I thought my restless legs were a sym... - Restless Legs Syn...

Restless Legs Syndrome

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I thought my restless legs were a symptom of my Fibromyalgia, but could I have RLS as well?

Speedracer profile image
18 Replies

Hi, first time poster here so hello to you all.

As per the headline really, I was diagnosed with Fibromyalgia some 5 years ago, although I have had the symptoms for years before that. My legs have always been restless at night for as long as I remember, but I have put that down to having a flare up of fibro in the past. It always happens during the night, my pain meds (Tramadol) have no effect at all, & it is the worst feeling I have ever had, in fact I normally kick something really hard to experience another pain to try & take my mind off it. It feels like there are millions of electrodes fixed to my legs & they are all sending out electric shocks, staying still is impossible, & even though I can't walk far because of the fibro, shuffling around is the only thing that takes the edge off it. I had cancer some 27 years ago & believe me this is a lot worse than that, does any of the above sound like it is RSL would you say?

Cheers, Speedracer.

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Speedracer profile image
Speedracer
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18 Replies

It sure sounds like it to me, and alot of people have both Fibro AND RLS. I will find the info on RLS for you to read, see if you have all the criteria for RLS.

Here is the criteria for RLS.

irlssg.org/diagnostic-crite...

Ho Speedracer I w9 say it is typical restless legs! As Elisse says chec, out the criteriaeople do not realize how devastating yhe impact restless legs can have and uour not the first person on this site to say its worse than some acknowledged serious illness theh have had before.If you do meet the criteria for restless legs you will get lots of info help and support from this forum

jimeka profile image
jimeka

Hi Speedracer, it sure does sound like RLS to me.

There are lots of things to try, as everyone of us with RLS is different and what works for 1 may not work for another, but you will find the people on this forum are very informative and very friendly. Hope you have a doctor who will listen to you , Jimeka

jumpylegs profile image
jumpylegs

My Dr told me that led and fibrous are very commonly found together. I have both. Though I wonder if the lack of restorative sleep suffered by us RLS-ers provides the ideal climate for fibro.

Speedracer profile image
Speedracer

Thank you all for your replies, I had to see my doctor this morning for some blood test results so I brought up this subject & she told me that yes it is RLS & has added it to my list of ailments. She offered me medication but did advise that if it were added to the meds I already take it would have some unpleasant side effects, so I have decided to stay with my current meds for now & see how it goes.

Once again thank you all, this certainly sounds like a friendly & helpful forum & I look forward to communicating more with you all in the future.

nightdancer profile image
nightdancer in reply to Speedracer

medicating RLS can be tricky, and it is always trial and error. At some point you have to get some regular hours of peaceful sleep, and may be the only way. Sleep deprivation can raise your blood pressure, and all kinds of other side effects. Loss of sleep can never be made up. If the RLS gets too bad, you may have to try a couple meds just t see. You may not get ANY side effects you never know til you try it. So good luck to you, and we are always here! ;)

Scotslassie profile image
Scotslassie

Oh how I agree...I have had RLS for years and have recently been diagnosed with PRV and the haematologist said that RLS is part of the symptoms.

nightdancer profile image
nightdancer in reply to Scotslassie

With PRV, most people tend be anemic,but not all. And, then. if your body is not storing iron correctly, your Ferritin be low, and that may cause some people to have secondary RLS. But, as far as the 2 conditions being connected directly without anemia involved, that would be difficult to prove. I have only seen one study on this specifically, and it was only done on 39 people. But, it seems to me that PRV would be a symptom of RLS, but not the other way around. There is extremely small amounts of info on this subject, and really hard to find. ;) If you have any links for us to look at, that would be great for researching it. I am not hitting anything on searches, except that one 39 person study. hmmmm interesting. I do know one person with PRV.

Scotslassie profile image
Scotslassie in reply to nightdancer

I am extremely anaemic...I have had 4 lots of blood removed and need another 2. My haematologist will review my blood count after these end.

JaeEmele profile image
JaeEmele in reply to Scotslassie

what is prv?

nightdancer profile image
nightdancer

Sounds like RLS to me. I always us "electrical shock" description when I am trying to explain what RLS feels like. About 33% of people with Fibro will develop RLS, but not the other way around according to studies. They are thought to be totally separate conditions, and I have both also. I would say half my groups' members do have RLS, though, so more studies need to be done in all areas. But, as now, they are still not thought to be related, but comorbid conditions that just occur. Almost anyone can comorbid conditions, or more than one illness at a time. But, four description I would bet money on you having RLS. Fibro is deep nerve pain only and is never described as restless or electrical.

Hi speedracer, I noticed you are already taking meds for your fibro and I was curious if any of those could be making your restless legs worse? Would you feel comfortable posting ehich meds you take as some members on this forum are very knowledgeable more so than most GPs ad far as rls goes! Its possible your legs could be helped by a change of meds. Best wishes

Speedracer profile image
Speedracer

Hi P1pp1ns, I have no idea if my meds are contributing to my restless legs, I have no problem listing what I take. They are..............

Tramadol 200mg 2 or 3 times a day.

Trazadone 100mg once a day.

Amitriptyline 20mg 2 times a day.

Ibuprofen 400mg 3 times a day.

Omeprazole 20mg 2 times a day.

In the beginning I was taking other drugs such as Citalopram & Prozac, plus a couple I can't remember, but the current meds have been the same for the last 3 or 4 years & haven't changed at all.

in reply to Speedracer

Hi I can see 2 meds that make restless legs worse. Amitriptyline is a definite no no for most sufferers, I have improved since stopping it, Trazadone is another one . Obviously you need to speak to your GP if you decide to try coming off them as I dont know your circumstances and you may need to wean off.Most people are helped with tramadol as I am but everyones difference, Might be worth trying a change of meds.

Speedracer profile image
Speedracer

Ok, I didn't realise that so thank you. Thing is though I also suffer with sciatica which manifests itself as numbness in my thighs from hip to knee, so was given Amitriptyline to help with that. Mind you it doesn't really work to be honest, & now I think about it it doesn't really help with the other reason I was prescribed it, which is poor sleep patterns. A good night for me is 4 hours sleep & a normal one for me is about two hours.

So yes you have just made me realise it isn't working for me so I will speak to my doctor & see what she suggests.

Thank you for asking your questions, it is the best way of finding out things about yourself that I know!

in reply to Speedracer

I also suffer from sciatica and find the best med is pregablin(lyrica) which also helps with rls so kills 2 birds with one stone good luck

Jaynielynne profile image
Jaynielynne

I have both. It's hard to tell when one starts and ends.

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