Does this sound like RLS?

[chan620]

Hi, I’m new to all this but not sure if what I’m experiencing is restless leg syndrome or something else. I’ve had an under active thyroid for 12 years and always had problems with painful, achy muscles, and over the last few years also struggled with tingling and buzzing sensations in my hands and feet. I have on a number of occasions woken up on a morning with my legs feeling cramped and painful, and said it felt like I’d been running all night. A few weeks ago, I woke up and had pain in both calves which made it painful to walk, as the days went on the general aching pain has been there on and off all day everyday, nit just in the calves, through the whole legs. I find it’s worse when I’m sat, and I am constantly changing positions and moving my feet, the same when I go to bed at night. The discomfort keeps me awake or wakes me often. I have a vibrating, buzzing sensation every day, in my feet and lower legs. I saw my GP last week, had bloods done and all ok, he said at the initial appointment he thought it was restless leg syndrome, but I’m not sure. I need to book in with him next week to discuss options, and I know he will probably just diagnose it as that and give me medication, but I’m nit sure whether to ask for a referral? Thanks

[SueJohnson]

All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.

[chan620 in reply to SueJohnson]

thanks Sue, so on that basis would you say it probably isn’t? Due to the fact I have pain in the morning (and throughout the day)

[SueJohnson in reply to chan620]

Do you meet the other criteria?

[chan620 in reply to SueJohnson]

pretty much, although my legs do ache when walking around, it relieves the cramping sensation

[Millersman in reply to SueJohnson]

I'm surprised that you say the symptoms of RLS are "an urge to move the legs". I've had RLS for 16 years and the symptoms are much worse than that, primarily the involuntary twitching and jumping within the legs. Yes, you need to get up and move around, but RLS is what's caused you to do that. Do you not agree?

[SueJohnson in reply to Millersman]

I was just quoting the standard accepted criteria for a diagnosis of RLS. Yes RLS causes you to have an urge to move the legs.

[SueJohnson]

I would be interested in what Joolsg thinks.

[SueJohnson]

If your doctor does decide it is RLS, you don't want him to prescribe a dopamine agonist like ropinirole or pramipexole (mirapex) because of the danger of augmentation. They are no longer the first line treatment for RLS. Gabapentin or pregabalin are.

[chan620 in reply to SueJohnson]

ok, thank you for your help Sue

[Joolsg]

Suejohnson has set out the diagnostic criteria. The most important one is the URGE to move, You can't resist it. You have to get up and move around and moving relieves the sensations. Do you have to get up and move around or can you continue sitting and tolerate the pain/discomfort?

RLS can cause pain and cramp like sensations and that's why it is sometimes difficult to distinguish from neuropathy or fibromyalgia.

Usually, RLS is worse in the evenings and night as it follows the dopamine cycle and levels drop from 6 pm until 6 am next morning. You say you wake up with the sensations in the morning and they last all day. RLS does not usually follow that pattern when it first occurs.

You had bloods done last week but GP will say they are ok/normal but for RLS we need numbers to be much higher than 'normal'. Ask for the actual figures. Serum ferritin needs to be above 100.

Sometimes a one -off dose of levodopa carbidopa is given at night as a diagnostic tool. If the sensations and pain stop, it's highly indicative that it is RLS. However, levodopa is not prescribed for RLS long term as it has a very high risk of worsening the disease.

What medications are you currently taking? If you do have RLS, anti depressants, anti histamines, statins, beta blockers and PPI meds can all trigger/worsen RLS,

[chan620 in reply to Joolsg]

I don’t have to get up, just move my legs and feet constantly, although I do get up when it gets too much. I’m going to push for a neurology referral I think, they have suspected fibro before but then changed their minds as I didn’t have the tender spots ( which I’ve since found out isn’t always the criteria for diagnosis anymore!). I’m on levothyroxine and HRT at the moment, that’s all.

[Joolsg in reply to chan620]

It could be RLS. The only thing that doesn't fit the criteria is that you have it all the time and not in the evening or nights. It's common in thyroid patients.Definitely raise serum ferritin before anything else. As your GP said they were 'ok' you could even start taking oral iron now to see if it makes a difference.

Gentle iron ( ferrous bisglycinate) is easily available and is best taken every other night to fool hepcedin.

pubmed.ncbi.nlm.nih.gov/314...

[chan620 in reply to Joolsg]

Saw GP today, he now thinks I have fibromyalgia and is treating me as such, he also thinks I may have rls in conjunction with it, but trying treatment for the fibro first. Guess I’ll just see how it goes. Thanks for your help

[Joolsg in reply to chan620]

Hope you find an answer. I follow several people with fibromyalgia on twitter & some have had incredible results with medical cannabis. If you are given pregabalin or low dose opioids for the fibro, those drugs also help RLS.

If your doctor offers dopamine drugs like Ropinirole/Pramipexole/Rotigitone patch, be wary as they are no longer prescribed for RLS by knowledgeable doctors.

Good luck.

[Moonwalker1967]

I have had my thyroid gland removed a few years ago. I get the achy feeling in the morning, too when I have had a bad night with periodic limp movement. Feel like having run the London marathon. Which results to achy legs all day. It's a strange muscular pain which gets better when walking. I have had this together with the RLS.

Hope above helps a little!?

[chan620 in reply to Moonwalker1967]

I think us thyroid patients always have something to deal with! I honestly haven’t been right since diagnosis, but drs make out I should be fine if the bloods are fine

[Fingerandus in reply to Moonwalker1967]

i had my thyroid removed 11 years ago .ive had RLS it seems forever i was prescribed pramipexole which was wonderful best nites sleep in years but my goodness im suffering now this is my 6th nite trying to withdraw from it taking 3/4 of my tablet then a codeine at sleep time 10ish. i didnt take one yet because i took a tamazepam i am in agony i have eaten a choc bar and gluten toast today.i wouldnt recommend pramipexole to any one for RLS pregabalin is better but it does make my feet and ankles swell and i get periphial neuropathy so i have stopped them. is it safe to take codeine with tamazepam

[StJulian1305]

hello. I had an appointment last week with a hand surgeon as I have in both hands, trigger fingers, and he also said I have carpel tunnel syndrome. He also said it not unusual when you are on an under active thyroid to have these problems. Which of course I never knew. Waiting now for urea sound to define all this. I also have restless legs, have done from being a young girl. Now 72 and still have it.

[chan620 in reply to StJulian1305]

I saw a menopause specialist last year who used to be a go, and she told me that even though thyroid patients have the hormone replaced, they will never be as well as they were before. She’s the first dr in 12 years to say this! All the others insisted that if the numbers are in range you should be fine, which I never have been. It’s linked with so many things!

[StJulian1305 in reply to chan620]

nothing to look forward too eh? We do our best to look after ourselves, read as much as we can. In fact it’s hard work

[chan620 in reply to StJulian1305]

I’ve tried all the things they tell you to do, optimise vitamin levels, go gluten free, go dairy free, etc but I can’t say it’s made much difference! Bowel issues are better now but I still have ni energy and hurt all the time! Not much fun is it? I’m 46 and feel like a 90 year old most days

[Munroist]

I have had all of the symptoms you described but in my case I believe they are down to nerve problems caused by a slipped disc. I also have RLS so difficult to be 100% but cause and effect are pretty clear as I can generate the symptoms by mistreating my back. For me the key aspects of my RLS are that it follows the classic circadian rhythm, normally happening late evening until middle of the night e.g. 4 am and I also have the classic urge to move rather than pain. That means I am pretty sure there are two things at play here. There is a reasonably well documented and accepted connection between neuropathy (nerve issues) and RLS, possibly the fact that your nerves are in a heightened state of alert or more sensitive means that they are also more receptive to the RLS impulses, but that’s just me speculating. You seem to describe pain, tingling and odd sensations through most of the day and discomfort when sitting. That does sound more like nerve issues to me (paresthesia) but there are people with RLS who report pain and also sensations during the day so it’s not clear cut. Initially my back issues were very clearly signalled by intense backpain as well as all the other stuff, but these days I don’t always get the back pain and I know I’ve overdone something because I get the other symptoms in isolation. As above one way of telling is trying a dopamine agonist for a very short period of time as these are normally very effective for RLS very quickly but they are now normally not advised for long term treatment due to increasing side effects.

[chan620 in reply to Munroist]

I have very bad neck pain, but not really back pain. I think I need to push for more tests really, I’m not happy to just accept a guess from the Gp, I’ve struggled for too many years to give in again

[DicCarlson]

I had that buzzing feeling in my feet, lower legs when I had severe RLS. But, the worst was that absolutely uncontrollable urge to move when trying to sleep - I just had to get up and walk around. Iron supplements "cured" me - so do get a full iron panel especially detailing your Ferritin level and % saturation.

[chan620 in reply to DicCarlson]

my iron panel was fine on my recent bloods, I don’t feel like I have to get up, just that I have to move my legs

[SueJohnson in reply to chan620]

As Joolsg said, doctors will say it is fine but what is fine for others is not fine for those of us with RLS. What was your ferritin - if you don't know, ask your doctor.

[Oregonmike]

hate to say this- Parkinson’s presents like this in some people

[Wolfqueen in reply to Oregonmike]

really? I’ve had it on and off for years, so I’m not sure but I will look into it for sure. Thank you

[chan620 in reply to Oregonmike]

sorry, I have two accounts and replied in the wrong one 🤦🏻‍♀️

[Rwall]

I also have under-active thyroid, and my RLS presents itself as my tiny muscles twitch and move constantly at night, without meds. I also get cramping and find it gets worse with certain foods and drink. I live in the U.S. and see the expert in the South East for RLS, who also suffers from RLS. There are many more symptoms that they recognize as being RLS here apparently, even though there are specific guidelines, which may not necessarily be true for you. Here, my doctor is a sleep specialist, but I originally saw a neurologist for the initial diagnosis. There is certainly a direct tie between under-active thyroid and RLS symptoms!!!!! Good luck!

[Wolfqueen in reply to Rwall]

thank you! Yeah I’ve read a lot about them being linked, I’ve had so many issues since my thyroid diagnosis, it’s a constant battle! I may see if I can get a neurology referral

[Rwall in reply to Wolfqueen]

One thing to be aware of. Regular thyroid medication such as Synthroid or Levothyroxine generic gives me cramps, which to me are not related to my RLS, which is the constant twitching. Once you have been on medication for several months and you still have the cramps, you may want to consider the U.K. equivalent to Tirosint. It is a pure brand of the medication and has done wonders for me. Not the RLS, but the horrible cramping and pain. I'm intolerant to the regular medications they use for under-active thyroid. That being said, I agree with everyone else and please do not take the Ropinerole for RLS. It will make everything worse, rather than better, in the long run. Also, I do not know if you are taking statins for cholesterol. They also caused me terrible cramping and pain.

[chan620 in reply to Rwall]

sorry, I have another account and replied on that one!