Vent

For everything and anything else not covered in the other RLS/WED sections.
leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Vent

Postby leggo_my_legs » Tue May 23, 2017 6:58 am

I spent literally all day today trying to nurse a headache and muscle pain from driving too much yesterday and from kicking in my sleep last night. I am finally out of pain, and it's freaking time to go to bed again to start the cycle over tomorrow. I hate this.

I am probably functioning at about 50% of normal. And like, that's an "F," if we're talking grades. Maybe I'm underestimating it, because I'm still working, but doing the minimum at work. C-? That's probably about it. 70% or so. But that number feels too high when I look at it. D+? 69%? Yeah. D+, but with an emotional value of 30%. It *feels* like I am functioning at 30%.

Doctor's appt to look at meds isn't until June 7, and this was the move-up date from an appt originally scheduled for June 28. I knew my meds were declining in effectiveness, but I let her convince me to keep trying them for another 90 days. And during that time they declined further. Stupid of me. I just wanted them to work.

Just so frustrating. To hope every night that I wake up feeling better, and to not have it happen. Day. After. Day.

ViewsAskew
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Re: Vent

Postby ViewsAskew » Tue May 23, 2017 7:45 am

So sorry, leggo, that is it like this. I so wish I had a miracle for everyone here.
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.

badnights
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Re: Vent

Postby badnights » Tue May 23, 2017 7:58 am

You're probably right about the 50%. I had a long period - years, actually, when my meds weren't figured out - when I felt that I was at 20%. One Friday I realized I had spent all week working on something that should have taken me a day. 20%. I realized my gut feeling was probably accurate.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: Vent

Postby leggo_my_legs » Tue May 23, 2017 11:28 pm

Thanks... I had to get that out. What a frustrating affliction!!!

I may try kratom in the meantime though I hesitate to try anything nontraditional that may give my doctor an excuse to think I'm into drugs.

What I'm into, is desperation for a restful night of sleep!

I so wish I could try medical mj...I could certainly get an rx card but I live in fear of hair testing for my job.

ViewsAskew
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Re: Vent

Postby ViewsAskew » Tue May 23, 2017 11:48 pm

I get how much addiction costs society, families, work, etc....but have so much ambivalence about the topic. I mean, my dad was an alcoholic, so I GET what addiction can do to a family. But, it seems SO crazy to criminalize it, allow cartels and other similar groups to profit (and I mean profit!), and then prevent people like us from using something that could help. Yeesh. (OK, my politics just became clear!)
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.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: Vent

Postby leggo_my_legs » Thu May 25, 2017 7:26 am

Agree. Primary prevention and quality treatment is better than restricting acces as a main method of addressing addiction. Problem is, social spending is not in vogue in many places. :roll:

debbluebird
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Re: Vent

Postby debbluebird » Thu May 25, 2017 9:32 pm

So sorry that you are not doing well. My heart goes out to you.

ViewsAskew
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Re: Vent

Postby ViewsAskew » Sat May 27, 2017 12:18 am

leggo_my_legs wrote:Agree. Primary prevention and quality treatment is better than restricting acces as a main method of addressing addiction. Problem is, social spending is not in vogue in many places. :roll:


An understatement!
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.

legsbestill
Posts: 328
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Vent

Postby legsbestill » Mon May 29, 2017 5:06 pm

Leggo, I find kratom far more helpful than MMJ. I could do without MMJ but I would find it difficult to manage without kratom what with central sleep apnea rendering opioids undesirable for me.

Polar Bear
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Re: Vent

Postby Polar Bear » Mon May 29, 2017 7:33 pm

It seems that I hear only good things about kratom. How I wish it was legal here.
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

yawny
Posts: 168
Joined: Sun Nov 08, 2015 4:20 pm
Location: Washington

Re: Vent

Postby yawny » Mon May 29, 2017 10:41 pm

Leggo, I believe your symptoms are similiar to mine (the main monster is PLMD). Recently I've been experimenting with Baclofen with some success. I say some because I have other issues (food sensitivities) complicating sleep. I take 5mg at 30 minutes before bed and I sleep anywhere between 5-6 hours then fractured sleep after that. However, I also take Buspar during the day and then Gabapentin, vape CBN cannabis, and eat a CBN cannabis edible before bed. I'm on the fence about making it a part of my regular routine because it's adding yet another drug, aargh!, and another drug that I'll become dependent on. Have you ever tried Baclofen? Dr Buchfuhrer's website (rlshelp.org) says this about it...

Lioresal (Baclofen)

This drug is used as a muscle relaxant and anti-spasm medication. It is used in MS to alleviate muscle spasms and the resultant pain. Lioresal was found in one study to decrease the arousals from PLMD (the intensity of the movements was decreased). Its effect on daytime RLS symptoms is less well understood.

Lioresal comes in 10 and 20 mg tablets. It should be started at the lowest dose (5 mg, 1-3 times per day) and increased every 3 days until symptoms are relieved. The average dose for MS patients for muscle spasticity is 40-80 mg per day. The most common side effect is drowsiness; weakness and fatigue can also be a common problem.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: Vent

Postby leggo_my_legs » Tue May 30, 2017 9:10 am

Yawny,

Thanks for the suggestion! I'll have to look into it. I am careful with the muscle relaxants because flexeril/cyclosporine gave me drug-induced hepatitis. Apparently I am lacking in a specific liver enzyme and can't process flexeril. I have been trying to find out the specific enzyme so I can avoid all other drugs that are processed on that pathway (not sure if I'm using the right terms here) but haven't been able to figure it out. I've run it by the pharmacist and MD and still don't know. It seems kind of important!

Thanks again for the suggestion. I feel like any new medication lead is worth its weight in gold. I truly appreciate it.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: Vent

Postby leggo_my_legs » Tue May 30, 2017 9:13 am

legsbestill wrote:Leggo, I find kratom far more helpful than MMJ. I could do without MMJ but I would find it difficult to manage without kratom what with central sleep apnea rendering opioids undesirable for me.


I'm glad kratom is so helpful for you. Did you get the central sleep apnea from taking opioids? I'm afraid of that.

My fear with trying kratom is having some kind of odd reaction and having to explain myself at the ER or to my doctors. I need to get over that fear.

Polar Bear, crossing my fingers that maybe it will become legal there too.

leggo_my_legs
Posts: 133
Joined: Sun Oct 16, 2016 12:29 am

Re: Vent

Postby leggo_my_legs » Tue May 30, 2017 9:14 am

I seem to be afraid of a lot of crap!

legsbestill
Posts: 328
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Vent

Postby legsbestill » Tue May 30, 2017 8:14 pm

My consultant tells me the central sleep apnea was caused by oxycontin. I have since stopped taking oxycontin but havent had a follow up sleep study so don't know if that has helped. This was the primary reason I started kratom (and some enthusiastic recommendations on here and other forums). It felt really odd taking it at first when I knew it was illegal. Now I don't know what I'd do without it. Though I should point out that I find it really easy to stop taking it also - I stop every so often for about two weeks - during which time I take neupro which is also great for my symptoms. This regime ensures that I don't become too dependant on kratom and at the same time by restricting the use of neupro (which I also take at the lowest dose) avoids or reduces the risk of augmentation.

I totally understand your anxiety about trying kratom. I felt the same way initially. Now I am much more militant. I would be very angry with someone who challenged my use of kratom when there are so few other options available to me.


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