Consultation with Prof Walker - says it's not RLS...

[howbeit-abroad]

Curious consultation with Prof Walker (who apart from being 20 minutes late was very kind and attentive. Recommended if you can get through to his secretary!).

His diagnosis was that I don't have RLS at all, and instead some sort of drug-induced dysesthesia. Reasons being:

- my symptoms are primarily during the day and not at night

- movement doesn't alleviate my symptoms in the way that it does for most RLS sufferers, apparently (I will move my legs but still feel the unpleasant sensations)

- opioids don't work for me at all (for RLS sufferers they'll reliably stop sensations within an hour)

He unfortunately couldn't explain why my symptoms are so intermittent - I'll have weeks with no/few symptoms, and then they'll suddenly flare up, and even during the course of a day they'll come and go. He was also surprised by my presentation, saying it was much more common in people who are discontinuing SSRIs. He also didn't have much to suggest by way of symptomatic relief, other than to say that filling myself with gabapentinoids probably wouldn't do much good.

As I'm vegan (only a recent change; have been lacto-vegetarian for about ten years though) he also suggested checking for vitamin deficiencies as those can also cause similar symptoms.

My psych has switched me to vortioxetine and Walker said that that might help, and failing that bupropion or trazodone might be good.

Tbh I'm still slightly skeptical; I've halved my duloxetine dose and my symptoms still come and go. (And now I'm more depressed, great!) Will give vortioxetine a go and see if that helps.

Perhaps the above will help someone in a similar situation.

[Joolsg]

Interesting. The fact that movement doesn't stop your sensations is a sign that it's not RLS.

Did Prof. Walker give you ANY thoughts on what you have, if it isn't RLS.

I do recall that you had been on Anti depressants for years and not experienced any strange leg sensations until recently.

Also, your sensations were worst in the day and didn't stop you sleeping.

You do have to find out what it is and what is causing it.

It could be peripheral neuropathy or fibromyalgia.

It may be caused by low B12 or low folic acid. Did Prof. Walker suggest any further blood tests?

[howbeit-abroad in reply to Joolsg]

Finally got my clinic letter through:

> The symptoms as described to me are not typical for restless leg syndrome. The timing in the day is not typical and the symptoms themselves, without immediate relief from movement are also not typical and these symptoms sound more likely to be drug-induced dysesthesia. The best treatment would probably be to try alternative antidepressants. Certainly, for restless leg syndrome Bupropion, Trazadone and vortioxetine are probably better than the other antidepressants, and I would certainly suggest if possible transferring him onto one of these antidepressants.

He also suggests checking vitamins (as I'm vegan - B12, D and folate) as well as thyroid function. I did the Randox Everyman test recently and all were normal except vitamin D which was a little on the low side.

I guess I'll try vortioxetine and see what happens but it's all still a bit baffling! He said to get back in touch if the change doesn't help.

[howbeit-abroad in reply to Joolsg]

Unfortunately the switch to vortioxetine didn't seem to really help. I'm in the process of discontinuing it altogether - hopefully that will tell me if serotonergic antidepressants are the root cause here. But have been fully off vortioxetine for a few days and my symptoms are bad.

[bookish]

Could be worth testing for coeliac , just in case, and then trialling a gluten free diet. Best not to do the GF before testing because if it works you won't want to go back on for testing (and it isn't advisable as it restarts the inflammatory process that you've just begun to repair). Some need to be grain free, not just gluten free, and don't assume that a clear for coeliac means you don't have a gluten related disorder. Testing isn't that good. Do genetic, if you can manage the £. Could explain both depression and movement disorder. A food diary may help, especially as symptoms intermittent. Could also/additionally be oxalates, histamine, nightshades.....maybe try an autoimmune anti-inflammatory elimination and reintroduction diet. Made a huge difference to me. Best wishes

[howbeit-abroad in reply to bookish]

Thanks so much, might give that elimination diet a go.

[Baz33]

Movement Doesn't improve mine either , I'm on gabapentin and a ton of iron,had an iron infusion on Monday as iron keeps falling,legs have been good for 6 weeks but starting to kick again, had to come off my antidepressants so rough ride , taking positive Outlook x 4 a day and saffron x 1 a day ,mood slightly improved.

[Hidden in reply to Baz33]

🫣 The iron at night trick won’t work, allegedly, for several weeks following an infusion. Did you come back on here to discuss? Taking a highly bioavailable form of folic acid would have helped with absorption and possibly helped ferritin levels. Did you try the Trazodone?