Update- Finally Met with Pain Clinic

[e365]

Just wanted to post a quick update on my situation.

Was referred to the Pain Clinic at the university hospital near me in November. and I've been waiting. Last Tuesday I got a call that there was a last minute cancellation for Thursday and I could have it so I took it as I've been waiting almost 6 months.

I met all day with a team consisting of a doctor, psychologist and two physiotherapists so it was the most thorough exam I've had yet during the 5 years since this started. Conclusion was small fiber neuropathy with secondary restless legs. Strangely I was very happy with this diagnosis even though it's not great health wise.

Friday I was going from happiness to sadness because I have actually tried to discuss SFN as a possibility with my gp but he's always dismissed it. SFN is treatable in some cases with for example cortisone so I hope it's not too late for treatment.

The team recommended three things: I switch my gp, meet another neurologist and switch the awful pregabalin to amytriptaline. I tried amytriptaline in the beginning but it made my heart pound and I think I was also very out of it in the morning which I told the team, also it is not to be taken with rls...so I will continue with the pregabalin and wait to switch meds after I've seen the neurologist. I'm dreading tapering the pregabalin which I've read can be brutal.

Still not sure about the secondary rls diagnosis which I know many of you have also said especially since the sifrol didn't help.

Now I'm waiting to hear from my gp for a new referral to another neurologist. I hope it happens quickly...but the Swedish health care system is back logged so.....

Anyway, it's a step forward after 5 years....and it's nice to have confirmed what I've been saying AND that this is not in my head as my gp believes. On the other hand, it's been five years of suffering which possibly could have been treated or at least halted.

[Joolsg]

It's good to have a diagnosis at last. All neurologists use Amitriptyline for nerve pain, but it makes RLS much worse.So, if it helps you it confirms you don't have RLS.

I hope things start to improve.

[e365 in reply to Joolsg]

Thanks Joolsg, Yes, it’s a relief. I will wait to meet the neurologist and see what he suggests about medications. Was hoping my gp might contact me today but nope!

[SueJohnson]

Tapering the pregabalin does not have to be brutal. You just need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks. If you feel any withdrawal effects you can cut the tablets in half and/or reduce more slowly. If you do so you will have very few or no withdrawal effects.

[e365 in reply to SueJohnson]

Dr suggested reducing 50mg every three days and warned me it’ll be tough but I’m not torturing myself more than needed. Will take it slowly. Thank you for your input.

[Joolsg in reply to e365]

I reduced 150mg pregabalin over 6 months. I went very, very slowly and had no side effects.

[e365 in reply to Joolsg]

That’s good to hear. I’ll be tapering down from 300mg.