Finally an update! RLS

I’ve experienced the blog cycle of death.  The longer I spend away from blogging the more that happens which I tell myself “I must blog about that”, but end up doing nothing.  So the list of stuff I should blog about gets longer and longer to the point that in the end it just seems to be too long and I wonder where I will start and how I will get through all the information!

But in the end I just looked this death cycle in the eye, gave it a slap, and here I am.

So in my last post I left you with my experiment that I was going to reduce my coffee and all artificial sweeteners to see if it made a difference to my restless legs.  I was also having trouble with raised results from my liver function tests and LDL cholesterol, and I was trying to raise my Vit D levels.

Well after that things actually got a little worse.  The change in diet made no difference at all to my RLS.  In fact it seems like I had more difficulty controlling RLS.  I was taking 1.2-1.5 grams of neurontin at night and it didn’t seem to help at all.  Every night I would need to take at least 1 tramadol to control the restless leg symptoms, and more usually 2.  It got to the point where I was having absolutely horrible nights’ sleep beyond the normal degree of horror I was accustomed to.

If I was brave I would take my neurontin around 7pm with the aim that by 9.30pm there would be a maximum blood plasma level to stop the RLS.  However if by 9.30pm I had RLS, or if I tried to go to sleep and ended up getting RLS and not being able to sleep – by which time it would be 10pm or 10.30pm – then I’d have to take a tramadol.  Then I’d have to wait another hour for it to kick in and work!  So by the time I could actually get to sleep would be 11.30pm.  I was often waking up at 2am-3am with an achy back too, so would have to take something for that – wait an hour for it to work – and get back to sleep.  So many days of poor sleep.

I had been off coffee and artificial sweeteners for 6 weeks yet was taking both neurontin and tramadol (in increasing doses) to control the RLS – and now back pain which was waking me in the early hours.  It all came to a head one evening when I suddenly got horrible uncontrollable shivering yet had no fever.  I had an awful feeling it was withdrawal symptoms from tramadol.  I quickly took 100mg and after an hour felt better, but only for a while.  That night and the following day was one of the worst I’ve had.  It seemed like no matter how much tramadol I took I couldn’t stop the withdrawal symptoms.  I’d get shakes, racing heart, and have to stave off panic attacks.  Over the course of the day I must have taken about 800mg of tramadol – which of course is way higher than what one should take.  I finally called a doctor friend who explained that tramadol is an agonist/antagonist so if one takes too much then it can actually push you into withdrawal and he advised not taking anymore for at least 8 hours.  I’m not sure if that is true but I followed his advice and slowly began to turn around.

It was a horrible few days – but it made me determined to get on top of this damn RLS and get rid of this reliance on tramadol.  I managed to get on to a regular dose of tramadol to control withdrawal and the rls – dosing every 8 hours or so with 100mg – thus taking about 300mg per day.  I slowly began to taper down.  However I knew I couldn’t just quit as I had nothing to control these damn restless legs!  What to do?

At the same time I decided to get my health into much better shape.  I had not been going, or had been inconsistent in going, to the gym.  I contacted a highly recommended personal trainer / diet guru online (who lives in Florida) and paid up for 3 months supervision and guidance.  Right away she put me on 5 days gym every week and cardio every day!  This as well as changing up my diet – putting me on 10% carbs, 30% protein and 60% fat (healthy fats).  Wow. To be honest at first I had to wrestle my mind into submission as it was pulling up a ton of excuses on why I couldn’t do cardio everyday, or gym 5 days per week.  I knuckled down and got into it.

After 3 weeks I had a follow-up appointment with my doctor to check my lipid profiles and liver function tests.  This is the doctor that put me on a very low dose statin since my LDL is always so high.  My results came back perfect!  Really.  I was absolutely stunned – again!  My LDL, Cholesterol, LFTs etc. were all normal!  My cholesterol and LDL were low!  Also my blood pressure was terrific – measuring in at about 110/60.

So I was definitely on the right track. Again, this was about 4 months ago.  At that time I also had this niggling nerve pain in my foot so I went to see the spine specialist. I ended up having an MRI which showed no problems (and to this point I still have this niggling nerve pain), however he took my medication record and was concerned I was taking so much tramadol.  So he sent me to the pain specialist.  At this point I’m pretty sick and tired of seeing so many doctors, and sick and tired of this RLS.  Anyway the pain specialist immediately took me off neurontin (since it didn’t seem to be doing anything) and put me on Lyrica.  She was concerned about me waking so frequently with back pain so put me on a low dose of Cymbalta – which is an SNRI – as one of the uses for Cymbalta is chronic lower back pain.

I kept an accurate record of my medications and found that within a week I was sleeping through the night!  No back pain.  I was really impressed with this doctor.  There was no change in my RLS so the doctor increased my dosage of Lyrica to 300mg.  150mg in the morning and at night.  She said that I needed to maintain a good blood plasma level of Lyrica.  Over the next couple of weeks I only needed tramadol 3 times!

So that is where I am with my RLS.  I have just had a break from the Gym for about 3-4 weeks as I got sick with a cold – and then got another cold right after the first one finished.  I went to the doctor after about 3 weeks of being sick with the cold and she berated me for taking so long to see her since I’m on immunosuppressants.  She sent me for an x-ray to rule out TB (which really scared me!) and put me on antibiotics which seem to have done the trick.  So this week I’m back at the gym and I’ll start cardio again soon too. My diet remains the same and I’ve certainly lost some fat.  My RLS seems to have been worse since I’ve had the cold but hopefully it will settle again.  It is much better though now I’m on Lyrica.

Finally finished an update!  I’ll give an update on my PsA next.


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