ZOLOFT started my RLS and Cymbalta helped some

[Ata]

I started having rls symptoms around the age of 34, I was taking Zoloft at the time for mild depression. I was under high stress/anxiety at work topped up with relationship and financial stress. And to add to the mix I was drinking a lot of coffee which I feel really depleted my body of important nutrients etc. As the rls was becoming more prevalant I was getting sharp pain under my left foot during the day. This progressively intensified and then suddenly my left buttocks area was in pain.

After stopping the zoloft, I was stuck with chronic foot / buttock pain in my left leg and a consistent rls. My Dr gave me pregabalin, gabapentin, Nortriptyline, and after trying these with little improvement I was finally put on Cymbalta for the pain management and Rls. Cymbalta was the last drug I was on for a period of 1.5 years, it helped with pain and Rls symptoms which were almost non existent with this drug.

After this period my Dr told me slowly taper off cymbalta which I did , it was hell. I am almost 38 now and it is almost 2 months without any meds, I have terrible insomnia and my rls is still at it maybe the intensity is much less then before the start of my meds but it is consistent. My symptoms start around midnight until 6 am mostly, but my insomnia is making life miserable. I dont know if this is the withdrawal of cymbalta (I think it is) or if rls is keeping my brain on edge enough not to fall asleep. And once I do fall asleep at early hours of morning , I keep waking up every 2-3 hours.

[QyX]

So, why don't start taking the Cymbalta again?

That sounds like the easiest solution.

Did you have any insomnia during the time you took Cymbalta?

Insomnia is a common withdrawal symptom when stopping Cymbalta. Therefore you could try temporary treatment with Benzodiazepines (Clonazepam, Diazepam) for a few weeks if you have a doctor, who is willing to go down that route. However: since you seem to have genuine RLS and sleeping problems in general, it is easy to get hooked on them when you have no other treatment for your sleeping problems, RLS and depression.

When this insomnia thing is going to continue, it will trigger the next depression very soon.

What is your doctor's opinion about all of this?

[stjohnh]

Ata, QyX sounds reasonable to me. Cymbalta is probably safer than the usual RLS drugs, especially the dopamine agonists. Why not restart the Cymbalta?

[Ata]

So, why don't start taking the Cymbalta again?

That sounds like the easiest solution.

Did you have any insomnia during the time you took Cymbalta?

Insomnia is a common withdrawal symptom when stopping Cymbalta. Therefore you could try temporary treatment with Benzodiazepines (Clonazepam, Diazepam) for a few weeks if you have a doctor, who is willing to go down that route. However: since you seem to have genuine RLS and sleeping problems in general, it is easy to get hooked on them when you have no other treatment for your sleeping problems, RLS and depression.

When this insomnia thing is going to continue, it will trigger the next depression very soon.

What is your doctor's opinion about all of this?

I haven't been to the doctor since I stopped so over 2 months ago, I think I will make an appointment soon. The Cymbalta generally helped with insomnia too, and it was a cure for the rls if we can call it that. But I just hate being on meds in general wanted to give my body a break that is why I stopped. I am trying for a natural healthy approach now, if my insomnia eases I think I can tolerate the Rls as the symptoms feel less upbeat, but still it is an annoyance nonetheless. The withdrawal from CYMBALTA was absolute hell, never experienced anything like it. I feel cymbalta also caused non alcoholic fatty liver disease or even irritation of my liver to an extent, so I also wanted to give my liver a break. I am not overweight but losing around 10 pounds will be good in general.

Btw I used to smoke cigarettes and drink loads of coffee, these were also in my opinion huge precursors to start of my Rls. Now I avoid coffee at all costs and a no smoker. I think I am one of the rare cases in which cymbalta withdrawal is dragging into the few months period hence the terrible insomnia, I used to have have sleep issues ever since I was young but this withdrawal is on another level, I am awake until 7-8 in the morning and walk up around 12-1 in the afternoon. I am lucky I am an artist so no 9-5 otherwise I would be back on the meds asap.

[Ata]

Ata, QyX sounds reasonable to me. Cymbalta is probably safer than the usual RLS drugs, especially the dopamine agonists. Why not restart the Cymbalta?

I would but I am always striving to be healthy and work around the reliance on an external source to maintain my well being. And generally want to give my body a break from meds, I have a slight case of non alcoholic fatty liver disease or slight irritation of my liver which I got tested for, I feel the cymbalta brought this on.

[QyX]

I just did a quick google search and there is indeed some evidence indicating that Duloxetine (the active ingredient of Cymbalta) can cause hepatotoxicity.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3773985/ (article is available for free)

In any case, you should be aware that insomnia is also a huge stress factor for your body and mental health. Most of us have to the conclusion that taking meds is much better than enduring the RLS symptoms, insomnia and RLS-related pain.

And you are right, nicotine and caffeine can be huge triggers for RLS. So if you are vulnerable, it is best to avoid caffeine and nicotine altogether.

Regarding the insomnia: it will probably improve a bit over the next weeks and months, even when you do nothing but I would not expect it to go away fully given that you already have a history of insomnia and RLS. You also need to be aware that RLS tends to get worse the older we get.

[Ata]

Yes you are right, I also checked that cymbalta does indeed cause hepatotoxicity. However when I posed this to my Dr he actually pushed it aside and said my fatty liver was caused by diet.

I forget to mention I went to a neurologist last week and put all my concerns, just wanted a fresh take. I suggested that I get my iron blood test to see if that could be a trigger, since I recently read that it could help. This dr was quite dismissive on iron, just wrote me a prescription for Sifrol (Pramipexole) + Gabapentin. This for me seems like a easy way out, and feels like my hard work at getting off the cymbalta was for nothing.

I will see how long my stubborn attitude will hold up regarding going back on meds again.
By the way what has worked for you ? And how long have been dealing with Rls ?

[QyX]

The response from your Dr is unfortunate. Even when your fatty liver is caused by diet, the Cymbalta would pose significant & relevant additional risks. So as long as there are less riskier alternatives available, not using Cymbalta anymore seems like a smart move in my eyes.

Iron: given the fact that most standard RLS treatments haven't been tried at this point and the lack of education on the side of physicians, it might be incredible complicated to find someone who is willing to give you an iron infusion. Most likely you will have to see many different doctors until you will find someone who is willing to give it a try. At least for the moment, I would look for other options and continue working on the iron infusion long-term. If it works, it is by far the best treatment option.

When I understand you correctly, you have tried Gabapentin in the past with little success. However you haven't tried Pramipexole, yet, correct?

So even when you are not going to take the Pramipexole long-term, for evaluating your RLS, it still might make sense to give the Pramipexole a shot.

I don't think taking medication for RLS is an easy way out, especially because without treatment, the symptoms can become unbearable. Chronic insomnia, RLS, depression and anxiety can easily do way more harm than the side effects of medications. Of course you only ever should take medication where the benefits clearly outweigh the associated risks.

If you are interested in my treatment history: I posted almost everything here in this forum. You can check these two threads:

http://bb.rls.org/viewtopic.php?f=4&t=8731 and http://bb.rls.org/viewtopic.php?f=4&t=10329

Currently I am taking potent opioids (120 mg of Morphine, 20 - 30 mg of Oxycodone, sometimes 4 mg of Hydromorphone in the morning), 600 mg of Oxcarbazepine and medical Marijuana, mostly indica and sativa dominant hybrid strains with a potency of around 20% (between 0,2 and 0,5 g per day), together with 10 mg of CBD oil and Sativex-Spray, containing 2,7 mg THC and 2,5 mg CBD per dose (I normally take 2-4 Sativex doses per day). The medical Marijuana I get as full flowers from the pharmacy. I then crush them and inhale them in a vaporiser.

Cannabis has positive effects on all my core RLS symptoms and additionally improves my mood.

When I think about your situation, if you tolerate Cannabis and have the option to obtain a high quality product, I would give it a try for sure. For me medical Marijuana was a life changer. I was in a horrible condition before I started using it.

[ViewsAskew]

That the doc dismissed the iron is problematic for me. I get not being willing to do to an infusion immediately or to suggest oral iron, but to not take a test?

I put myself through years of misery not wanting to take medications. I changed my diet, I worked out, I slept in a separate bed from my partner...and all that did was make me miserable for longer than I needed to be.

If it is a few times a week and you can easily do a few stretches? Sure. If it is nightly, disrupts your life, prevents normal activity, and keeps you from sleeping? I would want to make sure I was making the best choice possible, but I would not hesitate.

[Ata]

That the doc dismissed the iron is problematic for me. I get not being willing to do to an infusion immediately or to suggest oral iron, but to not take a test?

I put myself through years of misery not wanting to take medications. I changed my diet, I worked out, I slept in a separate bed from my partner...and all that did was make me miserable for longer than I needed to be.

If it is a few times a week and you can easily do a few stretches? Sure. If it is nightly, disrupts your life, prevents normal activity, and keeps you from sleeping? I would want to make sure I was making the best choice possible, but I would not hesitate.

Yes I was actually disappointed in the fact that the Dr had a typical know it all attitude. But I will go to a Gastroenterologist next week as I really feel their is a link between the gut and Rls, and I will insist a full blood test with all the ones for iron as well.

I think people who have not had rls can never really comprehend what a complex syndrome we are going through. It is like Rls is not a real disease since it can't be truly substantiated on paper or tests etc I think this is one of the most frustrating parts.

[Ata]

The response from your Dr is unfortunate. Even when your fatty liver is caused by diet, the Cymbalta would pose significant & relevant additional risks. So as long as there are less riskier alternatives available, not using Cymbalta anymore seems like a smart move in my eyes.

Iron: given the fact that most standard RLS treatments haven't been tried at this point and the lack of education on the side of physicians, it might be incredible complicated to find someone who is willing to give you an iron infusion. Most likely you will have to see many different doctors until you will find someone who is willing to give it a try. At least for the moment, I would look for other options and continue working on the iron infusion long-term. If it works, it is by far the best treatment option.

When I understand you correctly, you have tried Gabapentin in the past with little success. However you haven't tried Pramipexole, yet, correct?

So even when you are not going to take the Pramipexole long-term, for evaluating your RLS, it still might make sense to give the Pramipexole a shot.

I don't think taking medication for RLS is an easy way out, especially because without treatment, the symptoms can become unbearable. Chronic insomnia, RLS, depression and anxiety can easily do way more harm than the side effects of medications. Of course you only ever should take medication where the benefits clearly outweigh the associated risks.

If you are interested in my treatment history: I posted almost everything here in this forum. You can check these two threads:

http://bb.rls.org/viewtopic.php?f=4&t=8731 and http://bb.rls.org/viewtopic.php?f=4&t=10329

Currently I am taking potent opioids (120 mg of Morphine, 20 - 30 mg of Oxycodone, sometimes 4 mg of Hydromorphone in the morning), 600 mg of Oxcarbazepine and medical Marijuana, mostly indica and sativa dominant hybrid strains with a potency of around 20% (between 0,2 and 0,5 g per day), together with 10 mg of CBD oil and Sativex-Spray, containing 2,7 mg THC and 2,5 mg CBD per dose (I normally take 2-4 Sativex doses per day). The medical Marijuana I get as full flowers from the pharmacy. I then crush them and inhale them in a vaporiser.

Cannabis has positive effects on all my core RLS symptoms and additionally improves my mood.

When I think about your situation, if you tolerate Cannabis and have the option to obtain a high quality product, I would give it a try for sure. For me medical Marijuana was a life changer. I was in a horrible condition before I started using it.

Thank you for the in-depth details of your treatment. Unfortunately, I have no access to high quality or medical grade marijuana. I would certainly try it of I did.

On the subject of opioids, I had taken a cough/cold pill the other night which had 20mg of codeine. This seemed to put me to sleep for 5-6 hours which is a god sent, and with not groggy tired feeling when I woke up. I think codeine could be a good tool for insomnia.

I will give my Dr a visit in the coming week and discuss all these points, and will give updates here in the thread.

[QyX]

Well, if you can get a prescription for Codeine or even better: Dihydrocodeine ... that certainly would be the best option for the moment.

Opioids are great for RLS.

That you were able to get 5-6 hours of sleep with Codeine also makes me think that your insomnia is more related to RLS than to Cymbalta withdrawal symptoms.

[Ata]

Yeah it feels like a double edged sword right now, my brain has a really hard time just calming down to fall asleep and the rls is evident and really unstable. Some days it is calm enough but my brain can't grasp that connection to shutdown.

Another interesting point in my case is that 80% of RLS is on my left leg, I don't know if this has any significance. And the aspect of inflammation is so valid that if I really have enough and want to get some shut eye all it takes is a 400mg brufen or as I said the combination of acetaminophen/Codeine 300/20mg. These are things I noticed these past weeks. What could be the root of this inflammation ? Is it autoimmunity stemming from Sibo, leaky gut etc

[ViewsAskew]

Most of us do not get any relief with ibuprofen. I have to wonder if there may be more than one issue going on and that is complicating it.

[Ata]

Well to update you guys, I just went to a new Dr who is a neurologist specialising in sleep disorders and rls. He prescribed Mirapex and also wrote a ferritin (iron) blood test. Just took the first dose of Mirapex tonight , got a initial throbbing headache that lessened after a few hours . Other then that a feeling of confusion, restlessness, nausea that went away after an hour, and very odd sensations all through out my legs.

I really don't know what to make of it all, I guess my brain/body trying to adjust to it. It is 2 am and I am still awake (took it at 9 pm) , I think I will use it a few days and see if it does anything substantial. I will get the iron test checked out tomorrow, hopefully get some answers their. I really don't want to be on any meds honestly speaking.