Priorities at first appointment

[Squirmy69]

Hi,

I have an appointment with my GP in 6 days. I’m very nervous as I am really poor at self advocacy. I am autistic and have ADHD and this makes appointments really hard. I have loads of information from here which should help. I am currently getting 5hrs sleep a night on average and I wake up with RLS 5-10 times. I am taking Magnesium liquid but was wondering if there was a particular form that works best. I am also an endurance runner. It is a important for me and my mental health I am desperate not to give it up but I’m worried I will be told I have to do this first before any investigation. I do take electrolyte drinks religiously after training and during long runs. I have 3 things that I wanted to ask

1) Request iron parameters checked (historically I have had low ferritin)

2) Changing from Sertraline to a more compatible antidepressant and anti anxiety drug

3)Referral to a neurologist

Should I prioritise any of these? Any tips on making them understand how much his affects me. I have had symptoms on and off for 30yrs but it has really worsened over the last couple years but only recently understood I what it is.

Thanks in advance.

[Madlegs1]

Yes- you need to get your serum ferritin number so as to decide if it's ok to get an infusion or to supplement.

What are the ingredients in your electrolyte drinks? Sometimes there can be triggers in the most innocuous substances.

Good luck.

[Joolsg]

Sadly, your GP is unlikely to have ANY knowledge of RLS. It isn't taught at any stage in medical training and even neurologists know very little.Your GP will look up RLS in his BNF and it will direct him to prescribe dopamine agonists ( Ropinirole, Pramipexole or Rotigitone). REFUSE.

Dopamine agonists are now for 'end of life scenarios' amongst experts due to the inevitable drug induced worsening ( augmentation) and very high rates of Impulse Control Disorder.

So, first your endurance exercise. That WILL worsen RLS, so Try to exercise before noon.

Sertraline is a known trigger. All anti depressants worsen RLS.

Safe alternatives are trazodone, wellbutrin or Vortioxetine.

If you switch, do so under medical supervision and go slowly.

The correct treatment of RLS is quite simple:

1. Fasting, morning full panel iron blood tests. Serum iron needs to be above 60ųg and serum ferritin above 200ųg/L. Raise iron via pills every OTHER night or iron infusion.

2..Review and safely replace all trigger meds. Anti depressants, sedating anti histamines, statins, beta blockers, PPI meds.

3. If 1 & 2 do not help, prescribe pregabalin or gabapentin at NIGHT only. Gabapentin( av dose 1200-1500) has to be taken in split doses of 600mg 2 hour's apart. Pregabalin ( av dose 150) can be taken in one dose.

4. If 3 doesn't work after 2 to 3 months, then prescribe a low dose, long half life opioid ( methadone or Buprenorphine).

Stage 4 will give your GP anxiety attacks as doctors think opioids cause addiction and tolerance..They do when prescribed for pain, but they don't for RLS at low dose. Dr Winkelman's opioid study is proving that they are safe, highly effective, do NOT cause addiction or tolerance.

If your GP cannot arrange blood tests, direct him to NICE guidance.

A referral to a neurologist or Sleep Clinic may be needed to get a prescription of opioids.

Good luck.

Be firm. Refuse dopamine agonists.

Show him the RLS- UK website, particularly the Useful Resources on Iron therapy and withdrawal from dopamine agonists.

[Squirmy69 in reply to Joolsg]

Thanks so much

[SueJohnson]

1) Ask for a referral to Dr. Cocco. If you can't get it then see him privately.

2) Ask for a prescription for trazodone or Wellbutrin

3) Ask for a prescription for gabapentin of pregabalin to start after you are off sertraline.

4) Ask for a prescription for morphine. Since it only lasts 4 to 6 hours you will need to take it at least twice a day or you will get withdrawal symptoms so be sure you are prescribed enough.

Write all this down on a piece of paper you can take with you.

Print out the appropriate sections of the Mayo Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

Bring someone along to the appointment with you who can testify about your symptoms and needs who also has the above written down so can make sure you cover everything.

[Squirmy69 in reply to SueJohnson]

thanks v much

[DicCarlson]

When my RLS first appeared I was training for a 40 mile mt. bike race. I eventually did not even start - all trained up, but Zero sleep! I still trained but at a very low heart rate. Consider - especially if you have any other digestive issues that it could be Small Intestinal Bacterial Overgrowth (SIBO) - linked to higher incidence of RLS. Also, introduce the probiotic LP299v to help with iron absorption and add other fermented foods (kimchi, kefir, etc).

jarrow.com/products/ideal-b...

[maribarosay]

take someone with you to your doctor’s appt