Hi I'm New , and I have chronic restless everything! Including my bladder....?

[M_argi]

I have had restless legs for years amongst the myriad of other illnesses I have ,fibromyalgia ,arthritis ,vertigo , curvature of the spine , 3 ruptured discs , sacroilliac joint dysfunction ,Tmj,hypermobility ,tinnitus etc. And out of all these things i can say resless legs has to be the worst , its every day (not just in the evening's ) and I have a question to other sufferers - Does it get worse when you need the loo? 😢 I have been tracking my restlessness and sleep pattern (or lack of sleep) and this is when I realised that even when my bladder isn't full , i still have to visit the loo to relieve the restlessness even if for only 20 mins , does anyone else have this issue ?

[lenpharleyd]

Yes, I believe I do. I mentioned it to my Neurologist and Urologist and neither raised an eyebrow to give any guidance.

I do believe there’s some connection possibly.

[M_argi in reply to lenpharleyd]

Yes, i mentioned it to my gp , and she didn't go into it at all, she just said something about irritable bladder ? But on reading about that ,that's not fitting what I am feeling , ah well , suppose I should just keep noting things down ,she did put me on Neupro patches to ease it if not stop it , but that was hopeless as the side effect was they stopped me from sleeping all together,and very swollen hands and feet . I'm glad you think there is a connection too !

[lenpharleyd in reply to M_argi]

I have an appt with a supposed RLS specialist at USF Sleep Center in June. I will relay the urination issue then and hope for a plan to wean off the dopamine agonists.

[M_argi in reply to lenpharleyd]

Oh I hope you get somewhere ! I wasn't aware there are rls specialists , mind you , UK nhs cutbacks ,there aren't any neurologists to spare either . I have still not Seen one .

[lenpharleyd in reply to M_argi]

Check rls-uk.org and rls.org to see if there are RLS specialists near you. I hope you find someone.

[M_argi in reply to lenpharleyd]

Thank you I will , had another absolutely soul breaking rest less night all night last night , so ,im a bit frazzled today 😣

[M_argi in reply to lenpharleyd]

Oops my reply should have been here 😂

[CindyPatt]

Oh yes, I have found the same thing! Especially if I am confined sitting in a car, plane or bus and if I have to go, then my Restless Leg Syndrome really starts in. I also mentioned it to my GP and saw a Uro-Gynecologist but no one seems to know the connection. When my night is bad with the RLS then I can be up 10-12 times to go to the bathroom.

[M_argi in reply to CindyPatt]

Yes it's just so irritating , last night was up there with the worst with bladder jumping in on it every time i think oh its calming down , ugh today i am ever so fatigued.

[lbrosa]

Yes...I too have to urinate frequently when I am in pain or the RLS is raging...so during the night that can be 10 times more or less depending on how I am feeling. I never thought of the urge to urinate making the RLS worse tho ... I feel like the RLS makes the urge to urinate as I also experience the urge for frequent urination if I am having leg or back pain. I have never mentioned it to my GP.

[M_argi]

Now there a thought , like which came first? Chicken or egg? What's causing what ?, when I discussed this with my gp , i asked is RLS primary or secondary to another illness and she couldnt tell me , so when asking about the bladder she tended the lay with the idea that is seperate too, perhaps I'm not explaining well enough , but just so irritating all round .

[lotsoissues]

Your symptoms sound like mine and I have been diagnosed with spondylitis

[M_argi in reply to lotsoissues]

Yes i was told I had spondylitis about 4 years ago, i hate it seems every time i see a specialist something else is added on ..I went with recurring sublucsation in my left shoulder and as the waterfall of questions came regarding all other aspects of my joint problems she did a Beighton scoring test, if i have the name right and then went on to discuss my hypermobility , EDS links and found I have a curvature to the spine also,

But I'm being driven absolutely out of my mind with RLS this week in particular it's been full on 24-7 and I'm getting that desperate feeling , can't hardly concentrate on anything at all , so apologies for not responding very quickly , 😕

[Lash65 in reply to M_argi]

Oh my gosh, eds affects so much. I have been dxed with hypermobility, but I'm getting assessed in May for eds, as eds affects much more than just joints. I have had what they call overactive bladder for over a decade and have been on oxybutinin (sp?) for it. But I still get up to pee several times a night. That, along with the rls and pain issues makes for hellish nights.

[M_argi in reply to Lash65]

My phsiopherapy GP,wrote to an EDS hospital asking for referral,she gave them a basic run down on my symptoms ,the.letter back was very quick ,butnsaid they were only looking for people with the more rare forms of eds and took it that the scoring the phsio did was a diagnosis ,,so but strange really ,my daughter has eds type 3 and my mother showed signs too ,so genetics are there , i just expected to see and eds consultant .

I can totally sympathise with the hellish nights , i really don't know how I am functioning

[Lash65 in reply to M_argi]

The same may happen to me as well at my appointment. I feel it's important to get the correct dx, and if they don't test then how will we know? I'm positive my dad had it, and my son's signs are even more obvious than mine, though he hasn't been dxed yet either.

[M_argi in reply to Lash65]

Yes getting a proper dx is important , but I am surmising a lot of my problems simply cannot be helped whilst there are so may cutbacks , its a waiting game atm , i have to choose my battles haha , and try to have a normal as life as possible . In the past I was even told to stop chasing diagnosis that it was bad for me , so I didn't see anyone for quite a while ,then I go with my shoulder problem and its them that want to chase things up !? I was "really "..

[M_argi in reply to M_argi]

Cont....shocked at their response as I'd more or less just took my lot .my rheumatologist I saw once in 2004 and again in 2016 , i don't consider that as 'chasing ' and he wasn't very thorough about any of my symptoms and just said he stuck by his diagnosis of fibro, i was saying he was wrong , i was asking could I have something else as well as !,so all the stuff I had written down for him to read ,he never read it ,and I knew I wasn't going to get anywhere with him .

[Lash65 in reply to M_argi]

I totally understand. The lack of knowledge and empathy is very taxing for us.

[M_argi in reply to Lash65]

Yes extremely taxing , i have got to the point now where I no longer ask questions , i just take each day as it comes ,at the moment having a tough time , Rls fibro and my spinal issues all raging at the same time atm, so , concentrating on just being as comfortable as possible .

[Lash65 in reply to M_argi]

That's all we can do. God bless and I hope you get relief soon.

[M_argi in reply to Lash65]

Aww thank you so much , God bless you too xxxx

[Lash65 in reply to M_argi]

You're welcome

[MumofSam]

Since I read your post I’ve realised that yes, there’s definitely a connection between needing a pee and RLS symptoms increasing. I’ve often used going to the loo during the night as a break from tossing and turning with RLS, so I don’t know whether there’s a genuine or just a learned connection. Interesting.

[M_argi in reply to MumofSam]

Yes i thought the same at first , going to the loo seemed a releif , but now I feel agitation in my bladder also, i don't know what triggers what though , but as soon as i need a pee I have to go , or the restlessness builds up , I have had a full week of constant restless , i am absolutely exhausted , I'm trying to be calm but it's just not thst easy is it

[HilsK]

I have only just come across this .... It's something I have been too embarassed to talk about with anyone. I am going to raise it again here and see if anyone has had an improved response.