I have just joined the site, and this is an odd opening question maybe, but I'll explain......
I am 40 yrs old, and have severe RLS from the neck down, 24/7.
I have been taking pramipexole for years, and it usually keeps things bearable, but not always.
I have a few other problems, which I know are commonly connected.........
1. Part-syndrome narcolepsy (I can stop myself falling asleep, but it requires a certain amount of effort). Apparently I will fall asleep in less than 6 minutes every time I'm asked to!!! I take modafinil to keep me functioning through the day. This was prescribed by the sleep centre in London. They also diagnosed me with .......
2. Sleep apnoea - it doesn't wake me though! I have yet to get a 'Darth Vader' machine, as I keep forgetting the appointments!
3. Depression - life long coper (I refuse to wallow in it!). On and off anti-depressants since age 14.
4. Hyper mobility - Ehlers Danlos type 2 to be precise.
I smoke - but giving up for 9 years made no difference, it still kept getting worse regardless.
I am overweight, but not hugely!
My iron levels are always low - I've tried every type of supplement available, but level stays low!
If my lower back is slightly out, this makes the RLS completely unbearable, but without meds it's unbearable anyway
But, my bladder query.......
My first memory of RLS was at age 14. I was with a friend at a gig. I was terrified of getting lost, so I ignored my body's desire to go to the loo for 7 hours in total. The 2 hour coach trip home was horrendous - due to what I now know as RLS!!!
After that, I occasionally got an attack, but thus increased as years went on.
Now, it occurred to me one day that RLS is more common in women, during pregnancy, and in old age. One thing in common with the latter 2 is loss of complete bladder control. Add that to what I said about me not going to the loo for hours on end, and you will see why I am asking!
Other than that, if anyone has a miracle cure, please chuck it my way!!! As someone who doesn't really like 'western' medicine, I'd love to stop rattling as I walk lol!
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Jo-purple
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It is true, age 14 was a busy year for me health wise. I actually suffered a nervous breakdown, but the doctors only recognised that after the event!
I haven't been on anti-depressants all my life. I am usually pretty good at managing my depression, and function pretty normally most of the time - even during bad crashes. I take dothiapin for it, but can't remember being given anything else. I certainly never had Prozac.
As I said, I am not a fan of western medicine, and tried all alternatives I could find before starting the mirapexin (and repinerole which I took first, with no luck).
During the 9 years of not smoking, I was also not taking anti depressants for the first 7 years of that time. And only had hay fever meds for short bursts in summer. During that time, the RLS continued to get worse.
I've started reading about mirapexin now, but, to be honest, wish I hadn't. I only started taking it as a last resort, so I can't regret it. I cannot live with the pain I used to have before I started taking it.
All iron tablets give me constipation, so I took Spatone for a long time to try and increase iron levels. I think we tried for about 2.5 years to try and up my levels (specifically to try and ease RLS) before I agreed to repinerole and then pramipexole.
It didn't for me, and as far as I know, it doesn't in general. But there's ill always be some that break the rule! It's definitely worth trying , and you can get it on prescription
Hi Jo=purple, I am sorry about all of your issues. Like you I suffer from problems with iron defficiency along with RLS and other issues. I was prescribed Vitron-C by Mayo Clinic in Rochester MN, USA. It works and is a good supplement
Hi Jo. I too do have some mild bladder problems but have no idea whether there is a link to RLS. My RLS started during my first preganacy many years ago (I am 68). For the past 15 years or so , ever since the menopause, I have difficulty in passing urine at night, not in the day. I wake up about three times a night with an urgent need to wee and rush to he loo. Then I find I can't pass any easily. But if I don't try to squeeze out a little that urgent feeling remains. It often comes at the same time as a hot flush - yes I still get them at night- and my GP thinks it is connected to the hot flush as I don't get either in the day. She tells me not to worry! So all in all I don't get much sleep and my GP is very reluctant to give me sleeping tablets. If only she could endure just one night of what I go through she might be more understanding. I do take Ropinerole, 2 morning and 2 at night which helps but now have augmentation.4 is the maximum. By the way my 13 year old granddaughter now gets jumpy legs like mine which she described to her mum as " spazzy legs". Poor girl. I also have migraines which are also supposed to disappear after the menopause but no such luck for me. I know I'm not going to die from either so shouldn't complain and usually try not to but this is a good tool to get it off our chests to each other. I wish all my fellow sufferers well.
I'm convinced the bladder plays some part in RLS! I just wish I knew how!
I too cope with headaches, and migraines. My longest headache lasted 11 years, with some days worse than others.
After about 8-9 years they came up with a diagnosis..... I kid you not, this is the actual name for the problem I had..... Constant Daily Headache!!!!! Seriously! But they could offer no cure!!
At one point, a specialist looking at my clunky jaw problem, thought that might be causing the headaches, and wanted to operate on both sides of my face. He received a 2 word answer to that!!!!
I saw another specialist who sent me to see a Physio. I'd seen dozens of physios, osteos, chiros, over the years (another long story, so won't go into it unless someone thinks it might be useful), but this one actually worked!!! Daily headache gone! It was then that I realised the bad days had been migraines - but the silver lining there, was that I was so used to them, they rarely stop me functioning.
But here is my top tip.... Read it in the guardian many years ago, and it works..... CAKE!!!! Not biscuits, or sweets, or anything but CAKE! And I've since proved it to many friends over the years. Those that can, and can't normally eat during a migraine. You should notice relief in about 20 mins if it's gonna work for you
Your granddaughter.... Poor thing! I know how that feels! My daughter got RLS really badly between about 18 and 30 months old. She would be in bed screaming with pain for over an hour at a time, kicking and thrashing her legs. She wouldn't let me hold her, so all I could do was sit by her bed, holding her hand when she'd let me, and cry with her.... Repeatedly apologising for giving her my genes!
My son also gets it occasionally, but not so bad. Same with my daughter now.
If they get it, we have an insane stretching, running on the spot etc etc routine we do, then they go straight back to bed. Not exactly normal bedtime routine for kids, but I'll do whatever it takes!!!
I wish you and your granddaughter well, and hope you get the relief you need
Hi I don't have a bladder problem but my RLS always becomes practically unbearable when I have a full bladder and I get temporary feeling of relief once bladder is emptied.
I also have hypothyroidism my regular blood tests always show low folate and ferritin despite my supplementing with iron daily. I am going to try taking it at night with vitamin c to see if that will help. I have tried Spatone but it is expensive. I am now trying Liquid Iron from H&B which works out a bit cheaper.
The more it hear, the more I am convinced there is a link between the bladder, and RLS!
Spatone is expensive, but your doctor can prescribe it for you (assuming you live in UK - I don't know about other countries). My doctor had never heard of it, but looked it up, and found she could indeed give it to me on prescription!
I've never felt support and understanding for RLS anywhere before. I'm now in tears because at last, I've found people that really understand how this .... Thing..... Affects your life - in so many ways!
In answer to your queries.......
I'm afraid I have a bit of a memory problem (well, a lot actually lol), so I can't remember the details of when I took Spatone, but I know it was with fresh orange juice, and taking it on an empty stomach rings a bell with me!
My knowledge of food clashes, and intollerence is pretty good, but I didn't know about dairy reducing iron absorption! I'll look into that!
The dothiapin, well, I'm looking at a tricky situation there right now I guess! When I went back on them some time ago now, my doctor wanted to give me something else, but my crash was too sudden, so I insisted on having what I know works. Unfortunately, right now would be a disasterous time to try doner hung else, as I am now coping with my 13 yr old son self harming. I knew he would be a coping depressive, as he has shown all the signs, but I was hoping to avoid this bit
But I will look at different meds as soon as I no longer need to carry my sons depression along with mine.
Well with my IBS due to the Fibro I was put on Zelnorm for awhile (not long) and I've had bladder issues ever since. They took it off the market but that really doesn't help me now. Don't know if this will help but thought it couldn't hurt to share. I have had RLS since early childhood. xxx Mitzi
We all find our way in the end. All very different paths - some good, and some not so good, but as long as we keep on moving forward we will find the right for each of us. It sounds very much like you have found yours within Native American beliefs, which is awesome! But I'm not so sure it's the right path for me or my son. Although, we may well reach similar destination.
My son also borders on aspergers, so I have already done huge amounts if teaching with him, just to get him to be able to interact with people effectively - as well as a lot of other stuff! Unless the person observing him is a professional, they would never know he was any different to anyone else. I strongly believe that the autistic spectrum is not always a curse, but sometimes a gift. It's a higher level of intelligence that those without it can't understand.
I tell him it is important for him to learn all about himself, how his brain works, and how things affect his state if mind - that way, he can remain in control even through the darkest times. He is learning well, it's just the path he is on is crumbling slightly, so he needs to learn how to balance, and sometimes jump across the breaks on the path not really knowing if the other side is strong enough to support that jump.
I have no doubt he will find a stronger path, but until then, he knows I am there to catch him if he stumbles
Yes Jo, my experience is that my RLS is very related to bowel and bladder pressures. If I eat too much food, drink too many liquids, eat gassy foods, particularly high fibre foods and greasy foods, the gas causes the RLS symptoms whereby I must move around, twist the body and then relieve the gas and empty the colon and bladder.
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