May have RLS - Just got ferritin reading - Restless Legs Syn...

Restless Legs Syndrome

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May have RLS - Just got ferritin reading

56_kruiser
56_kruiser

Went to a Pulmonary doctor for another topic, and during discussion, he said I may have RLS. I checked symptoms, and it sounds just like me. Diagnosis is not 'finalized' yet.

I just got results back from getting a ferritin reading, and it came back at 15.5. Says it is low, but does not tell me normal readings. A search I did on Google indicate 12-150 is normal, so maybe I'm not low?

At any rate, I've talked to a friend who has had success with CBD oil. But I find very little here on it, and what I found from UK folks is not positive for CBD, and if you do use it you should get it with THC. I suspect that puts it in the medical marijuana spectrum.

Anyway...hello folks. I'll be lurking around for a bit.

I might add, I am doing a sleep study tonight. I have not felt I had an issue, although I do snore. I don't have trouble going to sleep, but night nights are interrupted 3-5 times a night with waking, sometimes immediate wake up in middle of a dream.

10 Replies
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15.5 ferritin is low by any standard. I would like to see ferritin at least at 50 + and for rls at about 100 +.

See recent post by Manerva for ideas on raising ferritin levels.

Good luck.

Ps- you're right about cbd oil. Without a small bit of tch ,it is no good for pain relief.

56_kruiser
56_kruiser in reply to Madlegs1

Thanks for reply. (I updated my original post about getting a sleep study tonight).

I might say, I don't consider my symptoms for RLS as pain, but is definitely uncomfortable. Legs crossed a couple minutes...then uncomfortable...move them, repeat.

Riding or driving in a car can be quite uncomfortable. Can't go > 1.5 hours w/o getting out to stretch and move around a bit.

UPDATE: Oh I see there are pages of members. I'll just have to page through them.

56_kruiser
56_kruiser in reply to Madlegs1

I just tried to ind posts by Manerva , but no luck. Looking at members, I only see a small number (of which I don't find that name), and search on Manerva did not turn that user up either. I don't see a way to search by user name, but will try exploring some more.

Madlegs1
Madlegs1 in reply to 56_kruiser

Look 2 posts below this one. Bottom of the page.

LotteM
LotteM in reply to 56_kruiser

Or use the search bar and type ‘ferritin’ or/and iron. Lots will come up.

Manerva
Manerva in reply to 56_kruiser

Hi, I do exist :-)

follow this link

healthunlocked.com/rlsuk/po...

From what you write, it's difficult to say if you have RLS or not.

rls-uk.org/diagnosis

To check, follow this link. If you have all the symptoms described then you probably have RLS, if not, then you probably don't.

Even if you do have it, with a ferritin level so low, it may be that all you need to is get it up - meaning iron.

56_kruiser
56_kruiser in reply to Manerva

Hi

Yes, in fact I did find some of your posts and have read them.

I do have those symptoms. But...I don't think I have problems with sleep from it. I have no idea at this point what my legs do during sleep. But, I am constantly fighting discomfort when sitting... constantly needing to change leg position. Bad in car rides. Worse when I lay down. But before bed I've been taking Aleve and don't have trouble going to sleep (I do go to bed late...can't nap during day). But I wake 3-5 times during the course of the night. Again able to go back to sleep fairly quickly.

However I also have diabetes, albeit under very good control (last A1C of 5.6). But I have had it for 29 years. I have been assuming I had neuropathy from the diabetes.

I'm waiting right now at the sleep study location to get in and do that tonight. Well see what that turns you and what the doctor had to say. It's be July 15 before I see him to discuss further.

Initial results of sleep study: This information is from the technician, and have not spoken to the doctor yet.

He indicated that I have > 15 stops/hour. He did not have the total per hour yet. This was immediately after taking the session.

Given that, he scheduled me for a follow-up sleep study where I think they have me use a cpap and hook me all up again.

He also said that it is not a diagnosis, but that my legs did move pretty constantly during the night even during sleep.

My next sleep study is next week on the 19th, My Dr. appt is not until July 15th.

I'm indecisive as to whether or not try to start some OTC oral supplements for iron/vitamin C, or wait until I meet with the doctor.

Sleep study is always interesting but not necessary to a diagnosis of rls. I hope it goes well for you.

15 is VERY low for rls (though ‘normal’ For general public is very wide as you have identified). Rlsers should aim to get their serum ferritin to over 100 and in your shoes I would start a supplement immediately. Most people on here take gentle iron (aka iron bisglycinate) which can be got in Holland and Barrett and some chemists. Eating liver is an even more effective for raising these levels.

Raising iron will improve symptoms in at least 50% of sufferers and given yours is so low I would concentrate on that before resorting to other medication. You will learn a LOT on here and would get good tips for managing symptoms without meds. Some people find CBD oil very helpful even without THC. It doesn’t work for everyone but with trying. Magnesium - as a rub or a supplement - also helps many. Look out for posts from, among many others, Joolsg, Lottem, Madlegs, Raffs, Pam, Elisse, Pippins and Parminter who are extremely knowledgeable and (again) among many others from Graham, Sails, Manerva, etc, etc for additional information.

For further information it is worth looking at the rls section of the Johns Hopkins University Hospital website, the US rls foundation rls.org (which also has an excellent forum), rlshelp.org which is the ebsite of Dr Buchfuhrer, an expert in rls treatment.

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