Just Joined - Chronic RLS w/ AUG - DX 2003

[VOX]

Hi Everyone

I am 50 and I've been living with RLS since probably around 2001 but had a formal DX from Walter Reed in 2003.


First Signs:
At night I started to getting RLS and it was magnified by stress or working long hours. It was also magnified by exercise. Initially soaking in a bath for 15 - 20 minutes would help, where I would have to make the water is hot as I could stand it. My doctor initially had me try Lorazepam .5mg to mitigate stress and RLS. It worked for a little while and about a few months in it began to create RLS. The doctor decided to have me try what was an anti-malarial drug which was also had effectiveness on RLS. It worked like a silver bullet but I had an awful reaction with that drug in that it gave me bloody spots subcutaneously that made me look like a leopard for several months, until the blood under the skin broke down and was absorbed by my body... it was frightening for a few weeks until they realized what it was.


The Journey:
Over the next 10 years I would have periodic bouts with RLS every other night, sometimes less frequent and other times more. The doctors and neurologists would go from one medicine to another. Stress REALLY would be an exacerbation element. I also have never had a great sleep schedule and work at a computer with what I do... quite sedentary job. RLS I'm sure was amplified by these elements altogether and from 2003 - 2013 It was to the point where almost every night I would have an occurrence.

Triggers I learned...
I of course realized several things that would cause or mitigate RLS or the severity:
- Caffeine or any other CNS stimulant
- Fasting occasionally would help
- Eating after 4PM, especially with anything with Sugar or heavy in carbs.
Regarding this: It didn't occur to me for a few years that this was simply a CNS stimulant, as the digestion and spiking of blood sugar was likely the culprit. I do not have diabetes or low blood sugar or sleep apnea or any other sleep disorder.


Tramadol HCL:
In 2013 our whole family went through a very stressful period and we moved from Southern California to Atlanta for 3 years. It was at this time where RLS began to move from what was only in the legs to my entire body. I would feel it start in legs but then crawl into my arms and back and even in my face. That awful feeling overwhelming me in stressful times.

I developed Cholestasis from an extremely stressful 30-60 days where I didn't eat at all and my body made gallstones due to the condition. On Christmas night I had my first extreme gallbladder attack and while in the ER they prescribed Tramadol to help with any attacks. Being so afraid of having another attack I would take 50 - 100mg every night around dinner to mitigate an attack. SHOCKINGLY I noticed a side effect after a week... Where was the RLS?!?


Silver Bullet & Augmentation
This IMMEDIATELY became a silver bullet. Unfortunately at the start of 2014, Tramadol became a controlled substance and at a peak of the OPIATE crisis it was very difficult to initially get it... all depending on the GP or Neurologist. I ended up seeing two different Neurologists, whom still wanted me to try other medicines and therapies to see if that would stop RLS.

For anyone with Augmentation, perhaps they experienced the same thing...
I would begin the meds, they MIGHT work for a few weeks max. I would ALWAYS have bad side-effects after two or three doses and the slowly the side effects would be the only thing left and the working effects on RLS would cease.


A depressing diagnosis and outlook:
A wonderful Neurologist finally told me in 2016 that I likely had RLS w/ Augmentation and send me to Emory Sleep Clinic in Atlanta. There they confirmed after an analysis of my medical records, examinations and tests. This is when I was told that ultimately Tramadol would stop working and
probably the only solution would be an Opiate. This, to this day, frightens the hell out of me.

We moved back to Southern California and initially I went to Cedars Sleep Clinic and then with a few neurologists. Unfortunately as the years have progressed, the dose of tramadol increased to where I take up to 200mg a day to mitigate RLS. Even sitting for 30 minutes can cause RLS... not always but many factors can exacerbate.

Where I am today / Living with RLS w/ AUG

Unfortunately now, augmentation is in full effect. As my physical addiction to the medicine after so many years is established, if I miss a dose my body will create RLS.

Trying to get off of it is EXTREMELY DIFFICULT because of this.

Additionally, now there is a window when I take a dose of between 45 - 120 minutes where it now causes extreme RLS... especially at night. I will have to go and soak in very hot baths and work or be active till the medicine has gone through this phase.

Unfortunately, being on the medicine for so long and initially there being so little known about the long-term effects of Tramadol, I have started to have some issues related to memory start effecting me. This is very frightening but my only goal is to get off the tramadol. I do not have an alternative.

I can say, unequivocally that FASTING does help mitigate a lot of extreme RLS effects but I can only do that for so long and FASTING is not something that can be done permanently - 'ala starving to death

NIDRA / TOMAC:
I am hoping to try and start on Nidra / ToMAC system but have not been able to try it out yet. I've spoken with NOCTRIX HEALTH but they do not follow up well which is very depressing. If anyone has had any experience or used the device, I'd love to know the results.

I hope my experience and information might help others.. even in the smallest of ways.

[ViewsAskew]

I don't know if this distinction matters....but you may not be augmented, rather you may have a combination of tolerance, general worsening over time, and/or opioid physical dependence. Opioid withdrawal creates physical symptoms identical (and may be) WED/RLS. It could be that stopping the opioid will be nasty for a couple weeks, but the symptoms will go back to normal afterward.

That is relatively similar to augmentation, which is why I said it may not matter which it is. I am one of the small percentage of folks who have tolerance with opioids. I have to be VERY careful. It sucks.

Are you still in SoCal? If so, can you go to either Dr Buchfuhrer in Downey (LA area) or to San Diego to Scripps where there is a Foundation Quality Care Center?

[Rustsmith]

The information that they gave you about tramadol wasn't quite correct. Tramadol is a mild opioid medication. It is prescribed more often than the others because it is virtually impossible to overdose on it. The tramadol drug is broken into two parts by the liver, one part is the opioid pain killer and the other part is almost exactly the same as the anti-depressant that is named Effexor. The liver cannot process more than 400mg/day of tramadol, so you cannot overdose. The reason why the said that it would stop working is because a VERY small number of patients on tramadol have augmented on it. RLS experts try to avoid using it for this reason. Unlike the other low dose opioids, it also requires an extended taper to stop taking it, not due to the opioid part but because stopping the anti-depressant part too quickly causes long term mental health issues (I was a victim of this problem).

It used to be that opioids for RLS meant either methadone or oxy. Methadone was preferred for several reasons and most of us who take it are quite happy with how it manages our RLS. The main drawbacks are what happens when the doctor who is providing it retires and the strange looks from pharmacists who assume you are taking it for illegal drug withdrawal. The only problem that methadone has caused me in the 7+ yrs that I have been taking it (other than getting my prescription every 30 days) was that it depressed my hormone production and caused me to become severely depressed. My doctor has no idea that this was a side effect even though she knew that I was near suicidal. I had to put myself on hormone replacement therapy and have since learned that this is a common methadone issue for men with RLS.

Beyond that, I have gone through withdrawal from methadone on two different occasions for two different reasons unrelated to supply and side effects. Each time, my major complaint was that it felt like I had the flu for about two days. But it should also be noted that i only take a very low dose even though my RLS is officially classed as "very severe".