FeelinPuney
01-17-2002, 12:09 PM
Just wanted to take a pole on how many are on SSD
because of this illness.
Thanks,
Donna
because of this illness.
Thanks,
Donna
Sponsor
Emerald
01-17-2002, 06:38 PM
I am currently applying for SSD, and I am at the ALJ stage. I am only applying partly for it because of FMS, I have other pain conditions. I wish it wasn't this hard to get SSD, my hubby had to take another part-time job to support us. Good Luck to those who are trying and to those that have it congradulations.
Emerald http://www.healthboards.com/ubb/heart.gif
Emerald http://www.healthboards.com/ubb/heart.gif
SamQKitty
01-17-2002, 10:06 PM
I have been on SSDI for several years as a result of FM.
darlene
01-17-2002, 11:12 PM
I have just started the process, haven't even had my phone interview yet. Does anybody have any suggestions to help speed up the process? I was very discouraged by something I heard on TV tonight. This might sound silly to some of you but; my husband was watching Judge Judy and she was berating a woman who said she was on disability for Fibromyalgia, Judge Judy made the remark that she was just lazy and that's why she wasn't working. It's those opinions that really bother me and also the reason why I am very reluctant to even tell anyone that I have FMS. Anyway, I know that's off the subject but I also am curious as to how many are on SS disability and how long it took to get it.
Darlene
Darlene
margaritaclewett
01-18-2002, 02:33 AM
Hello! I became ill in 1997. It took me a little over a year to get ssd. I had to go to court with a lawyer to get it. Once I got there, the judge took one look at me and said, "You get it. I am sorry you had to come here." (I guess I was in so much pain that it showed)
Fibromyalgia is still not considered a "real illness" to some doctors. Because it is chronic pain syndrome, some family memebers cant understand it. I may look very healthy and be in so much pain that I am near tears. But you cant always see pain. I think thats why some folks and doctors dont belive its real.
There is a doctor that has Fibromyalgia that has done lots of reseach on it. She has also written a great book telling how to live with this illness. If you search the net, you can find lots of information on Fibromyalgia. There is a medicine that is normaly prescribed for colds, called Guafenisen. If taken in high dosages, this med. does help with the pain of fibromyalgia.
I have a nuero muscle disorder also so it makes it hard to diagnose my illness. The most of the doctors agree that I have a very bad case of fibromyalgia along with possible M.S. or something along that line.
I also take the narcotic, Oxycotin for pain. Some doctors do not like to put paitients on this because it is very dangerous. (Drug users grind it up and snort it for a quick high and end up killing themselves as a result.)
I am not an expert on Fibromyalgia by any means. I have done a lot of research on this topic. The more I search, the better the chance of dealing with it I think.
I hope this helps.
Fibromyalgia is still not considered a "real illness" to some doctors. Because it is chronic pain syndrome, some family memebers cant understand it. I may look very healthy and be in so much pain that I am near tears. But you cant always see pain. I think thats why some folks and doctors dont belive its real.
There is a doctor that has Fibromyalgia that has done lots of reseach on it. She has also written a great book telling how to live with this illness. If you search the net, you can find lots of information on Fibromyalgia. There is a medicine that is normaly prescribed for colds, called Guafenisen. If taken in high dosages, this med. does help with the pain of fibromyalgia.
I have a nuero muscle disorder also so it makes it hard to diagnose my illness. The most of the doctors agree that I have a very bad case of fibromyalgia along with possible M.S. or something along that line.
I also take the narcotic, Oxycotin for pain. Some doctors do not like to put paitients on this because it is very dangerous. (Drug users grind it up and snort it for a quick high and end up killing themselves as a result.)
I am not an expert on Fibromyalgia by any means. I have done a lot of research on this topic. The more I search, the better the chance of dealing with it I think.
I hope this helps.
amandrine
01-18-2002, 02:35 AM
Hello Darlene, I am on Disability have been going on 2 yrs now. I have a disease called Syringomyelia which is a cyst in the Spinal cord, some of the symptoms of this illness are the same as Fibromyalgia. I know what you mean by people saying things about those of us on disability, I have people look at me and say well you look alright to me, I just dont say anything anymore, if someone ask me what I do I say I am a homemaker. You take care of yourself. And it was nice talking to you.
darlene
01-19-2002, 01:27 AM
Hello Amandrine - Thanks for your reply. Don't you wish there was some way that those of us who are in severe pain could invent a "pain meter", so that others who have no understanding of empathy for others could just see how bad it really is, or better yet we could transfer the pain to them for awhile?
Darlene
Darlene
la_brat
01-20-2002, 05:47 PM
Both of our daughters have been diagnosed with FMS.
The oldest is 23. She has been receiving the Social Security Disability benefits for a year and a half now. It took her about a year and a half to get on the program. The acceptance of her disability was not on the basis of a diagnosis but on the limitations her symptoms put on her life. She can not drive because of dizzy spells and eye-brain-hand coordination (she can not respond normally at times to things like seeing a stop sign). These are just two of a long list of her symptoms that make her unempolyable or unable to operate her own business. The second time around (the first of course, she was turned down)we sent a list of her symptoms, frequency, and how they limited her life. That was pretty much the end of her process.
The oldest is 23. She has been receiving the Social Security Disability benefits for a year and a half now. It took her about a year and a half to get on the program. The acceptance of her disability was not on the basis of a diagnosis but on the limitations her symptoms put on her life. She can not drive because of dizzy spells and eye-brain-hand coordination (she can not respond normally at times to things like seeing a stop sign). These are just two of a long list of her symptoms that make her unempolyable or unable to operate her own business. The second time around (the first of course, she was turned down)we sent a list of her symptoms, frequency, and how they limited her life. That was pretty much the end of her process.
redleg82nd
01-31-2002, 11:14 AM
I've been dx for fms 4 about 2yrs and just got my ssd approved, haven't received no money yet, but I'am sure it will get here sooner or later.
Mike
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Mike
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redleg82nd
01-31-2002, 11:18 AM
I've been dx for fms 4 about 2yrs and just got my ssd approved, haven't received no money yet, but I'am sure it will get here sooner or later.
Mike
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Mike
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darlene
02-01-2002, 02:33 AM
Just need a moment here to vent. My first appointment for SSD is next week. I was reading through all the paperwork that I have printed off from all the helpful websites and started wondering about what my Rheumatologist would say about my SSD. Well, my PCP agrees that I am disabled with FMS but the specialist, who diagnosed me, believes I would be better to stay active and continue working every day. I can't even begin to tell you what I wanted to say to that idiot. Either he has not listened to a thing I have told him over the past three years or he doesn't believe a thing I say. I do believe it's time to change doctors. I am so very very mad & upset by this. I would give anything if I could continue with my job. I had a wonderful job, excellent pay & benefits, but had to go on a leave of absence in the hopes that I would start doing beter but I've been off now for over two months and see no relief at all. Sorry to ramble, just had to do it.
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FeelinPuney
02-01-2002, 01:41 PM
Originally posted by darlene:
Just need a moment here to vent. My first appointment for SSD is next week. I was reading through all the paperwork that I have printed off from all the helpful websites and started wondering about what my Rheumatologist would say about my SSD. Well, my PCP agrees that I am disabled with FMS but the specialist, who diagnosed me, believes I would be better to stay active and continue working every day. I can't even begin to tell you what I wanted to say to that idiot. Either he has not listened to a thing I have told him over the past three years or he doesn't believe a thing I say. I do believe it's time to change doctors. I am so very very mad & upset by this. I would give anything if I could continue with my job. I had a wonderful job, excellent pay & benefits, but had to go on a leave of absence in the hopes that I would start doing beter but I've been off now for over two months and see no relief at all. Sorry to ramble, just had to do it.
Darlene,
I understand what you are feeling my doctor has said the same thing and what makes it worse is my husband agrees with him totally which make me even mader. I agree with you change doctors. Only thing is my doctor did agree to help me if I wanted to go on SSD.
People just don't understand the pain and misery we go through they have go through it before they really know how painful it is to sit at work all day in an upright position and typing all day.
Just need a moment here to vent. My first appointment for SSD is next week. I was reading through all the paperwork that I have printed off from all the helpful websites and started wondering about what my Rheumatologist would say about my SSD. Well, my PCP agrees that I am disabled with FMS but the specialist, who diagnosed me, believes I would be better to stay active and continue working every day. I can't even begin to tell you what I wanted to say to that idiot. Either he has not listened to a thing I have told him over the past three years or he doesn't believe a thing I say. I do believe it's time to change doctors. I am so very very mad & upset by this. I would give anything if I could continue with my job. I had a wonderful job, excellent pay & benefits, but had to go on a leave of absence in the hopes that I would start doing beter but I've been off now for over two months and see no relief at all. Sorry to ramble, just had to do it.
Darlene,
I understand what you are feeling my doctor has said the same thing and what makes it worse is my husband agrees with him totally which make me even mader. I agree with you change doctors. Only thing is my doctor did agree to help me if I wanted to go on SSD.
People just don't understand the pain and misery we go through they have go through it before they really know how painful it is to sit at work all day in an upright position and typing all day.
korken
02-01-2002, 10:42 PM
What kind of doctors are these? My husband's doctor said he was surprised he made it this long and suggested SSD. We only asked about short term but, he said long term.
How do you get ssd if your FMS doc won't agree. Gary's first apt is next Friday w/SSD. On the phone.
He can't get up in the AM.
Good luck to you.
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Take care ~Kim & Gary~
How do you get ssd if your FMS doc won't agree. Gary's first apt is next Friday w/SSD. On the phone.
He can't get up in the AM.
Good luck to you.
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Take care ~Kim & Gary~
darlene
02-03-2002, 04:46 AM
AS far as getting up in the morning I trully do understand. If someone had told me this several years ago I progbably would have thought they were just lazy. Well, that's coming around to bite me because the mornings are absolutely the very worse. I stopped by my place of employment the other day and when I left I had myself convinced I could give it another try, but come the next morning I knew there is just no way I can ever do it again. I can't commit to a regular schedule because I never know how I'm going to feel. As far has how do you get SSD without your doctor's support, I don't know, but I guess I'll eventually find out. My PCP put me on disability but the specialist, the idiot, did not. So, I am now checking in to see if another well known specialist at OHSU is taking new patients and I'll see where it goes from there. I spoke to a lawyer on the phone that I was referred to from someone on this board, I told him I was concerned because I didn't think the specialist would back me up, but he said that doesn't necesarily mean that it would be denied because of him. This lawyer is in Massachusetts or Maine, can't remember, but FMS and CFS are his speciality for SSD. Good luck, and thanks again to my e-mail friend for the referral.
Darlene
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Darlene
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SamQKitty
02-04-2002, 12:38 AM
Darlene -
It was I who put you in touch with the disability attorney in Massachusetts.
Is it your rheumatologist who doesn't support disability? We have a rheumatologist here in Massachusetts who is notorious for NOT supporting people who want to apply for disability, mainly because he doesn't want to be bothered with the paperwork!
I have found rheumatologists run the gamut, from very sympathetic to totally unsympathetic. Of course, that doesn't help much when you're in our situation...unwell, unable to work a normal schedule, or any schedule, and trying to get SSDI. If you can find another rheumatologist, do so. You may have to go to two or three, but the fact is, you need a sympathetic doctor to treat you anyway, even if you weren't applying for disability.
Since your PCP sounds very sympathetic, maybe he can find you a better rheumatologist. At the least, he should be willing to give you a referral (if you need one) to see a rheumatologist outside his/her own system.
Keep me posted, Darlene. Best of luck,
Ruth
It was I who put you in touch with the disability attorney in Massachusetts.
Is it your rheumatologist who doesn't support disability? We have a rheumatologist here in Massachusetts who is notorious for NOT supporting people who want to apply for disability, mainly because he doesn't want to be bothered with the paperwork!
I have found rheumatologists run the gamut, from very sympathetic to totally unsympathetic. Of course, that doesn't help much when you're in our situation...unwell, unable to work a normal schedule, or any schedule, and trying to get SSDI. If you can find another rheumatologist, do so. You may have to go to two or three, but the fact is, you need a sympathetic doctor to treat you anyway, even if you weren't applying for disability.
Since your PCP sounds very sympathetic, maybe he can find you a better rheumatologist. At the least, he should be willing to give you a referral (if you need one) to see a rheumatologist outside his/her own system.
Keep me posted, Darlene. Best of luck,
Ruth
FeelinPuney
02-04-2002, 11:57 AM
I have tried several lawyers here in Oklahoma to help
with SSD and none of them will talk to me unless I have
been turned down first. My husband says it's because they don't want to take the time with you until your first turn down. Almost everyone gets turn downed the first time seems like.
with SSD and none of them will talk to me unless I have
been turned down first. My husband says it's because they don't want to take the time with you until your first turn down. Almost everyone gets turn downed the first time seems like.
SamQKitty
02-04-2002, 04:51 PM
FeelinPuney -
Yes, you're right. Most of them won't talk to you until after the initial turndown. Mainly it's because there's not much they can do for you until you get to the point of going before the Administrative Law Judge, at which point you definitely need a lawyer.
I don't think we're supposed to post links to commercial enterprises on the board, so if you want the name of a really great SSDI attorney who has a web site and specializes in SSDI for Fibromyalgia and Chronic Fatigue Syndrom, email me at SamQKitty@aol.com, and I'll email back the info. I know this guy personnaly, as I used to run a support group for people with FM and CFS, and he would speak to the group at least once a year. He also made donations to us so we could pay for photocopying handouts, etc. I refer to him as the only lawyer who's sure to get into heaven...he's that nice!
Anyway, if you (or anyone) wants contact info for him, email me and mention in the subject line that yoou're from the fibromyalgia board.
Ruth
Yes, you're right. Most of them won't talk to you until after the initial turndown. Mainly it's because there's not much they can do for you until you get to the point of going before the Administrative Law Judge, at which point you definitely need a lawyer.
I don't think we're supposed to post links to commercial enterprises on the board, so if you want the name of a really great SSDI attorney who has a web site and specializes in SSDI for Fibromyalgia and Chronic Fatigue Syndrom, email me at SamQKitty@aol.com, and I'll email back the info. I know this guy personnaly, as I used to run a support group for people with FM and CFS, and he would speak to the group at least once a year. He also made donations to us so we could pay for photocopying handouts, etc. I refer to him as the only lawyer who's sure to get into heaven...he's that nice!
Anyway, if you (or anyone) wants contact info for him, email me and mention in the subject line that yoou're from the fibromyalgia board.
Ruth
marydell
02-17-2002, 05:04 AM
darlene i`m on SSD.You`ll find SS will forget about you unless you stay (very) visible to them.Call at least once a week,document time,date and who you spoke with.Keep records.If you feel you`re notgetting anywhere go to you local SS office with your documented calls.Stay in their face because I was lost in their records and it took me quite awhile to get my SSD(BACK).They stopped all my SSD because they reviewed my case and I was no longer disabled(I was healed but they forgot to tell my body that).I fought them without a lawyer and am now back on SSD.Geesh consider the source<Judge Judy>that woman is so hateful.
[This message has been edited by marydell (edited 02-17-2002).]
[This message has been edited by marydell (edited 02-17-2002).]
gruffgriff
02-18-2002, 01:16 PM
When our oldest daughter was going through the ss process, we made sure her doctor had a complete symptoms and limitations list. Although he had been treating her for years, he had not seen the total list and its impact upon her life. One or two things given per visit does not add up to everything, in black and white, given at once. The same list that you make for social security should be in front of your doctor's nose when he or she writes his repot for social security. Examples of what we did is below:
1. Exhaustion (dry throat that feels swollen, racing heart beat, pain in breathing are symptoms that sometimes accompany) with a duration of one to seven days.
Frequency: varies, but averages once to twice a month over the year.
Limitation: the only activity that takes place is moving from a chair to the bathroom and back again. Unable to think clearly, carry on a conversation, or care about anything
6. burning eyes, hot to touch and to me internally (pain that causes eyes to water with a duration of minutes to days)
Frequency: variable, once per month looking at a year
Limitation: Seeing anything, reading, driving a car
Remember, you are the one living the life. The doctor is not in your shoes. Make the doc totally aware of what you are going through.
Good luck.
ps. Social Security sent daughter to a psychologist. He said it didn't matter if the symptoms were "real" or not. She couldn't work and have a normal life.
1. Exhaustion (dry throat that feels swollen, racing heart beat, pain in breathing are symptoms that sometimes accompany) with a duration of one to seven days.
Frequency: varies, but averages once to twice a month over the year.
Limitation: the only activity that takes place is moving from a chair to the bathroom and back again. Unable to think clearly, carry on a conversation, or care about anything
6. burning eyes, hot to touch and to me internally (pain that causes eyes to water with a duration of minutes to days)
Frequency: variable, once per month looking at a year
Limitation: Seeing anything, reading, driving a car
Remember, you are the one living the life. The doctor is not in your shoes. Make the doc totally aware of what you are going through.
Good luck.
ps. Social Security sent daughter to a psychologist. He said it didn't matter if the symptoms were "real" or not. She couldn't work and have a normal life.
gruffgriff
02-18-2002, 01:26 PM
And on another note, once you are turned down, social security has to pay your lawyer when you prevail. That is why many lawyers wait for the almost routine first turndown before becoming involved. They are sure to be paid this way.
Get your turndown and lawyers suddenly want you, feeling puney
Get your turndown and lawyers suddenly want you, feeling puney
darlene
02-20-2002, 05:58 PM
Hello to all of you - I haven't checked my messages for awhile so just saw your reply's. Yes, it was my rheumatologist who said I should just keep on a working. (Fool that he is.) Anyway, I've been so sick lately I haven't had the energy to even follow through on anything. Last week I was sent to OHSU to see an allergist because I had been exposed to molds at work and thought that maybe that was why I had gotten so sick and why the FMS was so much worse. Well, he called me back yesterday and told me I was allergic to animals (?? like which ones I asked, he didn't know), dust mites and mold!!! However, he told me that the mold allergy had nothing to do with making the FMS worse. Now, I wonder how can he come to that conclusion? Remember, he was hired by the Workmen's Comp carrier from where I work. I'm just so darned tired of getting the run around, which of course I know is what they want from me. Anyway, I am going to e-mao; Dr. Andrew Holman in Renton Washington (one of you recommended him & I don't remember who) and I will ask him if there is someone in my local area that he would recommend. I hope all of you are doing better than I am right now.
Darlene
Darlene
SamQKitty
02-20-2002, 10:50 PM
Hi Darlene -
I'm so sorry to hear that you've been even worse lately. I'm sending you an ehug!
Ruth
I'm so sorry to hear that you've been even worse lately. I'm sending you an ehug!
Ruth
darlene
03-02-2002, 12:25 AM
Hi, just to update you, now SSD is sending me to a Psyciatrist. I asked them what a Psychiatrist could do for me, and was told he could tell where my pain was coming from, yeah right. I'm sure it will be a real experience for me, can't wait. I still haven't received a copy of the doctor's findings from OHSU. They were sure in a hurry for me to go, but now moving like snails.
Darlene
Darlene
redjoy
03-21-2002, 08:58 PM
My grandson has chronic lyme & fibromyalgia. I put him in for SSI 15mo ago. He had IV into his chest & was in bad shape. He went to 3 of their dr's, the last one this month. I asked for a copy of his report, at the end it sd TOTALLY DISABLED CANNOT WORK! They got it back & turned him down a 2nd time, I can't understand how they could do this. Also I can't get him up in the morning it's like he's dead. I got so scared today called & pushed & nothing, This is every morning & he's getting 2 shots of b12 2x's a week!
hope21
03-21-2002, 09:24 PM
Hi,
I applied for SS in April of 2001. It took six months for my first turn down. I hired a disability attorney and filed for a reconsideration and won my claim. My claim was approved in Jan. 2002. THIS WAS A GREAT WAY TO START THE NEW YEAR! As I am a single parent, sole provider I must add, and it has been quite difficult trying to make ends meet.
When I resubmitted my application for reconsideration, I was sure to include ALL of my symptoms, duration and how they interfered with my everyday life.
Prior to this I was a very active person and loved working and being busy. This disability (I also have post concussion syndrome) has hit me like a ton of bricks. I find it very difficult getting through each day and keeping up with the small chores around the house. My pain levels shoot through the roof with the winter temperatures. There are many days I can barely get out of bed, let alone walk. I have recently started taking ultracette for pain and it has helped me tremendously. Many thanks to all of you on this board who recommend Ultram--
Good luck to all of you fighting for your benefits...Hang in there!
I applied for SS in April of 2001. It took six months for my first turn down. I hired a disability attorney and filed for a reconsideration and won my claim. My claim was approved in Jan. 2002. THIS WAS A GREAT WAY TO START THE NEW YEAR! As I am a single parent, sole provider I must add, and it has been quite difficult trying to make ends meet.
When I resubmitted my application for reconsideration, I was sure to include ALL of my symptoms, duration and how they interfered with my everyday life.
Prior to this I was a very active person and loved working and being busy. This disability (I also have post concussion syndrome) has hit me like a ton of bricks. I find it very difficult getting through each day and keeping up with the small chores around the house. My pain levels shoot through the roof with the winter temperatures. There are many days I can barely get out of bed, let alone walk. I have recently started taking ultracette for pain and it has helped me tremendously. Many thanks to all of you on this board who recommend Ultram--
Good luck to all of you fighting for your benefits...Hang in there!