RLS diagnosed - but is it correct>

[CG_w]

Hi all,

Firstly, very happy to find this forum - was starting to go a bit crazy and reading these posts has been reassuring in realising I'm not alone.

My GP recently diagnosed me with RLS and, mostly, it seems to fit my symptoms. However, the more I read the more I'm starting to wonder if its secondary RLS or even RLS at all.

I'm 38, and the symptoms appeared suddenly. I've had no sign of RLS previously, yet most people seem to say its progressive?

I also don't particularly have the urge to move my legs. I know it will stop the muscle spasms, but I don't get an desire or feeling particularly to do so and only do it if I want a little bit of rest-bite. Again, this doesn't seem to fit most peoples description.

Nearly everything else does fit however. The symptoms primarily only occur when resting, particularly in the evening. I get small, visible, physical muscle spasms every 10-14 seconds and they are very distracting. Not painful, just distracting. Mostly, this is in the legs but occasionally in the arms. Sleeping has become difficult.

This all came within about 4-6 weeks of a sudden food intolerance that hasn't quite been solved (bloating, abdominal pain, the works), which the GP has dismissed from being linked. However, I can't help but think they are related.

On top of this is a lot of daytime aching and joint pain that seems to be directly related.

What does everyone think? Does anyone else have a similar set of circumstances? Would greatly appreciate the input.

CG_w

[martino]

This may not help you but let me share a little bit. RLS started out of the blue with one leg occasionally, perhaps every minute or so, jumping. I noticed this late evening watching TV then particularly when I was trying to sleep. I was 67. As the need to move has increased so has the pain. Diagnosis, under the care of a Professor specialising in Movement Disorder, took a long time. Have a look at the RLS-UK website. The guidance there in the do you/ don’t you have RLS area is helpful. All the best

[CG_w in reply to martino]

Hi martino,

Thanks for the reply. I'll take a good look at the RLS-UK website and see how much rings true. How long ago were you diagnosed? I wonder if the awareness of the condition has led to more people diagnosed easier over time?

Thanks again

CG_w

[Graham3196]

This is possibly relevant.

I have RLS and the thing that has given me most relief has been to follow the FODMAP diet. In my case this establishes some relationship between digestion and RLS. Your GP will probably dismiss this as nonsense (or he might be more polite) but there are other people who have also found a connection between food intolerance and RLS The FODMAP diet was developed by the Monash University for IBS patients and has world wide recognition for this purpose. In addition to this there seems to be a higher number of people with both IBS and RLS than would be expected by chance. I have also read that some people with both ibs and RLS find the FODMAP fixes both problems.

All of which suggests that there is a link between the two conditions. I would't expect a GP to know about this.

I have seen a neurologist a few years ago who sneered at my suggestion that there might be a connection between RLS and diet but there are quite a few people on this forum who have found that one of several diets has helped them. The diets include a vegan diet, and a paleo diet. I don't know what kind of specialist would be most likely to help you. Your symptoms don't exactly match my understanding of RLS a the basic symptom is the necessity to move and most people here spend hours walking around the house when they would rather be snoring.

I would try a gut specialist in the hope that you are closer to ibs than rls but its a pretty rotten choice.

Good Luck

Graham

[CG_w in reply to Graham3196]

Hi Graham,

Thanks for taking the time to reply.

I can't help but feel mine is related (although there is a certain amount of wishful thinking). This developed so close to my recent gut problems, which are still unresolved, that I can't help but feel it must be related in some way. I've also started having a lot of pins and needles and faint moments, which are difficult to attribute to RLS, gut issues or just a lack of sleep.

Iron deficiency fits the mould, especially if i'm struggling digesting. Its likely i'm going to take a look at a two pronged attack, one looking at solving the intolerance and another addressing the RLS. I'll do my best to come back and log the findings, but something tells me the two are going to meet.

Its interesting you mention the paleo diet - something I was on for a year or so until recently (due to the gut issues).

Generally speaking my diet has been good, and I (was) very active until this all flared up. Again, just more clues as to a possible relationship.

I will have a good look at the FODMAP diet, thank you. How much did this help your symptoms?

Kind regards

CG_w

[Joolsg]

The urge to move your legs is usually the main diagnostic tool and you say you don’t have that. However your “ twitches” are resolved if you do move your legs. I’m therefore not convinced it’s RLS.

Some doctors will prescribe a dopamine agonist on a very short term basis ( say 3 days) for diagnostic purposes and if the symptoms resolve it is then clear it is RLS.

Interesting that you mention a stomach disturbance- sometimes tummy problems cause low absorption of essential minerals and vitamins and low iron results in RLS and muscle twitches.

You should get blood tests done and check the actual number for serum ferritin. If it’s below 100 take gentle iron ( ferrous bisglycinate) in a skin patch from PatchMD every other night.

Also try magnesium citrate orally and via Epsom salts bath before bed to see if it improves.

For the tummy- take a good probiotic like VSL2 or Symprove both of which have been proven to improve IBS like symptoms and mineral absorption.

Keep a food diary and note any twitches/ symptoms. Gluten, dairy, sugar, simple carbohydrates, raising agents and additives can all be triggers.

If you’re on anti depressants or anti histamines- they can cause RLS.

Read the article Martino suggests and look through the main website for RLS UK.

Jools

[CG_w in reply to Joolsg]

Hi Jools,

Thanks for taking the time to reply.

I will speak to my GP again and re-iterate your suggestion - ruling it in/out would be useful at this stage just for peace of mind and focusing my attention on what relief I can find. The dopamine agonist sounds like that may be a way of doing it.

The gut issues, as you and Graham (above) mention feel related - especially with a potential iron imbalance. I'm slightly surprised my GP didn't suggest testing the iron levels, so its something i'll take up with them.

I don't, at present, take any medication of any kind. I'll have a good look at your suggestions, thank you.

Kind regards

CG_w

[nightdancer in reply to CG_w]

You need a FERRITN level, which is a whole different test than an iron serum test. Ferritin shows how your body STORES the iron, and that is what we need to have done. having said that, no one thing helps everyone, so there is a lot of trial of error. This is the official diagnostic criteria for RLS irlssg.org This is the International study group for RLS, doctors from all over the world. There are 5 steps to RLS for diagnosis, but in every step, you must have the "urge to move that you cannot ignore". So, I am a little confused at your symptoms like Jools is. And, RLS does not have thing to with muscle spasms, it is neurological, not muscular. The part that is completely confusing is that it came on this suddenly, That is nowhere near the norm, but again, there is no one way to treat it, and everyone describes symptoms differently at times.

[CG_w in reply to nightdancer]

Hi Nightdancer,

Quite right, thank you, something tells me I'll need a pad of notes to go in to with the GP next - I'm likely to forget a lot of this

I tend to agree with you and Jools, it just doesn't quite fit together right. I'm starting to draw together a plan, and will feedback whatever the GP suggests too.

The link was very useful, thank you.

It seems like RLS wasn't once diagnosed much in the UK, I'm guessing dismissed a lot, so it just seems odd to me that they were so readily keen to diagnose it this time round without much consideration of other possibilities.

I will keep you all posted.

Kind regards

CG_w

[DicCarlson]

Mostly muscle twitches are related to muscle cramps and the usual culprit is a Magnesium and/or Potassium deficiency. As stated above try Epsom salt baths or various magnesium supplements. Try a simple electrolyte supplement with both Mg and Potassium, or just "The Adrenal Cocktail" (1/4 tsp sea salt, 1/4 tsp Cream of Tartar for Potassium, mixed in juice). There is not a lot of laying in bed with RLS - you have to get up and walk.

[CG_w in reply to DicCarlson]

Thank for Dic,

I will give that a go - thank you. I'm starting to get more and more suspicious about the RLS diagnosis based on what everyone is saying - I don't get the need to 'get up and walk' at all. I know it relieves the symptoms (albeit temporarily), but there is no urgency to do so and I rarely do.

Thanks again, i'll keep you posted.

Kind regards

CG_w

[Svengolly]

I found a study recently that said 50 % ..I think.. of rls folks had ibs . But I am doubtful that 6 Weeks is enough time to find a fishing… But maybe if you were borderline before ..then ...?

R u a vegetarian?

I had had it for decades before Rls.

On the other hand .. muscle spasms ..doesn’t sound right to me for rls .

Try magnesium for that .

Get your iron checked AND insist on the Ferritin test as well . Also ask for testing .. magnesium,D, B12.

[CG_w in reply to Svengolly]

Hi Sven,

Its very possible I was borderline, but like you say I may be clutching at straws.

I'm not vegetarian, but I don't eat a huge about of red meat - its mostly chicken and fish.

Again, thanks for your input - as Dic has also suggested I'll take a look at the magnesium angle as well as the iron.

A trip to the GP is coming up soon i feel! I'll keep you posted. The more I read the less I'm convinced its RLS.

Kind regards

CG_w

[Svengolly in reply to CG_w]

Indeed .. but the magnesium is reputed to help with leg cramps and spasms .. so I would def reco ..try that

[janland]

Hi..yes..

My rls came on suddenly about 5 months ago.

I am very loath to try the go medicine s so I'm trying everything from health shops to minerals.. vitamins..oils to rub on.. ibuprofen to rub on..iron patches IV bought (low ferritin diagnosed)

But I did actually give in to ferrous sulphate..one or two a day.

I have in one leg.. strange pains.. couldn't quite understand them at first.. very achy and painful deep in the whole leg..I thought at first it was osteoarthritis which I have in my knees a little.

I'm now convinced it's nerve pain.. which is an "add-on" to the restless legs.. like electric shocks every 10-20 seconds or so keeping me awake most nights..or if I do happen to fall asleep early ..I get woken up by.

So next visit to doctor I'm going to ask about these other nerve type pains.

I'm just at a loss at moment..as the iron isn't helping at all..

[CG_w in reply to janland]

Hi Janland,

Thanks for replying.

Did your doctor give any idea how long they thought the iron would take to make any difference?

Have you found anything from the health shops has made any difference?

My initial thoughts are to go down the road of diet / iron / magnesium in the first instance to alleviate the symptoms but its hard to gauge how long these things take to make any difference.

Kind regards

CG_w