New guy from Scotland

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eyeofskye
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Joined: Wed Feb 11, 2009 10:37 am

New guy from Scotland

Post by eyeofskye »

Hi, I'm Brian and I live on the Isle of Skye in NW Scotland. Forgive me , I posted this message on another RLS forum before discovering it is almost completely inactive so, if you should see it there... :oops:

I have only recently begun to realise that what I have is RLS. I ended up ill health retired on Skye because 7 years ago increasing back problems finally ended my working days. I must have started getting restless legs maybe 10 or more years ago but recently it has become a very serious problem and I don't know the cause. I have mentioned it to my doctor many times but probably not in the right context; I believed that it might have been happening because of gaps in pain medication coverage. I am type 2 diabetic, not very well controlled, and suffer from high blood pressure which is very well controlled. My main problem is two prolapsed discs, one cervical and one lumbar together with osteophytic growths crushing my lumbar nerves and a spodylolisthesis. My leg muscles are wasting and weak and I get fasciculation in the calf muscles. I am currently waiting for the Aberdeen neurosurgeons to talk me into a decompression on the cervical prolapse. I take 250mg of Tramadol a day for the pain (nothing else works) and to complicate matters missing a couple of doses will cause somewhat similar withdrawal symptoms.

I'm hoping that the neurosurgeons are going to take an interest in the RLS but I would really like to engage the interest of my GP without him thinking that here is another hypochondriac. All suggestions gratefully received.
My RLS has recently become much more severe involving my arms fully. I'm losing an awful lot of sleep, frequently unable to get to sleep until 5 in the morning. The only sure fire way of stopping it, and I'm not telling my doctor this, is to take a slow release Tramadol capsule pour out the contents and chew them up. Don't try this at home children. After about an hour all the symptoms stop but I'm like a zombie the next morning

Reading through some of the descriptions on various sites convinced me of what the problem is. While watching telly at night in my recliner I'm thrashing my legs back and forward and in bed I'm having a fully fledged dance session waving my arms about as well. The weird sensation inside my arms are sometimes so bad I wish I could stick my arm in a garden shredder. I guess you know all this. The sleep deprivation is making me very dopey in the daytime robbing me of all the pleasure that the Tramadol has not already taken away and making it even more difficult to take care of my 92 year old mother who moved here with me. My relationship with my partner is taking a battering as well.

Well, now that I've thoroughly depressed you all I'd better shut up but, seriously, all suggestions gratefully received.
Brian

SquirmingSusan
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Post by SquirmingSusan »

Hi Brian. Welcome to the forum. I think you will find this forum to be quite active, and people very helpful. It sounds like you have some shame/embarassment about having this condition. That's not necessary, and certainly won't help! This is a legitimate medical condition. I'm going to suggest you read up a bit in this section of the forum. There is a sticky post at the top that has all kinds of information.

As for chewing up your Tramadol to get relief - no shame in that either. It sounds like you need a stronger painkiller like oxycodone or hydrocodone for starters to control your RLS. Many of us take methadone, which is a very strong painkiller to control our RLS. There are also "approved" RLS drugs like Mirapex or Requip, which you could ask your doctor about. Those are not narcotics, and doctors tend to be more open to prescribing them. And when they work, they work great. Most people tolerate them just find and an take them for a long time before needing something different. So there's a start for you to get this beast under control and get some decent rest.

One piece of writing that we all like to refer people to is called "The Mayo Clinic Algorithm for the Management of RLS." There's a link to it in the above-mentioned sticky post, and also, there are a few people in the forum who have a link to it in there signature lines. The Mayo Clinic is a highly respected medical institution, so doctors are often quite willing to read and trust their information. It outlines various treatment protocols to follow in the management of RLS. Print it out and bring a copy to your doctor. If your doctor doesn't believe that RLS is real, it's time to find a new doctor because they're not operating with the known facts. But if your doctors just doesn't know about it, the algorithm should help greatly.

We have several people here in the forum from the British Isles, including a gal from Scotland who goes by "Moonlight" in this forum. I'm sure they'll be by to welcome you as well. BTW, I love Scottish accents. Since I'm a late-night person, I often watch Craig Ferguson. He's hilarious, but I just like listening to him talk.
Susan

eyeofskye
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Joined: Wed Feb 11, 2009 10:37 am

Post by eyeofskye »

Thanks for the welcome Susan. I'm not really ashamed or embarrassed about the problem it's just that I've had to see the doctors about so many things recently, the huge spinal problems, the diabetes, enlarged prostate, cystitis, a growth in my stomach etc I wonder if my doctor is in overload. Despite MRI scans deluging him with info about how bad my spine is I always feel that I'm going cap in hand for pain relief, particularly after he made the suggestion that I visit a website for cognitive behavioural therapy. Unfortunately we are a bit remote here (the nearest main hospital is 130 miles away) and there are no local pain management specialists. BTW we did recently try Fentanyl patches as an alternative to Tramadol but they don't seem to be effective on me so we had to go back to what worked.

From what I have read Tramadol is used as a treatment for RLS which is probably why chewing up the slow release tablets in desperation worked and why missing out on a dose causes the such a dreadful attack.

I'll have a read of the information you suggest and come back with any more questions later.
Brian

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Post by ViewsAskew »

I'll add my welcome to Susan's.

I am guessing your doc IS in overload. But, that's because you need him to help and have a lot going on. Sometimes that happens. The RLS often goes to the end of the line, though, because they think the heart or liver or diabetes or whatever is much more important.

But, getting good sleep is essential to our heart health, reducing our diabetes and stroke risk, etc. So, it is vitally important to address, too. Add that most docs are NOT that conversant in RLS and you get a mess.

There is no conclusive proof that RLS and back problems are related, but it sure happens a lot. The RLS may have come first, or second, but people with back problems often find the RLS is much worse. Some find it stays the same when they get the back problem fixed, others find that the RLS reduces.

I wish you the best in getting the help you need. I second reading the sticky post in this section. It does seem that this disorder requires an above average patient knowledge quotient, lol, in order to get the help we need. That's because we often end up helping the docs to help us.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Post by Polar Bear »

Hi Brian
I am over in N.Ireland, so use the same health system as yourself. My doc was happy to look at the Mayo Algorithm and works with me. I take requip and tramadol plus a sleeping aid.
Yes, I went to him with the Algorithm printout, almost humble and cap in hand, hoping he wouldn't be offended. Not a bit of it!! I reckon he was glad to see it, for some assistance :lol:

As for taking the crush up tramadol..... whatever works within reason, just not the garden shredder, tho I know what you mean.

I am sorry that you also suffer from the other multiple conditions, it can't be easy. And when in the throes of a bad rls attack it can feel like you are going crazy, on top of everything else.

I found my GP to be my best ally, neuro actually said to go ahead and use the Algorithm with my GP, that there was nothing he, the neuro, could offer that was any better.

Moonlight, our Scottish member, if I recall correctly has been having relief by using an acupuncture ring that she got at Boots chemist (around £30) but I haven't tried it.

I hope you get lots of useful info here, it is a great site.

By the way.... I am soon travelling to a wedding in Aberdeen by car... Am I mad.?? .. 6 hours drive after the ferry.... Yikes, reckon I'll be the one doing laps around the parked car at the side of the road :roll: :lol: :lol:

Good luck.

See ye jimmy !!!!
(I wonder how many of our members will have heard of that greeting)

Best wishes.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

SquirmingSusan
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Post by SquirmingSusan »

Another thing, Brian. I believe the upper daily limit for tramadol is 400mg. You could probably ask for an immediate release tablet to take at bedtime to supplement the extended release.
Susan

eyeofskye
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Post by eyeofskye »

SquirmingSusan wrote:Another thing, Brian. I believe the upper daily limit for tramadol is 400mg. You could probably ask for an immediate release tablet to take at bedtime to supplement the extended release.


Thanks for that but as it hapens that's exactly the reason why I'm now taking 250mg. The 50mg is the immediate release one. I explained it differently to the doc but that was the real reason. Unfortunately it doesn't quite do the same job but I am getting more even pain relief :)
Brian

eyeofskye
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Joined: Wed Feb 11, 2009 10:37 am

Post by eyeofskye »

Polar Bear wrote:Hi Brian
I am over in N.Ireland, so use the same health system as yourself. My doc was happy to look at the Mayo Algorithm and works with me. I take requip and tramadol plus a sleeping aid.
Yes, I went to him with the Algorithm printout, almost humble and cap in hand, hoping he wouldn't be offended. Not a bit of it!! I reckon he was glad to see it, for some assistance :lol:

As for taking the crush up tramadol..... whatever works within reason, just not the garden shredder, tho I know what you mean.

I am sorry that you also suffer from the other multiple conditions, it can't be easy. And when in the throes of a bad rls attack it can feel like you are going crazy, on top of everything else.

I found my GP to be my best ally, neuro actually said to go ahead and use the Algorithm with my GP, that there was nothing he, the neuro, could offer that was any better.

Moonlight, our Scottish member, if I recall correctly has been having relief by using an acupuncture ring that she got at Boots chemist (around £30) but I haven't tried it.

I hope you get lots of useful info here, it is a great site.

By the way.... I am soon travelling to a wedding in Aberdeen by car... Am I mad.?? .. 6 hours drive after the ferry.... Yikes, reckon I'll be the one doing laps around the parked car at the side of the road :roll: :lol: :lol:

Good luck.

See ye jimmy !!!!
(I wonder how many of our members will have heard of that greeting)

Best wishes.


Hi Polar Bear. I've printed the Mayo stuff and maybe soon I'll work up the courage to present the great doctor with it. I had a much better doctor last year but unfortunately his kid had ADHD and he was too much of a handful to cope with, on Skye, in winter. They moved to Granton on Spey for more facilities but it now seems they have just got more snow. C'est la vie.
Actually the going crazy bit is close to the mark. There have been some times in the dead of the night when I've thought just that. My partner and I have seperate bedrooms, we just like it that way, but I still can't get up and walk around because the floors creak like mad and my mother's bedsit is below me. Ever try to dance in bed like you are in a club but be totally silent as well? I'm reduced to listening to tapes of Jules and Sandy at 4 in the morning. You probably don't remember that far back.
That's a long drive for a wedding. It'd better be a good one. I've never been to Aberdeen. If I have the operation on my neck it will be my first visit but I doubt they will give me the full tour.
I don't look forward to trying yet more drugs as I'm close to the rattling stage but if something can be done I guess it would be worth it. I've tried my partner's diazepam and some valerian capsules but no luck there. I even got out my old TENS unit but I can't get the pads to stay on any more :(
I must come to NI some day. Lovely country from what I have seen on telly and probably quieter in parts than Skye.
If anyone wants to see what it's like where I live have a look at my site
www.eyeofskye.co.uk but don't buy a picture unless you really, really, really want to. It's only a hobby.
Brian

Sojourner
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Post by Sojourner »

B, Another warm welcome to the Board. Not much additional to add cept maybe..... While you are not at the upper level for Tramadol use please be aware that there is a risk of seizures at higher doses (400 mg +). Also, though apparently extremely rare, I think thereis remote possibility of augmentation with Tramadol--or at least a few cases of this have been reported. Other than that, enjoy your reading, welcome, and best of luck. M.
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Polar Bear
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Post by Polar Bear »

Brian, one thing that did work for me before meds..... I filled a bucket with water as cold as possible and sat with my feet in it, splashing the water up to my knees. For about 20 minutes. This worked not too badly, cut the symptoms sometimes long enough to get over to sleep.

Hmmm.. Jules and Sandy... Don't think they'd be too far back for me (I'm 59) just never heard of them.... I think....

It'd be interesting to hear if the cold water would work for you, tho it may be diff to lean over, splashing the water, if your back is a problem. What about using the shower head to spray cold water on your legs.

Anything is worth a try.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

eyeofskye
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Joined: Wed Feb 11, 2009 10:37 am

Post by eyeofskye »

Polar Bear wrote:Brian, one thing that did work for me before meds..... I filled a bucket with water as cold as possible and sat with my feet in it, splashing the water up to my knees. For about 20 minutes. This worked not too badly, cut the symptoms sometimes long enough to get over to sleep.

Hmmm.. Jules and Sandy... Don't think they'd be too far back for me (I'm 59) just never heard of them.... I think....

It'd be interesting to hear if the cold water would work for you, tho it may be diff to lean over, splashing the water, if your back is a problem. What about using the shower head to spray cold water on your legs.

Anything is worth a try.


'Hello, I'm Julian and this is my friend Sandy' Round the Horne radio show. I'm 57 and a great fan of Radio 4.

I may try the cold water but I can tell you now that cold feet, per se, don't do the job. Here's one for you though, effective for me 30% of the time. I keep a stiff clothes brush by my bed. It sounds masochistic but if I give myself a good brushing all over including my head it leaves me with a lovely comfortable warm feeling that can get me to sleep. Something to do with the endorphins I suppose. It also deals with all those little itches you discover when you are trying to sleep as you've covered them all in advance.

Good news today, at least the cystitis has gone away :D
Brian

SquirmingSusan
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Post by SquirmingSusan »

My daughter has a little surgical brush that is made for sensory therapy; something called the Wilbarger Protocol. The brushes are just cheap, plastic surgical brushes and they are used for brushing the skin all over the body. It helps with sensory integration disorder, but I've wondered if it might help with other things like RLS. It feels kind of good. Hmm. Maybe I'll try that next time I have the beast in my arms.
Susan

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woodsie357
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Post by woodsie357 »

welcome to the group and thank you so much for joining!
Someone cares about your sleepless nights

eyeofskye
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Post by eyeofskye »

SquirmingSusan wrote:My daughter has a little surgical brush that is made for sensory therapy; something called the Wilbarger Protocol. The brushes are just cheap, plastic surgical brushes and they are used for brushing the skin all over the body. It helps with sensory integration disorder, but I've wondered if it might help with other things like RLS. It feels kind of good. Hmm. Maybe I'll try that next time I have the beast in my arms.


Definitely give it a try. Last night I woke at 4 am leaping about. I was going out of my mind as usual but this time a good overall brushing did the trick, ten mnutes well spent, warm fuzzy feeling and woke on the alarm.
Brian

Polar Bear
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Post by Polar Bear »

I can have cold feet and will still have rls symptoms. The cold water on the legs for about 20 minutes is different.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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