Covid

[Memmy]

Just had COVID and weirdly no RLS for the whole time. Ok I'm taking 0.09mg mirapex every evening. Nothing else works except tramadol which I alternate with every so often. Is there anything else that works. I've tried pregabalin and the others but nothing. I would like to stop mirapexin completely but too scared. My triggers are definitely sugar so I'm using Stevia all the time. Hope one day a miracle happens for us with this torture

[SueJohnson]

How long have you been on Mirapex?

[Memmy in reply to SueJohnson]

Many years, so many I can't even remember. I've come off it from time to time to try something else but it seems to be the only med that works for me. I have a rest and take tramadol from time to time. As I take a minimum dose of 0.09 it doesn't affect me when I come off it.

[SueJohnson in reply to Memmy]

Since you have been on it for 10 or more years it is very unlikely you will suffer augmentation. 30% of people don't. Since it works for you, I would stay on it.

[Memmy in reply to SueJohnson]

Thanks. I'm trying to keep it under control and being very careful with my sugar or rather no sugar intake

[Joolsg]

First week of Covid in March '22 my RLS was fine. Then I had paxlovid rebound and the RLS came back. My RLS played up for the first time since July '21. After Covid, it settled.

I see from previous posts that you came off Mirapex and switched to pregabalin but even 400mg didn't help.

So you went back on Mirapex. You are like me. Gabapentin and pregabalin didn't help.

Tramadol should be avoided because it's the only opioid that also causes increase in RLS severity.

You should push for Oxycodone or Buprenorphine. You have exhausted the 2 main categories of RLS drugs and opioids are your best option.

Your GP will be reluctant to prescribe, but show them the Mayo algorithm anf the Massachussetts Opioid study. Low dose opioids are very effective and do not lead to addiction(unless history of abuse) or tolerance in RLS.

[Memmy in reply to Joolsg]

Thanks. I'm trying to keep it under control. Sugar is a big trigger for me so avoiding it really helps. Hope you are still doing well

[Joolsg in reply to Memmy]

Yes thanks. The 0.4mg Buprenorphine gives me 24/7 cover and I'm sleeping over 8 hours every night.Clearly, Buprenorphine works for many of us that have failed gabapentin, pregabalin, tramadol and Oxycontin. It affects slightly different opioid receptors.

I really hope you discuss fully with your GP and you find a better alternative medication.

[Simkin]

I had the six week covid and despite being in bed for six weeks I had NO RLS for the whole time.It was BLISS.

Also when I broke my foot and was in plaster for six weeks I had NO RLS.

But both times as soon as I was OK my RLS came back with a vengeance.

[Memmy in reply to Simkin]

This is such a strange thing

[Simkin in reply to Memmy]

Memmy, my take on it is that the body is throwing everything into helping us recover from covid etc & that is why the RLS stops until you are better but then makes up for it big time.Simkin

[SueJohnson in reply to Simkin]

The answer is that most COVID-19 patients develop an abnormal inflammatory response to the viral infection, and serum ferritin as a marker of inflammation with the result ferritin increases and of course increased ferritin helps RLS.

[Simkin in reply to SueJohnson]

Ah that is interesting....

[SueJohnson in reply to Memmy]

See my answer to Simkin.

[Eryl]

If you know that sugar is a trigger have you researched why it may be a trigger? Refined sugar is a trigger because it raises blood sugar, and blodd sugar is also raised by eating other carbohydrates especially refinedined ones such as foods made with white flour. Raised blood sugar causes inflammation in the body including the nerves making them hypersensitive which is the main cause of RLS. Other things which ause inflammation are refined seed oils such as canola oil and sunflower oil, Change your diet and you could eliminate your RLS without medication as I have done.

[Memmy in reply to Eryl]

Hi Eryl, I've eliminated sugar which has helped a lot. I only use olive oil even for cooking. Yesterday I added some balsamic vinegar to our salad and I think that caused a slight reaction. I'm trying hard to keep in line and would love to give up all meds but I'm scared of the dreaded leg

[Jailsec]

It is the worst thing imaginable. Side effects from medication is awful. But I couldn't live without it to stop the restless legs. It causes depression along with not being able to enjoy life. I pray someone could pinpoint a cause and rid people of this terrible affictshun.

[SueJohnson in reply to Jailsec]

Are you taking anything for your depression?