Thank you for letting me join!

[stjohnh]

One thing to bear in mind, the doses of opioids used for RLS are generally quite a bit less than the doses used for pain, and side effects are less as well (usually).

[Silvrday]

Forget to mention another indicator of augmentation: symptoms occurring in new parts of the body; for example, symptoms used to happen only in the legs, now they’d occurring in the arms or torso.

He actually started with both arms and legs, hence why it was scary when he had the shoulder replacement because he had that arm in a sling, even when sleeping and wasn't supposed to move it. I will say the arms are random for the most part but will randomly do it or if he's having a really bad night.

Silvrday

[Silvrday]

One thing to bear in mind, the doses of opioids used for RLS are generally quite a bit less than the doses used for pain, and side effects are less as well (usually).

Thank you! I will let him know that.

[badnights]

No matter what he feels, he has to stop the Benedryl. If he has WED/RLS, it is definitely hurting him, and I would guess he can’t tell because he’s in the midst of such other misery. He should vape some marijuana, or get a prescription for pregabalin or gabapentin to help with sleep and potentially help the WED/RLS a bit.

My first thought was “Did your husband’s WED/RLS start shortly after starting a new medication?” but I see you have some ideas on that. What are your thoughts? The only possible med trigger that jumped out at me was Celexa, but he started it at the same time. And it’s not a trigger for everyone.

There is some link between WED/RLS and guts – people with SIBO and IBS are both more likely to have WED/RLS than the general population.

But to Holland's concern that he may not even have WED/RLS - Each of the following 4 diagnostic criteria must be met to confirm a diagnosis of WED/RLS:
- there is an urge to move the limbs, usually accompanied by uncomfortable sensations (many people experience these sensations as pain, others as creepy-crawlies or bugs or electricity - since the sensations are outside the range of normal human experience, there is no adequate vocabulary to describe them);
- the urge to move & accompanying sensations worsen (or first appear) when the limbs are at rest (especially, when sitting or lying down);
- the urge to move & accompanying sensations improve while the limbs are active (walking, stretching, etc); AND
- there is a circadian component such that everything is worse in the evening and/or night.

So does he meet those criteria?
1. He is clearly getting the uncomfortable sensations, but I don't see how he can lie in bed for hours without being forced to get up and walk around - unless the Mirapex is controlling the urge to move more successfully than it is controlling the unpleasant sensations?? Does he actually have an overwhelming urge to move?
2. From your description, he experiences the sensations (ad the urge to move?) more when he's sitting or lying down than when he's standing. True?
3. It is not clear if his symptoms are relieved by standing, walking and moving and stretching and using the muscles of the affected limbs. Are they?
4. It seems his symptoms are worse in the night and better in the morning because he can fall asleep toward morning; but you should verify that is actually the case. If his symptoms are all day now, then recalling before he started the Mirapex, were they worse in the evening then?

Next, if he actually has WED/RLS, then for him to be augmenting,
1. All of the following must be true:
- he had an increase in symptom severity as compared with when he started treatment
- the increase in symptom severity cannot be accounted for by other factors (change in medical status, lifestyle, natural progression of the disorder)
- there was a prior positive response to treatment

2. Also, either A or B has to be true:
A. persisting paradoxical response to treatment: WED/RLS symptom severity increases some time after a dose increase and improves some time after a dose decrease; or
B. earlier onset of symptoms. This can mean either an earlier onset by at least 4 hours
OR and earlier onset by 2-4 hours accompanied by one of the following:
- shorter latency to symptoms when at rest, as compared to before treatment
- extension of symptoms to other body parts, as compared to before treatment
- greater intensity of symptoms, as compared to before treatment
- shorter duration of relief from treatment, as compared to before treatment

So - -
1. he has had an increase in symptom severity,
not sure if it can be accounted for by other meds (Benedryl??),
but there was a prior positive response.
2. I've never heard of anyone having A.
For B, we know the symptoms have spread to his arms - they were not in his arms when he started Mirapex, correct?
Can you say if his symptoms now begin 2 hours earlier than they used to? If they do, and if the worsening of his symptoms can't be accounted for by other meds or substances he's taking, then he's augmenting.
Other indications that he is augmenting would be that the symptoms are more intense, that they start sooner when he sits or lies down, or that the medication doesn't last as long.

So - I suspect he has WED/RLS but it would be good if you both went over those criteria and brought it up with the neurologist if there's something that doesn't fit. He shouldn't be taking Mirapex if he dosen't have WED/RLS. And he shouldn't be taking it if he has augmented WED/RLS.