i went down a research rabbit hole. i tried to find what was triggering it this time. the first time it was an antipsychotic i was on, the second time it was because i was constantly high and i was unmedicated (anxiety & depression). this time i’m almost certain it’s because i’m severely vitamin D deficient, like, it’s at 16.1 ng/ml and my lab’s reference is 30-100. my ferritin was high (depends on the lab), my hematocrit was high, rbc was high, iron sat was high, so def not an iron deficiency. my magnesium was normal. my b12 was higher than it should be, which is confusing. so we have the blood work, i’m going to a hematologist, and i see my neurologist next week on thursday.
the neurologist put me on gabapentin 300 mg, 3 times a day. i’m probably going to increase to 1200 mg because the gabapentin wears off super fast, and the time in between doses is not fun. the problem is, even with the gabapentin, i’m still uncomfortable. i still have muscle spasms and aches. i can’t go anywhere because i’m scared of going in the car and being away from home if anything happens (i also have panic disorder and slight agoraphobia lol). i’m terrified of eating because i’ve read that certain foods can trigger it. i’ve lost 15 maybe 20 lbs in the month i’ve been putting up with this. i can’t take any antidepressants because i’m scared it’ll make it flare up and i’ll have nothing to make it stop if it does. every time i stand up i feel like i’m going to pass out because all i can’t manage to eat is one plain chicken tender a day, or maybe some eggs. my body needs nutrients so bad, but im too scared that i’m going to trigger the RLS if i eat something that has too much of a trigger in it.
i don’t want to take any dopamine agonists along with my gabapentin because, to reiterate, i’m literally TERRIFIED of the RLS becoming worse. that leaves me with nothing else.
i sit here all day and research and research because when i try to distract myself, my anxiety kicks in and the RLS is all i can think about. i feel obligated to find out what’s wrong with me and how i can fix it.
i guess my questions are what foods should i be okay to eat? that’s the biggest thing, i need to eat so bad. and does anyone have any kind of medication recommendations? i know a lot of people take horizant for RLS instead of gabapentin, but will it work all day? oh, and i’m trying to work up the courage to take wellbutrin, but i’m scared. i’ve been on it before, and i don’t remember how i reacted, but i need it to work for the anxiety and the depression without worsening the RLS. anyone have any experience with it?
Written by
mmjxc
To view profiles and participate in discussions please or .
I really feel for you. The stress you are putting yourself under is barely possible to comprehend.
You have done a huge amount of research, but sometimes that is not a great thing. The internet is full of discharging frustration and anger and spite. It can be difficult to sort it all out and make sense of all the often conflicting views.
A couple of things to consider with RLS.
Everyone is different.
Everyone has different triggers.
Everyone reacts differently to medications.
Your project is to find your own level.
Keep a food diary- including ingredient lists.
Diet-- at the simplest level -- avoid processed foods. Eat simple pure meats, veg and fruit- unless ,of course, you have a sensitivity to anything.
Some people find the Fodmap scheme helps them. ( Elimination diet)
I'm not qualified to advise on medications. I'm on opiates-- very successful, but not available to everyone.
You are probably on the right path with alpha2 ligands. Horizant is the best-- smaller dose required- less side effects.
I hope this helps a little bit.
Stress is a potent trigger for RLS, but not much point in telling you to chill!
thank you! i’ll try the food diary and see what i can’t do. currently i’m eating baby food to see if i can handle that, and i made sure it’s all natural ingredients. and yes, the stress is a definite trigger, but i already have multiple anxiety disorders so it’s close to impossible to manage sometimes, especially since i’m not on anything for it. it’s just been a pretty crappy time. i really appreciate the response!! no one ever responds on the subreddit i read, it’s really frustrating.
I can understand your worry regarding augmentation. I tried gabapentin and was taking as much as 900mg 4 times a day. Initially RLS was repressed and to a degree controlled, but eventually it won. To cut a long story short I have been on Pregabalin for 2+ years - max 300mg per day and my life is so much batter. Alongside Pregabalin I am prescribed Trazadone 50 /75mg each day.
I am able to take the 300mg of daily Pregabalin , in 50, 100 and 150mg tabs. This allows me the ability to vary so that I can , say take for example, 50mg early morning, 100mg about 4/5pm, and 150mg at night. Alternatively, I could move the morning 50mg to another part of my day, then take 250mg at night, or totally ignore the 50 and 100mg dose, and just take 300mg at night.
RLS never keeps to a fixed pattern. Regarding food and alcohol in take. I never drink spirits and keep wine to a max 2 glasses. Red wine sometimes 1 glass if it is a full bodied wine, Beers/cider 1 pint a day. Food I love it and haven't recognized that it triggers RLS. Quite often I awake in the early hours (not due to RLS) and listen to music for 40 mins and enjoy a cup of tea. Sometimes I will eat a small banana and strange as may sound, I think it helps me to get back to sleep.
I have never experienced augmentation taking Pregabalin (yet!).
Hi, I'm really so sorry to hear about your distress.
I fully agree with Madlegs' comments.
I do have some thoughts on what you write which I hope you find helpful.
The first is that perhaps you need to prioritise what your needs are. I fully appreciate that the physical symptoms you're experiencing are not insignificant and are causing distress. However, your stress levels are themselves not insignificant and may in fact be a major contribution to your physical symptoms.
It might be worth considering then whether it's more important to deal with your anxiety/depression as a matter of priority as it appears your decisions are driven more by anxiety than by reason.
A reduction in anxiety levels may not only reduce symptoms but will enable you to cope with them better.
I do know that the RLS Foundation do suggest that if an antidepressant is necessary then it should be considered despite any adverse effects on RLS.
My second thought is based solely on what you write and I accept that there may be other details which you don't mention so I can't know.
I note you say you take gaba 3 times a day because it wears off super fast. Unless there is something unusual about your metabolism the "half life" of gaba is between 5 and 7 hours. Which although not slow, isn't really super fast. This does suggest that 300mg each dose may not be enough.
However, it also suggests that you get symptoms throughout the day. You don't say if they are equal throughout the day or if they're worse at some times rather than others.
You also mention muscle spasms and aches. These do sometimes occur with RLS, but if they're the only symptoms you have, then this isn't RLS.
The prinicpal defining characteristic of RLS is the "urge to move". In addition this usually occurs only in the evening or is worse in the evening. Even if it does occur throughout the day then when symptoms are very severe, the worsening in the evening or night may not be noticeable but must have been previously present.
It may be worthwhile then that you confirm that you do actually have RLS and you can do this by comparing your symptoms to the RLS diagnostic criteria.
As regards vitamin D, there is some evidence that suggests correcting a vitamin D deficiency, if you have one, can reduce RLS symptoms.
Ferritin, ideally should be at least 200 ng/mL If yours is as high as that then you may benefit from IV infusions to raise it higher, which may work in 60% of cases.
Ferritin levels however, can also be skewed i.e. due to inflammation. If you have any inflammation, which you may not be aware of this may be skewing your ferritin level and inflammation is also a factor in RLS.
This is where diet comes in as there may be specific things in your diet that are causing inflammation. It's a matter of elimination to find out what they may be but the most common factors are
High carbohydrates - especially sugars
Oxalates
Gluten
Lactose
An "anti-inflammatory" diet may be generally helpful.
i think i’m going to try wellbutrin for the depression and anxiety once i have the 1200 mg of gaba going, just in case. i really hope it works. i’m sensitive to meds and starting new ones is always a process for me, and it’s always scary.
before i started the gabapentin, the symptoms were all day i believe (kinda blocked it out because it’s a terrible feeling), and then it was HELL at night. i had to walk around or stand in one place and rock from leg to leg. i would do that until i was tired enough to sit down and pass out for a couple hours. it started going into my arm (the right one) and i think that’s when i contacted my doctor about the gabapentin.
the reason i say “super fast” is because i guess my body metabolizes drugs a little more quickly than other people’s bodies do. i take the gaba at 10 AM, 3:30 PM, and 9:30 PM. then it takes about an hour to really kick in, and i get maybe 4-5 more hours to enjoy the symptoms being dulled down a little (if it’s a better day, if it’s not that’s where the “super fast” comes in).
after the gabapentin, the worsening at night became less noticeable, but it’s still hard to not focus on the weird uncomfortable feeling enough to relax and go to bed :/
the PCP prescribed 10,000 IU of vitamin D once a week, i'm trying to not psyche myself out over possible side effects so i can actually take it.
the lab results were:
-RBC: 5.2 m/uL
-HGB: 15.9 g/dl
-Hematocrit: 48%
-Serum Ferritin: 232 ng/ml
-TIBC: 286 ug/dL
-Iron Saturation: 15%
-Serum Iron: 43 ug/dL
-UIBC: 243 ug/dL
everything was pretty much normal on this lab test, but i went to an endocrinologist to rule out any thyroid or adrenal problems and he did a full iron panel. his results weren’t sent to me, but he said my RBC was too high, hematocrit was too high, and the iron saturation was too low (seeing him in December, so glad i have to wait :)) so my mom’s convinced i have hemochromatosis and wants me to see a hematologist just to make sure nothing is wrong there.
i keep seeing on the internet that sugar, carbs, and sodium are all bad and can trigger RLS. does this mean all sugars, carbs, and sodium? or are naturally occurring ones okay? my grandma is a nurse and my grandpa is a doctor, so they’re extremely worried and they keep telling me my body needs these things to operate, and that i can’t keep not eating fruits and vegetables because they have carbs or sugar or something in it. i’ll look into the anti-inflammatory diet you mentioned, maybe i’ll have luck. also, i forgot to mention, but i brought up the possibility of inflammation throwing off my blood work with my grandma earlier this week, and she agreed it’s a good possibility. some other stuff was a little weird on there, so i guess we’ll see.
Hi again, it seems to me that your RBC count, Hgb and hematocrit are in normal limits. Your serum iron seems too low for hemochromatosis. Your transferrin IS very low and this also seems to exclude hemochromatosis.
High ferritin and low transferrin does appear to point to inflammation.,
A certain amount of carbohydrates is necessary in a balanced diet, but a low amount is better as are CHOs of a low glycaemic index.
High fibre vegetables are better than starchy vegetables e.g. potatoes.
Potassium is more of a factor in RLS than sodium.
As regards gabapentin, as I'm guessing you live in the US, gabapentin enacarbil (Horizant) is reputed to be better than gabapentin (Neurontin). Alternatively pregabalin (Lyrica) is more potent.
yeah, i’m not really convinced i have hemochromatosis. she’s just worried, so i’ll go and see another specialist, lmao.
so less potassium is good? i mean, i’m keeping an eye on all the food labels and making sure i’m not eating tons of anything (when i can eat). just making sure.
and yep! unfortunately i do live in the US, which is a big contributor to my anxiety and depression at the moment. i’ve looked at Horizant and Lyrica, and i’m very strongly considering the switch. i’ve seen some people on here struggle with augmentation on Lyrica, do you know anything about that?
i’m sorry for asking you so many questions you just seem very knowledgeable and experienced in the subject!!
As regards potassium, it's low potassium that's associated with RLS NOT high potassium. It's usually people with kidney disease that suffer RLS because of this and for them, taking. extra potassium helps.
Normally however, doing that may not help.
Regarding augmentation, this is associated with dopamine agonists such as pramipexole, ropinirole or rotigotine.
The alpha 2 delta ligands gabapentin, gabapentin enacarbil or pregabalin rarely cause it. They are now recommended as first line treatments.
It's recommended that dopamine agonists are avoided.
Good replies from madlegs, doversoul and manerva. I have noting much to add. Only my sympathy for your difficult situation. And to start eating. Simple unprocessed foods as madlegs says are the way to go. To be cooked by yourself. That action may even take your mind off things a little. I hope you get better soon.
It sounds like you are having such an awful time of it right now. I'm really sorry you are suffering so much.
I just wanted to ask one thing re the anti-depressants. Have you looked at Trazadone? I was prescribed this as a safe drug for RLS and some studies do show it can help RLS. I decided to come off it after a few nights as I am super sensitive to medication and it just zonked me out too much the next day, but that's not to say I wouldn't have got used to it after a few weeks and it may have been I was also taking codeine as my RLS wasn't under control. But it did make me happy!! And so worked for anxiety. You might have already tried it but just in case... All the best.
I urge you to join RLS.org. I have found it to be the best source of info for the lay person, and they recommend that people with RLS avoid alcohol, sugar, salt, caffeine, nicotine and to that I would add keep a low carb diet because our bodies turn carbs into sugar. Also, there is growing evidence that inflammation may be at the root of RLS, as with many other diseases, so I suggest you take anti inflammatory supplements such as turmeric, ginger, green tea, etc. It is interesting to note that all the foods that RLS.org recommends that you avoid , listed above, all cause inflammation. I also recommend that you get tested for food sensitivities and allergies, and also get tested for SIBO. My RLS was terrible until I was tested and treated for SIBO and now I have no RLS! Hope this helps!
Hi, I'm really sorry to hear how things are with you. One thing that has been stressed by others is the need for a good diet and I would like to emphasis that. We all need a balanced diet and basic fresh food is ideal e.g. fresh vegetables and fruit. I have found that excess, note, excess amounts, of sugar, caffeine, alcohol and salt trigger my RLS. That said I do have one cup of coffee and one cup of black tea every day, no alcohol, no extra sugar and little salt. As has been said, we all react in different ways and you need to find what triggers the RLS. Don't throw the baby out with the bath water!
As for the research take great care in what you read. Yesterday I read a research paper that said Vitamin D was good for RLS and other research paper that said it had no impact on RLS! Listen to those health professionals who know about RLS.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
i hope so too
I'm suffering badly with Pramipexole withdrawal despite help with Temgesic. Any advice please.
Advice please. RLS
Rls advice please :) 
