I wonder if some alternative therapies would help.
Maybe ...
acupuncture
low level laser (also called cold laser/soft laser) might have to look around for chiro or PT places that have these..
IFc stim (like TENS only better for deeper tissue and less stinging)
naturopathy

Hi Elise,

I'm new to this forum too (first post!). That said, I've been lurking here and researching PN in general for a couple of months, and I hope I can provide some information that might help. There's an absolute wealth of knowledge on this forum, so hopefully some of the more experienced members will chime in soon too.

For a little context, I'm a relatively young person (32 year old male), and I have neuropathy in my feet and hands (it's mild and diagnosed as idiopathic at the moment, though I suspect hypothyroidism may be part of the issue for me).

I'll try to address a couple of your questions to the extent that I can:

To your first question regarding severity: Being unfamiliar with critical care neuropathy I can't give a meaningful opinion on whether your partner's condition is medically severe, and probably no one besides his neurologist should.

That said, I think you're asking the question in order to try to work out the potential prognosis. In this case, based on all the research I've done, I think it's very reasonable to have hope that he'll improve. This may not necessarily mean he'll end up back to where he was before all of this happened - in most of the cases of recovery I've been able to find people typically have some lingering symptoms. That said, I've found examples on this forum and elsewhere where people have recovered substantially from really severe peripheral neuropathy (i.e., going from disables and wheelchair-bound to walking again). In a lot of cases where the underlying cause of neuropathy can be identified and treated, neuropathy patients do see improvement. In the case of your partner, the cause of his neuropathy appears to be acute, and as long as his nerves aren't still being damaged, they will start to heal themselves. One thing I've learned is that nerves heal very slowly (months to years), so he needs to settle in mentally for a long haul. Nonetheless, I think it's pretty encouraging that he's already seen some improvement since returning from the hospital.

A couple of recommendations on the psychological side of this:

Even for someone with mild symptoms like me, neuropathy can be a pretty scary deal (especially when you don't know the cause). It has helped me a lot mentally to find testimonials from PN'ers that have improved. If you sort this subforum by most views, you'll find a long thread with several stories of people who've experienced varying degrees of recovery from PN. I also found it worthwhile to check out some testimonials on YouTube (particularly if you search for CIDP stories). You'll find some inspiring stories of people who've documented their illness and recovery from that particularly nasty form of autoimmune neuropathy, and some of them are quite young.

I've also found it extremely beneficial to keep log of my symptoms (in my case daily). Because nerves heal slowly it can be pretty difficult to tell on a day to day basis if things are better, worse, or staying the same. Having a log lets you go back objectively and figure out what your trajectory is over a period of weeks or months.

Other things to consider:
A lot of PN folks (myself included) take supplements that help with nerve health. If you haven't done so already, it's worth reading through the long thread on supplements by mrsD in the PN Tips subforum. There's several supplements your partner may want to try beyond a multivitamin and CBD. The thread is pretty exhaustive.

In general, some degree of exercise/movement seems to help PN (definitely in my case). I'd encourage your boyfriend to try to do something to avoid being totally sedentary. Even if the pain keeps him off of his feet, there are plenty of options for upper body exercise, chair yoga, stretches etc. Exercise can help a lot with depression too.

Finally, at least in my case, diet can have a pretty big impact on PN symptoms. A lot of folks with nerve issues find eating a really clean diet helps (something either along the lines of an anti-inflammatory or paleo diet). Avoiding sugar and alcohol has been pretty key for me.

Hope some of this helps!

My husband's PN came on in the hospital during his treatment for Aplastic Anemia. They too had no solutions for him except more drugs and he was not having any of that.

A couple of things to consider. Look at the medications he was on in the hospital. They can have neurological side effects. And, since he was on a ventilator, I would venture to guess that the nutrition provided was less than optimal. Probably also impacted his gut health and the microbiome needs to be restored.

So I would suggest addressing nutrition that support the nerves and mitochondria. Aside from the B12 (methyl form) and other B vitamins, Alpha lipoid Acid made a big difference in his pain level. Within two weeks, he noticed improvement. There's a new form of the vitamin called R-Lipoic Acid which is supposed to be more bio-available.

He also did chiropractic adjustments which corrected his gait. His gait was totally off from being in bed in the hospital for so long.

We also invested in a device called the Rebuilder which is like a tens units. This really helped him a lot. Not everyone has the same response though.

Also, cool foot baths in epsom salts can help. And keep the feet really moisturized with a good foot balm. Kind of acts like an insulator for the nerves.

has guillain barre ever been looked into or talked about by his doctors? you can look it up and see if it maybe fits.