, but none was there. I also have gastrointestinal issues, dizziness and the fatigue lately has been awful. I feel like it is robbing my child of the mom he should have, becasue by the time I get home from work, I need to rest and on the weekends, I am so tired and have so much to do. Nobody at work knows what an effort I have to make to be there everyday and my husband just doesn't understand and gets frustrated becasue I am always tired and feeling icky. I am sorry to be so long winded and whiny. I know there are people out there much worse off than me. I just get frustrated, and I know y'all will understand. also, I ahve been able to find some meds that help some with the pain, but I still can't find anything to help with fatigue. Anybody got any suggestions for that- besides sleep (haha) Thanks for listening. G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Hi Sue, Thanks so much.What an adorable picture. Is Nell your daughter? SHe is beautiful! I am sorry for the legal battle youre going through with the school. I hate to hear that kids aren't getting what they are supposed to get. I am a teacher. I also have a special needs child. Noah is 5 and totally blind, so I can relate somewhat to the special challenges having a special needs child brings. I would love to find a naturopath who knows about FMS or CFS, but I have been hitting brick walls around my area to find someone like that. Thanks again G > > > From: Gaduyon <noerzmom@...> > Subject: new and frustrated > > Date: Wednesday, May 20, 2009, 10:40 PM > > > > > > > > > > > > > > > > > > Hi everyone, >  >    I am brand new to the group. I have a couple of questions .How do you know if you have fibromyalgia, chronic fatigue syndrome or both? It seems like the main symptoms are the same. this is my story.About 9 years ago, I was told that I had CFS. I had to quit work and really slow down for a bit , but it went into a remission. I did well for about 7 years and then it begain to return. I was in deep denial because I didn't want to go through all that again. It started with the brain fog and progressed into joint and muscle pains and fatigue- all very reminiscent of the time before. that was when I finally went to the Dr again and they siad FMS, probably. They did the usual blood tests and x-rays and ruled out a bunch of stuff like lupus. Then, I started having neurological symptoms(burning skin, buzzing, weird muscle cramps like charley horses but they happen no matter what I am doing - not just sleeping or exercising-My Gen Pract > sent me to the neurologist who really expected to see nerve damage based on my symptoms, but none was there. I also have gastrointestinal issues, dizziness and the fatigue lately has been awful. >    I feel like it is robbing my child of the mom he should have, becasue by the time I get home from work, I need to rest and on the weekends, I am so tired and have so much to do. Nobody at work knows what an effort I have to make to be there everyday and my husband just doesn't understand and gets frustrated becasue I am always tired and feeling icky. I am sorry to be so long winded and whiny. I know there are people out there much worse off than me. I just get frustrated, and I know y'all will understand. also, I ahve been able to find some meds that help some with the pain, but I still can't find anything to help with fatigue. Anybody got any suggestions for that- besides sleep (haha) > Thanks for listening. >  > G > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2009 Report Share Posted May 21, 2009 Thanks, those are really good suggestions. I hope to be able to do some of them this summer. right now, by the time I get home and get my son straight, I am wiped. I sometimes have to nap before I can do prayers and night night songs with him . I am trying to learn to listen to my body. It would help if my husband understood more, but I think he jsut doesn't want to know about it becasue he can't fix me. I will keep you in my prayers for more good days than bad.Thanks again and ahve a great day. G -- In , alwayssmiling JMD <alwayssmilingjmd@...> wrote: > > *Your story sounds so familiar. Welcome to this group!!!! For me since I > can't take anything for my Fibromyalgia I have learned to adapt and have had > to listen to my body and how it is feeling from day to day and even moment > to moment. It is difficult when even the simplest task like getting > dressed, brushing hair not alone washing it, brushing teeth, even just > moving is so hard somedays. I know these suggestions will not be for > everyone but what I have found has helped me is When I cook meals I make > extras so that on the days where I can't I have stuff already made up. If I > can just even do 2 minutes at a time around the house throughout the day > then it helps keep the house in order. I break big things down and make > them into sections like vacuuming and doing floors etc. For laundry I will > take a few things down as I go to the laundry room and put them in the > washer so that when I am ready most things are already there ready for me. > I make a list of 10 items that needs doing and play with other people so you > are not always in control of what number gets called. I will sort mail as > soon as it comes in and shed right away and then put bills to pay on top of > the printer so it is ready to pay. These are just a few things that I have > learned to do to adjust. The big one though is if I know that i am going > out I will plan for a light day and take a nap before hand or just rest and > take it easy. I know what it is like to to give up working full time > because of Fibromyalgia and give up a lot for I used to be so active always > involved in sports and now I walk with a cane. But I have also gained so > much as well that with my positive attitude and smiling I encourage others > and that is a big blessing. > Take care and I hope that you and your family are healthy, happy and having > a great day, > > * > On Wed, May 20, 2009 at 8:40 PM, Gaduyon <noerzmom@...> wrote: > > > > > > > Hi everyone, > > > > I am brand new to the group. I have a couple of questions .How do you > > know if you have fibromyalgia, chronic fatigue syndrome or both? It seems > > like the main symptoms are the same. this is my story.About 9 years ago, I > > was told that I had CFS. I had to quit work and really slow down for a bit > > , but it went into a remission. I did well for about 7 years and then it > > begain to return. I was in deep denial because I didn't want to go through > > all that again. It started with the brain fog and progressed into joint and > > muscle pains and fatigue- all very reminiscent of the time before. that was > > when I finally went to the Dr again and they siad FMS, probably. They did > > the usual blood tests and x-rays and ruled out a bunch of stuff like lupus. > > Then, I started having neurological symptoms(burning skin, buzzing, weird > > muscle cramps like charley horses but they happen no matter what I am doing > > - not just sleeping or exercising-My Gen Pract sent me to the neurologist > > who really expected to see nerve damage based on my symptoms, but none was > > there. I also have gastrointestinal issues, dizziness and the fatigue > > lately has been awful. > > I feel like it is robbing my child of the mom he should have, becasue > > by the time I get home from work, I need to rest and on the weekends, I am > > so tired and have so much to do. Nobody at work knows what an effort I have > > to make to be there everyday and my husband just doesn't understand and gets > > frustrated becasue I am always tired and feeling icky. I am sorry to be so > > long winded and whiny. I know there are people out there much worse off > > than me. I just get frustrated, and I know y'all will understand. also, I > > ahve been able to find some meds that help some with the pain, but I still > > can't find anything to help with fatigue. Anybody got any suggestions for > > that- besides sleep (haha) > > Thanks for listening. > > > > G > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 , Was Noah born blind? My dear friend and neighbor has been blind since she was a baby. She is a teacher. She lives by herself and does practically everything the rest of us do except see. I am so impressed by her. Does your son use a computer? My friend always wants to correspond with other blind people, especially children. She has a computer with a voice application and she has a braille printer. I guess your son would be in kindergarten, so he probably does not read or write yet, but he probably will soon. Where do you live? Pam new and frustrated> > Date: Wednesday, May 20, 2009, 10:40 PM> > > > > > > > > > > > > > > > > > Hi everyone,> > I am brand new to the group. I have a couple of questions .How do you know if you have fibromyalgia, chronic fatigue syndrome or both? It seems like the main symptoms are the same. this is my story.About 9 years ago, I was told that I had CFS. I had to quit work and really slow down for a bit , but it went into a remission. I did well for about 7 years and then it begain to return. I was in deep denial because I didn't want to go through all that again. It started with the brain fog and progressed into joint and muscle pains and fatigue- all very reminiscent of the time before. that was when I finally went to the Dr again and they siad FMS, probably. They did the usual blood tests and x-rays and ruled out a bunch of stuff like lupus. Then, I started having neurological symptoms(burning skin, buzzing, weird muscle cramps like charley horses but they happen no matter what I am doing - not just sleeping or exercising-My Gen Pract> sent me to the neurologist who really expected to see nerve damage based on my symptoms, but none was there. I also have gastrointestinal issues, dizziness and the fatigue lately has been awful.> I feel like it is robbing my child of the mom he should have, becasue by the time I get home from work, I need to rest and on the weekends, I am so tired and have so much to do. Nobody at work knows what an effort I have to make to be there everyday and my husband just doesn't understand and gets frustrated becasue I am always tired and feeling icky. I am sorry to be so long winded and whiny. I know there are people out there much worse off than me. I just get frustrated, and I know y'all will understand. also, I ahve been able to find some meds that help some with the pain, but I still can't find anything to help with fatigue. Anybody got any suggestions for that- besides sleep (haha)> Thanks for listening.> > G> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Hi , I too have a husband who does not understand much about fibro, so I know what you're dealing with. We have some good letters and articles for people like your husband to help them understand what it's like to have this disease. You can find them in our group's Files database in a folder called "Friends and family." Pam Re: new and frustrated Thanks, those are really good suggestions. I hope to be able to do some of them this summer. right now, by the time I get home and get my son straight, I am wiped. I sometimes have to nap before I can do prayers and night night songs with him . I am trying to learn to listen to my body. It would help if my husband understood more, but I think he jsut doesn't want to know about it becasue he can't fix me.I will keep you in my prayers for more good days than bad.Thanks again and ahve a great day. G-- In , alwayssmiling JMD <alwayssmilingjmd@...> wrote:>> *Your story sounds so familiar. Welcome to this group!!!! For me since I> can't take anything for my Fibromyalgia I have learned to adapt and have had> to listen to my body and how it is feeling from day to day and even moment> to moment. It is difficult when even the simplest task like getting> dressed, brushing hair not alone washing it, brushing teeth, even just> moving is so hard somedays. I know these suggestions will not be for> everyone but what I have found has helped me is When I cook meals I make> extras so that on the days where I can't I have stuff already made up. If I> can just even do 2 minutes at a time around the house throughout the day> then it helps keep the house in order. I break big things down and make> them into sections like vacuuming and doing floors etc. For laundry I will> take a few things down as I go to the laundry room and put them in the> washer so that when I am ready most things are already there ready for me.> I make a list of 10 items that needs doing and play with other people so you> are not always in control of what number gets called. I will sort mail as> soon as it comes in and shed right away and then put bills to pay on top of> the printer so it is ready to pay. These are just a few things that I have> learned to do to adjust. The big one though is if I know that i am going> out I will plan for a light day and take a nap before hand or just rest and> take it easy. I know what it is like to to give up working full time> because of Fibromyalgia and give up a lot for I used to be so active always> involved in sports and now I walk with a cane. But I have also gained so> much as well that with my positive attitude and smiling I encourage others> and that is a big blessing.> Take care and I hope that you and your family are healthy, happy and having> a great day,> > *> On Wed, May 20, 2009 at 8:40 PM, Gaduyon <noerzmom@...> wrote:> > >> >> > Hi everyone,> >> > I am brand new to the group. I have a couple of questions .How do you> > know if you have fibromyalgia, chronic fatigue syndrome or both? It seems> > like the main symptoms are the same. this is my story.About 9 years ago, I> > was told that I had CFS. I had to quit work and really slow down for a bit> > , but it went into a remission. I did well for about 7 years and then it> > begain to return. I was in deep denial because I didn't want to go through> > all that again. It started with the brain fog and progressed into joint and> > muscle pains and fatigue- all very reminiscent of the time before. that was> > when I finally went to the Dr again and they siad FMS, probably. They did> > the usual blood tests and x-rays and ruled out a bunch of stuff like lupus.> > Then, I started having neurological symptoms(burning skin, buzzing, weird> > muscle cramps like charley horses but they happen no matter what I am doing> > - not just sleeping or exercising-My Gen Pract sent me to the neurologist> > who really expected to see nerve damage based on my symptoms, but none was> > there. I also have gastrointestinal issues, dizziness and the fatigue> > lately has been awful.> > I feel like it is robbing my child of the mom he should have, becasue> > by the time I get home from work, I need to rest and on the weekends, I am> > so tired and have so much to do. Nobody at work knows what an effort I have> > to make to be there everyday and my husband just doesn't understand and gets> > frustrated becasue I am always tired and feeling icky. I am sorry to be so> > long winded and whiny. I know there are people out there much worse off> > than me. I just get frustrated, and I know y'all will understand. also, I> > ahve been able to find some meds that help some with the pain, but I still> > can't find anything to help with fatigue. Anybody got any suggestions for> > that- besides sleep (haha)> > Thanks for listening.> >> > G> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Hi Pam Yes, we think he was. We didn't know until he was 6 mos old. He has a very rare disease called Norries. It is very rare and there is not a lot of definite info on it. He doesn't use a computer yet. He will be in kindergarten next year. He is very smart academically, but lags a little in social skills and self help skills. He is the light of my life though. He amazes me every day. We live in NC, very close to Virginia and I teach in VA. G From: Pam Horne <pmarshall@...>Subject: Re: Re: new and frustrated Date: Friday, May 22, 2009, 9:19 AM , Was Noah born blind? My dear friend and neighbor has been blind since she was a baby. She is a teacher. She lives by herself and does practically everything the rest of us do except see. I am so impressed by her. Does your son use a computer? My friend always wants to correspond with other blind people, especially children. She has a computer with a voice application and she has a braille printer. I guess your son would be in kindergarten, so he probably does not read or write yet, but he probably will soon. Where do you live? Pam new and frustrated> > Date: Wednesday, May 20, 2009, 10:40 PM> > > > > > > > > > > > > > > > > > Hi everyone,> > I am brand new to the group. I have a couple of questions .How do you know if you have fibromyalgia, chronic fatigue syndrome or both? It seems like the main symptoms are the same. this is my story.About 9 years ago, I was told that I had CFS. I had to quit work and really slow down for a bit , but it went into a remission. I did well for about 7 years and then it begain to return. I was in deep denial because I didn't want to go through all that again. It started with the brain fog and progressed into joint and muscle pains and fatigue- all very reminiscent of the time before. that was when I finally went to the Dr again and they siad FMS, probably. They did the usual blood tests and x-rays and ruled out a bunch of stuff like lupus. Then, I started having neurological symptoms(burning skin, buzzing, weird muscle cramps like charley horses but they happen no matter what I am doing - not just sleeping or exercising-My Gen Pract> sent me to the neurologist who really expected to see nerve damage based on my symptoms, but none was there. I also have gastrointestinal issues, dizziness and the fatigue lately has been awful.> I feel like it is robbing my child of the mom he should have, becasue by the time I get home from work, I need to rest and on the weekends, I am so tired and have so much to do. Nobody at work knows what an effort I have to make to be there everyday and my husband just doesn't understand and gets frustrated becasue I am always tired and feeling icky. I am sorry to be so long winded and whiny. I know there are people out there much worse off than me. I just get frustrated, and I know y'all will understand. also, I ahve been able to find some meds that help some with the pain, but I still can't find anything to help with fatigue. Anybody got any suggestions for that- besides sleep (haha)> Thanks for listening.> > G> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2009 Report Share Posted May 22, 2009 Okay, thanks. I'll have to check thme out. He may or may not read them. I think he would prefer to not know everything because its easier to plead ignorance of what I may need. He is a good man, but he just doesn't deal well with me not being okay. > > >> >> > Hi everyone,> >> > I am brand new to the group. I have a couple of questions .How do you> > know if you have fibromyalgia, chronic fatigue syndrome or both? It seems> > like the main symptoms are the same. this is my story.About 9 years ago, I> > was told that I had CFS. I had to quit work and really slow down for a bit> > , but it went into a remission. I did well for about 7 years and then it> > begain to return. I was in deep denial because I didn't want to go through> > all that again. It started with the brain fog and progressed into joint and> > muscle pains and fatigue- all very reminiscent of the time before. that was> > when I finally went to the Dr again and they siad FMS, probably. They did> > the usual blood tests and x-rays and ruled out a bunch of stuff like lupus.> > Then, I started having neurological symptoms(burning skin, buzzing, weird> > muscle cramps like charley horses but they happen no matter what I am doing> > - not just sleeping or exercising-My Gen Pract sent me to the neurologist> > who really expected to see nerve damage based on my symptoms, but none was> > there. I also have gastrointestinal issues, dizziness and the fatigue> > lately has been awful.> > I feel like it is robbing my child of the mom he should have, becasue> > by the time I get home from work, I need to rest and on the weekends, I am> > so tired and have so much to do. Nobody at work knows what an effort I have> > to make to be there everyday and my husband just doesn't understand and gets> > frustrated becasue I am always tired and feeling icky. I am sorry to be so> > long winded and whiny. I know there are people out there much worse off> > than me. I just get frustrated, and I know y'all will understand. also, I> > ahve been able to find some meds that help some with the pain, but I still> > can't find anything to help with fatigue. Anybody got any suggestions for> > that- besides sleep (haha)> > Thanks for listening.> >> > G> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 Hi , By this time you probably already know that Noah will be fine and will live a very full life. My blind friend continues to astound me with what she does. She has an amazing memory (she says it's because she has to), she is fearless of living by herself, or even of walking around town all alone. She has a guide dog who is almost always with her, but when she is between dogs, she has no problem walking around with a cane. She belongs to and participates heavily in the Red Cross, the Lion's Club, and the American Foundation for the Blind. She teaches in public school and tutors in her home. And she proofs braille publications. She attends church with me, and since her braille Bible is too big and heavy for her to carry around, she participates in Sunday School by memorizing the lesson and the scripture. She raised a son who served in Iraq, and she now takes care of her 4-year-old granddaughter. She always lifts my spirits. You can probably expect all this and more from your son. Pam new and frustrated> > Date: Wednesday, May 20, 2009, 10:40 PM> > > > > > > > > > > > > > > > > > Hi everyone,> > I am brand new to the group. I have a couple of questions .How do you know if you have fibromyalgia, chronic fatigue syndrome or both? It seems like the main symptoms are the same. this is my story.About 9 years ago, I was told that I had CFS. I had to quit work and really slow down for a bit , but it went into a remission. I did well for about 7 years and then it begain to return. I was in deep denial because I didn't want to go through all that again. It started with the brain fog and progressed into joint and muscle pains and fatigue- all very reminiscent of the time before. that was when I finally went to the Dr again and they siad FMS, probably. They did the usual blood tests and x-rays and ruled out a bunch of stuff like lupus. Then, I started having neurological symptoms(burning skin, buzzing, weird muscle cramps like charley horses but they happen no matter what I am doing - not just sleeping or exercising-My Gen Pract> sent me to the neurologist who really expected to see nerve damage based on my symptoms, but none was there. I also have gastrointestinal issues, dizziness and the fatigue lately has been awful.> I feel like it is robbing my child of the mom he should have, becasue by the time I get home from work, I need to rest and on the weekends, I am so tired and have so much to do. Nobody at work knows what an effort I have to make to be there everyday and my husband just doesn't understand and gets frustrated becasue I am always tired and feeling icky. I am sorry to be so long winded and whiny. I know there are people out there much worse off than me. I just get frustrated, and I know y'all will understand. also, I ahve been able to find some meds that help some with the pain, but I still can't find anything to help with fatigue. Anybody got any suggestions for that- besides sleep (haha)> Thanks for listening.> > G> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2009 Report Share Posted May 23, 2009 I can identify with having a husband like yours. My husband is the same. He will read things that I give him, then he'll say that he truly understands my special needs. But the very next day when I go to the grocery store, he will sit at his desk watching me out the window as I struggle to bring in all the bags. Still, there have been others who say that when their loved ones read one or more of these letters or articles, they suddenly understand. Pam Re: Re: new and frustrated Okay, thanks. I'll have to check thme out. He may or may not read them. I think he would prefer to not know everything because its easier to plead ignorance of what I may need. He is a good man, but he just doesn't deal well with me not being okay. > > >> >> > Hi everyone,> >> > I am brand new to the group. I have a couple of questions .How do you> > know if you have fibromyalgia, chronic fatigue syndrome or both? It seems> > like the main symptoms are the same. this is my story.About 9 years ago, I> > was told that I had CFS. I had to quit work and really slow down for a bit> > , but it went into a remission. I did well for about 7 years and then it> > begain to return. I was in deep denial because I didn't want to go through> > all that again. It started with the brain fog and progressed into joint and> > muscle pains and fatigue- all very reminiscent of the time before. that was> > when I finally went to the Dr again and they siad FMS, probably. They did> > the usual blood tests and x-rays and ruled out a bunch of stuff like lupus.> > Then, I started having neurological symptoms(burning skin, buzzing, weird> > muscle cramps like charley horses but they happen no matter what I am doing> > - not just sleeping or exercising-My Gen Pract sent me to the neurologist> > who really expected to see nerve damage based on my symptoms, but none was> > there. I also have gastrointestinal issues, dizziness and the fatigue> > lately has been awful.> > I feel like it is robbing my child of the mom he should have, becasue> > by the time I get home from work, I need to rest and on the weekends, I am> > so tired and have so much to do. Nobody at work knows what an effort I have> > to make to be there everyday and my husband just doesn't understand and gets> > frustrated becasue I am always tired and feeling icky. I am sorry to be so> > long winded and whiny. I know there are people out there much worse off> > than me. I just get frustrated, and I know y'all will understand. also, I> > ahve been able to find some meds that help some with the pain, but I still> > can't find anything to help with fatigue. Anybody got any suggestions for> > that- besides sleep (haha)> > Thanks for listening.> >> > G> >> >> Quote Link to comment Share on other sites More sharing options...
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