Thankyou to everyone who has replied ... - Restless Legs Syn...

Restless Legs Syndrome

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Thankyou to everyone who has replied to me I now know I am not alone.

17 Replies

I will have to go and see my gp.My husband summed up the majority of non suffers reactions to restless legs the night I stoppef my mirapex.I woke him up I was in tears and his reaction was its not as thoughyou are ill.I wish they could k ow what it feels like for just one day when it is at its worst.Now I know others understand.

17 Replies
blokie profile image
blokie

Hi p1pp1ns, as I said in my blog a few days ago it sometimes sooths the mind that a lot of people out there knows and understands exactly what you are going through. I can only pray that your situation improves, as it will, hang in there kiddo be strong we are all rooting for you.

in reply to blokie

Thankyou for your kind words

When my new doctor showed a bit ignorance I decided to get something to make him understand my terrible situation.

I did a video with my iPhone one of the nights in hell. It is just 48 seconds short, but I promised you that it was enough to make him very serious.

jigglylegs profile image
jigglylegs

I am sorry that your husband doesn't support you. Mine was very similar at first but he has improved although I don't think anyone who hasn't experienced RLS really understands the torment. I have had a variety of comments from both family, friends and professionals. Let us know how you get on with GP and don't take any rubbish from them .

Thankyou to everyone who has taken the time to reply I am going to learn asmuch as I can about this condition.best wishes to all

in reply to

Yes, learn all you can, but look at websites that do not send you down the wrong road. Lots of them are just theories, and be misleading. Knowledge is power... :)

in reply to

Hi everyone well I have found out that amitryptene makes rls worse so yhe first thing I am going to do is stop taking that! I take 25mg an hour before bed every night so that wont be helping.Think spelt med name wrong but sure you will all know which one I mean! Best wishes and peaceful nights to all

in reply to

Ah, when you get off that med, antidepressant, then the mirapex may work better.!! You do need to wean slowly of the Amitryptiline (i cant spell that flipping med either lol ) Have you been taking it for depression...? you may need to replace it with a more RLS friendly one. Hope you see this before you just stop that med.

in reply to

Hi thanks elisse no I was taking it to help me sleep! Unbelievable that my doctor never realized it could make my legs worse.25mg is a low dose so hopefully can get off soon.Will cut it in half tonight!

RoadRunner44 profile image
RoadRunner44 in reply to

After reading your post about Amitriptyline I'm also amazed that my doctor prescribed it for me too! It seems to me we have to do our own research about medication as we cant rely on GPs with their limited knowledge. My dose is low only 10 mg but now I realise why I had a bad night last night. Cheers for now. Chrys

m1946 profile image
m1946

Is Mirapex a Dopamin Agonist? I agree with you that those who do not suffer from RLS do not realise the agony suffered go through!

i have recently seen a neurologist who prescribed Ropinirole which at the moment seems to work!!

in reply to m1946

Yes Mirapex is a dopamine agonist. :)

Rubylane25 profile image
Rubylane25

My theory is "Until you have walked a mile in my shoes, you will never understand" so when others cannot affirm your feelings just try and remember that. It makes me less angry at those who don't understand. You know how you feel, you know how hard it is to deal with this chronic condition and you know there are a lot of us out here that do understand. I have had stage three aggressive invasive cancer and in all honestly I preferred it to restless legs. At least they treat it and you live or you die but you don't live in hell like living with RLS? Stay strong!

in reply to Rubylane25

Thanks Rubylane25 you sound as though you have had a rough time of it hope life improves for you soon.best wishes for 2014

in reply to

I am not very computer savvy so apologies if I not thanked everyone or thanked you several times

maesllan5 profile image
maesllan5

Hi I also had negative response from friends family and doctor, I changed my doctor only to find he didn't know about RLS so the second time I to went see him I went in armed with this site address and asked him to look it up, It worked. Also I got my partner to have a look he now 100% with me, plus I asked friends and family to look this site, I found I get more understanding from ALL. GOOD LUCK. fellow sufferer JJ.X

in reply to maesllan5

Hi jj thanks for your reply.I asked a couple of my friends to look at the site and the resoonse? You will only make yourself worse reading that sort of thing, unbelievable! Such ignorance, I tell them nothing nowI suppose only a sufferer can understand as rls is impossible to describe.My mum and daughter have mild rls so at least they have some idea what I mean.Take care kim

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