Sleepless in Michigan

[Smaslow]

Hi, my name is Shirley and I just joined this forum in hopes togethelo for RLS. I CMGFL exhausted . Ivette an average of about 5 hrs a week of solid sleep. I am a walking zombie ! My legs never stop aching and my energy level is 0. I don’t know who to turn to. I have RA and am taking Humira and methotrexate to control the flares and it is working well. But my legs are a different story. All I want is to get a good it’s sleep and I need help and advice . I don’t know what to do.

[Hidden]

Hi, Shirley, are you taking any meds for your RLS right now. and if yes, what are you taking and the dose. ?

[Smaslow in reply to Hidden]

Hi Elissa, No, I am not taking anything . I am so desperate to find a remedy. I am Normally an active person but I can barely function a few hrs wo/ having to sit and rest . I was reading that a low iron deficiency can cause RLS . Have u ever heard about that ?

[Hidden in reply to Smaslow]

If you are looking for a natural remedy then they can be hit and miss in working, You need to ask your doctor for a ferritin level test, its a different test to a normal blood test. Then make sure they tell you what your number is from the test, they usually say normal. For RLSers, it needs to be 100+ if its low then taking iron supplements to raise that level MIGHT help,. It doesnt help everyone. but worth trying. Have you had the RLS for long, as in years or a recent happening. ? Some meds can actually set RLS off. This website which is USA based has a list of meds to avoid which can make RLS worse, it also lists med for RLS. when looking at the dopamine meds, as in, Mirapex, Requip, the highest dosage is now not recommended and Dr. B hasnt updated his website rlshelp.org The UK website is rls-uk.org If you look on the right hand side of this page you will see Topics which you might find helpful.

[Smaslow in reply to Hidden]

Thank you so much for this information. I have had the RLS for at least 3 to4 years. Jam going to the Dr on Tuesday so I will ask for this test thank you . I am going to research the site you mentioned to check if any of my meds are listed . I appreciate your help.

[Smaslow in reply to Hidden]

Elise , what website will show me meds that cause RLS . I’m having trouble finding it

[Hidden in reply to Smaslow]

This one. rlshelp.org click on the treatment page on the left hand side and then scroll down to find the list to avoid. Hope that helps.

[Smaslow in reply to Hidden]

I am on one of the listed antidepressants, so Tuesday when I go to dr. and ask for ferritin level test , I will also close into weenie off my antidepressant to see if that helps in any way.

[Smaslow in reply to Hidden]

Hi Elise, I got the results for my ferritin levels and I came in at 32 . The doc also set me up to have a vein ultrasound just to rule out any vein issues that could be causing the RLS. What do you think I should do at this point

[Smaslow in reply to Smaslow]

I don’t mean to sound like you are my dr ,,,lol I just am always open to others opinions and advice. I would always consult a dr ,,, but. Sometimes friends explain things much better. If you know what I mean 😉

[Joolsg in reply to Smaslow]

Hi Smaslow,

Sorry to jump in but you need to get your serum ferritin up to at least 100. 32 is way too low. The ultrasound is only to rule out other issues- peripheral neuropathy etc.

Increase your ferritin by taking gentle iron ( ferrous bisglycinate) every OTHER night ( helps get iron to the brain) and slowly reduce the anti depressant that’s a trigger for your RLS , you should see a big improvement. Holland & Barrett sell it as Gentle Iron. There are other anti depressants that are ok for RLS like Trazodone.

I realise you are very limited in what drugs you can take because of the Methotrexate ( my mum has RA & she can’t take most painkillers/ antibiotics due to interactions).

Discuss with your GP and explain that us peeps with RLS must have our ferritin levels high. (Normal reading for everyone else is anything above 15!).

Magnesium might also help - either pills or Epsom salts bath, or a magnesium spray on the legs and try compression socks from a pharmacy.

Let us know how it goes.

[Smaslow in reply to Joolsg]

Thank you,,, you are so very helpful. I started the iron . I having been weening off my anti depressant for over a year now and this is my second week that I am not taking any . So far so good no withdrawals of any kind. How long do you think it will take for the iron supplements to help w/ stopping the RLS ? I have been taking oxy at night if I am absolutely up and haven’t slept at all . I average maybe 2 and 1/2 - 3 hrs restful sleep a nite .

[Joolsg in reply to Smaslow]

It took me a year to get my iron levels up to over 100 & I did notice an improvement. I notice you mention oxy. Do you take oxycodone? That should help but take it at night before the RLS kicks in.

I suspect you will be someone who gets relief from RLS once you have weaned off the anti depressant which is the culprit.

[Smaslow in reply to Joolsg]

Oxycodone ER 40 mg. These are left over from when I was trying to control my pain for RA as I was trying so many biologics and none were working . I now am on Humira and methotrexate cocktail fit the RA and am no longer in pain. BUT !!!! I am totally exhausted and my legs can’t make if from one room to the other... they ache so bad and run at nite like I am in a marathon. Terrible,, I’m sure u can relate.

[Joolsg in reply to Smaslow]

I can indeed. Let us know how the reduction in the anti depressant goes.

[LotteM in reply to Smaslow]

That is a rather high dose for RLS. Recommended starting dose is 5 mg. That may be too low for you currently, but maybe you could try halving you oxy pills? And see how that works for you. Lower doses have fewer side effects etc.

[Smaslow in reply to LotteM]

Is it ok to break a time released pill in half ?

[LotteM in reply to Smaslow]

Why not. Docs advise against it for no clear reason. But my pharmacist gave me a pillcutting device. And they are the pill-makers. Only thing is that the medicine may not be distributed equally within the pill, so the dose may not be exactly half, but about half. But that will do, I guess.

[Smaslow in reply to LotteM]

Your right , I will try that tonite , cuz I do hate that groggy feeling sometime from too much meds. Thks 💕

[LotteM in reply to Smaslow]

I hope you sleep well! And feel refreshed in the morning. My first night on oxy tonight. 5 mg, no extended release.

[Smaslow in reply to LotteM]

What time do you you think I should take the oxy and also do you take iron supplements ? If so how much and what time of day ?

[LotteM in reply to Smaslow]

Sorry for the late reply - I was askeep!

I take oxy just before bed, because it works pretty fast.m and these days I have only RLS symptoms ar night. I don’t know when your symptoms usually start; it may be best to take the oxy just begore that time. If that is much earlier in the evening or day, you may have to take a second dose for or in the night. It’s all trial and error. Good luck.

[LotteM in reply to LotteM]

Sorry for the typos.

Re the iron. Look up the post on Ferritin levels?? of yesterday and parminters replies. She (?) included this very informative link with good and very reliable info: hopkinsmedicine.org/neurolo...

On that website you’ll find the answers to your iron questions.

[Hidden]

Hi smaslow - Just curious - what is CMGFL ?

[Smaslow in reply to Hidden]

Sorry,,, that was a typo!

[Bajatom]

This change in diet cured my wife's RA:

drmcdougall.com/health/educ...

[Smaslow in reply to Bajatom]

Thank you for the research,,, very interesting , and quite a change in eating habits to be made. I commend your wife for being able to do this. I don’t do dairy , but meat ,,, that’s tuff one for me . I am looking forward to getting the ferritin level test , as I going to my Dr on Tuesday. I am on an antidepressant that is listed as one that can promote RLS and I’m going to chk w/ my Dr on weening off to see if that helps.

[Bajatom in reply to Smaslow]

My serum ferritin goes down to 40 if I don't take an iron supplements. Taking ferrous bisglyscinate at bedtime helps with the RLS. Twenty years ago I was on an antidepressant for a short time and RLS went off the chart. When I finally learned what was going on I went thru Cognitive Behaviour Training and increased exercise and was able to discontinue the med. I went plant based with my wife. It was difficult to give up favorites like cheese and salmon. But we started to feel so much better that I soon did not miss animal foods. We found a dozen healthy plant based meals we liked and cycle through them.

[Smaslow in reply to Bajatom]

May I ask his old you and your wife are. I am 70 , and have always been active , and my like is so different now , like I’m always in a fog from sleep deprivation #1 and lack of motivation to do anything . I just know that this has to stop . I am not at all happy and this is just not me. I will miss fish and chicken which I have been really eating for protein thinking it may give me a bit more energy, but I do love fruit n veg and water. I don’t drink, of smoke ,,, and here comes the bad part I love my desserts!!! But something has to change . Maybe this is God’s way of introducing me to you and your wife through this RLS FORUM and I will re-learn feel better.😉

[Bajatom]

I am 81, my wife 83. We changed our diet slow at first and just cut back on animal products. Then it was only once a week. Then one day we realized we did not need animal products. Yes, my wife likes deserts. Mostly it is fruit but once in a while a soy, almond or cashew based ice cream -- at lunch. At night they make Rest!was Leg worse. I often only get 4-5 hours sleep so nap during the day. Hobbies, art, writing, vege gardening, biking and hiking and astronomy for me keep us motivated. The drMcDougall.com, nutritionfacts.com, and other plant based eating web sites provide info, receipts and support.

[Smaslow in reply to Bajatom]

So if your wife would like a snack at nite what would she have

[Bajatom in reply to Smaslow]

Well, it would be at least two hours before bed time: unsweetened Apple sauce topped with ground almonds or walnuts, baked (in microwave) apples stuffed with nuts and raisins, oat bars or cookies sweetened with dates or applesauce (in place of oil), dates stuffed with walnuts, fresh fruit. Here are numerous deserts all plant based and low or no sugar:

drmcdougall.com/health/educ...

[Smaslow in reply to Bajatom]

Went to get results of blood work and my ferritin level test came back at 32 ... I guess this answers my question as to do I have RLS !!! Now how much and what exactly as far as iron suppliments should I take ... I am do looking forward to sleeping again , you gave no idea 😴😴😴

[Bajatom]

Low serum ferritin is not the diagnosis for RLS. Many people with low ferritin do not have RLS. Read elsewhere on this site of criteria for RLS using the search function. If u do have RLS, getting serum ferritin over 100 may improve or elliviate symptoms. Most docs usually suggest taking ferrous sufate over the counter pills until level is over 100. Long timers posting on this site recommend taking ferrous glycinate at bedtime instead.

[Smaslow in reply to Bajatom]

Interesting,,, my Dr did also schedule a vein ultrasound to rule out any other possible reasons for my symptoms. I guess I just got so excited when She showed me the low level . I’m sure there are other factors to all this . I also have list 12 lbs since my last visit so she has made some adjustments to my meds . For instance, I’m on Crestor, do she cut that dose way down . Increased my turmeric,,, decreased my thyroid med. Andiamos purchAhex. Bottle of melotonine to help w/ sleep . Will see what happens .

[Smaslow in reply to Smaslow]

Sorry for all the typos, the buttons on my phone are so small...

[Bajatom]

Melitonin can make Restless Leg worse in many people. Google restless leg symptoms.: Creepy tingly feeling in legs , worse at night or at rest, urge to move when this happens, better or stops when get up and move around.