NeuroTalk Support Groups - Newly Diagnosed, Some Advice Please?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Newly Diagnosed, Some Advice Please? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/224645-newly-diagnosed-advice-please.html)

Hi Abigail,

Sorry I am coming to this late, but I have been having Lidocaine Infusions for multiple Neurological issues - including Hypersensitivity - for years.

I simply could not function without it, it takes me from an 8/9 to a 4/5 with my other meds (including oral Ketamine). I have treatments every 4 weeks and the effects last nearly this long, with some tapering of effect at the end.

Side effects are extreme drowsiness for a couple of days, legally you cannot drive, nor would I advise Public Transport on the day. There is risk of damage to the heart during the Infusion, but I had an unrelated heart attack and have Ischaemia and Microvascular Disease yet still my Cardiologist allows the Infusions.

As you are in the UK, bear in mind that cutbacks may take the Lidocaine option off the table. Ketamine is being reclassified as a Schedule 2 Drug, this will make starting new treatments harder in some cases. Cost issues also apply here. I would think very hard and research thoroughly before dismissing treatments that may be lost to you soon.

Dave.

Hello everyone. I am new to this also and I was lucky to find a dr (my second one) that sat and explained everything to me. I have never had a dr so patient, understanding and he explained everything so clearly. My first dr told me "you have CRPS go google it". Well he wasn't going anywhere near my spine lol
Good luck finding a dr Don't give up they have a good one out there for you.

Abigail-- i agree with your idea of pusuing nerve blocks. I saw a pain mgt dr recently for a lumbar sympathetic nerve block for my right leg/foot crps. While reviewing my case he said it was too late for it to be effective. Primarily they work while in the acute phase of crps, not when its become chronic. So no injections for me but definitely you are in the acute phase. I would urge you to continue downthis path in addition to LDN.

It is a boon to have a doctor who takes time to explain, but beware the doctors who tell you to stay away from the Internet. I've had too many of the latter and none of the former.