Looking for advice

[catherinem13]

Ok so my RLS is driving me absolutely crazy at the moment, meds are being no help whatsoever and I literally cannot sit down for 5 minutes even in the afternoon. It is exam time at school for me at the moment and I cannot control my legs enough study to save myself- it is making me so frustrated and stressed! I was wondering if it would be worth speaking to my doctor about the possibility of appealing my exams on medical grounds? Would RLS be taken seriously enough to be recognised as a serious hinder to academic performance??

[Kaarina Administrator]

Hi Leigh

I am afraid I am not going to be much help but I have a few questions. Do you mean that you cannot sit to study or that you can not sit long enough to take the exam or both. Could you ask to stand and do your exam papers - would that help?

Are you on any RLS meds now that you have been diagnosed by a neurologist?

I expect you have tried the Magnesium Oil Spray which can be used on the legs and can be beneficial to some sufferers - this is available from larger pharmacies or health food stores. Check with your doctor before you start using this product.

I have no idea if RLS would be recognised as a serious hinder to academic performance. Probably not.

I hope someone else is able to give you some good advice.

I really feel for you, Leigh.

Kaarina

[catherinem13 in reply to Kaarina]

Hi Kaarina,

I suppose a bit of both although I normally can sit in the exam without too much disruption especially if it is in the morning. My argument would be more that I can't study for exams? Because I seriously find it impossible! And when I compare myself to someone else sitting the same exam, surely I'm severely disadvanged? An appeal would look more at how I've performed under less stressful (and therefore less RLS agrivated) conditions?

Yes I've been taking 75mg of pregabalin for the past 3 weeks and I'm seeing my doctor next week to presumably have my prescription doubled as it hasn't helped at all.

I have never tried the magnesium spray but I will look into it, although I doubt it will help.

Thank you for your help!

[Kaarina Administrator in reply to catherinem13]

Hi Leighcath

Do you get on with your GP well and is he knowledgeable about RLS and the drugs available to try to ease it? I hope your GP appointment goes well next week for you.

In 2012 there was a posting on here from someone who had had RLS for 40 odd years and on a whim tried the spray and started to take a magnesium supplement at the same time and it worked for them. Of course what works for one person does not help another especially, it would appear, with RLS.

I do hope you can sort something out with your revising and exam taking, if in the afternoons. Do let us know how you go on.

I wish you well.

Kaarina

[Hidden]

Hi Leigh, thats a hard one and i have no idea on how the impact of having RLS and the problems of you studying would work out for getting a appeal for your exams. I think you would have to investigate that and see what your school would say, then see your doctor.

[beady3]

Hi Leigh,I can imagine what it's like for you because you just can't keep your legs still ,and trying to is impossible ,I do have a bath every night with Magnesium salts they do help a BIT. Don't put your tabs up to much or you will have augmentation and that's awfull ,I would sooner change my tabs than have to high a dose,because it's the doc that puts them up What ever you do stick up for your self. Good luck x

[catherinem13 in reply to beady3]

Sorry I know this question has probably been asked about a million times on here, but what exactly is augmentation? X

[Kaarina Administrator in reply to catherinem13]

Hi Leigh,

You can learn about it here. Scroll down the page to the video on augmentation.

rls-uk.org/#!treating-rls/czj2

Unless your GP knows all about RLS you will probably be teaching him about it.

Kaarina

[catherinem13 in reply to Kaarina]

Okay thanks very much I think I understand better now! The only thing I would say is that my meds so far haven't made it any better at all? My RLS has been noticeably worse lately but I don't know if that's maybe because of the stress of exam time etc or effect of the meds! It's all a bit confusing haha

[Hidden]

Can I ask you do you have pain with your RLS

[Kaarina Administrator]

Hi again Leighcath

As Beady says, do be aware of augmentation regarding meds. I hope your GP is aware of this. You can read more about augmentation on the RLS-UK site.

Kaarina

[Hidden in reply to Kaarina]

Leigh, is only taking pregabalin and you dont have augmentation on that med. Only the dopamine meds cause augmentation and rarely Tramadol.

[Kaarina Administrator in reply to Hidden]

Hi Elisse, that is good to know that pregabalin does not cause augmentation and rarely tramadol too, but at least Leigh will be aware now, should she be put on a dopamine med.

Kaarina

[restlessinlondon]

Hi Leighcath,

I would suggest that even if it doesn't help much with your exam studying problems you should still inform your school of your medical condition. I'm not sure if you are a member of RLS-UK but everyone who joins is given a card, similar to a credit card, which you can show to let people know you have this problem. It might help make them take it more seriously. Best wishes for your exams!

[Hidden]

leighcath13 - RLS is a debilitating condition.

If you don't get extra consideration it would be a disgrace. My RLS takes over my life at times and my ability to function is severely limited.

There is a treatment page at rls.something (can't remember the page but BEADY3 is out there and she knows all!!).

You don't mention what age you are and any tests that have been carried out, (need to check Iron/Ferritin levels, magnesium, etc). Also found this:

98% of patients affected by RLS in a recent study found symptom relief after treating varicose veins in their legs with non-surgical sclerotherapy

from here:

sleepfoundation.org/sleep-d...

My RLS used to be only in my legs but from mid 30's its been up my back and in my arms so be aware that this cursed problem changes too.

A good chat on here, some reading online and th en back to the GP AND DEMAND ACTION, (NICE guidlines for UK: cks.nice.org.uk/restless-le...

Good luck

[catherinem13 in reply to Hidden]

Hi raffs,

Thank you for your help, I'm glad that there are so many people who realise how much RLS can completely take over your life.

As for my age I'm 17 years old and have suffered RLS since birth although it has progressively got worse and worse especially over the past 3 years, I never used to experience pain only discomfort but now I'm being to experience some pain which is concerning for me

I've had loads of blood tests in the past 2 years, especially since I had glandular fever 2 years ago. My magnesium and other vitamin levels were fine, although I have always been slightl anemic and my ferritin levels are low but I don't know how to correct that.

Thank you for all of your advice I will look into it all!

Much appreciated

Leigh x

[Hidden in reply to catherinem13]

Leigh ask your doctor what your ferritin level results were. For a normal non RLS person, its not the same for a RLSer. We need ours to be 70-100 and taking iron pills through your doctor MIGHT help you.

[catherinem13 in reply to Hidden]

I had my ferritin levels tested before I was diagnosed with RLS and my doctor said they were 12!

[Hidden in reply to catherinem13]

Then you need to ask your doctor about that. Maybe ask for another ferritin level to be done, if your other one was a while ago. Your doctor may not be aware that people with RLS need a much higher level. Again not saying that taking iron pills will help but its worth trying them... Your doctor should have you back after 3 months to re-test your level to see if it has moved any. It can take months for it to move.

[Hidden in reply to Hidden]

raffs, the varicose veins connection to RLS is not true. Even tho it says on your link. Dr. B has info about it on his website. rlshelp.org.

[Hidden in reply to Hidden]

Just goes to show how easy it is to get misleading information! I see this has been discussed on here:

healthunlocked.com/rlsuk/po...

[Hidden in reply to Hidden]

That was a very lively thread on here about Varicose Veins and RLS.

[Hidden in reply to Hidden]

Thankfully not a thread I need to be involved it

[Hidden]

Hi leighcath13 - OK we MAY, MAY have some good news. Low iron levels are linked to RLS and its been found that an ordinary Iron profile may not necessarily pick up that you can be low. In saying that you are like me and have had it since birth so it is unlikely that low Iron levels are to fully blame but it may ease them enough for you to get on with life.

Excuse me but, (FU(KING GP), how the hell can a Dr tell a 17 year old they are low in ferritin but give no advice? Man these @ssholes piss me off! I don't mean to be condescending but at 17 I just nodded at the Dr as I hadn't a clue.

ANYWAY you are low. The best way is through a good diet but you will likely need Iron supplements such as Galfer:

netdoctor.co.uk/diet-and-nu...

Speak with your Dr and tell him this needs to be addressed, if you have a good forceful relative with a few years sometimes they can be a good support when faced with a belligerent GP - and there are many of them!(Again not being condescending trying to be supportive). Low Iron levels whether they effect your RLS or not should be properly investigated and treated.

[catherinem13 in reply to Hidden]

Ok thank you! I think RLS runs in my family though (my mum and gran have VERY a mild rls so much so that I didn't even relate it to what I was suffering) so I don't know if that might be the main cause of mine!

[beady3]

Leigh we can all only tell you our story and what we think might help you. I am on slow release Tramodol 50 mg at the min they are working good But please don't think that is 100percent Because it's not it's just better than befor ,I do wish you good luck x

[Hidden in reply to beady3]

I had taken Tramadol slow release for about 8 years and although I was on 300 mg a day (150mg morning and night)it was doing a lot more good than I realized, Tramadol for me is well worth a try, well worth it.

[beady3 in reply to Hidden]

Raffs why have you said that have you come of Tramodl, are you going to go back on them? I am also on them getting on ok I take 100mg a day x

[Hidden in reply to beady3]

I came off them as I was increasing in pain and fatigue and thought if the drugs weren't working like they used to then maybe I could survive without them - famous last words!!

I am being investigated fro CFS and it looks like that unfortunately and I no longer have the ability to pace all night - by 4 in the afternoon I'm done and I don't get up til 10!

The Dr is very reluctant to prescribe any pain drugs despite the fact I never abused them and stopped them of my own accord. In saying that I have co-codamol 15/500 which does help a bit and the Kratom in the evening is the only thing holding me together.

I am seeing the GP next week and I'm going to push hard fro the Neupro patch. I figure if the RLS is treated effectively then the CFS can get a chance to resolve.

One thing I have learned from having health problems - Dr's are nowhere near as smart as they or the public at large believe!!

[beady3 in reply to Hidden]

Raffs if you have cfs I know just what you are going to go through,my daughter has it and her energy levels are nill. She could only clean one room in the house a day and she is wacked ,we live 130 miles from her and no way could she travel that far. So we go to her'i am 79and my husband is 84 she is 50,she doesn't take anything as rest is the only thing that. Helps docs are not gods don't be frghtened of them. Let's know what doc says x

[Hidden in reply to beady3]

Yeah its a big shock - I may not have been doing triathlons but I was always active for me I hated wasting time not learning or enjoying life. I now do as your daughter does a bit of housework that I would have done after my days work and before spending a night studying; all hobbies and interests are a strain now.

What really annoys me is I can't go and play and do normal daddy things with the kids.

I had to learn to rest with this as rest means doing absolutely nothing its been a struggle.

good luck to you and your daughter its a terrible condition if only it would remove my desire to do things it might not be so bad!!!