I'm tired of fighting

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
stockton2malone2
Posts: 11
Joined: Fri Dec 14, 2018 3:11 pm

I'm tired of fighting

Postby stockton2malone2 » Tue Feb 12, 2019 4:08 pm

Sleep study confirmed RLS, PLMD, and REM sleep disorder have gotten steadily worse over the years, and really ramped up in the last year to the point that I can't hold down a job anymore. Right now, it is often a struggle just to take basic care of myself. I'm so sick of being a shittier version of myself in every way. Sadder. Angrier. Stupider. I'm almost always exhausted and barely leave the house. I tried so hard not to be a victim for so long, but nothing works. I'll just continue to get worse and lose more quality of life.

I can't have real relationships anymore. If I'm lucky, I can spend an hour or two with a friend before I'm an irritable, exhausted mess.
I used to pride myself on my independence and now I'm becoming a burden.
I can't contribute anything useful to the world anymore.
All I can do is consume and sit around until one day I get old and die.

Both my iron levels are normal. My vitamin D is normal. The rest of my CBC and my TSH are normal.
I've tried Mirapex, Ropinirole, Neupro, Lyrica, Horizant, Gabapentin, Clonazepam, Clonidine, Marijuana, and Alprazalom. At the very best I'm able to get to sleep past the RLS, but the quality is still sh**.
Both my half brothers and my mom sleep weird, and I've had RLS/PLMD since I was a kid. Genetics seem to be the primary culprit.

So, I have a neurodegenerative disease that isn't going away, and a rapidly declining quality of life. I've had a relatively good and happy life, I've been lucky to see and do a lot of great things. Unfortunately it seems like that luck has run out though, and the more I look at it, the more I don't see the point in fighting reality anymore. My life is pretty much over, and I can't stop thinking about just cutting to the chase.

Rustsmith
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Re: I'm tired of fighting

Postby Rustsmith » Tue Feb 12, 2019 5:07 pm

My life is pretty much over, and I can't stop thinking about just cutting to the chase.


stockton2malone2, many if not most of us have been where you are today. There IS hope and a way out of this.

First, are you still taking Alprazalom? One of the side effects of it is the mental state that you describe. If you are still taking it, call your doctor immediately and ask them to fit you in so that you can get off of it.

Unfortunately, RLS does get more severe with age but all that this means is that the meds that are used in the early stages need to be replaced with something stronger. Your list of medications did not list an opioid. Many of us with severe RLS have been through the same meds that you listed and had to be switched to an opioid. Although many doctors are scared to prescribe these with the current war on opioids, they are the one medication that works uniformly for severe RLS and they only require very low doses. Addiction is not an issue due to the low dose. Many RLS patients have taken them for many years with no increase in dose and that dose is 10 or 15 times lower than what is taken by chronic pain patients. If your doctor is one that is too scared of the DEA to prescribe them, then you simply need to find a doctor is willing to provide what is reasonable care for you, his/her patient.

As for genetics, it sounds like you are like me in that you drew the short straw in your family's genetic lottery. My father probably had PLMD and I know that at least one sibling probably also has mild PLMD where my RLS and PLMD are severe and my REM sleep disorder is getting worse with age. I also have very high iron levels, which do not help with my situation. But in spite of that, I have been able to maintain reasonable control through the use of several meds with an opioid being the key player in my medication cocktail.

Please don't give up. With proper help from a doctor familiar with treating severe RLS, you can regain control of your life and regain the things that you have lost.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Location: Palo Alto, California

Re: I'm tired of fighting

Postby stjohnh » Tue Feb 12, 2019 7:36 pm

stockton2malone2 wrote:Sleep study confirmed RLS,...

Both my iron levels are normal. My vitamin D is normal. The rest of my CBC and my TSH are normal.
I've tried Mirapex, Ropinirole, Neupro, Lyrica, Horizant, Gabapentin, Clonazepam, Clonidine, Marijuana, and Alprazalom. At the very best I'm able to get to sleep past the RLS, but the quality is still sh**.
Both my half brothers and my mom sleep weird, and I've had RLS/PLMD since I was a kid. Genetics seem to be the primary culprit.

...


stockton2malone2: RLS is caused by low brain iron. The normal tests only check for blood iron, not brain iron. Steve is on the money on recommending opioids. Extremely reliable treatment for severe RLS.

You also haven't mentioned kratom. It acts like a mild opioid. It probably is not strong enough to be a solution by itself, however, it can still make your RLS less miserable. It is legal in most states, and you can have it within 24 hours if you pay for expedited shipping.

That said, RLS experts have recently moved IV Iron infusions to first line therapy. Some people don't respond, but if you are a responder, your life will be immensely better. Ask your doctor about IV Iron Infusions to correct Brain Iron Deficiency.
Blessings,
Holland

stockton2malone2
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Joined: Fri Dec 14, 2018 3:11 pm

Re: I'm tired of fighting

Postby stockton2malone2 » Tue Feb 12, 2019 7:54 pm

I'm currently taking clonazepam. I understand it's a CNS depressant, and thus is going to cause depression. I can muddle through the depression reasonably well when the situation has some optimism though i.e. over the years of mental health issues I've gotten good at distinguishing between situational and chemical depression in my body.

What do I ask my doctor for opiod wise? I've had three doctors hesistant to go the opiod route, but maybe a more specific med or dosage will help.

Do the opiods seem to help you with PLMD/sleep quality as well?

Rustsmith
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Re: I'm tired of fighting

Postby Rustsmith » Tue Feb 12, 2019 11:53 pm

The opioids quickly address the RLS and PLMD, just like a dopamine agonist probably did when you first tried one. But opioids do not cause augmentation and most of us stay on the same low dose for years without any need to increase the dose.

Opioids help with sleep for some and aggravate the situation for others. I am one of the others, I take my long half life opioid at noon so that the "alerting" side effect is gone by bedtime. I then take gabapentin at bedtime along with an edible marijuana product that is high in THC. The gabapentin helps me fall asleep at a reasonable time and the THC helps me stay asleep in the early morning when the gabapentin wears off.

You might find this document valuable when discussing an opioid with your doctor. Print out a copy, highlight a couple of short sections that you would like for your doctor to read. Your doctor may ask to keep it, which of course you want him/her to do. My doctor actually thanked me for bringing it in on my next visit.

https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Re: I'm tired of fighting

Postby Polar Bear » Wed Feb 13, 2019 2:42 pm

Stockton - you have said that 'both your iron levels are normal'. Would one of these iron levels be your Serum Ferritin which is not normally tested in run of the mill bloodwork. This is the iron level that is so important to us sufferers of rls.
Also, depends what you mean by normal.
Serum Ferritin levels of 20 would be normal for a non sufferer.
We want ours to be up over 75, more like 100+

Please check with your doctor if you have had your Serum Ferritin tested and if so get the actual figures... not just 'normal'.
If it hasn't been tested you should arrange to have it done.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

stockton2malone2
Posts: 11
Joined: Fri Dec 14, 2018 3:11 pm

Re: I'm tired of fighting

Postby stockton2malone2 » Wed Feb 13, 2019 7:37 pm

I sent those documents to my doctor and she agreed to likely prescribe oxycodone after she does some more research. I'll try to stay optimistic in the meantime, especially as this seems like my last shot at some quality of life. We'll see what happens, hopefully starting tomorrow or Friday.

Polar Bear - I did get ferritin done as well, and it was 82 I believe. I'll double check that.

Polar Bear
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Re: I'm tired of fighting

Postby Polar Bear » Wed Feb 13, 2019 8:48 pm

Good luck with getting the oxycodone, I wish you well.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Re: I'm tired of fighting

Postby ViewsAskew » Thu Feb 14, 2019 10:47 am

I do not believe that for some of us that there is a magic bullet. I also don't believe that there is nothing we can do. Am I where I'd prefer to be? Not at all. Am I MUCH better than I was? Oh, yes! Are opioids perfect? Nope. But, over the years, between opioids, iron infusions, alternative such as kratom and CBD products, things are (most of the time), decent.

Lots to learn here, many ideas you can hopefully use and try. The biggest thing I remind myself of is that for every time I thought there were no more options, I've found more...and have done that multiple times. This is a one of a kind resource - I greatly appreciate the people here, the selflessness of them, the quality of the information as well its breadth and depth.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stockton2malone2
Posts: 11
Joined: Fri Dec 14, 2018 3:11 pm

Re: I'm tired of fighting

Postby stockton2malone2 » Sun Feb 17, 2019 2:42 pm

I started 5mg of oxycodone Thursday night. I'm sleeping through the night and it feels like reasonably good sleep, but definitely groggy during the day and need a nap. Certainly better than nothing though, and I'm hoping my body will get a little more used to the grogginess with some time.

leggo_my_legs
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Re: I'm tired of fighting

Postby leggo_my_legs » Sun Mar 03, 2019 8:00 am

Some of the opioid side effects is the timing of it. Try keeping a diary as to what time you took it and how long it took to go into effect. If you're waking up sedated, it's possible that you are taking it too close to bedtime.

Are you also treating your depression? You sound extremely depressed, which is a very common problem among us.

I have found a wonderful podcast about adjusting to chronic illness and "health challenges" I am :lol: at euphemism there. It's called This is Not What I Ordered. https://laurenselfridge.com/listen It's not specific to RLS, but has interviews with a variety of people adjusting to and addressing to a variety of different "health challenges." [Sometimes the euphemisms are worse than the real descriptors as they just broadcast: CHALLENGE is a euphemism for SUCKY STUFF!] But I still really like the podcast and think you might too.

One way your depression comes across is that how quickly you are to gloss over the major improvement of sleeping better! "but..." Try really taking the progress in! **You're sleeping better.** That is phenomenal! And you've managed to get a new rx that can be very hard to get. Good for you!

Just keep trudging along one foot in front of the other, until you feel better.


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