more of a statement than a question. ... - Restless Legs Syn...

Restless Legs Syndrome

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more of a statement than a question. Suffered RLS for years and lately so bad i end up crying

Carole59 profile image
14 Replies

Suffered RLS for years and lately so bad i end up crying But....this last week has been really good, infact last night nothing at all - omg amazing !! trying to think what ive changed, the only thing ive done is wear warm socks of an evening and ive changed my diet (latest blood test found extremely high cholesterol) so now i eat a very low fat diet. surely it cant be that ? but hey im enjoying the peaceful legs right now. Happy lady xxxx

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Carole59 profile image
Carole59
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14 Replies

I hope it continues for you. I eat a low fat diet, most of the time, and it has never helped me....but hey ho, if it has helped you along with keeping your feet warm (i cant stand my feet warm or hot, sets my RLS off) Nice to hear some good news from someone.

Carole59 profile image
Carole59 in reply to

Elisse, im sorry it doesnt work for you, it may not have anything to do with this, but this is the only thing ive changed in this week. its so weird. its such a relief as i get it everynight without fail, in legs and shoulders. will wait and see !!

Annieapple profile image
Annieapple

Oh Carole it is SO hard living with RLS & one feels so alone and abnormal when it's at its worst! How wonderful that you have some respite at last. Keep up the good eating. Well done! :-)

Hi carole I also have had rls to the point of ending up in tears unable to get a good sleep or even rest so I fully understand how terrible this condition can be.i am so pleased you are getting some relief, If my legs and feet are cold inthe evening my rls is definitely worse so I wear thick socks too.Are you taking any medication for restless legs? Long may the respite continue! Kim

Carole59 profile image
Carole59 in reply to

Kim. Spoke too soon. Leg bad last night but was that because I went out for a meal last night and wasn't really a fat free one ? Who knows. Will restrict fat intake today and see. Surely it can't be as simple as that. No I don't take any meds at all. Doctors don't know what it is so how can they give me any lol

flower-girl profile image
flower-girl in reply toCarole59

Carol, when I first found RLS-UK and went to the Professional Resources bit at the bottom of the page on the left, I completed the RLS Severity Scale as well as lots of other PDFs from the link I will give you below. I took them all to my GP and told him that I had RLS and requested an appointment to see Professor Ray Chaudhuri at Kings College Hospital London. Because I had already started myself on Lyrica and Targinact (I had them from a previous painful condition, Trigeminal Neuralgia,) and the medication had done what I had previously thought impossible, that its to enable me to lie down at night in peace and also be able to sit down in the evening, he gave me a prescription for both Lyrica and Targinact. I also eventually got to see Prof.Chaudhuri who confirmed Primary RLS the painful variant, inherited from my father. Since then the only time it has come back is when my B12 was low...and as soon as I had that sorted it went away again albeit helped by the RLS medications. I wish you well x

rls-uk.org/professional-res...

dangermouse profile image
dangermouse

Sorry your remission was short lived, Carole. There really doesn't seem to be any logic to RLS does there.

tell your Doc that you have RLS -take him/her some info from the net. I did that and he prescribed Neurontin, which works. [At the moment :-) ] Hopefully it will ease again.

Carole59 profile image
Carole59 in reply todangermouse

I did tell her what I had and got told off for looking on the net. But then to find out about it she did the same lol. Going to try no fat day again today n see. It seems there is no logic to rls everyone is different xx

Oh dear carole thought you had cracked it! I find I get a cluster of bad and better days npin a cycle.A sufferer I correspond with has been symptom free for 3 weeks by doing the following...spray legs with magnesium oil during the evening, take regular magnesium supplements, have a bath with epsom salts in rubbing legs vigorously, putting vicks on legs and feet and at first twinge repeat the vicks! It works for her so I am going to try it, good luck

Jumpey profile image
Jumpey

Hi,

I'm so glad you've hit a good period- it's sooo helpful in being able to cope with this condition long term. I have to say, however, that my experience with RLS is that it goes through phases of severe/acute, moderate and mild/remission. Personally, this does not seem to relate to any life style issues. It simply seems to be the pattern and nature of the disease. I would like to be wrong about this.....

Carole59 profile image
Carole59 in reply toJumpey

I am going through a good period at the moment although it was in my shoulders last night. I haven't noticed any phases or perhaps I've had it for so long that I don't remember lol.

lassy profile image
lassy

Oh boy, can I relate to that. Many times I've been up till 2:00 in the morning fighting r.s.l. There is nothing my husband can do. It's lonely being up at that time, sitting in the dark and crying because of the non relenting pain of rats chewing your legs, and being so exhausted you don't know where to turn or what to do. I have just joined...maybe now I'll have people to talk to

Carole59 profile image
Carole59 in reply tolassy

I guess I'm lucky that it doesn't really wake me but I understand how it feels. I feel for you. There are lots of us there who have rls so u now how lots of people to talk too. Your not alone xxxxxxx

Jaynielynne profile image
Jaynielynne

I cry too but usually it happens to me after my alarm clock rings and I have

only been asleep an hour. I get up angry at the world while I am getting ready

and curse at the drivers that sit there when they need to get a move on it. I

drag my butt around all day long at work and I have to go into the sick room

at lunch to sleep that 46 minutes. It gives me 15 mins to freshen up and

then the crabby starts in again. I just want sleep.

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