I am a 35 yr old female who started feeling tingling and warmth in my legs over a year ago. I went to my family doctor a few times and he suspected a possible nerve issue. He referred me to a neurologist, and after a very brief appointment he diagnosed me with restless legs syndrome. He said because my I am anemic and my ferritin was at 10 ug/L (norm 5-272 ug/L) at the time, that was the reason I was having symptoms. I didn’t suspect RLS because I primarily thought you had to have symptoms at night, which I do, but also during the day. I also feel some mild tingling in my arms or nerve twitching in random areas, on occasion. Are these typical symptoms of RLS?
I have been anemic for most of my life, and take iron pills, Ferrous gluconate (320 mg) semi- regularly. After seeing the neurologist I started to take it every day and my ferritin went up to 34 ug/L. The neurologist told me I wanted it to be at 50 or 100 preferably. From reading some of the posts on here, I understand that will still likely not be high enough.
Of note, I have recently been diagnosed with Hashimoto’s thyroid issue. My doctor said I was at the beginning of the illness, as my TPO was 123 kiu/L (<35). I am now on levothyroxine 25mcg.
I also have been recently diagnosed with a vitamin D deficiency. My vitamin D was at 48 nmol/L (75- 250) in July. I started taking vitamin D, magnesium, K2. Last month I had brought it up to 100 nmol/L.
The neurologist prescribed me pramipexole .25mg, for the RLS, which he described as a low, homeo pathic dose. I haven’t taken it yet as the side effects make me nervous. I understand that treating the cause of the tingling/restless legs, is preferred, but I’m not sure where to go from here. I want to avoid taking medication for this if I can, but my ferritin has always been low and my family doctor doesn’t see it as a big issue. When it was at 10 he said it was good.
I am looking for any recommendations you may have regarding my symptoms, medication, and where to go from here. Also, if you have any recommendations on what preferred levels should be that would be appreciated.
Thank you
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Emerick
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Hi this is very brief as just dropping off to sleep hopefully but the one thing you dont mention is the urge to move your legs .When you get the symptoms do you have to pace to try and ease it ? Do you have to get out of bed to walk around so i? Do the symptoms make it impossible for you to sleep as the urge to move is unbearable ?
Someone will be around with a more detailed reply but if there is no urge to move it is not RLS x
I do have an urge to move my legs somewhat. I rub them when they tingle and move them around in bed
Sometimes it makes it difficult to sleep. More commonly though, I wake up because my legs are tingling in my sleep. I find I get most tingling around 7 PM, if I put my legs up when sitting on the couch at the end of the day.
Getting your iron ferritin up to at least 100, and preferably 200, would be a priority.
Until you have exhausted all other causes of your situation, I would avoid medication, especially Dopamine Agonist such as Pramipexol.
BTW, 0.25mg is the max recommended dose for that medication for rls. Only for Parkinson's is it allowable to go higher.
Certainly can not be described in any way a homeopathic dose.🙄😩🤕
I don't know enough about thyroid, but there is an excellent site on HU for Thyroid and I'm sure they will be able to help in that regard.
The regime you are describing for addressing your deficiencies sounds good, maybe with the addition of iron infusions, or a course of Gentle iron every second day with vit C.
You've made a good start and seem to have an awareness of the needs of your body.
Hi, I'm writing in as you basically describe my symtoms. I tried the prami and it made no difference at all to my symptoms. I too was misdiagnosed with rls. When you say twitching do you mean fasculations? I think it's a nerve hyperexcitability. I don't get any relief when moving about (albiet it's less in my mind) nor do I feel the need to move my legs nor do I have any day or night aspect. PM me if required
Yes, I would say they are fasculations. I feel somewhat of an urge to move my legs, but I don’t find it gives me relief when I do either. However, I don’t feel any tingling when I’m walking, always sitting or laying down.
I know this probably won't be shared amongst the site but why don't you try the medication for a few nights. My doctor said it works instantly if it will work and if it doesn't work there is a 90 percent chance it's not rls
It didn't work for me.
I'm trying less stress, no gluten as I think it's a form of neuropathy. My legs were numb when it all started and now it's mainly tingling in the legs.
Hi, excellent advice from Madlegs
The ferritin level necessary to.improve RLS keeps going up and up.
I think most doctors accept it should be at least 50ug/L
Some are saying at least 100ug/L
More recently at least one RLS expert is saying 300ug/L
Brain iron deficiency is apparently THE most significant factor in RLS and it can result from iron deficiency anaemia.
There is evidence that if you have a vitamin D deficiency RLS symptoms will improve with vitamin D supplements.
The same for vitamin B12.
RLS is more associated with excess thyroxine, not deficiency. A factor in this however may be a high Thyrotrophic Hormone level, (TPO?)
As to whether you actually have RLS or not, it sounds dubious. Your symptoms need to match all the diagnostic criteria to be confirmed as RLS. If they don't match ALL, then it's not RLS. Some of your symptoms sound like anaemic symptoms (oxygen starved nerves).
Here's a link to the accepted RLS diagnostic criteria
What do you think? THE principle symptom is the urge to move NOT tingling and warmth.
PLEASE, do not take pramipexole or any other dopamine agonist i.e. ropinirole or rotigotine. If I were to keep a record of the topics members of this forum write about, I believe that terrible consequences of taking these drugs woukd be very common. Including myself.
Pramipexole does have a role to play in helping RLS as a short term measure if it works in a low dose e.g 0.125 mg.
Better however if you need a medication to try an alternative first e.g. gabapentin or pregabalin.
This is especially pertinent if you don't have primary (idiopathic) RLS or even, in fact, don't have RLS at all.
Primary RLS is lifelong, incurable. If you do hsve RLS, it's not certain but it may be secondary i.e. due to anaemia, high Thyrotrophic Hormone or vitamin deficiency. You may not need medication.
I looked at the symptoms and while I do have somewhat of an urge to move my legs, I question if I only do that to find relief. I question whether this really is RLS as my main symptoms are- tingling in legs- now my arms and face on occasion, warmth on occasion, tingling is better with activity, occasional twitches in my hands, etc, arms and legs falling asleep quick when I sit or curl my legs under me. Tingling can be felt at anytime during the day. Sometimes I go to bed fine but the tingling wakes me up.
I’m also exhausted, my hair is falling out, and I have brain fog at times but that is more likely related to my other vitamin deficiencies.
I will not take the pramipexol. I will talk to my dr about another medication, if I feel I need it.
As you recognise there is a difference between wanting to move to relieve discomfort and the "urge to move". The urge to move is difficult to describe to someone who's never experienced it. There seems to be a lack of the right words in the English language, (perhaps in other languages too).
You can see why neurologists or people self-diagnosing RLS sometimes think the symptoms fit that criteria, when actually they don't
It's a pity that such "feelings" can't be somehow recorded, so that a doctor can "play them back" as part of the diagnostic process.
I can only say that the urge to move, is just that, it's nothing else, but I don't think that helps particularly. Having experienced both the RLS urge to move and other reasons for "wanting" to move, I can tell the difference.
Having read your further details, it does seem as if you're suffering some kind of neuropathic disorder NOT RLS. The sensations you describe, where you feel them and when do not fit the RLS criteria.
With tremors or fasciculations you not only get sensations you will also get visible movements. Tremors can be quite large movements whereas fasciculations may be smaller movements, like tics.
In the absence of actual movements, the neuropathy is more sensory that it is to do with motor nerves.
It's not possible to say whats causing your neuropathic symptoms, many things affect the nervous system. It does sound "systemic", that is, affecting your whole body, not just a localalised part of it (e,g, if there were trapped nerves or nerve damage).
Your symptoms have features of iron deficiency anaemia, fibromyalgia, B12 deficiency, hypothyroid, but not clearly any one of those.
I wouldn't settle for RLS as a diagnosis, I think it's something else.
I agree after reading all the comments, that it doesn’t sound like RLS. And yes, it does seem to affect my whole body, not just one part.
My dr has referred me to an endocrinologist for the thyroid issue. Maybe she will have more insight. If not, I may ask to see a different neurologist for nerve tests.
In the meantime though, I will continue to take my vitamins and work on raising my ferritin, B12 (which is in the normal numbers, but I understand still means it could be low), and vitamin D.
Please go to diet doctor. Com. Low carb community on you tube fat emporer, lots of others, they believe metabolic syndrome responsible for a lot of symptoms. Please find and read the evidence it may help, our gut health is a major factor in disease process.
I also have RLS I take ferritin, now embarking on gut health careful diet, no process food, early days but hoping for good results
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