Change in symptoms: I've had restless... - Restless Legs Syn...

Restless Legs Syndrome

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Change in symptoms

purpleweasel profile image
11 Replies

I've had restless leg for about 25 years and i know that it is affected by my hormone levels (it was worse in pregnancy). It was always more of an itchy-discomfort feeling but recently i have been getting almost painful aching feelings which have been waking me up in the early morning. Do you think this is still restless leg, just a change in symptoms?

Thanks all

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purpleweasel profile image
purpleweasel
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11 Replies
Madlegs1 profile image
Madlegs1

IfFirstly ,it is more likely that it is your iron levels rather than hormones, that caused you RLS. (Baby grabbing your precious iron 😢)

So I would be inclined to get a serum ferritin test. (Total blood count) and see where you are then.

RLS is usually more of a tickling feeling that stops you actually getting to sleep ,rather than waking you up.

Check out the 5 criteria for RLS on the UK RLS site.

Good luck.

Joolsg profile image
Joolsg

It could well be. Check the diagnostic criteria on RLS-UK, and ask for full panel fasting blood tests. Raising serum ferritin above 100, preferably 200 can resolve the majority of cases.

SueJohnson profile image
SueJohnson

It was both the baby grabbing your iron and the estrogen.

To elaborate on what Madlegs1 and Joolsg said

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, fast after midnight and have your test in the morning. 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.

SueJohnson profile image
SueJohnson

Are you taking any medicines for your RLS?

SueJohnson profile image
SueJohnson

Welcome to the forum by the way. You will find lots of helpful advice and sympathy here. Yes some people have achy feeling in their legs.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

SueJohnson profile image
SueJohnson

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, estrogen, 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, 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.

BarnGir1 profile image
BarnGir1

I have had RLS since I was a teen but it did not bother me until about 5 years ago. Neurologist prescribed Requip which worked well until about 6 months ago when it escalated very quickly. I feel so fortunate to have found this group. So many knowledgeable people with first hand (and long term) experience with RLS. They have given me info to talk to my GP about and have provided more helpful suggestions than the neurologist or the GP. After two months of torture, I have been able to control my RLS but learned that I will continue to suffer augmentation until I can get off Requip completely. I had a particularly bad day today so it was helpful to get online. I hope I can encourage others who are on this roller coaster ride. I have more good days than bad right now. I had never heard of augmentation until Sue informed me of it as well as other things I was taking that made my RLS worse. It is a slow, painful process and I am finding that everyone is very different but the support from this group is wonderful. Even though I had 3 iron infusions almost 2 years ago, and am careful with my diet, I still have to pay attention to when things seem to change so I can stay on top of it as much as possible. I have recently started having sharp, stabbing pains in my feet and toes which I think is RLS but my GP disagrees. It is very discouraging to have to monitor so much and then not be taken seriously when I share info with my dr. I have recently been reading some of the articles mentioned in older posts on this site, but feeling a little overwhelmed even after dealing with RLS (and migraine) for so many years. Finally, I want to thank everyone for providing a forum to express frustration but also find hope and real help.

purpleweasel profile image
purpleweasel

Thank you all, I have had some blood tests (no results yet) but not sure if they are doing iron or not. I am on thyroxine, fluoxetine and hrt but nothing for the rls as I have always been able to put up with it until now! GP didn't seem very convinced and suggested physio, but I have been doing physio excersises for a few months with not much change. Would yoga help do you think?

Kaarina profile image
KaarinaAdministrator in reply to purpleweasel

Fluoxetine (Prozac) can worsen symptoms for some. It is listed as a medication to avoid. rls-uk.org/medical-treatments

SueJohnson profile image
SueJohnson in reply to purpleweasel

HRT contains estrogen which makes RLS worse for many. As Kaarina mentioned fluoxetine is an SSRI antidepressant that makes RLS worse for many. Wellbutrin and trazodone are safe for RLS. Discuss them with your doctor.

Floordefleur profile image
Floordefleur

I think I know what you mean. I have also a pain in my legs when I rest. And it’s not RLS. My neurologist doesn’t know. Meds are not working for this pain. I’m just figuring out if it’s hormonal. I think when my estrogen is low. I’m on bio identical hormones now. Just a few weeks. Have to be patient.

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