Total despair with RLS

[Fendersblue1]

Hello there, I'm a 57yr old lady who is no longer able to work (since nov 22 ) over the last few months I've been going out of my mind with what i presume is RLS , I'm getting very little sleep and can't sit still at all, the constant need to keep my legs moving and the building cramp like feeling in my muscles and bones is really making my life intolerable , I've tried a magnesium spray and stretching , walking up and down stairs, massaging my muscles, any advice would be appreciated.

[SueJohnson]

Amitriptyline is a tricyclic antidepressant that makes RLS worse for most. If you are using it for depression, trazodone is safe for RLS. Fluoxetine is an SSRI antidepressant that also makes RLS worse for most.

Is Oxycontin not controlling your RLS? How much do you take.

Have you tried gabapentin which can also help your fibromyalgia?

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Joolsg]

Have you been through the diagnostic criteria? Look at RLS-UK website.Your bio sets out a list of meds. What are you taking, including OTC meds?

All anti depressants can trigger/worsen RLS and low brain iron is a major cause. If it's definitely RLS,

1. Ensure serum ferritin is above 100, preferably 200 ( iron infusions are the quickest route to raise levels).

2. Replace exacerbating meds like anti depressants, anti histamines.

3 If 1 & 2 don't stop/ improve the RLS then try pregabalin. Doses and timing set out on RLS-UK website.

4 If pregabalin doesn't help after 3 months, try a low dose opioid.

Read all you can. RLS isn't taught during medical training and knowledge is poor.

Do NOT agree to take dopamine agonists. They worsen the disease over time, withdrawal is hellish and experts believe they cause permanent damage.

[Typicallygaslit]

I don’t know your story but it seems you have underlying health problems. I’ve just started on Spatone iron water which does seem to be a much safer alternative to any other iron supplements around. I would urge you to try it (every other day). Low iron as a cause of RLS is a well reported problem. Magnesium doesn’t help unless you are deficient which you should test before taking it, in this case it may only be relieving the deficiency not the RLS.

[SueJohnson in reply to Typicallygaslit]

The problem with Spatone iron water is that it only contains 5 mg of elemental iron and one needs at least 65 mg.

[Typicallygaslit in reply to SueJohnson]

I suppose so but I don’t personally tolerate 65 so I’m hoping this would make a difference over time. But i’m not too hopeful since I clearly have some issue metabolising iron and it may not override the other problems anyway.

[SueJohnson in reply to Typicallygaslit]

An Iron patch is a possibility or 190 mg Sodium feredetate liquid iron contains 27.5 mg elemental iron or 125 mg liquid ferrous sulfate has 25 mg of elemental iron .

[Typicallygaslit in reply to SueJohnson]

I’ve never heard of iron patches. But it’s not the stomach I’m worried about, it’s the amount of iron that I don’t tolerate. Too much iron aggravates the RLS. I know this is unusual but that seems to be the problem. There are many other things I also don’t tolerate that are unusual even for people with RLS.

[SueJohnson in reply to Typicallygaslit]

That's why I thought you might tolerate the 25 or 27.5 mg of elemental iron rather than 65 mg.

[Typicallygaslit in reply to SueJohnson]

I don’t know, I have not found any acceptable liquid iron in the UK, they are all full of stuff that I don’t tolerate. Ferrous fumarate 210 was ok until I reached 70 ferritin, after that I could no longer take large doses and quartered the 14 mg tablets I had so it was actually less than 5 mg per day. I’ve heard rumours that this could sometimes be a problem i.e the body may no longer absorb the iron once it’s reached 70-80. I will try different doses but it’s a long process of observation (since there are many variables to take into account). I’m currently trying to see whether the 5 mg per day in the form of the water is ok or not.

[Graham3196 in reply to Typicallygaslit]

Is there any reason why you dont recommend Typicallygaslit to go straight to an iron infusion? I am presuming that the iron gives him problems while its in his gut somewhere but it will be alright once it's distributed throughout his blood. Is this presumption wrong?

[Typicallygaslit in reply to Graham3196]

I don’t think anyone has a clear answer to this. They would not give me an iron infusion in the UK for a start unless I paid for it myself. Second, the problem is that the body doesn’t necessarily like have a lot of free floating iron and it may be the hepcidin that tries to put an end to it. It could also be that the iron overstimulates the dopamine receptors. I’m assuming this is the problem since I don’t tolerate anything that stimulates dopamine. There is some anomaly there. In other words, the problem may not just be that of absorption but also of metabolisation.

[SueJohnson in reply to Typicallygaslit]

What you can do then is just take more of the Spatone. Twice the usual amount would give you 10 mg or 3 times 15 mg etc.

[Typicallygaslit in reply to SueJohnson]

Thanks, that does seem to be a reasonable idea, it’s not so cheap but so far I haven’t had any obvious issues with it. Would 3x day i.e. 15mg be a good daily amount do you think? Surely it would still build up over time, but more slowly than taking 65mg?

So maybe it’s worth testing an increase further down the line. Right now I’m struggling with other causes for increased RLS (foot surgery) so it’s very difficult to tell what’s doing what.

[SueJohnson in reply to Typicallygaslit]

Yep - that seems like a good idea. I'm sorry about your foot surgery. Hope it and your RLS get better soon.

[Typicallygaslit in reply to SueJohnson]

Ok, thanks, I’ll try that - the convalescence has been really bad in terms of nocturnal pain and increased nocturnal restlessness, unfortunately. I’ve also tried to find a reasonable oestrogen dosage that wouldn’t also cause aggravation so there’s a lot to observe.

[Joolsg]

Hi Fendersblue1.Are you alright? We haven't heard back from you. Please let us know how you are.