The doctor emailed me tonight asking anyone would share their successes, or failures, on getting disability for RLS. I think we've only had one person write that she was successful. If anyone has any information related to their fights to get disability for RLS, please, please share them. It could end up helping so many other people.
Ann
Disability: stories to help doctor writing the book
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ViewsAskew
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Andreas
unemployment.
After one operation and fighting the worsening RLS I was written off work onto a sickness benifit then after 1-2 years a invalids benifit.You have to see approved Doctors etc.Mine was written down on forms as a chronic pain condition and still is as only in the last month have I found this site.However there is NO doubt RLS is what I have, it started when I was 12 or so before getting real bad when I was 30 or so.Now I am 37.
I live in New Zealand.
Karl, avocalea@xtra.co.nz
I live in New Zealand.
Karl, avocalea@xtra.co.nz
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cornelia
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I just recently applied for SSD. I also have Lupus, but it's the RLS that is most debilatating for me. I think the lack of sleep I get at night and the lack of coordination and concentration is as important to them as the recurring illnesses I have. I have written out my story "Living with RLS" and also my story "Living with SLE" I sent these short stories to the disability review board. If you would like to read my stories, I am more than happy to share them. My initial SSD reviewer actually requested a rush on my application and didn't see any problems with a future approval. Let me know if my story might be what your doctor is looking for. I can paste it into a post or send via e-mail. Let me know. Tina
RLS, SLE (Lupus) and Asthma
I went ahead and posted my RLS story.
LIVING WITH RLS
By Tina
Even during a bad RLS night, I try to describe the sensations to myself and still have trouble, but I will try. It occurs in both legs, but at the onset, I feel achiness in my right knee. I just get comfortable and on the verge of sleep and whammo, here we go again! For years I only experienced what I thought was just dry, itchy feet, occurring at the onset of sleep, and both feet were affected at the exact same moment. Then when my Lupus disease kicked in, I started experiencing a feeling of fiberglass and wool running through my bloodstream, especially the legs, just as I was about to fall asleep. About every 30-40 seconds there would be stinging like bees under the skin and under the muscles…and stabbing in the thighs, as if someone had a voodoo doll of me and was pinning it. This would last all night and I found relief by moving and rotating the ankles and tightening and stretching the leg muscles, so I couldn't get any sleep at all during the night. I fantasized about chopping off my legs so I could sleep...but I also had the feelings in my arms...and terrible headaches. I would be very sore and have pain for a couple days after a nightly episode due to tensing my muscles and pacing for long periods of time. I started Neurontin and after about a week I had less frequent episodes. Then after 3 months, it came back, worse than before, a 20 hour episode, even during the day. I started taking Sinemet instead, and for a couple weeks I slept like a rock, it was fantastic, but I didn't really feel rested. With 4 weeks on Sinemet, I wake up around 3:00 a.m., because I am rotating my ankles and making “snow angels” in bed, while I sleep. I have not discovered yet, why this occurs on some nights and not others. I have been watching diet, exercise and level of fatigue or stress changes, and nothing in particular seems to trigger the episodes. Without medicine it would occur all night severely, about 3 nights weekly. With my medicine now, I have some relief, the episodes occur less frequently and with less severity. But I can expect for this condition to worsen over time, even with medication.
I sometimes have a shaky feeling in my left arm, it’s not visible, but has made it hard to grasp and keep something like a cup of coffee steady with my left hand. I have also noticed that my left arm goes numb much more easily than my right.
I drop things a lot… my billfold at checkout, dishes, the phone.
Also, I have had time periods where, I have difficulty comprehending what people are saying and I have trouble with simple math and games… suddenly, I just don’t know what I am suppose to do at all, as if I‘ve never played before. I “space out” much more often lately and think I may even have short little black outs.
I have never-ending headaches. Tylenol does not help anymore. I am very sensitive to light and noise. Also I have “ice pic” headaches occasionally, that started at age 19. Right eye will water for awhile after this type of headache.
LIVING WITH RLS
By Tina
Even during a bad RLS night, I try to describe the sensations to myself and still have trouble, but I will try. It occurs in both legs, but at the onset, I feel achiness in my right knee. I just get comfortable and on the verge of sleep and whammo, here we go again! For years I only experienced what I thought was just dry, itchy feet, occurring at the onset of sleep, and both feet were affected at the exact same moment. Then when my Lupus disease kicked in, I started experiencing a feeling of fiberglass and wool running through my bloodstream, especially the legs, just as I was about to fall asleep. About every 30-40 seconds there would be stinging like bees under the skin and under the muscles…and stabbing in the thighs, as if someone had a voodoo doll of me and was pinning it. This would last all night and I found relief by moving and rotating the ankles and tightening and stretching the leg muscles, so I couldn't get any sleep at all during the night. I fantasized about chopping off my legs so I could sleep...but I also had the feelings in my arms...and terrible headaches. I would be very sore and have pain for a couple days after a nightly episode due to tensing my muscles and pacing for long periods of time. I started Neurontin and after about a week I had less frequent episodes. Then after 3 months, it came back, worse than before, a 20 hour episode, even during the day. I started taking Sinemet instead, and for a couple weeks I slept like a rock, it was fantastic, but I didn't really feel rested. With 4 weeks on Sinemet, I wake up around 3:00 a.m., because I am rotating my ankles and making “snow angels” in bed, while I sleep. I have not discovered yet, why this occurs on some nights and not others. I have been watching diet, exercise and level of fatigue or stress changes, and nothing in particular seems to trigger the episodes. Without medicine it would occur all night severely, about 3 nights weekly. With my medicine now, I have some relief, the episodes occur less frequently and with less severity. But I can expect for this condition to worsen over time, even with medication.
I sometimes have a shaky feeling in my left arm, it’s not visible, but has made it hard to grasp and keep something like a cup of coffee steady with my left hand. I have also noticed that my left arm goes numb much more easily than my right.
I drop things a lot… my billfold at checkout, dishes, the phone.
Also, I have had time periods where, I have difficulty comprehending what people are saying and I have trouble with simple math and games… suddenly, I just don’t know what I am suppose to do at all, as if I‘ve never played before. I “space out” much more often lately and think I may even have short little black outs.
I have never-ending headaches. Tylenol does not help anymore. I am very sensitive to light and noise. Also I have “ice pic” headaches occasionally, that started at age 19. Right eye will water for awhile after this type of headache.
RLS, SLE (Lupus) and Asthma
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ViewsAskew
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Tina, thank you for posting this. I will see if this will help him. I think he would be interested in fllowing the story to see what happens. And possibly to learn more about the interactions you have with the SSD reviewer and what they say to you, how long your process takes, any other paperwork you needed to complete, etc.
It is tremendously positive that your reviewer requested a rush and didn't see any problems. Sounds like a great omen.
Ann
It is tremendously positive that your reviewer requested a rush and didn't see any problems. Sounds like a great omen.
Ann
hi Ann, glad my story might help. One thing about all the SSD stuff is that they do seem more interested in the SLE. It is also a misunderstood disease, but they have heard of it, at least. If I just had SLE, I could work temporarily, maybe self-employment, but along with the RLS, I just don't get the rest I need to function right. One problem I might run into is that they sent out a couple questionnaires to family and friends. We all know how well people without RLS know about it. (haha) I don't share much of anything with family and friends. Actually I just say I have the flu a lot, because that is something people can relate to. And my doctor doesn't know much more about it than that either, so I am not sure how this will all turn out. I can't work, I know that, but as far as actually being approved for benefits, I just don't know. But yes, the first interview was encouraging. Tina
RLS, SLE (Lupus) and Asthma
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Kris
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I think mine started after I injured my foot. I thought it was broken, and went to 3 different docs, but they said it was a bad sprain. Even as a 3rd degree sprain it wasn't treated right. They gave me an aircast and I walked on it and did my best to keep working, as they literally sent me from the ER right back to work. Well, turns out I had broken my talus bone. I have had jerky legs since.
Well, I had pain since. I have an osteochondral defect and bilateral tarsal tunnel. I thought the leg jerking was caffiene so I quit it. THen I got off nutrasweet and the leg jerking got so bad I could not sleep. I was out of work 3 weeks like a whimp with constant tremors in my legs, jerking, pain.
The pain got so bad I can't walk. I wake up constantly and for me it hurts like my legs are broken and my muscles are so sore. I am bad about rubbing my legs and arm all the time - I itch so bad I've broken the skin.
What is bad in my case is that I can't get up and walk like I really feel like I need to because of the tts. I have to pretty much sit/lay there and get drove up the wall.
Well, I had pain since. I have an osteochondral defect and bilateral tarsal tunnel. I thought the leg jerking was caffiene so I quit it. THen I got off nutrasweet and the leg jerking got so bad I could not sleep. I was out of work 3 weeks like a whimp with constant tremors in my legs, jerking, pain.
The pain got so bad I can't walk. I wake up constantly and for me it hurts like my legs are broken and my muscles are so sore. I am bad about rubbing my legs and arm all the time - I itch so bad I've broken the skin.
What is bad in my case is that I can't get up and walk like I really feel like I need to because of the tts. I have to pretty much sit/lay there and get drove up the wall.
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Guest TJ
Disablity: stories to help doctor writing the book
Hi, this is TJ,
My husband is the one who suffers from RLS. He has been out of work since Feb. 2004. We applied for SSD in Aug of 2004. We put a number of things down for the disablity. RLS, Migraines, Adjustment disorder, Anxiety, Depression. He had his interview 8-10-04, and they also sent forms for either friends or family members to fill out and tell them what we see. My mother and I both filled them out and told them we thought his condition was severe. They told us it would take atleast 3-5 months to get an answer. We got ours 9-17-04. Approximately 5 weeks later. They denied him. They said we realize you cannot return to your regular work but you can find something else that's less demanding. Well all of you know that's not very realistic. He has severe sleep problems, and since we applied for SSD he has been diagnosed with Fibromyalgia, Sleep Apnea, PLMD, along with everything else. He has been collecting disablity benifits through his work, but now they want him to apply for SSD again. This time we have a lawyer working with us free of charge assigned by his benefit company. We've just started the process and are still working on the paperwork to submit it. I have researched alot and Fibromyalgia is recognized as a disablity by SSD. So I will let you know how things go and I hope this helps.
TJ
My husband is the one who suffers from RLS. He has been out of work since Feb. 2004. We applied for SSD in Aug of 2004. We put a number of things down for the disablity. RLS, Migraines, Adjustment disorder, Anxiety, Depression. He had his interview 8-10-04, and they also sent forms for either friends or family members to fill out and tell them what we see. My mother and I both filled them out and told them we thought his condition was severe. They told us it would take atleast 3-5 months to get an answer. We got ours 9-17-04. Approximately 5 weeks later. They denied him. They said we realize you cannot return to your regular work but you can find something else that's less demanding. Well all of you know that's not very realistic. He has severe sleep problems, and since we applied for SSD he has been diagnosed with Fibromyalgia, Sleep Apnea, PLMD, along with everything else. He has been collecting disablity benifits through his work, but now they want him to apply for SSD again. This time we have a lawyer working with us free of charge assigned by his benefit company. We've just started the process and are still working on the paperwork to submit it. I have researched alot and Fibromyalgia is recognized as a disablity by SSD. So I will let you know how things go and I hope this helps.
TJ
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Penguinrocks
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Hi TJ,
I wish all the luck to your husband and you!
One thing I learned about SSD, is that everyone who applies is denied the first time. Everyone!!!! Then the second time around seems to be the "proof that you really need it"
Since it's been since 2004, you'll probably be denied again. An immediate appeal should be done by you and then they'll figure, "hey, their not joking"
Seems pretty stupid, I know, but that's government for ya!
Loves
Penguin
I wish all the luck to your husband and you!
One thing I learned about SSD, is that everyone who applies is denied the first time. Everyone!!!! Then the second time around seems to be the "proof that you really need it"
Since it's been since 2004, you'll probably be denied again. An immediate appeal should be done by you and then they'll figure, "hey, their not joking"
Seems pretty stupid, I know, but that's government for ya!
Loves
Penguin
Beware the Penguin
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ViewsAskew
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Thank all of you for your stories. I'll keep looking for updates from you. I'm sure that all of the difficulties you've all been through will help others. Penguin mentioned that you have to do it more than once, and appeal immediately. Many people would not know that. Hopefully all of your experiences will help other people have a better time when they try.
Ann
Ann
I went off of work years ago but it was a combination of RLS/fibromyalgia and stress. Now since RLS and Fibro were not very recognized my GP played heavily on the stress, and lets face it....RLS will create stress, because if you are sleep deprived it runs over into your ever day living and makes it very difficult to function thus creating stress. It's like a snowball effect. Anyway, I went back to work after 2 years, lasted two years, the second just dragging myself through and now I have ended up back off work and I am just now waiting so see if my disability will get passed because this time (a different doctor) is basing it mainly on the RLS which is truly causing most of my problems right now. I'll let you know if it goes through and if it helps share with you the write up that I have. I have to point out that I am a severely RLS in that I get episodes on and off every single day. I quickly become intolerant to medications.
Trish
Trish
100 years from now it will not matter the car I drove, the house I lived in or the size of my bank account. All that will matter is that I was important in the life of a child...
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guest TJ
Hi Penguin, this is TJ,
Just wanted to let you know I saw your post and thanks. We haven't gotten any further yet. We got the paperwork done over the phone with the lawyers and haven't heard anything back yet. I'm not even sure how long it's been, maybe 2 weeks at the most. They told Tim that he would probably be denied again right away. We'll just have to wait and see I guess.
He's very frustrated with our Dr. at the moment. He feels he's stopped listening to him. He's been weaning Tim off the pain medication and thinks all Tim does is sit around and feel sorry for himself, which is far from the truth. I think our Dr. is frustrated with Tim because he can't find a medical way to help him. Have any of you faced that with your Drs? He wants Tim to try hypnotherapy, so he's going to give it a try. We'll see if that helps him learn how to relax his muscles and find a calm spot to escape to. I'll let you know if it seems to help him or not.
Thanks for the support that's always given here.
TJ
Just wanted to let you know I saw your post and thanks. We haven't gotten any further yet. We got the paperwork done over the phone with the lawyers and haven't heard anything back yet. I'm not even sure how long it's been, maybe 2 weeks at the most. They told Tim that he would probably be denied again right away. We'll just have to wait and see I guess.
He's very frustrated with our Dr. at the moment. He feels he's stopped listening to him. He's been weaning Tim off the pain medication and thinks all Tim does is sit around and feel sorry for himself, which is far from the truth. I think our Dr. is frustrated with Tim because he can't find a medical way to help him. Have any of you faced that with your Drs? He wants Tim to try hypnotherapy, so he's going to give it a try. We'll see if that helps him learn how to relax his muscles and find a calm spot to escape to. I'll let you know if it seems to help him or not.
Thanks for the support that's always given here.
TJ
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Penguinrocks
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Hi TJ
Well, I have also started Hypnotherapy! Imagine the coincedences! Anyway, if Tim's doc is getting frustrated, My suggestion is for Tim to just go in, sit down with the doc and "hash this out". If his doc still gives Tim a hard time, FIRE HIM!
Your hubby doesn't need that kind of crap from anyone! The poor guy! His doctor works for HIM. not the other way around. Find a good neuro if possible.
Now about the hypnotherapy. My lovely "shrink" says I'm very good at it. I have a very creative imagination and I can picture calming places in color and "make" myself be there. As far as helping the RLS? Well, let's just say it helps with taking away the headaches that the Requip FOR RLS, has started.
But you know that everyone is different.
All my best to the peeps on this site, you and Tim
Loves
Penguin
Well, I have also started Hypnotherapy! Imagine the coincedences! Anyway, if Tim's doc is getting frustrated, My suggestion is for Tim to just go in, sit down with the doc and "hash this out". If his doc still gives Tim a hard time, FIRE HIM!
Your hubby doesn't need that kind of crap from anyone! The poor guy! His doctor works for HIM. not the other way around. Find a good neuro if possible.
Now about the hypnotherapy. My lovely "shrink" says I'm very good at it. I have a very creative imagination and I can picture calming places in color and "make" myself be there. As far as helping the RLS? Well, let's just say it helps with taking away the headaches that the Requip FOR RLS, has started.
But you know that everyone is different.
All my best to the peeps on this site, you and Tim
Loves
Penguin
Beware the Penguin