How do you hold down a job?

[Taco Bill]

I haven't worked in over a year. It's killing me mentally. My work was one of the only things that kept me grounded and provided me with much needed structure and social interaction, not to mention money. My biggest fear has come to pass which is not being able to support myself. I can't pull my own weight. I am one step from living in my car. Suicide is on my mind constantly. Even though I am beyond exhausted and even when my legs are under control, the intense anxiety prevents me from sleeping. Most nights are all nighters. I try to get sleep during the day but my anxiety combined with feelings of guilt and shame over not working flood my brain and send me into a panic. I am really hard on myself. I live in a place with 3 other people. Every single day I see them go to sleep and wake up and go to work, while I sit rotting in despair. I feel like a total loser and a waste of a human being. I have an appointment with Dr. B in a little over a week. I am 46 and have no support at all. I am no longer useful and maybe I should just go off by myself and die. Never married, no kids, toxic family of origin. The loneliness is painful.

I am wondering if anyone else has had their work live destroyed.

[Rustsmith]

Taco Bill, many of us have been where you are and have gotten through it. But it sounds like you need far more help than we can provide through this forum. Please go to the nearest ER and tell them your situation. They can provide you with help for your mood and also connect you with the appropriate local services for whatever other assistance you need.

[ViewsAskew]

Besides Dr. B, do you have anyone to support your mental and physical health? I remember a bit of your story, Taco Bill, and you have worked so hard only to be in this position. You need more people to help. I realize how hard that is.

[legsbestill]

Please cut yourself some slack. It is clear from your post that you would work if you possibly could. I too wonder constantly how people with rls manage a normal working life. My decisions regarding my career are blighted by it.

I thoroughly agree with Steve, you need - and deserve - extra help at the moment. It is very hard to take the steps to seek this when you are exhausted but your life sounds too difficult to cope with on your own.

[badnights]

Taco Bill - It's impossible to imagine now, but you have to believe me that this will end, and things will be better. I remember when I first came on this board, I could not see how anything was ever going to get better. Someone told me "suicide is a permanent end to a temporary problem". Turned out she was right, the problems that seemed insurmountable weren't - I just wasn't capable of imagining then how the problems would go sideways and stop being problems.

I lost so much that made myself me that I no longer knew who I was. My career was destroyed & my social life ruined, though I've hung on to my job (sort of). It helped to talk things out here. Remarkably, despite the ups and downs, I am now glad that I'm alive. I hate what I've been through - and some of what I'm going thru - but the ride is worth it. Honestly, I don't know exactly how I pulled through - but you're going to too. You're clearly tough enough.

One of the hardest things is to accept that we're less than we were. We're not actually less, we're just different, but it sure seems like less, and the challenge is to accept it. And as legsbestill said, cut yourself some slack. You're doing remarkably well considering that you haven't had a full night of sleep in forever. Be proud of yourself for what you're doing - living as a decent human being in the face of terrible odds. Acknowledge that even something as small as reading posts here is a valuable form of self-care; making that appt with Dr B even more so. You're on track to fix things.

You have more than one problem to deal with; it will help to sort that out in your mind. You know that there are treatments that will make your life better (like opioids for the WED/RLS); so now you need to believe that (even if it seems impossible now) you will find a way to get the treatment you need. We will help however we can, but most of the steps will be yours. Have you seen Dr B yet? What did he say?

Do you have access to any cash, so you can buy some kratom? That might give you enough sleep to hang in there. It's devastatingly hard to hang in there on no sleep.

No matter what, no matter when, remember there's people here who know how valuable you are, even if you can't see it right now. {{{Taco Bill}}} (those are hugs)

[KDecker1612]

I opted to work from home. I am a employee though I do not have benefits. I can work a maximum of 29 hours but I decide when those hours will be. That flexibility is very helpful. I'm poor but at least I am able to keep working. Some weeks it's hard to even get close to 29 hours but usually I get in at least 20 to 25. Look online, there are lots of sites now that advertise work from home options. Hang in there, you're not alone!

[Bridgercan]

Hey Taco Bill- it’s been a month since you posted; wondering how you are doing? You mentioned having an appointment with Dr B-how did it go?!?

Thank you for sharing. A lot of what you wrote resonated with me: the exhaustion, loneliness, feelings of worthlessness and shame, suicide ideation—these are all things many of us RLS/WED folk suffer, and ones I struggle with often! There’s a community here, and granted it’s virtual and not necessarily in real time, but I get inspiration and some emotional relief reading others’ experiences, struggles, and successes, whether large or small.

I think it especially hard for us men with RLS to maintain our self-worth in a culture that values a man for what he does versus who he is. My hardest RLS struggles have not been the physical ones, like augmentation, but coming to terms with what I’ve had to give up because of cognitive and physical decline. Being in my mid-fifties, giving up professional goals, forced by exhaustion to set my sights so much lower, and barely able to work a part-time mac-job—all this has left me frustrated, angry, and often I grieve for the man I no longer am. It beats up my self-esteem. It’s the mental and emotional challenges as a result of this disease that suck what little energy I have just to get out of bed and make something of the day, even if it’s just getting the dishes done!

Mainly, because what you shared, I feel much care and concern for you. Yes, I have to agree, you are being hard on yourself. From one guy who often has one mean, determined monkey on his back to another: it’s ok to be who you are in this very moment. The truth is, it’s only you whom you can count on right now, so be a friend, a good friend, to yourself. You’re not alone, and while hopelessness, shame, and guilt may prevent you from seeing it, there’s a way to a better day. I survived my suicide attempt, so I know there is—hang in there!!

[ViewsAskew]

Hey Taco Bill- it’s been a month since you posted; wondering how you are doing? You mentioned having an appointment with Dr B-how did it go?!?

Thank you for sharing. A lot of what you wrote resonated with me: the exhaustion, loneliness, feelings of worthlessness and shame, suicide ideation—these are all things many of us RLS/WED folk suffer, and ones I struggle with often! There’s a community here, and granted it’s virtual and not necessarily in real time, but I get inspiration and some emotional relief reading others’ experiences, struggles, and successes, whether large or small.

I think it especially hard for us men with RLS to maintain our self-worth in a culture that values a man for what he does versus who he is. My hardest RLS struggles have not been the physical ones, like augmentation, but coming to terms with what I’ve had to give up because of cognitive and physical decline. Being in my mid-fifties, giving up professional goals, forced by exhaustion to set my sights so much lower, and barely able to work a part-time mac-job—all this has left me frustrated, angry, and often I grieve for the man I no longer am. It beats up my self-esteem. It’s the mental and emotional challenges as a result of this disease that suck what little energy I have just to get out of bed and make something of the day, even if it’s just getting the dishes done!

Mainly, because what you shared, I feel much care and concern for you. Yes, I have to agree, you are being hard on yourself. From one guy who often has one mean, determined monkey on his back to another: it’s ok to be who you are in this very moment. The truth is, it’s only you whom you can count on right now, so be a friend, a good friend, to yourself. You’re not alone, and while hopelessness, shame, and guilt may prevent you from seeing it, there’s a way to a better day. I survived my suicide attempt, so I know there is—hang in there!!

Such a thoughtful, wonderful, awesome, authentic post. Thanks, Bridgercan.

I have no idea what stress comes from being the male in this culture - I have been SO hard on myself - so glad I didn't feel the pressure of the cultural requirement I be "the" provider".

You could have been writing about me regarding the difficulty of the struggles from how I internalized the loss of my profession.

So grateful for this place, this space, the people here. Tis truly special.

[Bridgercan]

You’re welcome, Views. And thank you for the time, effort, and care you give to the forum as moderator! I’ve gain much insight and have regularly been moved by your posts. I am grateful to you and to all who participate here. This community has helped me understand and come to terms with a very baffling, frustrating diagnosis and disease progression. I strongly doubt I’d be as healthy physically, mentally, and emotionally if I’d not found this place and the RLS Foundation. You’re right: ‘tis truly special.

[Taco Bill]

Thank you everyone for your kind words. I saw Dr.B last month and have another appointment a week from today. He switched me from Tramadol to methadone. The Tramadol was definitely causing augmentation. The methadone worked well for sleep but left me beyond exhausted the next day. I talked to him over the phone about it and he switched me to oxymorphone. Same result. I've been reading about how opiates interfere with sleep. I can barely function. I am experiencing horrible brain fog in addition to the severe fatigue. Even writing this message is a major challenge. I feel like I am going to fall asleep after writing each sentence. It's around 10:30am and I can feel my legs starting to act up. I feel so damn groggy can't sleep during the day because of massive anxiety.

I am terrified right now. I am in a huge pit of a despair. My chest feels like it's going to explode. My biggest fear is now a reality which is not being able to work and support myself. I have no safety net. My family is hostile. There is zero security with my living situation. The dogs I take care of are the closest thing to a family I have. Sometimes I can barely stand up. Have you ever been too exhausted to get up and make yourself a meal? I have struggled with severe depression and anxiety even before the RLS. I am existing, not living. What's hard for me to accept is the fact that I have to take strong painkillers to get any sleep at all, even a nap, and that it will be like this for the rest of my life. I am trying to be hopeful but it's really hard to see any kind of future. Isolation and loneliness are constant companions. I don't see how I can live the rest of my life like this.

Any tips on how to combat opiate related fatigue? Hopefully Dr. B will have some alternatives. I've never been in such a dark place before in my life. Thank again for your words of encouragement.

[ViewsAskew]

Hi Taco Bill - a couple of thoughts.

Are you sure this is the right dose? I found it hard to get to that. It is easier now, not sure why. Can you try cutting back a 1/2 tab?

What time of day are you taking it? I spent years working that out. For me, the best time for methadone is 5-7 hours before I want to go to sleep. It initially alerts me slightly (but that interferes with sleep), and then eventually makes me sleepy. I usually sleep 6 to 8 hours these days. BUT, I also take other things, so I have NO idea what would happen if I were taking it alone.

Are you having symptoms all the time? Over the years, my symptoms have subsided - now they are only about 12 hours a day instead of ALL the time, as they were when I augmented. When I was augmented, I had to divide my doses. I tried LOTS of things - for quite awhile I took it in smaller doses 3 or 4 times in a 6-8 hour period.

When I was augmented, I honestly was sure my life had ended. In the next few while, I existed. It was only over time that it improved. It DID take time. I am, in many ways, in better shape now than I have been in 15 years. I take an antidepressant, I have experimented with gabapentin, multiple opioids, going back to DAs, kratom, adding clonidine, trying medical marijuana, and many other things. I found out I was so low on vitamin D that it was creating bone pain - getting it up helped me in many ways. I have had multiple iron infusions. I had to move several thousand miles to be in a place I could get treatment. It seems it is always something. It has been a slog.

I wish I could say I had a magic something - wand, pill, clap of the hands. I don't. But, I am better. Slowly, surely. Even when I didn't see it.

One of the things I have always had is this board. I come here every day whether I want to or not. Being here for others helps me. Seeing how others help each other keeps me grounded. I find my heart here almost every time. I imagine coming here doesn't seem like something you can do...if you can, please try. It may be the one thing that keeps you from such despair while Dr. B finds something that works.

[Bridgercan]

Hey Taco Bill—I was very relieved when I saw you had posted today; I was checking everyday hoping to see something from you. While I’m very saddened to read how wretched things seem and feel right now, I’m encouraged you’re helping yourself by sharing and that you shared with an amazing emotional honesty. I really am in admiration for your candor. Reading your words I felt deep pain resonating within and frustrated compassion: I wish I could offer you more than words.

But for the moment words it is: like Ann encouraged, if you can, try to keep coming here. For me, it’s the compassion of the members and posters here that helps me keep compassion for myself and keeps me going another minute, another hour, another day in the face of the enormous toll this insidious disease takes on us. By coming here you are helping yourself get through another hour, then another, and then a day, and then another until Dr B can find something that is sustainable for you. Hang in there, Taco Bill, we can be a bit of shelter from the brutal storm you find yourself in!

[sleepdancer2]

Hi Taco Bill. Please know that many of us have been at prolonged low points (mine was several years) and feeling beyond dejected at the changes in our lives. In retrospect, augmentation and the post augmentation period was the worst. It can be a journey figuring out what things might help us. My doctors failed me, but little by little I found my way. That was before I found this forum. I had some symptoms I don't see others talking about here. My extreme agitation at night was characterized by what I can best describe as stuck thoughts. It seemed that when my periodic limb movements kicked in on repeat, whatever thought was in my head at that time kept repeating like a broken record. It was maddening. Calming my brain and preventing it getting stuck was so helpful to me overall. If you happen to experience that, we can talk more about some things that helped me. Once I got past my post augmentation period of misery, I found that regular use of a TENS Unit on my lower back helped calm my legs. It's not a cure, but gave me enough sleep to begin to feel less desperate. May you find the treatment(s) that give you your life back.

[Taco Bill]

Hi everyone. I had another appointment with Dr. B and he switched me to buprenorphine. It works great for stopping my symptoms and allowing me to sleep but just like with methadone and hydromorphone, I wake up feeling like death and spend the rest of the day exhausted and in a haze, even with a good night's sleep and using my CPAP. The brain fog is the worst. Up until I saw Dr. B for the first time back in August I was taking Tramadol. Aside from the augmentation, the side effects weren't nearly as bad as these stronger medications. Before the nightmare of augmentation, I managed the side effects by taking Adderall, which had been prescribed for treatment resistant depression and ADD. With the stronger medications I can take an Adderall and fall right back to sleep. This is how extreme the fatigue is. I am thinking that Tramadol may have caused what might have been a mild to moderate case to become extreme. I say that because since I stopped taking it my symptoms have improved a lot, though not enough to get to sleep. I am wondering if taking these stronger opiates might be like trying to kill a fly with a sledgehammer. I'm thinking about trying the least potent opiate available aside from Tramadol and working my way up from there. Perhaps I don't need something so strong. I see Dr. B again a week from tomorrow.

None of the first and second line medications helped at all, so I am basically stuck in opiateland if I want to sleep. The key right now is finding one with the least side effects. Dr. B said we are running out of options. I don't mean to sound negative, but things are looking pretty bleak and I am terrified.

[stjohnh]

...It works great for stopping my symptoms and allowing me to sleep but just like with methadone and hydromorphone, I wake up feeling like death and spend the rest of the day exhausted and in a haze, even with a good night's sleep and using my CPAP. ...

None of the first and second line medications helped at all, so I am basically stuck in opiateland if I want to sleep.
.... Dr. B said we are running out of options.

When you see Dr B, ask him if it is ok if you try adding dipyridamole. It helped me with the daytime zombie feeling better than almost anything else. It is a reach, but side effects are minimal and cost is fairly low. This is experimental for RLS, but the downside is low. Starting dose is probably about 1/2 of 75mg tablet three times daily. Doses used in the study ran between 100-300mg daily.

Dipyridamole increases extracellular adenosine (as in ATP, adenosine triphosphate, one of the major energy sources in our cells). It acts at a more basic level than dopamine agonists or gabapentin (though not as basic as iron). Side effects, if any, are mild nausea and headache the first few doses. It affects both the dopamine and glutamatergic pathways.