ChronicallyFatigued
07-24-2007, 02:34 PM
I was approved last summer for SSDI due to post-Lyme Disease/Chronic Fatigue Syndrome, anxiety, and panic disorder. The letter I recieved said that I was approved up until December of 2008 and then they will reevaluate the case. What does this mean exactly? Do they call you back in for a medical examination and, if so, what is the likelyhood that you could lose your benefits even though you're still sick?
I'm just afraid that somehow they will find a loophole to kick me off even though I still need it very badly...I'm even worse now physically than I was then.
Is there anything you can do that increases your likelyhood of not losing benefits? Like going to see a lot of doctors, etc? How does this work?
Thanks everyone.
I'm just afraid that somehow they will find a loophole to kick me off even though I still need it very badly...I'm even worse now physically than I was then.
Is there anything you can do that increases your likelyhood of not losing benefits? Like going to see a lot of doctors, etc? How does this work?
Thanks everyone.
Sponsor
cantell
07-24-2007, 04:13 PM
dont quote me but from what I understand is they do this to see if you are seeking and continuing medical treatment and if you condition has worsened or gotten better.
also, from what I understand is when once approved for benifits the less the liklyhood of them taking it away.
hope this helps some..I am sure someone else will come along shortly and maybe help you out more. I know I have read post on this board concerning a simular situation..maybe you could do a search on the subject for more information..good luck and take care
also, from what I understand is when once approved for benifits the less the liklyhood of them taking it away.
hope this helps some..I am sure someone else will come along shortly and maybe help you out more. I know I have read post on this board concerning a simular situation..maybe you could do a search on the subject for more information..good luck and take care
Director
07-24-2007, 05:58 PM
When I got my letter of acceptance for benefits, it said that I would be subject to a possible review in 5-7 years. That was over four years ago. I begin my fifth year in March of 2008.
Someone had told me earlier that reviews like that really didn't mean too much, especially if you are older, like 50 or over. They just want to see if it's possible you can work and possibly even retained for a new occupation you could do.
If anyone has additional information on this, we would welcome your input.
Someone had told me earlier that reviews like that really didn't mean too much, especially if you are older, like 50 or over. They just want to see if it's possible you can work and possibly even retained for a new occupation you could do.
If anyone has additional information on this, we would welcome your input.
ChronicallyFatigued
07-25-2007, 09:22 AM
Thanks for the help so far. I've pretty much heard the same things, but there seems to be very little in forums about this kind of thing. I assume it must not be a big deal if so few people are talking about it.
Still, I'd like to hear from someone who has actually gone through the process themselves and lived to tell about it...haha. I'm very curious about the procedure and if there is anything I should do to be prepared for it.
Thanks again.
Still, I'd like to hear from someone who has actually gone through the process themselves and lived to tell about it...haha. I'm very curious about the procedure and if there is anything I should do to be prepared for it.
Thanks again.
Vergie
07-25-2007, 12:37 PM
Thanks for the help so far. I've pretty much heard the same things, but there seems to be very little in forums about this kind of thing. I assume it must not be a big deal if so few people are talking about it.
Still, I'd like to hear from someone who has actually gone through the process themselves and lived to tell about it...haha. I'm very curious about the procedure and if there is anything I should do to be prepared for it.
Thanks again.
Hi,
I've experienced going thru the mini version of reviews if its considered a review twice. I was sent a card type questionaire with about 6 questions on it, called Updated information. SSA needs to know based upon these questions if they need to do a FULL blown medical review. Basically the questions are...1] are you seeing a doctor, dates etc. Are you working etc. Have you discussed with your doctor if you can go back to work? Are you better, worse or same? ...Based on your answers, SSA will decide IF they'll continue with the extensive review.....I understand that as long as you see your DR. and are getting treatment you'll remain on SSDI. Please consider every case is different. I'm just sharing my individual experience with SSDI.
Vergie
Still, I'd like to hear from someone who has actually gone through the process themselves and lived to tell about it...haha. I'm very curious about the procedure and if there is anything I should do to be prepared for it.
Thanks again.
Hi,
I've experienced going thru the mini version of reviews if its considered a review twice. I was sent a card type questionaire with about 6 questions on it, called Updated information. SSA needs to know based upon these questions if they need to do a FULL blown medical review. Basically the questions are...1] are you seeing a doctor, dates etc. Are you working etc. Have you discussed with your doctor if you can go back to work? Are you better, worse or same? ...Based on your answers, SSA will decide IF they'll continue with the extensive review.....I understand that as long as you see your DR. and are getting treatment you'll remain on SSDI. Please consider every case is different. I'm just sharing my individual experience with SSDI.
Vergie
lizzy76
07-25-2007, 05:42 PM
I've also gone through a review of sorts. I guess it was a review because I got a letter in the mail saying that they had reviewed my case and determined that my disability was still ongoing so my benefits continue. Prior to this I had received a similar questionaire in the mail as the person before me talked about, although mine had some different questions. It wasn't very involved and I never had to see a doctor or even talk to anyone at SS.
By the way, I'm 31 and on disability for depression. People always say that age is a factor in getting and staying on disability but I had NO problem at all with getting approved - I was approved in 4 months of applying my first time. I think I was 28 at the time I was approved.
By the way, I'm 31 and on disability for depression. People always say that age is a factor in getting and staying on disability but I had NO problem at all with getting approved - I was approved in 4 months of applying my first time. I think I was 28 at the time I was approved.
ChronicallyFatigued
07-26-2007, 08:01 PM
Very interesting. Thanks for your input, both of you.
So, it seems that it is pretty important that you are seeing your doctor and/or getting treatments pretty regularly. I'm in sort of a dilmena with this because every doctor I see, including my family practitioner can't help me nor do they ever ask to see me back! It makes it really difficult to see anyone on a regular basis if they can't do anything for you.
I made it clear to disability very early on and stressed the point during my hearing that I am almost entirely intolerant to any of the medications that are supposed to help me. Because of that, there isn't much any doctor can do to help me...obviously, it's mostly medicine they deal in, so what am I really supposed to do about it?
I did at one point see a psychologist to see if it could help, but after 6 months, I saw no improvement and actually felt worse because of it. I explained all that to the judge as well.
I dunno, am I just supposed to bounce around between doctors or just get medications filled and not take them just to pretend I'm doing something?
I'm totally confused about this...
So, it seems that it is pretty important that you are seeing your doctor and/or getting treatments pretty regularly. I'm in sort of a dilmena with this because every doctor I see, including my family practitioner can't help me nor do they ever ask to see me back! It makes it really difficult to see anyone on a regular basis if they can't do anything for you.
I made it clear to disability very early on and stressed the point during my hearing that I am almost entirely intolerant to any of the medications that are supposed to help me. Because of that, there isn't much any doctor can do to help me...obviously, it's mostly medicine they deal in, so what am I really supposed to do about it?
I did at one point see a psychologist to see if it could help, but after 6 months, I saw no improvement and actually felt worse because of it. I explained all that to the judge as well.
I dunno, am I just supposed to bounce around between doctors or just get medications filled and not take them just to pretend I'm doing something?
I'm totally confused about this...
Charlyssa
07-27-2007, 01:51 AM
Hi!
Wow. One thing I'm finding is that the review process sure does vary! It's odd that they have you up for review in 2.5 years - it's usually 12-18 months, or 3 years, or 5-7 years. The reasons for the different time frames are either "improvement expected", "improvement possible", "improvement unlikely", (or words to that effect) respectively. It seems in your case they feel improvement is possible. Chronic Fatigue Syndrome, anxiety, and panic disorder apparently can improve, so this is why you'll be reviewed.
I'm like you - I rarely see docs ... because other than to give me meds to help control my symptoms, there's no cure for them, so seeing docs on a regular basis is pointless. SSD never held that against me, either, as they already knew that from forms I had filled out. That said, at my 3 year review (BTW, I have a thread titled "3 year review?" or something similar, if you want to flip thru trying to find it - may be around page 3 or 4??? And it explains what I went thru just 3 months ago) Essentially, they sent me a BIG packet of papers to fill out. That was in Aug. 2005. I never heard back until this past January, and they wanted me to fill out the same forms (???), plus additional. Sent those in and a month later they said they were sending me to a dr. for testing. I heard back a few weeks later that my benefits were continuing. OH! BTW, important to note - you will continue to receive your benefits WHILE you are in the review process, but honestly, I have no idea what happens if they determine you are no longer eligible for benefits. But no point thinking about that now - it was just FYI.
As far as what you can do between now and the review, I would see a dr. at least twice more, if for no other reason than for them to note that your conditions haven't improved. You could also ask if there are other meds to try to see if they would help and be tolerable. If not, no big deal - it only shows that you are still sick and still untreatable. And that is the biggest determining factor - if you have improved - for SSD when they do the reviews.
Hope this might help.
Char :wave:
Wow. One thing I'm finding is that the review process sure does vary! It's odd that they have you up for review in 2.5 years - it's usually 12-18 months, or 3 years, or 5-7 years. The reasons for the different time frames are either "improvement expected", "improvement possible", "improvement unlikely", (or words to that effect) respectively. It seems in your case they feel improvement is possible. Chronic Fatigue Syndrome, anxiety, and panic disorder apparently can improve, so this is why you'll be reviewed.
I'm like you - I rarely see docs ... because other than to give me meds to help control my symptoms, there's no cure for them, so seeing docs on a regular basis is pointless. SSD never held that against me, either, as they already knew that from forms I had filled out. That said, at my 3 year review (BTW, I have a thread titled "3 year review?" or something similar, if you want to flip thru trying to find it - may be around page 3 or 4??? And it explains what I went thru just 3 months ago) Essentially, they sent me a BIG packet of papers to fill out. That was in Aug. 2005. I never heard back until this past January, and they wanted me to fill out the same forms (???), plus additional. Sent those in and a month later they said they were sending me to a dr. for testing. I heard back a few weeks later that my benefits were continuing. OH! BTW, important to note - you will continue to receive your benefits WHILE you are in the review process, but honestly, I have no idea what happens if they determine you are no longer eligible for benefits. But no point thinking about that now - it was just FYI.
As far as what you can do between now and the review, I would see a dr. at least twice more, if for no other reason than for them to note that your conditions haven't improved. You could also ask if there are other meds to try to see if they would help and be tolerable. If not, no big deal - it only shows that you are still sick and still untreatable. And that is the biggest determining factor - if you have improved - for SSD when they do the reviews.
Hope this might help.
Char :wave:
ChronicallyFatigued
07-27-2007, 10:38 AM
Thank you Char, your post makes me feel quite a bit better about this whole thing. I probably should have pointed out that it took me about 2 years to get approved. I was approved for the period of December 2003 until December 2008...a total of 5 years, so that probably means they feel that my improvent is either possible or unexpected.
I'm not looking foward to having to fill out those packets or see their doctors again, but if that's what it takes to keep my benefits, that's what I'm gonna do. At least they keep your benefits active while all this crap is going on. I just think it stinks that so many of us have to fight for our benefits for years and then when you finally get them, they make you fight to keep them. Obviously SSDI, like any other insurance, isn't in the business of paying out, but collecting.
I will take your advice about seeing a couple more doctors...at least just to note that my symptoms haven't gotten better and that there isn't anything they can do to help me get better. Actually, I was even hospitalized due to Shingles this past fall. The Shingles were most definitely related to my illness ie weakened immune system, stress and I couldn't even tolerate the antiviral medications they tried to put me on and this was all documented by at least 3 doctors (family doctor, a doctor on call at the hospital, and an infectious disease doctor that spoke with me). I'm lucky that Shingles will clear up on its on, otherwise, I could have been in a real mess. So, hopefully events like these are sending clear messages to SSDI.
Thanks again, you helped a lot.
I'm not looking foward to having to fill out those packets or see their doctors again, but if that's what it takes to keep my benefits, that's what I'm gonna do. At least they keep your benefits active while all this crap is going on. I just think it stinks that so many of us have to fight for our benefits for years and then when you finally get them, they make you fight to keep them. Obviously SSDI, like any other insurance, isn't in the business of paying out, but collecting.
I will take your advice about seeing a couple more doctors...at least just to note that my symptoms haven't gotten better and that there isn't anything they can do to help me get better. Actually, I was even hospitalized due to Shingles this past fall. The Shingles were most definitely related to my illness ie weakened immune system, stress and I couldn't even tolerate the antiviral medications they tried to put me on and this was all documented by at least 3 doctors (family doctor, a doctor on call at the hospital, and an infectious disease doctor that spoke with me). I'm lucky that Shingles will clear up on its on, otherwise, I could have been in a real mess. So, hopefully events like these are sending clear messages to SSDI.
Thanks again, you helped a lot.
lizzy76
07-30-2007, 06:04 PM
I would recommend seeing a doctor at least a couple of more times as well. I really believe that the fact that I had been hospitalized so many times and had been seeing my doctor, therapist and psychiatrist continuously was what helped me get approved for SSDI so quickly and at a young age. And that I'm still seeing a treatment team right now was probably a factor in having my review processed so quickly without me having to see one of their docs.
I can't even begin to tell you how many meds I've been on over the years. I would encourage you to keep trying... I have finally found some meds that have helped me recently; however, that's happened in the past and after a few months they stop working so I end up switching again. But I'm willing to keep searching b/c I want to work through this depression. It seems really important for SS to see that you are trying to get better if they have deemed your condition "improved likely" or "possible improvement". I wouldn't give up hope just yet on finding mes that can help, or finding a therapist or doctor that can help you. How long have you been trying meds?
I can't even begin to tell you how many meds I've been on over the years. I would encourage you to keep trying... I have finally found some meds that have helped me recently; however, that's happened in the past and after a few months they stop working so I end up switching again. But I'm willing to keep searching b/c I want to work through this depression. It seems really important for SS to see that you are trying to get better if they have deemed your condition "improved likely" or "possible improvement". I wouldn't give up hope just yet on finding mes that can help, or finding a therapist or doctor that can help you. How long have you been trying meds?
ChronicallyFatigued
07-30-2007, 07:47 PM
How long have you been trying meds?
Believe it or not, since DAY ONE! I've been sick with Chronic Fatigue Syndrome, anxiety, and panic attacks for nearly 4 years now and one of the most profound symptoms present right from the beginning was this amazing intolerance to the antidepressant/antianxiety medications. Anything that tampered with my nervous system would cause extreme side effects. All the medications like Zoloft, Effexor, and Lexapro caused me severe anxiety, panic, confusion, irritability, bursts of rage, and depression all much worse than normal. This was only after about 1/4 of the lowest doses available!
My doctor initially thought that it was the elevation of serotonin that caused the problems, so he put my Zyprexa to actually lower the serotonin and that caused me to feel extremely depressed, irritable, and constantly hungry for nearly a week again after only 1/4 of the lowest dose.
So, then the next step was to try the sedatives which included Xanax and Klonopin. Well, they didn't make me sicker per say, but I was totally nonfunctional on them....would just knock me out and put me to sleep for hours. Makes a great sleeping pill, but did absolutely nothing for anxiety. On the contrary, when it would wear off, my anxiety would feel worse and I'd be extremely depressed for several days following...all that after, you guessed it, 1/4 of the lowest dose.
Since then, I've also tried all the most popular herbal supplements like gingko, sam-E, st john's wort, l-tyrosine, and things like this. They all caused the same problems as Zoloft and the others, so they are not an option either.
Finally, I decided to try an alternative option...a device called Alpha-Stim. It's a very highly rated FDA approved device that's been proven to cure anxiety and depression in many people, but it just made me feel really strange and out of it for several days...not a very pleasant experience in the least, so that was out.
As you can see, my problem is very long and very deep with seemingly no solution in sight. People would tell me things like, "Maybe you aren't giving these things a chance....the side effects might improve if you can stick with it.." All I can say back is "are you kidding me????" People fail to realize just how profound and overwhelming these side effects are and how much they take out of me. I take one bad pill and I'm down and out for days to weeks following....This cycle has occurred so many times that I'm afraid I'm causing more damage to my body by even trying any of them.
Basically, I'm not about to tamper with my body anymore with these drugs...just isn't worth the risk...
Believe it or not, since DAY ONE! I've been sick with Chronic Fatigue Syndrome, anxiety, and panic attacks for nearly 4 years now and one of the most profound symptoms present right from the beginning was this amazing intolerance to the antidepressant/antianxiety medications. Anything that tampered with my nervous system would cause extreme side effects. All the medications like Zoloft, Effexor, and Lexapro caused me severe anxiety, panic, confusion, irritability, bursts of rage, and depression all much worse than normal. This was only after about 1/4 of the lowest doses available!
My doctor initially thought that it was the elevation of serotonin that caused the problems, so he put my Zyprexa to actually lower the serotonin and that caused me to feel extremely depressed, irritable, and constantly hungry for nearly a week again after only 1/4 of the lowest dose.
So, then the next step was to try the sedatives which included Xanax and Klonopin. Well, they didn't make me sicker per say, but I was totally nonfunctional on them....would just knock me out and put me to sleep for hours. Makes a great sleeping pill, but did absolutely nothing for anxiety. On the contrary, when it would wear off, my anxiety would feel worse and I'd be extremely depressed for several days following...all that after, you guessed it, 1/4 of the lowest dose.
Since then, I've also tried all the most popular herbal supplements like gingko, sam-E, st john's wort, l-tyrosine, and things like this. They all caused the same problems as Zoloft and the others, so they are not an option either.
Finally, I decided to try an alternative option...a device called Alpha-Stim. It's a very highly rated FDA approved device that's been proven to cure anxiety and depression in many people, but it just made me feel really strange and out of it for several days...not a very pleasant experience in the least, so that was out.
As you can see, my problem is very long and very deep with seemingly no solution in sight. People would tell me things like, "Maybe you aren't giving these things a chance....the side effects might improve if you can stick with it.." All I can say back is "are you kidding me????" People fail to realize just how profound and overwhelming these side effects are and how much they take out of me. I take one bad pill and I'm down and out for days to weeks following....This cycle has occurred so many times that I'm afraid I'm causing more damage to my body by even trying any of them.
Basically, I'm not about to tamper with my body anymore with these drugs...just isn't worth the risk...
Charlyssa
07-30-2007, 10:11 PM
Hi!
You're welcome! I agree - the array of forms aren't fun, but the alternative is worse. ;)
I had shingles, too, a few years ago. Awful! It was right after we moved cross country and it was the move from h*ll. I have GAD and depression and I'm certain that the stress of it brought them on, so I hear you.
As for meds, I am also a very side-effect-sensitive person. I tried SEVEN Ad's before I was put on Lexapro and fortunately, it's at least been tolerable.
Have you ever tried BuSpar? It's an anti-anxiety med. I was on it for 4 months and felt wonderfully NORMAL!! it was the best I have ever tried and it had no side-effects. No sleepiness, no bathroom problems, no nothing - I just felt great. I would be on it today if I could, but, my ins. wouldn't pay for more than that, and I couldn't afford to keep up with it. Now I just take Xanax when I'm a stressed wreck. Yeah, I imagine you're cringing at the thought of trying something else..and I realize that just because it worked for me, doesn't mean it will for you. But to feel better, I decided to keep going until I got the right fit. Up to you, of course, but from one anxietiac LOL to another, thought I would at least tell you about it.
Char :wave:
You're welcome! I agree - the array of forms aren't fun, but the alternative is worse. ;)
I had shingles, too, a few years ago. Awful! It was right after we moved cross country and it was the move from h*ll. I have GAD and depression and I'm certain that the stress of it brought them on, so I hear you.
As for meds, I am also a very side-effect-sensitive person. I tried SEVEN Ad's before I was put on Lexapro and fortunately, it's at least been tolerable.
Have you ever tried BuSpar? It's an anti-anxiety med. I was on it for 4 months and felt wonderfully NORMAL!! it was the best I have ever tried and it had no side-effects. No sleepiness, no bathroom problems, no nothing - I just felt great. I would be on it today if I could, but, my ins. wouldn't pay for more than that, and I couldn't afford to keep up with it. Now I just take Xanax when I'm a stressed wreck. Yeah, I imagine you're cringing at the thought of trying something else..and I realize that just because it worked for me, doesn't mean it will for you. But to feel better, I decided to keep going until I got the right fit. Up to you, of course, but from one anxietiac LOL to another, thought I would at least tell you about it.
Char :wave:
ChronicallyFatigued
07-30-2007, 10:32 PM
Thanks Char for the information and sorry you also had to go through Shingles...I wouldn't wish that on my worst enemy.
I haven't tried Buspar amazingly...haha, I had tried just about all of them except that one. The reason I haven't is because Buspar affects serotonin levels in the brain and my previous experiences with medications that alter serotonin have been terrible. I was even hospitalized once for taking one of those meds...had to be given a drug to counteract the effects...yeah, it was bad.
Concerning trying new things, believe it or not, even my family doctor is afraid to prescribe anything like that for me anymore. In the beginning, I had to push him to try new things and he finally put a hault to it by saying, "You know, up until now you'll come in wanting to try something and as long as I didn't think it would kill you, I'd give it to you. But, I'm afraid that we could be doing more harm than good..."
Perhaps, I'll have to see a psychiatrist for more help on that front...there could be an avenue we haven't yet explored although I doubt it...
Thanks again, Char.
I haven't tried Buspar amazingly...haha, I had tried just about all of them except that one. The reason I haven't is because Buspar affects serotonin levels in the brain and my previous experiences with medications that alter serotonin have been terrible. I was even hospitalized once for taking one of those meds...had to be given a drug to counteract the effects...yeah, it was bad.
Concerning trying new things, believe it or not, even my family doctor is afraid to prescribe anything like that for me anymore. In the beginning, I had to push him to try new things and he finally put a hault to it by saying, "You know, up until now you'll come in wanting to try something and as long as I didn't think it would kill you, I'd give it to you. But, I'm afraid that we could be doing more harm than good..."
Perhaps, I'll have to see a psychiatrist for more help on that front...there could be an avenue we haven't yet explored although I doubt it...
Thanks again, Char.
lizzy76
07-31-2007, 12:18 AM
Wow I had assumed that you were seeing a psychiatrist for the meds! I've worked with my primary care doctor for around 15 years and we knew each other very well and she had seen me through many medical emergencies but once my depression got to a certain point she would not prescribe me meds anymore... she was very competent but said that my case was out of her experience range of psych meds. In addition to depression I've also struggled for a long time with anorexia, anxiety, ptsd and self harm so as you can see my issues run deep as well. I've tried just about all of the meds that are out there and was even considering ECT at one point but kept on with the meds until I found a combo that works. That's the thing with psychiatrists.... they know more about med combos and what interacts with what, etc, and are far more knowledgeable than just primary care docs on this subject. Maybe that's another avenue you can try... just a thought as it seems like you still have some options left that might help improve your quality of life.
Charlyssa
07-31-2007, 04:18 AM
Hi!
Whoa!! I didn't realize the side-effects were THAT severe! Mine ranged from not-TOO-bad, to, I-don't-know-how-much-more-of-this-I-can take...but certainly never considered serious. Yikes...
Hmm...I'm surprised, too, that a family dr. is prescribing meds. This is not their forte, most definitely. I agree with Lizzy that a Pdoc should be prescrbing them for you. This is their field of expertise. I, too, was initially prescribed meds by my PCP, an internist, and I thought she knew her stuff. The first one she put me on was Zoloft and it was the absolute worst one. I cried all the time and felt awful. She prescribed 4 others before she called it a day and sent me to a Pdoc....where I should have been sent from the beginning. He prescribed one that made me terribly nauseated, then Lex, and ta da!!! I'm doin' OK.
So, there is hope. There are SSRIs and MAOIs, but I don't remember the difference between them. So maybe you need the OTHER one. :) So yeah, I'd try a Pdoc before you jump ship entirely. I truly believe it's worth it to feel better. Again, your call. ;)
Char :wave:
Whoa!! I didn't realize the side-effects were THAT severe! Mine ranged from not-TOO-bad, to, I-don't-know-how-much-more-of-this-I-can take...but certainly never considered serious. Yikes...
Hmm...I'm surprised, too, that a family dr. is prescribing meds. This is not their forte, most definitely. I agree with Lizzy that a Pdoc should be prescrbing them for you. This is their field of expertise. I, too, was initially prescribed meds by my PCP, an internist, and I thought she knew her stuff. The first one she put me on was Zoloft and it was the absolute worst one. I cried all the time and felt awful. She prescribed 4 others before she called it a day and sent me to a Pdoc....where I should have been sent from the beginning. He prescribed one that made me terribly nauseated, then Lex, and ta da!!! I'm doin' OK.
So, there is hope. There are SSRIs and MAOIs, but I don't remember the difference between them. So maybe you need the OTHER one. :) So yeah, I'd try a Pdoc before you jump ship entirely. I truly believe it's worth it to feel better. Again, your call. ;)
Char :wave: