I have severe RLS, had it progressively for 3.5 years. At present I am taking 2400mg Gabapentin and 40mg oxycodone daily. My problem although 24/7 is mainly at night time when my feet just will not stop fizzing and are permanently cold no matter how I try to warm them, consequently my nights are totally dominated by this intense tingling at the bottom of my feet and ankles.
Any constructive ideas Guys & Gals???
Wierd!40 mg of oxycodone should eliminate any amount of RLS.
The cold feet are also not usual for RLS.
Who diagnosed your condition?
You say it started 3.5 years ago? That is quite precise? I'm wondering if something triggered the onset.
What has been your history of medications in that time?
Some medications are known triggers- antidepressants, antihistamines and statins.
Please let us know your history so we can help.
Also keep a food diary as many ingredients can set off the fizzies-! Alcohol, sugar, processed foods and many , many more.
Cheers.
Doesn't sound like RLS to me. Check out the diagnostic criteria, it is all about 'urge to move'. irlssg.org/diagnostic-crite...
Also, 2400mg is quite a high dose to treat RLS. Also, gabapentin get less well absorbed the higher the dose; if you want to keep taking an alpha2delta ligand, you may want to discuss with your doctor to switch to pregabalin. Finally, I agree with Madlegs, 40mg of oxycodon is also a very high dose to treat RLS. This adds toy suspicion that you don't have RLS. Please consider a review your diagnosis with an experienced consultant.
Hi LotteM, many thanks for your feed back. A new diagnosis is definitely an option. Any one in the UK got a Name of a respected Neurologist I could consult.
There are afew unusual things in what you write.
"Idiopathic" RLS, also known as primary RLS is largely an inherited condition and hence it usually occurs in early middle age or earlier. For some in childhood.
Since for you it has occurred so late, it would seem most likely that if you do have RLS then it would be "secondary" RLS. In which case, any RLS symptoms you have may be caused by some other underlying health condition you may have.
To name a few, this could be anaemia, diabetes, peripheral neuropathy, thyroid dysfunction, kidney failure or circulatory problems.
There are, as Madlegs, things which can "trigger" RLS, but these usually make pre-existing RLS worse rather than cause it.
Another unusual thing is the symptoms you describe aren't entirely typical of RLS. In addition, apart from one, you don't mention other features that are typical of RLS.
Further 2700mg gabapentin and/or 40mg oxycodone alone I'd expect to relieve RLS.
As Madlegs asks then, I wonder who diagnosed your RLS who has also apparently increased the dose to such a level.
I suspect this is a misdiagnosis.
Assuming that RLS is the correct diagnosis, your doctor should have made investigations for any other underlying condition.
Principally they should have carried out tests for iron deficiency. i.e.serum iron, transferrin, ferritin and haemoglobin.
If your haemoglobin is low, then you have iron deficiency anaemia, which can cause RLS Even if your haemoglobin is normal, if your ferritin is less than 100, then iron deficiency may still be a factor and if it's less than 75 then you might possibly benefit from iron supplements.
If your doctor diagnosed RLS then they should also have done tests for thyroid function, kidney function, diabetes, vitamin B12 and vitamin D.
They should have discussed any other medication you may be taking to see if any of these is a factor.
Medications which affect RLS include antidepressants, antihistamines, some antacids, some heart or blood pressure tablets and some diuretics.
However, overall, without futher detail, I suspect you don't have RLS, but possibly a circulatory problem and/or neuropathy.
According to the RLS diagnostic criteria the principal defining symptom is the "urge to move". This may, or may not be accompanied by unpleasant sensations. Even if there are unpleasant sensations, if there is no urge to move then it's not RLS.
Here's a link to the criteria. There are 5. For RLS to be confirmed then you have to match all 5.
irlssg.org/diagnostic-criteria
Have a look and see what you think.
From personal experience the cold and tingling feet could be nerve related, sensitivity or neuropathy, in my case after back pain/problems. However warming can help with the cold sensations for me.
I also have severe RLS. And somenights, my feet are very cold. My cousin from Finland (a doctor) sent me a pair of lambwool socks. Within minutes my feet get very warm.Magic almost.
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