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New member :)

Posted: Wed Oct 17, 2018 8:49 pm
by Sonjams
Hi. I go by Sonjams here on the Internet. I was diagnosed with RLS many moons ago, and it started out bothering me only as I tried to fall asleep. Since then, the time in which my symptoms start popping up is coming earlier and earlier in the day. Now I start feeling my symptoms as early as noon! I take Mirapex, which works very well if I take it in time. Just curious to see why it is coming on earlier in the day and if there are other options that might keep it at bay longer. Thanks in advance.

Re: New member :)

Posted: Wed Oct 17, 2018 9:13 pm
by Rustsmith
One of the unique properties of the use of dopamine agonists when used to treat RLS is augmentation. Augmentation occurs when the medication stops treating your RLS and starts making it worse. Your RLS symptoms occur earlier in the day and can spread from the legs to other parts of the body, which often includes the arms. The only "treatment" for augmentation is to stop taking the dopamine agonist. The withdrawal can be very difficult if your doctor is not willing to prescribe an opioid to cover the transition. I should also add that many doctors are not familiar with augmentation and therefore do not know how to help a patient who has it. For more info, take a look at the information posted in our Augmentation forum.

Two other important details are: 1) what is your dose of Mirapex? The higher the dose, the greater the chance of augmentation. And 2) do you know what your ferritin number is? Any RLS patient should have a ferritin level of at least 75 and better over 100. This is different from the general population, where 20 is considered the low end of normal. This is important because low ferritin levels increase the probability of experiencing augmentation.

Re: New member :)

Posted: Thu Oct 18, 2018 2:42 am
by ViewsAskew
What he said!

Re: New member :)

Posted: Fri Oct 19, 2018 10:59 pm
by badnights
Low ferritin levels are also associated with more severe WED/RLS symptoms. Ferritin is a protein that stores iron in body tissues. It is measured in a blood sample but is not always part of a standard iron workup and might have to be asked for specially.

You can find more information on the relationship between augmentation and iron in my signature link below my posts. I also have instructions there on now to access the Foundation's brochures including the Medical Bulletin which is a great one to give to your doctor to begin his education about augmentation.

Re: New member :)

Posted: Mon Nov 05, 2018 5:51 pm
by paigey118
Hi - I'm a new member as well. I've been suffering from RLS for a little over 3 years. It seemed to start when I was under an incredible amount of stress that also caused other health problems to get worse or arise. I'm 39 and am a diabetic. My current A1C is averaging around 7.1. I have also had peripheral neuropathy for about 11 years. My neuropathy is currently treated with 3200mg of Neurotin (Gabapentin), 90 mg a day of Cymbalta, and 100 mg of Lyrica. I was taking 300 mg of Lyrica until recently and have been weaning off b/c of the weight gain and other side effects. I'm trying to come off it completely. The RLS is no worse or better on/off Lyrica. I also have sleep apnea for about 8 years and is treated with a CPAP machine. My diabetes is treated with Metformin and Trulicity. -- Long story short I need some relief. I have declined meds to treat RLS due to the side effects. If it's a rare side effect, I'll be the one to get it. My stress has significantly reduced and other health issues are better but RLS seems to just get worse. -- I try to keep caffeine to only 1-2 coffee and 1 bottle of soda a day and before 5pm. -- My legs constantly have the urge to move and it's not just in the evenings or when I'm sleeping or trying to sleep. It's all the time and of course it's awful when I'm trying to go to sleep not to mention that I kick or shake all night in my sleep which keeps my husband awake. I can be sitting at a restaurant with someone, or just having a conversation. At first the dr. thought it was anxiety, but the anxiety meds didn't help. My Ferritan levels were checked back in May and came in at 9.6. I work out 3 times a week and have for over a year with a personal trainer for 1 hour each session. My eating is much better than it was 3 years ago as well. Help....

Re: New member :)

Posted: Mon Nov 05, 2018 6:09 pm
by Rustsmith
paigey118, welcome to the board but sorry that you have to be here.

There are two things that jump out of our message, Cymbalta and your ferritin level.

Almost all of the antidepressants are RLS triggers. In fact, one of the side effects of Cymbalta in the list classed as "get help right away" is restlessness. So this is something to discuss with your doctor ASAP. If you need to be on an antidepressant, the only one that is not known to aggravate RLS is Wellbutrin. If that option doesn't work and you need to continue with Cymbalta, then you are probably going to need something to treat the RLS.

As for your ferritin level, 9.6 is quite low even for the normal population where 20 is the low end of acceptable. For those of us with RLS, it needs to be over 75 and better yet over 100. So, your doctor should have recommended starting an iron supplement. The normal recommendation is to try iron sulfate pills (65mg of Fe or 350mg iron sulfate, which are different measures of the same thing) along with Vitamin C. This should be taken on an empty stomach, which means 2 hrs after a meal and 1 hr before. Some find the iron sulfate pills to cause too much stomach upset. So the next option would be a product such as Gentle Iron, which is iron bisglycinate. It will take a number of weeks to get your ferritin levels up and this doesn't work for everyone. In those cases, an iron IV is needed. The problem with iron IVs is that most doctors are not familiar with them and even if yours is, finding a provider who will give iron IVs for RLS can be very difficult.

Re: New member :)

Posted: Mon Nov 05, 2018 6:40 pm
by stjohnh
paigey118, You certainly have a complex set of problems, and as Steve mentioned, the low ferritin and Cymbalta are problems that should be addressed. The way you wrote your summary seems to indicate that you take the Cymbalta for the diabetic neuropathy. Is that why you take it or is it for depression?

Your RLS sounds like it is on the severe end of the scale. The Gabapentin and Lyrica are considered first line treatments for RLS in addition to diabetic neuropathy. Clearly they have failed to control your RLS. The usual reason for a low ferritin in a woman your age is menstrual blood loss. If that is the reason, you just need more iron. If it is not due to that, your doc needs to find out the cause. Regardless of the reason for the low iron (ferritin) test results, you are a good candidate for intravenous iron treatment for your RLS. Many people get substantial relief and some get complete relief of RLS symptoms. Click on this link, download the pdf of the article, print it and take it to your doctor.

You have sleep apnea, if you have seen a sleep specialist, that is probably your best chance to get effective treatment. Many sleep docs treat RLS patients.

Re: New member :)

Posted: Mon Nov 05, 2018 9:49 pm
by paigey118
Rustsmith and stjohnh -- thank you both so much!!! I actually see my neurologist this Thursday and will talk to her about the Cymbalta. I am on it for the neuropathy. I have struggled with bits of anxiety over the years and came off of Lexapro since Cymbalta also works as an anti depressant. I get the most relief out of the Gabapentin for the neuropathy but my fingers hurt so bad and I'm scared. They all make me gain weight, and I've already cut down on Lyrica significantly. So if I back off of Cymbalta, then I'm guessing I will have to go back to adding more Lyrica to at least treat the neuropathy pain. I feel like I've been doing everything I can to lose weight at a healthy level but the neuro meds are an obstacle.

As for the Ferritin levels - I have another blood work request to get completed so we can see where it is. I do have a sleep therapist who ordered the new blood work - so maybe the Iron IV will be the next step, regardless, thank you for telling me so that I can ask sleep dr about it.

I do currently take 18 mg of the Gentle Absorb Iron with 1000 mg Vitamin C. From your message, RustSmith, it sounds like I need to increase that to help the Ferritin levels. I was also reading online how eating foods high in this type of iron along with citrus foods to help the absorption could assist me. From what I was reading it seemed like broccoli, whole grains, eggs, nuts were some good choices. -- Anyone had any luck with food choices to assist with RLS?

Re: New member :)

Posted: Mon Nov 05, 2018 10:31 pm
by Rustsmith
There was an RLS patient conference a few weeks ago and one of the questions that was asked of a panel of RLS experts had to do with increasing iron through diet. The answer given was that they only effective means for getting iron through the diet was via the blood in meat. Further, that iron from plant sources wasn't adsorbed and that cooking meat to medium was also enough to leave most of it in a form that was not useful.

There are a couple of other caveats about taking iron. Do not take it at the same time as thyroid meds because the two cancel each other out. Also, do not take it at the same time as any calcium, magnesium or zinc supplement because they all compete for the same adsorption sites in the intestines and iron always loses out to the other three minerals.

Re: New member :)

Posted: Tue Nov 06, 2018 5:23 am
by Yankiwi
If taking thryroid medication get your thyroid blood level checked after starting to take iron tablets. I had to lower my thyroxine once I was on iron.

Re: New member :)

Posted: Tue Nov 06, 2018 6:08 pm
by paigey118
Hmm, interesting. Thanks for the info. so much for Google. lol -- did my blood test this morning to see where my Ferritin levels are at now and put in a call to my sleep dr to ask about iron iv, but I imagine they will wait on blood results first. thankfully I don't take thyroid meds.

Any thoughts or experience on taking turmeric supplements or on an herbal supplement called Restavin? Just curious...

Hopefully I will have a new path for treatment by end of week between sleep dr and neurologist. If the Cymbalta has caused RLS or at least for it to worsen over time as I've only been on it for a couple years maybe, then maybe coming off it completely will help. Worried that since it's started it won't go away.

I appreciate everyone's input. It's very helpful.

Re: New member :)

Posted: Thu Nov 08, 2018 3:44 am
by badnights
The Cymbalta certainly might be an issue and I agree that you should try stopping it to see if that helps the WED/RLS - but unless you address the ferritin, you will probably have WED/RLS symptoms no matter whether you take Cymbalta or not. You will need to raise your ferritin substantially, as steve and Holland have said, but when you do, you will most likely notice a clear reduction in symptoms.

So find out if there is any other reason you're losing iron, other than WED/RLS, as a priority. But as another priority :) especially since investigating the infusion route will take time, you should probably increase your oral supplements, with your doctor's blessing of course, to one or two pills of ferrous sulfate or ferrous fumarate a day. With 500 mg C should be enough.