Restless Leg Syndrome

Posted by jimbourg8 @jimbourg8, May 14, 2016

I started having this burning feeling in certain pressure points in my body. Mostly on the elbows, under forearms mostly on my left side ….mostly worse in the late afternoon and evening. It’s usually burning and/or uncomfortable feeling when I am sitting down on couch or chair. the burning sensation like I said on pressure points of the elbows, legs, or butt when sitting even if only 2 mins or so and seems like I can’t remain still…….upon getting up and moving around it relieves the sensation. Went to neurologist 4 years ago……….he confirmed that it was Restless leg syndrome…………there are different types of RLS but the classic symptoms are a feeling of burning, tingling, and a general sense of unable to relax when quietly sitting or even laying down and relief comes when changing position and/or getting up. Diagnosis is by symptoms….there is not a definitive diagnostic test………all bloodwork etc…. is normal . I now take Gabapentin, and Klonopin to calm the “restless” nerves………..there is no cure for this ( my Neurologist says )……..It’s just something you have to learn to live with and take those medications for it……….It is believed there is a link between low iron (which I had) and and RLS . Now I take more iron (but that does not alleivate the symptoms so far . ( even when iron level becomes normal ) . I was diagnosed with low thyroid 5 years ago and started taking the levothyroxine to put my thyroid back to normal which it IS NOW. But even though I still have the RLS……..there is a possiblity that I had LOW thyroid for years before I was diagnosed with it……..hence I think (my theory) the RLS evolved due to the years of LOW thyroid. This is just my thinking on this. No Dr. Told me of that…..anyways I hope maybe this helps others and they can begin to pinpoint their symptoms and get a diagnoses.
I would love to know others with RLS and how they have dealt with it over the years. It seems to be a tricky act to balance the medications with side effects and still manage the RLS……..appreciate any feedback. Thanks Jim B.

@lioness, I faithfully take Vitamin D, Calcium, and Magnesium. Every day. Very important, along with a vitamin tablet. Happy holidays!

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@mamacita

@lioness, I faithfully take Vitamin D, Calcium, and Magnesium. Every day. Very important, along with a vitamin tablet. Happy holidays!

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@mamacita Good for you thats needed we lose alot as we age drat it Merry Christmas Happy New Year to you also.

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I have RLS. Sometimes when it happens, I have to get up, walk around, have a snack, it’s the distraction that helps I think. Drinking tonic water also helped as it contains Quinine. I’m on Clonazepam and sometimes take an extra dose if symptoms are bad. Only happens at night and only rarely now. I saw Neuro for headaches and falling down but not RLS. Headaches and falling were medication related. Hope this helps.

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Thanks for sharing your experiences with restless legs. I know that while it is good to have a firm diagnosis about your condition (at least it was for me), it is also disconcerting to not be able to sit still or fall asleep. In fact, in my case, my symptoms have progressed & worsened over the years & it interferes with my life significantly. I have struggled with mine for about the last 30 years; but, I hasten to add that at first the symptoms were minor and only occurred when I was tired and in a place where I couldn’t go to sleep (like a meeting, concert, had company, etc.). So, while uncomfortable, they did not occur daily. My restless legs manifest a bit different than yours, in that as they have worsened over time, right now the feeling is akin to being shot full of adrenaline and/or almost as if I’ve been electrified from my inner core all the way outward to my outer limbs. So, my whole body Is then unable to sit or lay still…I was unable to sit in a car for longer
than 5-10 min., be in a meeting, etc. Presently, without medication, I’m unable to sleep at night, and am only able to falll asleep at about 5:00 am for an hour or two & rest of night I am walking, walking & even jogging or running since the symptoms are so severe, I try any & everything to get some relief.
I know this all sounds so dire, but it hasn’t been just suffering all those years. What I’ve found is that different medications work for a while, and they do alleviate the symptoms. The two medications that were most successful for me in the past are: Gabapentin & Requip. I’ve also tried extra magnesium, B vitamins, some sleeping medications, & like you Klonopin,but also Ativan, & Compazine. Requip worked for nine years, but then I started needing to increase the dosage. At first it was every three months but over the course of a year it became every two weeks. Each time I increased I had pretty negative side effects, which were severe headaches, nausea, vomiting,dizziness, and sometimes fainting. Once those symptoms started to decrease a bit, so did the effectiveness of the drug. So it became a vicious cycle of increasing dosage and feeling horrible the next day. Then, I sought advice from Mayo Sleep Center. They gave me lots of helpful information including the low iron connection with the restless legs. I too am now taking iron to alleviate that, however, even when my iron is higher and in the range it should be, I still have restless legs. I also learned that the medication I was taking (Celebrex)for depression aggravate my restless legs, so at my Sleep Center doctor’s recommendation, I switched to Wellbutrin, which is reported to be the only one that seems to not do that. I also take a small amount of Klonopin in the morning, .25 mg ( I cut a .5 mg tablet in half since .25 is not a dosage that it normally comes in. ). I also have fibromyalgia, and also saw the doctors at Mayo in that department also. I learned that for me, I am sensitive to many medications, and that tends to be somewhat the norm for people with Fibro. Many medications such as the anti-anxiety ones I listed, sleeping & pain meds, and even some antibiotics will make my restless legs much, much worse. The worst one I have ever taken is Trazodone, and after taking one pill, I was up for literally two days straight. I’ve also found when I list those drugs as ones that I’m sensitive to on forms from medical facilities (in the space for allergies & sensitivities), not all doctors, nurses or hospitals take it seriously. I’ve run into this when I’ve had surgeries. So, I’ve needed to be firm about what I can & cannot take. Initially, at Mayo, they gave me Gabapentin, which worked for a while, but not to the extent that it completely eliminated my symptoms at night. So the dosage was increased over a period of 3 to 6 months. At one point I was taking 1800 mg, but it affected my memory and my thinking was so fuzzy that we stopped that. I would sometimes even forget what people have told me in the middle of conversations with them.
Currently, since the restless legs can begin for me as early as three or 4:00 PM, I take one 400 milligram tablet of gabapentin at 4:00 pm & that keeps them from starting the jitteriness. I’ve also just started taking a new medication called Neupro which is a transdermal patch. I’ve been taking it for about 2 1/2 months now and I’m able to sleep 4 to 6 hours per night, which is wonderful. I also take 1-2 Gabapentin @100 mg each if I waken in night. This is the most I’ve slept in five years.
I also have learned I need to stop using any caffeine or any alcohol after 3:00 pm….if I have any at all, it doesn’t necessarily start restlessness right away, but by 6:00 or 7:00, it becomes pretty severe & lasts through the night.
This narrative got really long, but I wanted to share some symptoms with you in the event that yours worsen or you have similar ones. As you know, not everyone has the same reactions & symptoms, so perhaps yours won’t be the same as mine…but maybe some of same meds will work. I also wanted to make sure to convey a sense of hope that there is a medication that can work for you, but sometimes it takes trying different things to find it. Also, when I sleep more hours nightly, I feel like a different woman the next day. Not having enough sleep affects both physical and emotional well-being. So, If you don’t get enough sleep and feel unable to cope with life very well the next day, or your body aches & you have no energy, there is a reason for that.
Lastly, I believe that my restless legs were inherited, since my father had symptoms also. However, he died at the age of 60 years old. That was in 1979, and at that time, no one had recognized restless legs as a “real condition.” I remember him pacing the floor at night, especially during harvest season when he was driving tractor and a combine until late at night. So, I think his symptoms worsened when he was overtired also. I also think, although that’s been so long ago, and she didn’t talk about it much, that my paternal grandmother also had restless legs. She didn’t call them restless legs, but she talked about walking the floor and not being able to sleep at night.
I think this is a good forum to share our symptoms, but also a sense of hope with what has worked and Not worked for each of us. I know that for me, many people (including the first neurologist I saw in the 1990s) who have sleep apnea or insomnia have tried to compare their symptoms to mine as being are similar. And, they think believe if I used s CPAP machine, I’d do better. However their leg movements while sleeping at night are not the same. I’ve had a total of four hours sleep studies over the past 10 to 15 years and none of them have indicated that my oxygen levels dropped like those with sleep apnea. So, sometimes people will sympathize with you and offer what has worked for them as the cure all for you also, but it isn’t always the case. While I appreciate their concern, I also am sometimes frustrated by their belief that this is the answer for me also. Restless legs are so much more complicated than that easy answer.
I hope this helps….If any of my story, long as it is, raises questions about your situation and how you’re feeling I’ll be glad to post anything that might help you. Good luck.

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@flyingfree53

I have RLS. Sometimes when it happens, I have to get up, walk around, have a snack, it’s the distraction that helps I think. Drinking tonic water also helped as it contains Quinine. I’m on Clonazepam and sometimes take an extra dose if symptoms are bad. Only happens at night and only rarely now. I saw Neuro for headaches and falling down but not RLS. Headaches and falling were medication related. Hope this helps.

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Thanks for sharing your experiences with RLS….getting up & walking will help, & so will a snack. Sometimes those help for awhile but it doesn’t always last. Drinking tonic water has helped so many people, but it hasn’t me. Interesting how different we all are isn’t it? I didn’t know About the connection between Falling and Neupro….thank you for sharing that info. I heard about that medicine from someone else who had success, so I asked my doctor about it. I know that it also has a side effect of needing to take more to get the same results after a period of time. That happened with Requip for me so I am holding my breath that it doesn’t happen with this medication. So far I’ve experienced some dizziness at the beginning, but I haven’t had any incidents of falling. I’m glad to know about it though So that if it occurs I’ll know what the cause is. Again thank you very much.

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@suecreader

Thanks for sharing your experiences with restless legs. I know that while it is good to have a firm diagnosis about your condition (at least it was for me), it is also disconcerting to not be able to sit still or fall asleep. In fact, in my case, my symptoms have progressed & worsened over the years & it interferes with my life significantly. I have struggled with mine for about the last 30 years; but, I hasten to add that at first the symptoms were minor and only occurred when I was tired and in a place where I couldn’t go to sleep (like a meeting, concert, had company, etc.). So, while uncomfortable, they did not occur daily. My restless legs manifest a bit different than yours, in that as they have worsened over time, right now the feeling is akin to being shot full of adrenaline and/or almost as if I’ve been electrified from my inner core all the way outward to my outer limbs. So, my whole body Is then unable to sit or lay still…I was unable to sit in a car for longer
than 5-10 min., be in a meeting, etc. Presently, without medication, I’m unable to sleep at night, and am only able to falll asleep at about 5:00 am for an hour or two & rest of night I am walking, walking & even jogging or running since the symptoms are so severe, I try any & everything to get some relief.
I know this all sounds so dire, but it hasn’t been just suffering all those years. What I’ve found is that different medications work for a while, and they do alleviate the symptoms. The two medications that were most successful for me in the past are: Gabapentin & Requip. I’ve also tried extra magnesium, B vitamins, some sleeping medications, & like you Klonopin,but also Ativan, & Compazine. Requip worked for nine years, but then I started needing to increase the dosage. At first it was every three months but over the course of a year it became every two weeks. Each time I increased I had pretty negative side effects, which were severe headaches, nausea, vomiting,dizziness, and sometimes fainting. Once those symptoms started to decrease a bit, so did the effectiveness of the drug. So it became a vicious cycle of increasing dosage and feeling horrible the next day. Then, I sought advice from Mayo Sleep Center. They gave me lots of helpful information including the low iron connection with the restless legs. I too am now taking iron to alleviate that, however, even when my iron is higher and in the range it should be, I still have restless legs. I also learned that the medication I was taking (Celebrex)for depression aggravate my restless legs, so at my Sleep Center doctor’s recommendation, I switched to Wellbutrin, which is reported to be the only one that seems to not do that. I also take a small amount of Klonopin in the morning, .25 mg ( I cut a .5 mg tablet in half since .25 is not a dosage that it normally comes in. ). I also have fibromyalgia, and also saw the doctors at Mayo in that department also. I learned that for me, I am sensitive to many medications, and that tends to be somewhat the norm for people with Fibro. Many medications such as the anti-anxiety ones I listed, sleeping & pain meds, and even some antibiotics will make my restless legs much, much worse. The worst one I have ever taken is Trazodone, and after taking one pill, I was up for literally two days straight. I’ve also found when I list those drugs as ones that I’m sensitive to on forms from medical facilities (in the space for allergies & sensitivities), not all doctors, nurses or hospitals take it seriously. I’ve run into this when I’ve had surgeries. So, I’ve needed to be firm about what I can & cannot take. Initially, at Mayo, they gave me Gabapentin, which worked for a while, but not to the extent that it completely eliminated my symptoms at night. So the dosage was increased over a period of 3 to 6 months. At one point I was taking 1800 mg, but it affected my memory and my thinking was so fuzzy that we stopped that. I would sometimes even forget what people have told me in the middle of conversations with them.
Currently, since the restless legs can begin for me as early as three or 4:00 PM, I take one 400 milligram tablet of gabapentin at 4:00 pm & that keeps them from starting the jitteriness. I’ve also just started taking a new medication called Neupro which is a transdermal patch. I’ve been taking it for about 2 1/2 months now and I’m able to sleep 4 to 6 hours per night, which is wonderful. I also take 1-2 Gabapentin @100 mg each if I waken in night. This is the most I’ve slept in five years.
I also have learned I need to stop using any caffeine or any alcohol after 3:00 pm….if I have any at all, it doesn’t necessarily start restlessness right away, but by 6:00 or 7:00, it becomes pretty severe & lasts through the night.
This narrative got really long, but I wanted to share some symptoms with you in the event that yours worsen or you have similar ones. As you know, not everyone has the same reactions & symptoms, so perhaps yours won’t be the same as mine…but maybe some of same meds will work. I also wanted to make sure to convey a sense of hope that there is a medication that can work for you, but sometimes it takes trying different things to find it. Also, when I sleep more hours nightly, I feel like a different woman the next day. Not having enough sleep affects both physical and emotional well-being. So, If you don’t get enough sleep and feel unable to cope with life very well the next day, or your body aches & you have no energy, there is a reason for that.
Lastly, I believe that my restless legs were inherited, since my father had symptoms also. However, he died at the age of 60 years old. That was in 1979, and at that time, no one had recognized restless legs as a “real condition.” I remember him pacing the floor at night, especially during harvest season when he was driving tractor and a combine until late at night. So, I think his symptoms worsened when he was overtired also. I also think, although that’s been so long ago, and she didn’t talk about it much, that my paternal grandmother also had restless legs. She didn’t call them restless legs, but she talked about walking the floor and not being able to sleep at night.
I think this is a good forum to share our symptoms, but also a sense of hope with what has worked and Not worked for each of us. I know that for me, many people (including the first neurologist I saw in the 1990s) who have sleep apnea or insomnia have tried to compare their symptoms to mine as being are similar. And, they think believe if I used s CPAP machine, I’d do better. However their leg movements while sleeping at night are not the same. I’ve had a total of four hours sleep studies over the past 10 to 15 years and none of them have indicated that my oxygen levels dropped like those with sleep apnea. So, sometimes people will sympathize with you and offer what has worked for them as the cure all for you also, but it isn’t always the case. While I appreciate their concern, I also am sometimes frustrated by their belief that this is the answer for me also. Restless legs are so much more complicated than that easy answer.
I hope this helps….If any of my story, long as it is, raises questions about your situation and how you’re feeling I’ll be glad to post anything that might help you. Good luck.

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@suecreader Sorry about all your conditions you have to do what works for you I found things that work for me but that doesn't mean it will work for everyone I apologize if you took it the wrong way

Liked by Lisa Lucier

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@lioness

@suecreader Sorry about all your conditions you have to do what works for you I found things that work for me but that doesn't mean it will work for everyone I apologize if you took it the wrong way

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Oh no, I was not at all objecting to anything you have posted or said. . . . in fact, what you've shared has been helpful to me. Instead, if I've said something in the above post that sounded like I differed from you, that is not at all what I meant to impart. It seems my issues with restless legs and then fibro have gone on so long that I can get lost in the telling, and perhaps I inadvertently shared some past experience or present opinion that seemed at odds with yours. I did not intend that at all. I think shared wisdom is wonderful – that is why having this forum to bounce ideas off each other and share hope and experiences is so great. I notice that you've done that with many other people besides me. I do recall you saying you enjoyed helping other people, and believe me you are.

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@suecreader

Oh no, I was not at all objecting to anything you have posted or said. . . . in fact, what you've shared has been helpful to me. Instead, if I've said something in the above post that sounded like I differed from you, that is not at all what I meant to impart. It seems my issues with restless legs and then fibro have gone on so long that I can get lost in the telling, and perhaps I inadvertently shared some past experience or present opinion that seemed at odds with yours. I did not intend that at all. I think shared wisdom is wonderful – that is why having this forum to bounce ideas off each other and share hope and experiences is so great. I notice that you've done that with many other people besides me. I do recall you saying you enjoyed helping other people, and believe me you are.

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@suecreade This is a bad day for me so I misunderstood Yes I try to help where I can Im a retired nurse so have knowledge I share thanks I hope I do have a goodnight

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@lynnkay1956

I was tested for restless leg syndrome. My dr asked if I was taking antihistamines ( which I took on and off). For me-every time I took BENADRYL my legs would get ‘restless’ and my muscles would tighten and cramp up. By not taking it I was fine. Odd huh!! Lynn

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Interesting Lynn! This happens to me too when I take Benadryl…..many people don’t believe that it isn’t helpful for me since it makes them drowsy. I think it might go back to the fact that we are all so different, and some of us are sensitive to certain drugs and others are not. This is what makes dealing with RLS so confusing and complex, at least for me.

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@suecreader

Interesting Lynn! This happens to me too when I take Benadryl…..many people don’t believe that it isn’t helpful for me since it makes them drowsy. I think it might go back to the fact that we are all so different, and some of us are sensitive to certain drugs and others are not. This is what makes dealing with RLS so confusing and complex, at least for me.

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@suecreader @lynnkay1956 Benedryl and drugs containing that chemical such as the PM drugs absolutely get my legs kicking and feet flapping. I understand this is Periodic Involuntary Limb Movement (PILM) which is connected to RLS but it is definitely different and very weird.

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@pcka

I have had severe restless leg syndrome for 30 plus years. I’m taking Parkinson’s pills and gabapentin for nerve pain. Neither drug is working any more I’m at the point that I hate going to bed, it also is severe when I sit or lay on couch. Has any one tried stem cell therapy for treatment? Thanks for replies

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I tried Neupro which is a transdermal patch. It does have some side effects like headaches, dizziness, and some nausea, symptoms that became milder after 1-2 weeks. It’s a rather expensive drug, even with insurance, but I’ve slept all night long more nights than not for the first time in 10 years. I was only getting 1 – 2 hours of sleep per night. Again, everyone is different, but it’s worth a try. I was at the point where I would do anything to get some sleep. I wasn’t able to drive since I would drop to sleep involuntarily, and I was unable to stay the night away from home at all Since I would need to walk almost all night long, and sometimes I even would run through the house, as crazy as it sounds, to try to get rid of the symptoms since they intensified through the night

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@dizzydaisy

There has got to be a nerve (that is worthless) they can snip and make RLS go away. I fight this everyday and getting aggravated as over the years it just keeps getting worse, like the neurologist stated. I am contemplating a pain stimulator, as I have other aches too. I really doubt it works. I am also checking into Mayo’s RLS study. Desperately wanting help!

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I totally understand your feeling of wanting to do almost anything to get relief. You probably already figured this out, but for me, as I get older my restless legs become more pronounced as well. I believe I had them as far back as when I was 10 or 11, but they were very intermittent and diagnosed as “growing pains“. I am now 67 years old, and have gone through a gamut of medications. Right now I am taking a transdermal patch called Neupro which I mentioned in a post to someone else…so perhaps you have already read about it there. It’s in the same category as Requip, but so far is providing much needed relief. Someone told me about it, so I asked my doctor. This is what is good about sharing ideas and hope for those of us with restless legs.

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@degarden_girl

@suecreader @lynnkay1956 Benedryl and drugs containing that chemical such as the PM drugs absolutely get my legs kicking and feet flapping. I understand this is Periodic Involuntary Limb Movement (PILM) which is connected to RLS but it is definitely different and very weird.

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Thanks for that information & validation degarden-girl. I’ve read about periodic involuntary limb movement, And I always forget to ask my doctor if I also have that in addition to restless legs or if it is indeed PILM. Thanks for the reminder.

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@suecreader

Thanks for that information & validation degarden-girl. I’ve read about periodic involuntary limb movement, And I always forget to ask my doctor if I also have that in addition to restless legs or if it is indeed PILM. Thanks for the reminder.

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@suecreader Hmmm, interesting as I was told I had "growing pains" when I was young. And Sue, I think your RLS is far worse than mine. My Mom had RLS and her symptoms were far worse than mine or what any of my sisters are experiencing (but we all started on the higher doses of Vit D when the RLS presented its ugly head). I am 74 and the actual RLS thing probably started about 8 to 10 years ago and the PILM more recently. The PILM isn't a problem if I don't take Benedryl or the PM drugs or more than a nibble of Ambien. Interestingly, I also have some "restless finger syndrome" in which one finger will start to move or maybe that is part of the PILM symptoms. The finger movement is just kind of interesting, not a sleep problem but I am sure it is connected.

I hope the Neupro continues to work for you and that the side effects become minimal. I think as more and more people speak up about their experiences with RLS, medical science will find a cure. But for so long, it has been minimized as unimportant. I remember three male friends laughing about restless legs and I want to tell you, I educated them on the seriousness of the condition. They were laughing at the name as it certainly doesn't convey how unpleasant and life altering the condition is to those of us who have it.

Liked by lioness

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Thank you so much for taking the time to post this encouraging reply. It certainly does help to hear about your experiences, and I especially appreciated the story about the three people laughing at the diagnosis of restless legs. I’ve had that happen too, just as I have with the diagnosis of fibromyalgia. So many people, and ones who I would think have enough knowledge to not react this way have made statements indicating that they think this is a made-up condition or diagnosis. I’m glad you set those people straight and educated them. When suffering from lack of sleep it’s sometimes difficult to not be frustrated at lack of understanding of others. I was also interested to hear about your mom also having restless legs as well as you and your sisters. I am an only child, and I believe my father had them also, but there was no firm diagnosis of RLS years ago. He passed away from a heart condition when I was 28 so I’ve been inable to ask him questions about his symptoms. Ultimately though what matters is what works for us to get relief. You’re the second or third person who have mentioned vitamin D, and I am glad of the reminder so that I will ask my doctor about that also. The iron connection & taking more iron hasn’t seemed to give me much relief….interesting that she (the doctor) hasn’t suggested Vitamin D.

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