Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 1. Eye floaters, never had them till got one in the spring and now today a new one in the other eye. The doctors say don't worry about it soon you wont' notice it but believe me after six months I see see the orginal one in my right eye and now one in the left. UGH 2. Little nodles of skin on neck, bigger than a bump but what are they, FMS, old age (62) I hate them. Its not bad enough to be chubbie, have wrinkles but now that too. 3. Little white patches all over body, dry, flaky. Dr. just says put on cortozone. Well I could use a whole tube every day and I don't think that too good. Haven't found a body lotion or cream that helps. Sometimes they itch but all the time they look ugly. 4. Itching, do you itch in weird place, my fingers itch, but when I scratch of course it hurts. Elbow, legs, arms, head ( all the time). 5. I get the sweating, night and day, but the heat (feel like my thermostat went bad). Thanks for any replies, I am so glad to have found this board. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Floaters are something that everyone gets at times. The Dr instructed you right. Some the adjustment comes fast others it takes a long time. The nodles on your skin, sound like you are talking about skin tags. These are usually harmless, and can be removed easily in Dr office. Also they can be an indicator of other things. Have you kept up with your Mammograms, and colonoscopies???? The dry itchy patches sound like eczema, and their is no successful treatment for it. Cortizone creams, Ultra violet treatments, like sun, are frequently used treatments. My mother had the over all itching and the infection control Dr had her bathe with Hibiclens and shampoo her hair with Selsun Shampoo. This helped her, plus she ate yogurt with active cultures daily. Sandie -- a couple of odd things 1. Eye floaters, never had them till got one in the spring and now today a new one in the other eye. The doctors say don't worry about it soon you wont' notice it but believe me after six months I see see the orginal one in my right eye and now one in the left. UGH 2. Little nodles of skin on neck, bigger than a bump but what are they, FMS, old age (62) I hate them. Its not bad enough to be chubbie, have wrinkles but now that too. 3. Little white patches all over body, dry, flaky. Dr. just says put on cortozone. Well I could use a whole tube every day and I don't think that too good. Haven't found a body lotion or cream that helps. Sometimes they itch but all the time they look ugly. 4. Itching, do you itch in weird place, my fingers itch, but when I scratch of course it hurts. Elbow, legs, arms, head ( all the time). 5. I get the sweating, night and day, but the heat (feel like my thermostat went bad). Thanks for any replies, I am so glad to have found this board. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Exactly 9 years ago, I was lying on my mom's couch, and sat up quickly to leave for home. When I got in the car, it looked like there was a bug on the windshield. Checked it out, but nope. I was puzzled - checked my glasses. But to my surprise, it turned out to be a HUGE floater in my left eye that is still there today. It looks like sixteenth note, if you understand musical notation. It looks in my vision to be about 1 inch in height and interferes with my reading music, as a piano teacher and church musician. I ignore it as much as I can, but it is a nuisance. I asked an eye doctor about floaters and there's nothing that can be done about them. I have other small ones, but it's this big one that is particularly annoying. Just another thing to live with. I notice it more on bright days. - Dom > > Floaters are something that everyone gets at times. The Dr instructed you > right. Some the adjustment comes fast others it takes a long time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 I have the same thing in both of my eyes and they eye doctor's have assured me that this is nothing to worry about...it's more annoying than anything else. From: Dominie Bush <dombush@...>Subject: Re: a couple of odd thingsdominie Date: Sunday, October 26, 2008, 3:06 PM Exactly 9 years ago, I was lying on my mom's couch, and sat up quicklyto leave for home. When I got in the car, it looked like there was abug on the windshield. Checked it out, but nope. I was puzzled -checked my glasses. But to my surprise, it turned out to be a HUGEfloater in my left eye that is still there today. It looks likesixteenth note, if you understand musical notation. It looks in myvision to be about 1 inch in height and interferes with my readingmusic, as a piano teacher and church musician. I ignore it as much asI can, but it is a nuisance. I asked an eye doctor about floaters andthere's nothing that can be done about them. I have other small ones,but it's this big one that is particularly annoying. Just anotherthing to live with. I notice it more on bright days. - Dom>> Floaters are something that everyone gets at times. The Drinstructed you> right. Some the adjustment comes fast others it takes a long time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 I notice more on bright days too. It just seems with all the other stuff I have to adjust too, this one annoys me allot. Remember: A little consideration, a little thought for others, makes all the difference --Eeyore from "Winnie-The-Pooh." From: dominie [mailto:dominie ] On Behalf Of Dominie BushSent: Sunday, October 26, 2008 3:07 PMdominie Subject: Re: a couple of odd things Exactly 9 years ago, I was lying on my mom's couch, and sat up quicklyto leave for home. When I got in the car, it looked like there was abug on the windshield. Checked it out, but nope. I was puzzled -checked my glasses. But to my surprise, it turned out to be a HUGEfloater in my left eye that is still there today. It looks likesixteenth note, if you understand musical notation. It looks in myvision to be about 1 inch in height and interferes with my readingmusic, as a piano teacher and church musician. I ignore it as much asI can, but it is a nuisance. I asked an eye doctor about floaters andthere's nothing that can be done about them. I have other small ones,but it's this big one that is particularly annoying. Just anotherthing to live with. I notice it more on bright days. - Dom>> Floaters are something that everyone gets at times. The Drinstructed you> right. Some the adjustment comes fast others it takes a long time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 You all need to get this book it is worth your while to add it to your fibromyalgia library . The write up is in our book data base. Too loud too bright too fast too tight by Sharon Heller PhD I have 2 more I will add to it later on by Devin Starlyin the fibromyalia and MPS book and the Fibromyalgia advocate they are thick books then one my hubby is reading I forgot the name of it. I too am very light sound, smell sensitive and some clothes too. But I learn to live with it. But yes we do things to help us get by and function better even if it means wearing tinted sunglasses on a cloudy day. & a knitted hsawl when it is cold inside dr's offices and hot outside. my aunt use to call me Tigger from Winnie the pooh always on the go i am still on the go but not as much. Hugs and may you all have a blessed week. Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Hey Eeyore, I know what you mean. I'm 61 and my golden years are looking tarnished. The only thing I do not have in common with you is the eye floaters. But I suspect in about a year I'll get them too. Those little bumps all over my neck--I HATE them. Remember when our skin was smooth and lovely? Gone forever. I get the dry white patches all over the place too. I get relief with several of the Gold Bond creams and lotions. If they don't help, try Vasoline. My best friend has extremely dry skin and she uses Vasoline. She says in about an hour the greasiness is entirely gone and her skin is somewhat better. I get itchy everywhere. Sometimes all at the same time, other times, the itch is concentrated. I think I have purchased every kind of itch concoction known to man. Not much works. Right now I'm using CVS brand Cortisone cream (for anybody who doesn't know, CVS is a pharmacy--don't know if it's national). Anyhow, the CVS Cortisone works fairly good. I put it on, then I have to grit my teeth to keep from scratching for a few minutes until it takes hold. Also, Benadryl will work for an itch, either spray it on or take a pill; I don't like to use it because I take so many other meds, I hate to add another. Which is worse, an itch or pain? It probably doesn't matter when you have both. The hot flashes and sweating (I get both) are the worst. I have not discovered anything that will help. I didn't get them until I stopped taking Premarin, which I had taken for over 25 years. Now I want it back. Pam a couple of odd things 1. Eye floaters, never had them till got one in the spring and now today a new one in the other eye. The doctors say don't worry about it soon you wont' notice it but believe me after six months I see see the orginal one in my right eye and now one in the left. UGH2. Little nodles of skin on neck, bigger than a bump but what are they, FMS, old age (62) I hate them. Its not bad enough to be chubbie, have wrinkles but now that too.3. Little white patches all over body, dry, flaky. Dr. just says put on cortozone. Well I could use a whole tube every day and I don't think that too good. Haven't found a body lotion or cream that helps. Sometimes they itch but all the time they look ugly.4. Itching, do you itch in weird place, my fingers itch, but when I scratch of course it hurts. Elbow, legs, arms, head ( all the time).5. I get the sweating, night and day, but the heat (feel like my thermostat went bad).Thanks for any replies, I am so glad to have found this board. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 I just wanted to say how thankful I am, as well, to have found this board. I'm a nurse, and diagnosed myself years ago. I still have not been diagnosed by a doctor, despite my very " classic " fibro symptoms. The last rheum I saw, after I had outlined the first 40 or so of my symptoms, said to me " Well, it sounds like you have one of those illnesses that is really hard to diagnose, and probably impossible to treat. Good luck to you. " That was it. He left the office. I cannot say how many times I have read this board in the last month and cried, just at the relief that I'm not nuts, and more importantly, that I'm not alone. Thank you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Oh my goodness! He sounds like the ENT I saw once time when I had extremely bad tinnitus. Plus every time I tipped my head in a certain direction, I went completely deaf. Total silence. I got to thinking it might be an auditory tumor?? When I got to his office, I noticed that patients were coming and going from his office like clockwork every few minutes. I remember thinking he wasn't spending much time with them. If I recall, it was his golf day. When it was my turnhis conclusion was, " Don't tip your head in that direction. " Can you believe it?! Next thing I know I was standing at the counter paying my bill on the way out! Ridiculous!! I wrote a letter to this doctor when I got home, but later he denied saying it. So he was a liar too. Anyway, check out my good docs/bad docs page at http://www.fms-help.com/doctors.htm Dom > > I just wanted to say how thankful I am, as well, to have found this > board. I'm a nurse, and diagnosed myself years ago. I still have not > been diagnosed by a doctor, despite my very " classic " fibro symptoms. > The last rheum I saw, after I had outlined the first 40 or so of my > symptoms, said to me " Well, it sounds like you have one of those > illnesses that is really hard to diagnose, and probably impossible to > treat. Good luck to you. " That was it. He left the office. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 When I was younger and had an 18 month old daughter, one doctor put both my wrists in casts to stop me from bending them. Another wanted me to go on Gold treatments, when I asked about the side effects he listed them and I said, I have two small children and you might be prescribing a death sentence to me. Another told me not to pick up my daughters if it hurt. My old family doctor would just shake his head, finally after my hand froze and I couldn't open or close it, he sent me to a chiropractor. I have been lucky this past 2 years to have an excellent family doctor and a wonderful rheumatologist. Work is another story, I am a desktop support person, but I cannot lift desktops anymore, move monitors or printers. Crawling under a desk is getting hard. I cannot remember names, fixes that I have always know, sometimes I am so tired I almost fall asleep at the wheel. But my doctors want me to work, they say its the best thing. So I keep on plugging away. Remember: A little consideration, a little thought for others, makes all the difference --Eeyore from "Winnie-The-Pooh." From: dominie [mailto:dominie ] On Behalf Of Dominie BushSent: Tuesday, October 28, 2008 10:36 AMdominie Subject: Re: a couple of odd things Oh my goodness! He sounds like the ENT I saw once time when I hadextremely bad tinnitus. Plus every time I tipped my head in a certaindirection, I went completely deaf. Total silence. I got to thinkingit might be an auditory tumor?? When I got to his office, I noticedthat patients were coming and going from his office like clockworkevery few minutes. I remember thinking he wasn't spending much timewith them. If I recall, it was his golf day. When it was my turnhisconclusion was, "Don't tip your head in that direction." Can youbelieve it?! Next thing I know I was standing at the counter payingmy bill on the way out! Ridiculous!! I wrote a letter to this doctorwhen I got home, but later he denied saying it. So he was a liar too.Anyway, check out my good docs/bad docs page at http://www.fms-help.com/doctors.htmDom--- In dominie , " Hilyer" <mountnsage@...> wrote:>> I just wanted to say how thankful I am, as well, to have found this > board. I'm a nurse, and diagnosed myself years ago. I still have not > been diagnosed by a doctor, despite my very "classic" fibro symptoms. > The last rheum I saw, after I had outlined the first 40 or so of my > symptoms, said to me "Well, it sounds like you have one of those > illnesses that is really hard to diagnose, and probably impossible to > treat. Good luck to you." That was it. He left the office. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Your doctor is wrong. If you were just depressed then work would be what you need. However, you have Fibromyalgia and if work is getting too hard then it may be time to go on disability. If you had rheumatoid arthritis they wouldn't tell you to continue working and the fibromyalgia is just as bad if not more so. I wish the doctors would just get a clue! Sorry for getting on a soapbox, didn't know I had one!! Hugs, Michele - Nana & DayCare provider toTwins is and , 2 yrs., Zachary, 4 yrs.,Ethan, 8 yrs., and Tony, 12 yrs. From: ChristieSent: Tuesday, October 28, 2008 4:40 PM When I was younger and had an 18 month old daughter, one doctor put both my wrists in casts to stop me from bending them. Another wanted me to go on Gold treatments, when I asked about the side effects he listed them and I said, I have two small children and you might be prescribing a death sentence to me. Another told me not to pick up my daughters if it hurt. My old family doctor would just shake his head, finally after my hand froze and I couldn't open or close it, he sent me to a chiropractor. I have been lucky this past 2 years to have an excellent family doctor and a wonderful rheumatologist. Work is another story, I am a desktop support person, but I cannot lift desktops anymore, move monitors or printers. Crawling under a desk is getting hard. I cannot remember names, fixes that I have always know, sometimes I am so tired I almost fall asleep at the wheel. But my doctors want me to work, they say its the best thing. So I keep on plugging away. Remember: A little consideration, a little thought for others, makes all the difference --Eeyore from "Winnie-The-Pooh." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 I've had a very similar situation with a Rheumo and was told that since I can't tolerate Lyrica than he could not help me but the way it was said was as if it was my fault. Needless to say I left there in tears. I was a person who used to work out 6-7 days per week and to go fron that to this is very depressing. a Rheumo who I saw yesterday only for the second time, knows I'm in a very bad flare with horrific pain told me to go home and exercise for 45 minutes at least 4 days per week. I looked at him like he was nuts and asked him how I'm supposed to do this with this pain and such fatigue. He just told me to do it and figure it out! Good luck to you...soft hugs sent your way From: Hilyer <mountnsage@...>Subject: Re: a couple of odd thingsdominie Date: Tuesday, October 28, 2008, 3:51 AM I just wanted to say how thankful I am, as well, to have found this board. I'm a nurse, and diagnosed myself years ago. I still have not been diagnosed by a doctor, despite my very "classic" fibro symptoms. The last rheum I saw, after I had outlined the first 40 or so of my symptoms, said to me "Well, it sounds like you have one of those illnesses that is really hard to diagnose, and probably impossible to treat. Good luck to you." That was it. He left the office. I cannot say how many times I have read this board in the last month and cried, just at the relief that I'm not nuts, and more importantly, that I'm not alone. Thank you all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 You may need to work to stay healthy, but consider another job. The one you have now is too physical for you. Have you thought about getting another job?HelenFrom: Christie <eeyore46@...>Subject: RE: Re: a couple of odd thingsdominie Received: Tuesday, October 28, 2008, 8:40 PM When I was younger and had an 18 month old daughter, one doctor put both my wrists in casts to stop me from bending them. Another wanted me to go on Gold treatments, when I asked about the side effects he listed them and I said, I have two small children and you might be prescribing a death sentence to me. Another told me not to pick up my daughters if it hurt. My old family doctor would just shake his head, finally after my hand froze and I couldn't open or close it, he sent me to a chiropractor. I have been lucky this past 2 years to have an excellent family doctor and a wonderful rheumatologist. Work is another story, I am a desktop support person, but I cannot lift desktops anymore, move monitors or printers. Crawling under a desk is getting hard. I cannot remember names, fixes that I have always know, sometimes I am so tired I almost fall asleep at the wheel. But my doctors want me to work, they say its the best thing. So I keep on plugging away. Remember: A little consideration, a little thought for others, makes all the difference --Eeyore from "Winnie-The- Pooh." From: dominie@groups .com [mailto:dominie] On Behalf Of Dominie BushSent: Tuesday, October 28, 2008 10:36 AMdominie@groups .comSubject: Re: a couple of odd things Oh my goodness! He sounds like the ENT I saw once time when I hadextremely bad tinnitus. Plus every time I tipped my head in a certaindirection, I went completely deaf. Total silence. I got to thinkingit might be an auditory tumor?? When I got to his office, I noticedthat patients were coming and going from his office like clockworkevery few minutes. I remember thinking he wasn't spending much timewith them. If I recall, it was his golf day. When it was my turnhisconclusion was, "Don't tip your head in that direction." Can youbelieve it?! Next thing I know I was standing at the counter payingmy bill on the way out! Ridiculous!! I wrote a letter to this doctorwhen I got home, but later he denied saying it. So he was a liar too.Anyway, check out my good docs/bad docs page at http://www.fms- help.com/ doctors.htmDom>> I just wanted to say how thankful I am, as well, to have found this > board. I'm a nurse, and diagnosed myself years ago. I still have not > been diagnosed by a doctor, despite my very "classic" fibro symptoms. > The last rheum I saw, after I had outlined the first 40 or so of my > symptoms, said to me "Well, it sounds like you have one of those > illnesses that is really hard to diagnose, and probably impossible to > treat. Good luck to you." That was it. He left the office. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Getting disability is a good idea, but sure is tough in some cases. I have disability tips at http://www.fms-help.com/disability.htm from newsletter readers who were successful. I talked with a disability attorney a few months ago (here in FL) and he told me I would have to stop working completely for 6 months to a year to prove that I couldn't work. We could not survive that long without my income from teaching at the music school. So it's a Catch 22, at least in my situation. He said if you ARE working, then you are PROVING you CAN! It doesn't seem to matter the level of difficulty it is for that person. And many times it takes years to get on disability. Well, it's hard to live on air! But many people with FMS/CFIDS have been able to get SSD, so it doesn't hurt to apply, but you might want to talk with an attorney first, either by phone or in person - many will do a free initial consultation. Dom In dominie , " Michele Townsend " <mtownsend29@...> wrote: > > Your doctor is wrong. If you were just depressed then work would be what > you need. However, you have Fibromyalgia and if work is getting too hard > then it may be time to go on disability. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyrica doesn't work for everyone and has terrible side effects for many. Go to http://www.fms-help.com/doctors.htm - it's for shell shocked FMS patients to read after being devastated by a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms-help.com/interview.htm that a doc told me to sign up for a gym at the hospital. I did so and joined an aerobics class. The young lady who was leading the class was named " Inga " - a beautiful Swedish gal who I think had springs in her legs! She was doing all this jumping around and had incredible stamina! I am totally uncoordinated and had severe FMS. I ended up on the floor with an injured back. Others in the class weren't doing so well either - one very large lady jumped right out of her tank top. HA!!!!! (If we didn't laugh sometimes, we would cry!) Dom > > I've had a very similar situation with a Rheumo and was told that since I can't tolerate Lyrica than he could not help me but the way it was said was as if it was my fault. Needless to say I left there in tears. I was a person who used to work out 6-7 days per week and to go fron that to this is very depressing. a Rheumo who I saw yesterday only for the second time, knows I'm in a very bad flare with horrific pain told me to go home and exercise for 45 minutes at least 4 days per week. I looked at him like he was nuts and asked him how I'm supposed to do this with this pain and such fatigue. He just told me to do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 , what you are describing with the wrist casts and gold treatments sounds like RA. Gold treatments are a very old treatment for RA. A lot of us with Fibro also have other rheumatic conditions. I myself have severe osteoarthritis in all major joints, that and failed back surgery are the reasons I had to go on Disability not the fibro. I worked for 2 years after the Drs told me to go for disability. Working as long as you can with arthritis is the best for you, but from what you are describing it is time to attempt some other type of work. By doing so and then failing at that, helps in winning disability. I was a nurse and attempted to learn medical billing, and was unable to do the work, after passing the classes with flying colors. I couldn't get the work done in timely manner. What you need to do is keep a journal daily, of what you are able to accomplish, how much difficulty you had in completing what you got completed. The amount of pain you have, using a scale of 1-10 with 1 being almost no pain to 10 being pain that is causing you to be nonfunctional. What you did to attempt to relieve the pain. How much assistance you need to accomplish work, household chores, activities of daily living. By doing so you are putting your subjective symptoms into black and white that the Drs can see. Also a personal journal like this will help when you do apply for SSD. My husband is almost 70 and is still working 60 hours a week with RA, and that is what is keeping him functional, plus he has an extremely high pain tolerance, which also helps. Sandie From: Christie <eeyore46@...>Subject: RE: Re: a couple of odd thingsdominie Received: Tuesday, October 28, 2008, 8:40 PM When I was younger and had an 18 month old daughter, one doctor put both my wrists in casts to stop me from bending them. Another wanted me to go on Gold treatments, when I asked about the side effects he listed them and I said, I have two small children and you might be prescribing a death sentence to me. Another told me not to pick up my daughters if it hurt. My old family doctor would just shake his head, finally after my hand froze and I couldn't open or close it, he sent me to a chiropractor. I have been lucky this past 2 years to have an excellent family doctor and a wonderful rheumatologist. Work is another story, I am a desktop support person, but I cannot lift desktops anymore, move monitors or printers. Crawling under a desk is getting hard. I cannot remember names, fixes that I have always know, sometimes I am so tired I almost fall asleep at the wheel. But my doctors want me to work, they say its the best thing. So I keep on plugging away. Remember: A little consideration, a little thought for others, makes all the difference --Eeyore from "Winnie-The- Pooh." From: dominie@groups .com [mailto:dominie] On Behalf Of Dominie BushSent: Tuesday, October 28, 2008 10:36 AMdominie@groups .comSubject: Re: a couple of odd things Oh my goodness! He sounds like the ENT I saw once time when I hadextremely bad tinnitus. Plus every time I tipped my head in a certaindirection, I went completely deaf. Total silence. I got to thinkingit might be an auditory tumor?? When I got to his office, I noticedthat patients were coming and going from his office like clockworkevery few minutes. I remember thinking he wasn't spending much timewith them. If I recall, it was his golf day. When it was my turnhisconclusion was, "Don't tip your head in that direction." Can youbelieve it?! Next thing I know I was standing at the counter payingmy bill on the way out! Ridiculous!! I wrote a letter to this doctorwhen I got home, but later he denied saying it. So he was a liar too.Anyway, check out my good docs/bad docs page at http://www.fms- help.com/ doctors.htmDom>> I just wanted to say how thankful I am, as well, to have found this > board. I'm a nurse, and diagnosed myself years ago. I still have not > been diagnosed by a doctor, despite my very "classic" fibro symptoms. > The last rheum I saw, after I had outlined the first 40 or so of my > symptoms, said to me "Well, it sounds like you have one of those > illnesses that is really hard to diagnose, and probably impossible to > treat. Good luck to you." That was it. He left the office. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 I've recently applied for disability and from what my atty says Fibromyalgia is well recognized and accepted as a disability and being approved more and more. The downside is that it does take a while and to not get discouraged because you are usually denied twice and the third time in the front the judge at your hearing is usually when you're approved. So good luck to you and definitely file, we deserve it!>> Your doctor is wrong. If you were just depressed then work would bewhat> you need. However, you have Fibromyalgia and if work is gettingtoo hard> then it may be time to go on disability. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Go to the Social Security web site. I did some part time work while I was waiting for approval for SSD. If you can prove that the funds from working went towards your medical care, then no questions asked. You are allowed to make up to a certain amount even on SSD. I stayed below that amount. Most attorneys will not take you on until you receive the first turn down. Then some will make you wait until the 2nd turn down. Their fees are set by Social Security, so the less they do the more profit they make. When applying for SSD. Absolutely do not put Fibro or CFS as the first or second diagnosis, list everything else first. If they see FMS or CFS first then they automatically close their minds to the disability. Keep a journal of your pain levels, etc etc. Do a search for , he is a disability attorney in Arizona, he has an excellent website on applying for disability, he will also set up a free phone consultation with you. But if he has to fly into your town for appearance he will charge for the flight and motel, that is allowed. But he has excellent information on his web sight. I used a lot of it. Took me 2 years. But go through the Social Security web site. Read up on the disability process,it will help you through the process. After you apply they will send out a form for you to fill in on your activities of daily living, you need help with most of the activities of daily living. Massage therapy and chiropractic care are considered pain management with Social security, so keep dates of treatments that you have, and get notes from the practitioner, to send a copy in with application. Sandie -- Re: a couple of odd things Getting disability is a good idea, but sure is tough in some cases. I have disability tips at http://www.fms-help.com/disability.htm from newsletter readers who were successful. I talked with a disability attorney a few months ago (here in FL) and he told me I would have to stop working completely for 6 months to a year to prove that I couldn't work. We could not survive that long without my income from teaching at the music school. So it's a Catch 22, at least in my situation. He said if you ARE working, then you are PROVING you CAN! It doesn't seem to matter the level of difficulty it is for that person. And many times it takes years to get on disability. Well, it's hard to live on air! But many people with FMS/CFIDS have been able to get SSD, so it doesn't hurt to apply, but you might want to talk with an attorney first, either by phone or in person - many will do a free initial consultation. Dom In dominie , "Michele Townsend" <mtownsend29@...> wrote: > > Your doctor is wrong. If you were just depressed then work would be what > you need. However, you have Fibromyalgia and if work is getting too hard > then it may be time to go on disability. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Thanks Dom once again. It seems after I write this group that I feel better knowing this happens to most of us and that I'm not alone. It's just so frustrating. What do we need to do to get through to these doctor's? Do the really think we enjoy what we're going through? The Lyrica gave me terrible side effects and I wasn't going to stay on it to suit the doctor! The only doctor I like that I currently see form my Rheumo, Physiatrist, Urologist, Gastro, etc is now my Psychiatrist. This is probably the nicest man I have ever meant. Didn't speak nastily about these doctor's but had a way of saying, they're a bunch of quacks. He told me that Fibro is very much real and that they have made Fibro a continuing education for the Psychiatrists because it very much affects our mental state! I thought that was fantastic news. Do any of you exercise routinely, even when in a flare and how do you? Doesn't it cause worse pain and then later even worse? I would love to exercise but with everything hurting I wouldn't know where to begin. I can't even use a can opener to open cans anymore, that's how bad I've gotten. Any exercise suggestions are very much appreciated. Thanks so much From: Dominie Bush <dombush@...>Subject: Re: a couple of odd thingsdominie Date: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2008 Report Share Posted October 28, 2008 Thanks Sandie, I wastold a certain type to Yoga is very good but I don't recall the name, big surprise. I hurt so badly in the mornings that I'll try to stretching and see how that does me. What about moist heating pad? Would that do anything? Just tring to get idea on how I can get my body moving without further hurting. I'm still in my bad flare and it's been almost 2 wks but am very tired of not being able to do things. Thank for your ideas. All is very much appreciated. Soft hugs to you From: Dominie Bush <dombushbellsouth (DOT) net>Subject: Re: a couple of odd thingsdominie@groups .comDate: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 I exercise daily. I do stretching exercises before I get out of bed in the morning. This helps to warm the muscles up. I get out and walk in the yard. If I need to go to the grocery, even if for a gallon of milk, I will walk every aisle while pushing a shopping cart, it is a slow walk, but it is exercise. I never remain in the same position for over 15 minutes otherwise I get too stiff to move and the pain is worse. I have found that if I give in totally to the pain, I am worse off. After my back surgery the only way the neurosurgeon would sign off for me to return to my nursing job was for me to join a gym for back strengthning exercises. The gym I join gave us access to a personal trainer once a week. Mine told me that since I had fibro that I needed to participate in a stretching class first before I attempted the other exercise to condition my muscles. Even though I am not able to attend a gym any more I still do the stretching and stay as active as I can. I do take my rest periods frequently. I have learned through my life that our minds are very powerful tools and if we say we can't do something we can't. But if we say I think I can, we often are able to do it even if it is modified. Learn to pace yourself. It was hard for me to do this, but I did finally learn to do it. There is nothing that has to be done all at once. Sometimes it will take me 3 hours to do the dishes after supper, I don't have a dishwasher. If I am having a bad day, they will be there the next day. Sandie -- Re: a couple of odd thingsdominie Date: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 I just bought a new moist heating pad this past weekend and it was $29 at Kmart. It is a king size one and I love it. I am going to have to go to an electric blanket for a heating pad, to cover all the aches and pains. LOLDarlene From: Dominie Bush <dombushbellsouth (DOT) net>Subject: Re: a couple of odd thingsdominie@groups .comDate: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Like you, I had eye floaters in both eyes. That was years ago. They seem to have just disappeared. I'd forgotten all about them...until I saw your message. I know they can be a nuisance. Hopefully, yours will gradually fade, too! Best wishes - Carlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 Moist heat should help. I use a thermophore heat pad. You get them at durable medical supply, I got mine years ago and they were $50 then, don't know what they are now. Also try an Epsom salt bath with a tablespoon or 2 of ground ginger in with it. That is good for aches and pains. I did do yoga at the Y and some of the stretches felt good. I had Polymyalgia rhuematica at the time and didn't know it, so a lot of the positions were painful. But I am in remission now, and do some of them a few times a week. Sandie -- Re: a couple of odd thingsdominie@groups .comDate: Tuesday, October 28, 2008, 10:43 PM Grrr. Oh, how cruel! That doc doesn't have a clue!!!!! Lyricadoesn't work for everyone and has terrible side effects for many. Go tohttp://www.fms- help.com/ doctors.htm - it's for shell shocked FMS patients to read after being devastatedby a doctor's visit! I remember when my FMS was at its worst (1980's) http://www.fms- help.com/ interview. htmthat a doc told me to sign up for a gym at the hospital. I did so andjoined an aerobics class. The young lady who was leading the classwas named "Inga" - a beautiful Swedish gal who I think had springs inher legs! She was doing all this jumping around and had incrediblestamina! I am totally uncoordinated and had severe FMS. I ended upon the floor with an injured back. Others in the class weren't doingso well either - one very large lady jumped right out of her tank top.HA!!!!! (If we didn't laugh sometimes, we would cry!)Dom>> I've had a very similar situation with a Rheumo and was told thatsince I can't tolerate Lyrica than he could not help me but the way itwas said was as if it was my fault. Needless to say I left there intears. I was a person who used to work out 6-7 days per week and togo fron that to this is very depressing. a Rheumo who I saw yesterdayonly for the second time, knows I'm in a very bad flare with horrificpain told me to go home and exercise for 45 minutes at least 4 daysper week. I looked at him like he was nuts and asked him how I'msupposed to do this with this pain and such fatigue. He just told meto do it and figure it out! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2008 Report Share Posted October 29, 2008 > > From: Hilyer <mountnsage@...> > Subject: Re: a couple of odd things > dominie > Date: Tuesday, October 28, 2008, 3:51 AM > > > > > > > I just wanted to say how thankful I am, as well, to have found this > board. I'm a nurse, and diagnosed myself years ago. I still have not > been diagnosed by a doctor, despite my very " classic " fibro symptoms. > The last rheum I saw, after I had outlined the first 40 or so of my > symptoms, said to me " Well, it sounds like you have one of those > illnesses that is really hard to diagnose, and probably impossible to > treat. Good luck to you. " That was it. He left the office. I cannot say > how many times I have read this board in the last month and cried, just > at the relief that I'm not nuts, and more importantly, that I'm not > alone. Thank you all. > Quote Link to comment Share on other sites More sharing options...
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