Hello everybody,
I recently, to my surprise, found out about RLS: I was researching iron deficiencies for my 4 year old son, and got info about RLS!!! SO here are the questions:
1. Does any of you had any iron tests to check out this relationship?\
2. Do you have problems with work productivity, focus, and energy levels during the day due to your RLS?
3. I had RLS since I was just 5-6 years old. However, I never thought of it as anything "serious" but I realize it affects my sleep: I do sleep at night but I wake up "frequently". I believe this has affected my overall energy during the day.
4. I believe I had gone through a period (2-3 years) of relative low RLS problems but started again recently: it is possible that such condition is also related to stress?
5. Is it possible that it can get worse?
Sleep, day energy level, ability to focus, work productivity
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ViewsAskew
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Re: Sleep, day energy level, ability to focus, work producti
WilliamTr wrote:1. Does any of you had any iron tests to check out this relationship?
2. Do you have problems with work productivity, focus, and energy levels during the day due to your RLS?
3. I had RLS since I was just 5-6 years old. However, I never thought of it as anything "serious" but I realize it affects my sleep: I do sleep at night but I wake up "frequently". I believe this has affected my overall energy during the day.
4. I believe I had gone through a period (2-3 years) of relative low RLS problems but started again recently: it is possible that such condition is also related to stress?
5. Is it possible that it can get worse?
The only iron test that I know of that is helpful is to test your ferritin levels. For RLSers, it should be at least 50. Iron therapy can have drawbacks, though, so check into that before you start on your own. It is documented that iron and RLS are related, but that's a whole 'nother topic!
Fatigue is one of the most common side effects. It didn't seem like much to me until I'd had it for many years and was so chronically sleep deprived I'd lost good cognitive function and was unable to do my job well.
Many people have RLS that comes and goes in severity; especially in the beginning. Surgery, other drugs, certain foods, alcohol, caffiene, pregnancy and some other medical conditions can all make it worse, too.
But time is the worst culprit. Almost all people with RLS get worse over time, especially those with primary RLS. It is progressive and chronic. It is also treatable with current meds, although some people have more problems with others finding the right meds or right cocktail of meds.
Education, which you're already obviously doing, is the best tool IMHO. There's lots of good info on this site, although it can be hard to find. www.rlshelp.org also has great info, as do many other sites.
Your son is lucky to have you working for him
; many kids go undiagnosed for years. That you're researching for him may make a world of difference. Welcome to the board!
Ann
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Guest
Re: Sleep, day energy level, ability to focus, work producti
WilliamTr wrote:Hello everybody,
I recently, to my surprise, found out about RLS: I was researching iron deficiencies for my 4 year old son, and got info about RLS!!! SO here are the questions:
1. Does any of you had any iron tests to check out this relationship?\
2. Do you have problems with work productivity, focus, and energy levels during the day due to your RLS?
3. I had RLS since I was just 5-6 years old. However, I never thought of it as anything "serious" but I realize it affects my sleep: I do sleep at night but I wake up "frequently". I believe this has affected my overall energy during the day.
4. I believe I had gone through a period (2-3 years) of relative low RLS problems but started again recently: it is possible that such condition is also related to stress?
5. Is it possible that it can get worse?
In answer to your questions 2 and 5, for me, Yes! I have been unable to work since 9/03 due to these symptoms and am in the midst of the Social Security Disability process in Ohio for the second time in 4 years. During the last year of working, I was barely able to function on my job and, for the first time in my career, subjected to harsh criticism and threats of dismissal. My employer only saw the 'results' of my symptoms and was unaware of the cause, since I did not inform them of my RLS/PLMD/Fibromyalgia/CF due to fear of dismissal. (I had already been dismissed from a previous job in 1999 because I was unable to continue working. Short & Long term disability were company benefits, but were denied for this condition as was my Social Security Disability claim.)
I am 47 now, but started having symptoms of just RLS off and on over the years beginning at age 21. Over the years RLS progressed. I now, along with the RLS, have PLMD/myoclonic movement involving 'tics' in arms, neck, trunk and legs that occur throughout the day and are so severe at night that they prevent the onset of sleep (and continue during sleep). As a result of no more than 4 hrs interrupted sleep per night since 1996, I have developed severe Fibromyalgia/Chronic Fatigue and symptoms of long-term sleep deprivation (can be life-threatening) and dependency on a cane (and sometimes a walker) to assist in mobility. I am no longer able to live alone and as someone who has been extremely independent, had a full-time career, raised 3 sons alone, and maintained my home, this is a difficult reality to accept. So for me, yes, the illness has progressed.
My current mission is to force the Social Security Administration, through any means possible, to recognize RLS/PLMD as a disabling illness.
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Guest
Hi, this is TJ,
I just read the response from Guest and it struck me very close to home.
My husband has had RLS for about 3 1/2 years, but has progressed extremely fast. He has been out of work since 2-04. We have been able to collect std/ltd disability through his work for now. We just applied for social security benifits also and were turned down. They said he couldn't return to his job but he could get something less physical. Like you said, just doing daily things around the house can take to much out of him, and like you he's a very active independent person. There's days he can hardly move or get out of bed. He hasn't needed assistance to walk yet, but there are days he just falls from the weakness in his legs. He has an appointment down at Harborview Medical Center with a neurologist who specializes in RLS, so hopefully he'll be able to help. He has also become very sleep deprived and only gets between 3-4 hours a night and very broken. He twitches violently at times, but there is always some type of movement going on with him. He has it in his arms, legs and back and has now developed new and scary pains in his hands and feet.
I wish you luck on the battle with SSI benifits, because I know first hand how the rejection feels and how misunderstood this illness is to so many people. It's amazing how many people do not know what it is and how it affects the people with it and the family members of the ones with it. I hope you have a good supprot group and a family that helps you out.
I hope to hear more from you. Thanks for your letter on here. By the way my husband will be 39 on Christmas. Happy Holidays
TJ
I just read the response from Guest and it struck me very close to home.
My husband has had RLS for about 3 1/2 years, but has progressed extremely fast. He has been out of work since 2-04. We have been able to collect std/ltd disability through his work for now. We just applied for social security benifits also and were turned down. They said he couldn't return to his job but he could get something less physical. Like you said, just doing daily things around the house can take to much out of him, and like you he's a very active independent person. There's days he can hardly move or get out of bed. He hasn't needed assistance to walk yet, but there are days he just falls from the weakness in his legs. He has an appointment down at Harborview Medical Center with a neurologist who specializes in RLS, so hopefully he'll be able to help. He has also become very sleep deprived and only gets between 3-4 hours a night and very broken. He twitches violently at times, but there is always some type of movement going on with him. He has it in his arms, legs and back and has now developed new and scary pains in his hands and feet.
I wish you luck on the battle with SSI benifits, because I know first hand how the rejection feels and how misunderstood this illness is to so many people. It's amazing how many people do not know what it is and how it affects the people with it and the family members of the ones with it. I hope you have a good supprot group and a family that helps you out.
I hope to hear more from you. Thanks for your letter on here. By the way my husband will be 39 on Christmas. Happy Holidays
TJ
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Kimberly
Hello TJ
Anonymous wrote:Hi, this is TJ,
I just read the response from Guest and it struck me very close to home.
My husband has had RLS for about 3 1/2 years, but has progressed extremely fast. He has been out of work since 2-04. We have been able to collect std/ltd disability through his work for now. We just applied for social security benifits also and were turned down. They said he couldn't return to his job but he could get something less physical. Like you said, just doing daily things around the house can take to much out of him, and like you he's a very active independent person. There's days he can hardly move or get out of bed. He hasn't needed assistance to walk yet, but there are days he just falls from the weakness in his legs. He has an appointment down at Harborview Medical Center with a neurologist who specializes in RLS, so hopefully he'll be able to help. He has also become very sleep deprived and only gets between 3-4 hours a night and very broken. He twitches violently at times, but there is always some type of movement going on with him. He has it in his arms, legs and back and has now developed new and scary pains in his hands and feet.
I wish you luck on the battle with SSI benifits, because I know first hand how the rejection feels and how misunderstood this illness is to so many people. It's amazing how many people do not know what it is and how it affects the people with it and the family members of the ones with it. I hope you have a good supprot group and a family that helps you out.
I hope to hear more from you. Thanks for your letter on here. By the way my husband will be 39 on Christmas. Happy Holidays
TJ
Hello TJ
Merry Christmas to you both and a Happy Birthday to your husband!
Until my previous post, I had not posted on this site in years, but I'm glad that you found my post because I remember how comforting it was when I was first diagnosed, to be able to 'talk' to others experiencing the same thing. One of the most helpful things I discovered on this site was the name of a doctor and the postings on medications tried by others. Fortunately, my doctor (who also has mild RLS) is willing to experiment with different medications, listened to me when I told him that I had read about combining both neurontin and mirapex. Up until then, I had tried one or the other, or, in the past, many different meds, one at a time. The combination of 900mg neurontin and .25 mg of mirapex at 5pm, repeated at 7pm allowed me to fall asleep by 11:00pm and awake by 5am. I did have to deal with torturous movement from 7 until about 10:30, but the six hours of sleep was refreshing and enough to be able to work. Unfortunately, 2 years later, this combination is no longer working. But that combination is what worked for me.
Your husband is very fortunate that his company has been willing to provide short-term/long-term disability! That's wonderful news....but don't take personally the first rejection from SSI/SSD. Chances are you'll be rejected yet again. In my first attempt in 1999, I gave up after the first rejection. But I have learned from many people that it is almost impossible (here in Ohio) to win your claim without an attorney and so I hired one right off the bat this time. After a full year, I have been rejected twice and am now waiting for a hearing date before a judge. I understand it could take another year to a year and a half....wrote my State Representative to ask for him to 'follow' my file, hoping it will help, which I've heard, it will. Sometime I will gather my paperwork and post the response I received from SSI. Most of their reasons for denial are simply 'generic' and recycled excuses and, in my case, quite funny, since I doubt the type of job exists that they described me qualified for!
Long term sleep depravation can cause serious problems. The problems your husband is experiencing with pain is very familiar to me. Sharp shooting pains, are a result, for me, of fibromyalgia. Many RLS/PLMD sufferers have fibromyalgia. A trip to a neurologist or rheumatoligist can confirm and usually an antidepressant is prescribed. Unfortunately, antidepressants can and always have, for me, aggrivated the RLS/PLMD. Water therapy or relaxing in a hot tub are very beneficial. I will also tell you that a diagnosis of Fibromyalgia may be helpful to your SSI/SSD claim. It is my understanding that Fibromyalgia and Depression claims are usually recognized as 'disabling' while RLS/PLMD are not.
I am glad to know that you are so supportive of your husband! I know how difficult it can be for family to understand a condition like this. My sons are just starting to understand, and they are in their 20's. Of course, part of it could be that they don't want to 'believe' that I am so ill. My son once purchased a very expensive 'all natural' health drink and begged me to try it for a week. He was certain it would cure me. By the second day I could hardly leave the bathroom! His health drink, in a designer bottle, turned out to be something that would simply 'clean' me out! lol! I had to lovingly convince my son that this was only making me weaker, but that I appreciated him so much for trying to help. I am fortunate to that I have sons who are willing to support me for the time being, since I have no income. Fortunate, but depressing to have to rely on them to do so. Frankly, all of it is depressing! Especially having to apply for medicaid, food card, housing assistance, etc. The paperwork is overwhelming, especially when sleep deprived. Anyway, it is very difficult to 'let go' of wanting to be independent when you need to rely more and more on others. I have chosen to to remain as independent as I can in whatever way I can, but I'm stubborn that way! I'll at least try to accomplish something on my own, but if I can't, I've learned to ask for help and hope that I'm not too much of a burden on others.
TJ, I hope you have success with your doctor! I'll check back on the site to see how you all are doing. Let me know!
Kimberly
Welcome to this discussion forum Williamstr!
You posted:
We have had a few posts that indicate that secondary RLS (as opposed to familial) can probably caused by continued stress. I am toying with the thought (and will be researching it with one guinea pig = me), that continued stress (increased stress hormones and lowered serotonin levels) will eventually lower dopamine levels as well and voila'! RLS raises is ugly head. In a large percentage of RLS patients (80-85%) RLS symptoms will be accompanied the nighttime arousals caused by the Periodic Leg Movement Disorder. Those can be accurately diagnosed and its severity determined by a polysomnographic study in a sleep lab.
Now I need to find a doctor that would write a script to determine my stress hormone levels. I know that my daughter who suffers from severe fibromyalgia, and her stress hormones are high.
As to your last question, Oh, yes brother it can get worse! It pobably will get worse faster as you treat it pharmacologically. This is a phenomenon called augmentation. Especially dopamine agonist precursors are notable for that.
The thought even occured to me that as depression can cause the lowering of serotonin levels (not only in the brain but in the central nervous system and practically in the whole body as well) stress or the resulting depression could easily cause the level of dopamine to diminish and then we have RLS.
We had one poster who bought a memory foam mattress and his wife left him removing a major stress source from his life. His RLS symptoms diminished completely. Since I am also using a foam mattress, I suspect that it was the second event of his life that "cured" his affliction.
Again, welcome among us William!
4. I believe I had gone through a period (2-3 years) of relative low RLS problems but started again recently: it is possible that such condition is also related to stress?
5. Is it possible that it can get worse?
We have had a few posts that indicate that secondary RLS (as opposed to familial) can probably caused by continued stress. I am toying with the thought (and will be researching it with one guinea pig = me), that continued stress (increased stress hormones and lowered serotonin levels) will eventually lower dopamine levels as well and voila'! RLS raises is ugly head. In a large percentage of RLS patients (80-85%) RLS symptoms will be accompanied the nighttime arousals caused by the Periodic Leg Movement Disorder. Those can be accurately diagnosed and its severity determined by a polysomnographic study in a sleep lab.
Now I need to find a doctor that would write a script to determine my stress hormone levels. I know that my daughter who suffers from severe fibromyalgia, and her stress hormones are high.
As to your last question, Oh, yes brother it can get worse! It pobably will get worse faster as you treat it pharmacologically. This is a phenomenon called augmentation. Especially dopamine agonist precursors are notable for that.
The thought even occured to me that as depression can cause the lowering of serotonin levels (not only in the brain but in the central nervous system and practically in the whole body as well) stress or the resulting depression could easily cause the level of dopamine to diminish and then we have RLS.
We had one poster who bought a memory foam mattress and his wife left him removing a major stress source from his life. His RLS symptoms diminished completely. Since I am also using a foam mattress, I suspect that it was the second event of his life that "cured" his affliction.
Again, welcome among us William!
Jumpy Owl
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guest TJ
sleep, day energy level, ability to focus, work productivity
Hi Kimberly,
This is TJ. I've been very busy over the last few weeks that I was just able to get on the computer and saw your reply. We got a computer for christmas so I'll have easier access to the board soon.
I went to the Doctor today for myself to talk to him about my husband and how I've been feeling. It did me alot of good. From what I got from the doctor today he wants to get Tim (my husband) back to work soon. He also sees a physcologist and she agrees with the doctor about that. We believe that he also has fibromyalgia, thats what all the new pain in his hands and feet are. The doctor thinks I have caretaker burnout. I just get mad at Tim for no apparent reason sometimes and I blow up at him. He takes it pretty good, lets me have my fit and doesn't try to fight back. Which is good. Then I'm usually apologizing for getting mad at him.
The doctor said I get like that because I want my husband back. I'm not exactly sure about that, but it has some possible truths. He's just alot weaker than he use to be and there's days I want to do things and he's just not up to it. But he always pushes his limits to the point of exhaustion. When I tell him to slow down and take it easy he never listens then pays the price for it later. Very stubborn man!
We went to Haborview in Seattle on Wednesday and did his sleep study.
We won't get any results for a week to two, so I'll let you know about that when I know. I don't know what we will do about SSI for now since the doctors want him back to work to help him with everything he's feeling. I'll wait and see what the neurologist says about the sleep study and go from there for now. Thanks for the tips on what proccess to procede with.
It sounds like your sons have become very helpful to you. Don't feel bad about using the assistance given you, thats what it's there for. I work in a grocery store and I would rather see someone like you getting the help you need than some of the people I see using it. I've been checking for 17years, and I've known people on it that long, and believe me I know it's not for medical reasons. I'm not judgemental either, but I have seen the abuse of the system and it ends up hurting people like you and me. I had some work problems last May/June and used food and medical. We are still on medical but do not qualify for food, so I know exactly how you feel. We almost lost our house because of his medical and we are holding on, living day by day. My mother has helped us out considerably so our kids eat well and can do sports. It's very hard for me at times to allow my mom to pay for so much. Our oldest daughter is in to gymnastics and is very good at it. She's a level 7. She has the ability to try for the olympics, but that costs alot. (Good old mom/grandma) I agree all of this can be very depressing, but hang in there.
Just out of couriosity, what part of Ohio are you from? I was born in Euclid and lived in Cleveland Hts. We moved to Washington when I was 11years but we still have relatives there. Take care and hopefully I will here from you soon. Sorry it took so long to respond. I really like hearing from people, especially ones who understand so well. Thanks for the ear, I really appreciate it. Hope you have a very happy New Year.
TJ
p.s. I never stay logged in, so I always appear as a guest.
This is TJ. I've been very busy over the last few weeks that I was just able to get on the computer and saw your reply. We got a computer for christmas so I'll have easier access to the board soon.
I went to the Doctor today for myself to talk to him about my husband and how I've been feeling. It did me alot of good. From what I got from the doctor today he wants to get Tim (my husband) back to work soon. He also sees a physcologist and she agrees with the doctor about that. We believe that he also has fibromyalgia, thats what all the new pain in his hands and feet are. The doctor thinks I have caretaker burnout. I just get mad at Tim for no apparent reason sometimes and I blow up at him. He takes it pretty good, lets me have my fit and doesn't try to fight back. Which is good. Then I'm usually apologizing for getting mad at him.
The doctor said I get like that because I want my husband back. I'm not exactly sure about that, but it has some possible truths. He's just alot weaker than he use to be and there's days I want to do things and he's just not up to it. But he always pushes his limits to the point of exhaustion. When I tell him to slow down and take it easy he never listens then pays the price for it later. Very stubborn man!
We went to Haborview in Seattle on Wednesday and did his sleep study.
We won't get any results for a week to two, so I'll let you know about that when I know. I don't know what we will do about SSI for now since the doctors want him back to work to help him with everything he's feeling. I'll wait and see what the neurologist says about the sleep study and go from there for now. Thanks for the tips on what proccess to procede with.
It sounds like your sons have become very helpful to you. Don't feel bad about using the assistance given you, thats what it's there for. I work in a grocery store and I would rather see someone like you getting the help you need than some of the people I see using it. I've been checking for 17years, and I've known people on it that long, and believe me I know it's not for medical reasons. I'm not judgemental either, but I have seen the abuse of the system and it ends up hurting people like you and me. I had some work problems last May/June and used food and medical. We are still on medical but do not qualify for food, so I know exactly how you feel. We almost lost our house because of his medical and we are holding on, living day by day. My mother has helped us out considerably so our kids eat well and can do sports. It's very hard for me at times to allow my mom to pay for so much. Our oldest daughter is in to gymnastics and is very good at it. She's a level 7. She has the ability to try for the olympics, but that costs alot. (Good old mom/grandma) I agree all of this can be very depressing, but hang in there.
Just out of couriosity, what part of Ohio are you from? I was born in Euclid and lived in Cleveland Hts. We moved to Washington when I was 11years but we still have relatives there. Take care and hopefully I will here from you soon. Sorry it took so long to respond. I really like hearing from people, especially ones who understand so well. Thanks for the ear, I really appreciate it. Hope you have a very happy New Year.
TJ
p.s. I never stay logged in, so I always appear as a guest.
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Kimberly
Re: sleep, day energy level, ability to focus, work producti
guest TJ wrote:Hi Kimberly,
From what I got from the doctor today he wants to get Tim (my husband) back to work soon. He also sees a physcologist and she agrees with the doctor about that. We believe that he also has fibromyalgia, thats what all the new pain in his hands and feet are.
The doctor thinks I have caretaker burnout. I just get mad at Tim for no apparent reason sometimes and I blow up at him. He takes it pretty good, lets me have my fit and doesn't try to fight back. Which is good. Then I'm usually apologizing for getting mad at him.
The doctor said I get like that because I want my husband back. I'm not exactly sure about that, but it has some possible truths. He's just alot weaker than he use to be and there's days I want to do things and he's just not up to it. But he always pushes his limits to the point of exhaustion. When I tell him to slow down and take it easy he never listens then pays the price for it later. Very stubborn man!
Just out of couriosity, what part of Ohio are you from? I was born in Euclid and lived in Cleveland Hts. We moved to Washington when I was 11years but we still have relatives there. Take care and hopefully I will here from you soon. Sorry it took so long to respond. I really like hearing from people, especially ones who understand so well. Thanks for the ear, I really appreciate it. Hope you have a very happy New Year.
TJ
p.s. I never stay logged in, so I always appear as a guest.
Hi TJ,
I've been away for awhile and just found your post! I can relate only a little to the caretaker burnout problem, I experienced it when my mother had cancer and then passed away. That was just three short months, and since Tim's condition is life-long, it will be something you will always have to deal with, which I can only imagine, from a caretaker side of things, will be very difficult. Thankfully you are getting advice from a professional and have the support of your family too. My guess is that they suggest you get regular time (breaks) for yourself and that you get involved in activities you enjoy and that are not caretaker related?
It is interesting that you mentioned that the doctors would like to see Tim return to work. I've just dealt with the same advice that was given to me by a new 'family' physician. It is not exactly the same situation as what you're dealing with, but let me tell you what happened. At my first visit with her, I explained that I was being treated for RLS/PLMD/Fibromyalgia. She advised that this condition was beyond the scope of her practice and that she would be unable to 'treat' the condition. I hadn't asked her to treat the condition, I already have a doctor doing that, but just wanted her to be aware of my condition, symptoms, and how they affected my daily living, in case I needed to see her for a cold/flu, she would be aware of what's 'normal' and not 'normal' for me. Unfortunately, she was disinterested in understanding how the condition affected me on a daily basis and in an appointment at a later date, noticing I was somewhat depressed, she suggested that 'the best thing for me' would be to return to work! Had she previously been willing to listen, she would know and understand that the physical symptoms absolutely prevent my returning to work and why. Now, if she put her 'suggestion' to me in my medical records, she may very well have jeopardized my SSD claim and I am furious about it. Of course the best thing would be for me to be able to return to work, I would love to be physically able to do so! But she was wrong to make the suggestion when she had no knowledge of how my condition affects my day to day living and her doing so only increased the feeling of 'worthlessness' I have about not being able to work. I am sharing this with you because I thought it might be helpful in knowing the affect your doctor's suggestion MAY have on Tim and if it was suggested, how did he react? Was it the same way I did?
I had to smile when you said Tim pushes himself to the limit and then pays the price for it later. I think alot of us do that. It seems that our 'mind' just has not caught up with our 'body'. Just yesterday, I decided that I would paint the trim in my living room. Heck, I've hung wall paper, mitered trim, refinished hardwood floors, etc. (in the past). By the time I got all the supplies out and got started, I was exhausted. I found that the repetitive movement, back and forth, of the paintbrush caused severe pain in my hand and arm, and needless to say, I didn't get much done. Last night my hand, arm and sholder were hurting horribly, I was exhausted, and then dealing with the nightime RLS/PLMD symptoms was unbearable. I am so angry at my limitations! But give me a few days and I'll be trying again! I don't know why I do this, other than to say that my mind refuses to accept that my body won't function as it use to. Perhaps there will come a day when I give up and attempt nothing, but I hope not.
What a coincidence....I grew up in Wickliffe (class of '75), but moved to Euclid soon after I got married, in a house off of LakeShore Blvd. I lived there from 78 until 2003. Now I live in a suburb of Toledo. Small world, huh?
Take care and l hope ya'll are doing ok!
Kimberly
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TJ guest
sleep, day energy level,ability to focus, work productivity
Hi Kimberly, This is TJ
I just found your reply, thanks. Since I last wrote Tim has had two sleep studies at Harborview Medical Center in Seattle. The first one was to determine what was wrong. We found out he has severe sleep apnea and PLMD. The second visit was to see how he slept with a CPAP machine. We picked up the machine today to start trying it at home. We still have to go back to Harborview to see the Neurologist for the final info appointment, but he's sent the reports to our Doctor and Tim saw him last week so we found out some of the info. They also said he has a low ferritin level and want him on 325mg iron twice a day for three months. I don't really know what the ferritin level is or does, do you? I've looked it up but still not sure about it.
It's amazing how much you and Tim sound alike in not wanting to be defeated by these syndromes. On an average it takes him 2-4 hours just to feel like moving when he gets out of bed waiting for the medicine to help his symtoms. Talking with his Physcologist last week, she told him that he's probably always had the fibromyalgia and it's only now showing it's ugly stage of the pain it can cause. And because of these terrible syndromes it has caused depression and anxiety, along with two titles the physcologists call somatoform disorder and adjustment disorder.
We applied for SSD back in August and were denied in only 5 weeks. They basically said that he can no longer do the job he use to, but he can follow simple direction and do light work so he didn't meet there classifications of disabled, but if things changed to re-apply. We only put RLS, the two disorders anxiety, and depression, so now with all the new stuff, maybe we will try again later.
I feel the Doctor told me he wants him back to because Tim has told him he's always worked since he was 14yrs old. So the Doctor feels like he needs to be the bread winner in the family and supporting us instead of me doing it. He doesn't feel that way, but he also never wanted the Doctor to think he was lazy and didn't want to work. He'd love to be able to work again, but like you doesn't feel he's physically able to get up and go anymore. The Doctor has only told me he'd like to see Tim back to work, but hasn't discussed it with him. So we'll see what happens down the road. For now they want to see if the CPAP machine will help him get more rest, cause as of right now he never gets a good nights sleep. He never even gets to the restful part of sleep. The sleep study says he flops around all night and is never still.
Good luck with your SSD claim I hope you succeed with it. Keep me informed on how it goes and thanks for keeping in touch with me.
My mom grew up in Wickliffe and my grandparents lived on Robert St. I spent alot of time there with them. We moved my grandpa out here with us in 2000 and he passed in 2001. Both my grandparents are buried at Western Reserves Memorial Gardens in Chesterland. My other grandparents lived 5 minutes from them in Willoughby and now they are both out here living by us. Tim is (class of 84) native washington and I'm (class of 85)
Take care and keep in touch.
TJ
I just found your reply, thanks. Since I last wrote Tim has had two sleep studies at Harborview Medical Center in Seattle. The first one was to determine what was wrong. We found out he has severe sleep apnea and PLMD. The second visit was to see how he slept with a CPAP machine. We picked up the machine today to start trying it at home. We still have to go back to Harborview to see the Neurologist for the final info appointment, but he's sent the reports to our Doctor and Tim saw him last week so we found out some of the info. They also said he has a low ferritin level and want him on 325mg iron twice a day for three months. I don't really know what the ferritin level is or does, do you? I've looked it up but still not sure about it.
It's amazing how much you and Tim sound alike in not wanting to be defeated by these syndromes. On an average it takes him 2-4 hours just to feel like moving when he gets out of bed waiting for the medicine to help his symtoms. Talking with his Physcologist last week, she told him that he's probably always had the fibromyalgia and it's only now showing it's ugly stage of the pain it can cause. And because of these terrible syndromes it has caused depression and anxiety, along with two titles the physcologists call somatoform disorder and adjustment disorder.
We applied for SSD back in August and were denied in only 5 weeks. They basically said that he can no longer do the job he use to, but he can follow simple direction and do light work so he didn't meet there classifications of disabled, but if things changed to re-apply. We only put RLS, the two disorders anxiety, and depression, so now with all the new stuff, maybe we will try again later.
I feel the Doctor told me he wants him back to because Tim has told him he's always worked since he was 14yrs old. So the Doctor feels like he needs to be the bread winner in the family and supporting us instead of me doing it. He doesn't feel that way, but he also never wanted the Doctor to think he was lazy and didn't want to work. He'd love to be able to work again, but like you doesn't feel he's physically able to get up and go anymore. The Doctor has only told me he'd like to see Tim back to work, but hasn't discussed it with him. So we'll see what happens down the road. For now they want to see if the CPAP machine will help him get more rest, cause as of right now he never gets a good nights sleep. He never even gets to the restful part of sleep. The sleep study says he flops around all night and is never still.
Good luck with your SSD claim I hope you succeed with it. Keep me informed on how it goes and thanks for keeping in touch with me.
My mom grew up in Wickliffe and my grandparents lived on Robert St. I spent alot of time there with them. We moved my grandpa out here with us in 2000 and he passed in 2001. Both my grandparents are buried at Western Reserves Memorial Gardens in Chesterland. My other grandparents lived 5 minutes from them in Willoughby and now they are both out here living by us. Tim is (class of 84) native washington and I'm (class of 85)
Take care and keep in touch.
TJ
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Guest
Re: sleep, day energy level,ability to focus, work productiv
TJ guest wrote:Hi Kimberly, This is TJ
I just found your reply, thanks. Since I last wrote Tim has had two sleep studies at Harborview Medical Center in Seattle. The first one was to determine what was wrong. We found out he has severe sleep apnea and PLMD. The second visit was to see how he slept with a CPAP machine. We picked up the machine today to start trying it at home. We still have to go back to Harborview to see the Neurologist for the final info appointment, but he's sent the reports to our Doctor and Tim saw him last week so we found out some of the info. They also said he has a low ferritin level and want him on 325mg iron twice a day for three months. I don't really know what the ferritin level is or does, do you? I've looked it up but still not sure about it.
It's amazing how much you and Tim sound alike in not wanting to be defeated by these syndromes. On an average it takes him 2-4 hours just to feel like moving when he gets out of bed waiting for the medicine to help his symtoms. Talking with his Physcologist last week, she told him that he's probably always had the fibromyalgia and it's only now showing it's ugly stage of the pain it can cause. And because of these terrible syndromes it has caused depression and anxiety, along with two titles the physcologists call somatoform disorder and adjustment disorder.
We applied for SSD back in August and were denied in only 5 weeks. They basically said that he can no longer do the job he use to, but he can follow simple direction and do light work so he didn't meet there classifications of disabled, but if things changed to re-apply. We only put RLS, the two disorders anxiety, and depression, so now with all the new stuff, maybe we will try again later.
I feel the Doctor told me he wants him back to because Tim has told him he's always worked since he was 14yrs old. So the Doctor feels like he needs to be the bread winner in the family and supporting us instead of me doing it. He doesn't feel that way, but he also never wanted the Doctor to think he was lazy and didn't want to work. He'd love to be able to work again, but like you doesn't feel he's physically able to get up and go anymore. The Doctor has only told me he'd like to see Tim back to work, but hasn't discussed it with him. So we'll see what happens down the road. For now they want to see if the CPAP machine will help him get more rest, cause as of right now he never gets a good nights sleep. He never even gets to the restful part of sleep. The sleep study says he flops around all night and is never still.
Good luck with your SSD claim I hope you succeed with it. Keep me informed on how it goes and thanks for keeping in touch with me.
My mom grew up in Wickliffe and my grandparents lived on Robert St. I spent alot of time there with them. We moved my grandpa out here with us in 2000 and he passed in 2001. Both my grandparents are buried at Western Reserves Memorial Gardens in Chesterland. My other grandparents lived 5 minutes from them in Willoughby and now they are both out here living by us. Tim is (class of 84) native washington and I'm (class of 85)
Take care and keep in touch.
TJ
Hi TJ!
I'm anxious to hear if the CPAP machine is helpful to Tim getting more rest. I've wondered if I have the same problem, but I refuse to put myself through another sleep study, besides, I figure the machine will only help me breath easier while the movement keeps me awake! lol That's the PLMD side of it. I've travelled with my sister and stayed in hotels with her. She has witnessed the fact that I NEVER stop moving. Even when I am finally asleep, the jerking of my arms and legs continues. That's why, when you have fibromyalgia, you wake in such pain!
I don't know too much about how low iron affects RLS/PLMD, but somehow it does. I have heard that iron supplements can help, but I have also read that the way the supplements are absorbed into the system does not always help in raising the ferritin level and it's affect on the brain. I also know that you have to be cautious in using the supplements and buy some prunes! lol...Let me know how the supplements work for Tim.
I'm not surprised that you were denied SSD so quickly because that's how the system works. Everyone, no matter what the illness, is initially denied. In fact, most everyone is denied at least two times. But if you want to try to get SSD, you have to keep filing appeals. If you don't, each time you apply is like starting over! After the first two denials, you are given a hearing date before an administrative law judge which is usually when SSD is granted. The whole process, in Ohio, can take three years! I also do not know of anyone who has been given SSD without the help of an attorney. I was denied in 1999 and was unaware of how the process works. When I filed again in 2003 I hired a lawyer, but they do take a portion of your money when the SSD is finally granted. But, keep in mind, you will be reimbursed in a lump sum payment back to the date the disability is determined to have started.
Isn't it funny that your mom grew up in Wickliffe too! I know exactly where Roberts St. is. I lived up the hill off of Ridge Road near the high school on Nehls Park and then moved further down Ridge to the border of Willoughby on Garden Dr. In fact, my oldest son still lives there with his dad, who also grew up there on GreenRidge. Sulecki/Giancola are our family names. So, lol, it is indeed a 'small world afterall'!
Kimberly
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Barb in Woods
Re: sleep, day energy level,ability to focus, work productiv
I'm not surprised that you were denied SSD so quickly because that's how the system works. Everyone, no matter what the illness, is initially denied. In fact, most everyone is denied at least two times. But if you want to try to get SSD, you have to keep filing appeals. If you don't, each time you apply is like starting over! After the first two denials, you are given a hearing date before an administrative law judge which is usually when SSD is granted. The whole process, in Ohio, can take three years! I also do not know of anyone who has been given SSD without the help of an attorney. I was denied in 1999 and was unaware of how the process works. When I filed again in 2003 I hired a lawyer, but they do take a portion of your money when the SSD is finally granted. But, keep in mind, you will be reimbursed in a lump sum payment back to the date the disability is determined to have started.
Re the SS Disability matter I can attest it takes a LOT of patience, etc. to prevail with them. I applied back in 1999 having been disabled since 1997.
I was turned down repeatedly. My claim was related to chondrocalcinosis, depression (and inablity to focus/concentrate, etc. which I NOW wonder isn't partly from RLS). I had a total of 3 hearings before administrative law judges - the first a woman, who I was before twice. Twice denied.
I finally got an atty and SS automatically the 3rd time remands the case to a different judge. That Judge ruled right on the spot completely in my favor. I burst into tears of relief and gratitude to finally be vindicated because the woman judge's rulings indicated she felt I was faking and that I would be able to do phone solicitation work. In my 60's, having been a realtor most of my adult life until 1997...my inability to focus was so severe I knew I'd not be able to do the job she recommended.
Just barely getting through a day at home retired is a challenge..fatigue is really bad and staying on task is just about impossible.
I was dx'd very recently with RLS..one Dr. thought I might have an iron deficiency..a Vit B deficiency..The most recent PCP nailed it instantly. I'd never heard of it before.
MY symptoms as described to the Dr: "Feels like someone is stabbing my feet with an ice pick." The stabs were never in the same place, just random with no warning. It had been keeping me awake for a very long time. He rx'd Mirapex..I think now I need it increased..it isn't working like it did at first. I find it the next thing to a Miracle frankly.
By the way, after being granted SS Disability finally, last November, I was able to have the first of two knee replacements--both knees totally shot due to chondrocalcinosis (a familial disease). My knees started downhill at age 14 with crunching..I thought everyone's did that. DUH.
I was bone on bone for many years, and needed surgery for years. I suffered for years thanks to being turned down so often with SS. It took well over 5 years to prevail, and those years of pain would not have been, had I been granted it and had knee replacements earlier.
BarbinWoods
Re the SS Disability matter I can attest it takes a LOT of patience, etc. to prevail with them. I applied back in 1999 having been disabled since 1997.
I was turned down repeatedly. My claim was related to chondrocalcinosis, depression (and inablity to focus/concentrate, etc. which I NOW wonder isn't partly from RLS). I had a total of 3 hearings before administrative law judges - the first a woman, who I was before twice. Twice denied.
I finally got an atty and SS automatically the 3rd time remands the case to a different judge. That Judge ruled right on the spot completely in my favor. I burst into tears of relief and gratitude to finally be vindicated because the woman judge's rulings indicated she felt I was faking and that I would be able to do phone solicitation work. In my 60's, having been a realtor most of my adult life until 1997...my inability to focus was so severe I knew I'd not be able to do the job she recommended.
Just barely getting through a day at home retired is a challenge..fatigue is really bad and staying on task is just about impossible.
I was dx'd very recently with RLS..one Dr. thought I might have an iron deficiency..a Vit B deficiency..The most recent PCP nailed it instantly. I'd never heard of it before.
MY symptoms as described to the Dr: "Feels like someone is stabbing my feet with an ice pick." The stabs were never in the same place, just random with no warning. It had been keeping me awake for a very long time. He rx'd Mirapex..I think now I need it increased..it isn't working like it did at first. I find it the next thing to a Miracle frankly.
By the way, after being granted SS Disability finally, last November, I was able to have the first of two knee replacements--both knees totally shot due to chondrocalcinosis (a familial disease). My knees started downhill at age 14 with crunching..I thought everyone's did that. DUH.
I was bone on bone for many years, and needed surgery for years. I suffered for years thanks to being turned down so often with SS. It took well over 5 years to prevail, and those years of pain would not have been, had I been granted it and had knee replacements earlier.
BarbinWoods
Hi, Barb in Woods (love your screen name, by the way! 
)--
What a story! So glad that you have had the victories you have (FINALLY) and that there is hope for relief for you knees at least. Funny.... I bet that some of the judges think that when they grant disability, you just go home and live happily ever after. WE know better!!!!
Hang in there!
Sara
)--
What a story! So glad that you have had the victories you have (FINALLY) and that there is hope for relief for you knees at least. Funny.... I bet that some of the judges think that when they grant disability, you just go home and live happily ever after. WE know better!!!!
Hang in there!
Sara
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Guest TJ
sleep, day energy level, ability to focus, work productivity
Hi Kimberly, this is TJ,
I've been away from the computer for a while and just saw your post. Sorry it's taken me so long to respond. Tim has had a real hard time trying to use the CPAP machine. He's very claustrophobic and has had a hard time putting on the mask. It also makes him sweat alot around the mask, so once he's able to get past all of this I'll let you know if his sleep has improved. Right now I have a hard time getting him to even go to bed. He's been staying up until 3-5 in the morning before making his way there. It's driving me crazy because I try to stay up with him and I shouldn't be doing that. It's taking it's toll on me. He's also been experiencing migraines again. It seems they come and go in spurts. We have an appointment on the 23rd to see the neourologist and go over all the sleep study stuff and blood work, so we'll have a better idea what exactly he's expecting from all the stuff he's been having us do.
I have to pick my daughter up in a few minutes, but I wanted to respond to you real quick just so you didn't think I stopped writing. Thanks for keeping in touch with me, it real helps me deal with Tim and help him when I can communicate with someone who seems just like him in all the symptoms.
I talked to my mom and she knows exactly where you were. She's (class of 64) so is my dad. They graduated together. Her youngest brother was (class of 72) My uncle still lives in the area and works at Petti's Pizza on Euclid Avenue. He's worked there over 30 years. There last name was Kubisch/Garmback(my dads) Maybe you knew of my uncle.
Thanks for everything and keep in touch
TJ
I've been away from the computer for a while and just saw your post. Sorry it's taken me so long to respond. Tim has had a real hard time trying to use the CPAP machine. He's very claustrophobic and has had a hard time putting on the mask. It also makes him sweat alot around the mask, so once he's able to get past all of this I'll let you know if his sleep has improved. Right now I have a hard time getting him to even go to bed. He's been staying up until 3-5 in the morning before making his way there. It's driving me crazy because I try to stay up with him and I shouldn't be doing that. It's taking it's toll on me. He's also been experiencing migraines again. It seems they come and go in spurts. We have an appointment on the 23rd to see the neourologist and go over all the sleep study stuff and blood work, so we'll have a better idea what exactly he's expecting from all the stuff he's been having us do.
I have to pick my daughter up in a few minutes, but I wanted to respond to you real quick just so you didn't think I stopped writing. Thanks for keeping in touch with me, it real helps me deal with Tim and help him when I can communicate with someone who seems just like him in all the symptoms.
I talked to my mom and she knows exactly where you were. She's (class of 64) so is my dad. They graduated together. Her youngest brother was (class of 72) My uncle still lives in the area and works at Petti's Pizza on Euclid Avenue. He's worked there over 30 years. There last name was Kubisch/Garmback(my dads) Maybe you knew of my uncle.
Thanks for everything and keep in touch
TJ