Hi Andrea,
You’re right. This is a tough one. I agree with Tayla but the tubigrip might be an ask as we all know.

You probably are aware that Baclofen is oral (effectively)Lignocaine (Lidocaine) so it was being used as a systemic local anaesthetic (This is a VERY loose interpretation). It is very close chemically to it. My body hated it from the outset so I read & read about it. This may offer some explanation regarding the efficacy of the desensitisation programme. In my reading I also haven’t found swelling as a side effect but that doesn’t mean it is not affecting Alison that way……age factors & hormone levels may play a role with the drug. Also I understood it was normal practice to wean a patient off Baclofen.

It mimics the action of GABA which inhibits muscle contraction by its effect on nerve bodies that regulate muscle action and
The Rx Drug Guide I have suggests under Stopping the Medication: Ceasing the drug abruptly may produce some adverse symptoms including “possibly seizures. Gradual withdrawal under your doctor’s supervision us advisable.” It is apparently possible for this medication to cause retention of urine (from the guide. This is why I mention the possible link to gender & age in Alisons’ case.

I would speculate that the spasms were also being controlled by the Baclofen to a lessening degree as this is what one of its’ primary uses is: in conditions like Trigeminal Neuralgia.
Others may be more informed than I. I hope I haven't overstepped any boundaries....you and Alison are the concern here.

If Alisons’ oedema is worsening rapidly then I would not chance it with her but this seems to be a gradual onset – you are both having a tough time of it but I am not sure that much can be done as the usual treatments can’t be used on CRPS patients.

I use Paxam (clonazepam) (@ night to help me sleep also – allegedly) but have over about three years but we are gradually increasing the dose as usual with this family of drugs – but despite what I have been repeatedly told, I have not become as addicted as expected. The doses have been titrated slowly and I can skip several doses without nasty effects. I agree these spasms are awful & the uncontrolled twitching etc is way beyond problematic.
I also really wear a heavy burden of cramps for which I take Biperiden (one of its shelf names is Akineton in Australia)…..but that may help for Wednesday.
Tomorrow I am going to ask my doc if I can increase the Clonazepam.
I wish you and Alison all the best. I wish I could help more.
Hugs & ever so caring wishes.
Auberon