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Old 12-07-2018, 04:52 PM #1
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Default Critical Care Neuropathy

Hi!

I'm new here. I'm posting on behalf of my boyfriend, who developed critical care neuropathy in his feet after a severe infection that went septic. Before this happened, he was an active 34-year-old engineer who played soccer and did martial arts, as well as played the drums. Now, getting up and going to the bathroom is extremely painful and he has not left the house since he got home from the hospital, about three weeks ago.

The neuropathy first presented as severe pain in both of his feet, including extreme sensitivity to touch. After a few days of getting off the ventilator, his right foot went completely numb and he developed foot drop on that foot. At night he would get these flare-ups that felt like someone was stabbing his feet at different points and the pain would shoot up his foot, sometimes past his ankles. Doctors misdiagnosed him, I did some googling and found out about neuropathy and we both fought so he could get an emg, which confirmed the diagnosis. Since he got home, he's regained feeling in his right foot and can raise it slightly. The flare ups have gotton better, but he is still in a severe amount of pain daily and has not been coping well. The doctors all say that this amount of pain isn't normal and they just seemed perplexed on how to deal with it. He's on 900mg gabapentin 3x a time, as well as tramadol 3x a day 50 mg.

On top of that, he's deeply traumatized about the whole ordeal, badly enough that his doctors want him to see a therapist about post icu PSTD. He is not someone who has lived with pain before (I live with chronic pain myself) or has ever really been sick or had a trauma or felt helpless before so he has no coping skills in which to have to deal with this (which isn't his fault or a bad thing). He's expressed some suicidal thoughts to me (passive ones, like he wishes he didnt survive the icu or that he is worried that if this goes on for a few months, he'll kill himself). He just really depressed and hopeless and we're not even three weeks into this.

I've spent the past week reading through this subforum and have learned a lot. I'm going to pick up some CBD for him tonight and he is starting a multivitamin. From what I'm reading, it seems like there is a lot of hope for him- we know what the underlying cause is and that is healing, the foot drop went away, the pain is changing (and he's getting some itchiness now) and seems to be getting less severe, though its hard to tell on the day today. I'm hopeful he will see a lot of improvement over the next year, but even if he doesn't, I have faith we will find ways for him to have a good a life as possible.

However, I am deeply afraid that the pain will be too much for him to cope with and he'll do something drastic before it has a chance to get better or he has a chance to learn new ways of living. He's not weak for feeling this way, I have my own struggles with dark thoughts on my bad pain days and I just want to support him through this the best I can.

Given all of these contexts, I have a few questions (and I apologize in advance if these are stupid):

1. How do you know if the polyneuropathy is severe? I've been reading a lot of studies on critical care neuropathy that says full recovery is possible within a year except for severe cases. I don't know if my partners case is severe or not! The pain is certainly severe, but that just seems to come with the territory.

2. He really hasn't been doing anything at all since coming home from the hospital. I don't want to push him and yet, I worry that him sitting in pain all day staring at the TV is going to make the depression/ptsd worse. What are ways people are able to maintain a life when dealing with this pain? Are there things loved ones did that were helpful? Are there things loved ones often do that are not helpful?

3. Standing on his feet is very painful and we are getting conflicting information about how to go about PT and movement. Some doctors and physical therapists have said he should do PT and try to stand/ move to "desenstize" his feet, others have advocated that he not push himself and make the pain worse. I tend to find myself agreeing with the latter, solely because I trust those doctors more but I have no idea what is actually correct.

4. Is it okay to have hope or am I fooling myself?

5. Are there any databases or websites that can refer me to mental health providers who work with people with medical trauma/ pain induced depression? Google hasn't been super useful.
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Old 12-07-2018, 06:57 PM #2
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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
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Old 12-08-2018, 01:25 AM #3
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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!
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Old 12-08-2018, 11:25 AM #4
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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.
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Old 12-08-2018, 12:51 PM #5
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has guillain barre ever been looked into or talked about by his doctors? you can look it up and see if it maybe fits.
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Old 12-08-2018, 01:07 PM #6
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Quote:
Originally Posted by elise49 View Post
Hi!

I'm new here. I'm posting on behalf of my boyfriend, who developed critical care neuropathy in his feet after a severe infection that went septic. Before this happened, he was an active 34-year-old engineer who played soccer and did martial arts, as well as played the drums. Now, getting up and going to the bathroom is extremely painful and he has not left the house since he got home from the hospital, about three weeks ago.

The neuropathy first presented as severe pain in both of his feet, including extreme sensitivity to touch. After a few days of getting off the ventilator, his right foot went completely numb and he developed foot drop on that foot. At night he would get these flare-ups that felt like someone was stabbing his feet at different points and the pain would shoot up his foot, sometimes past his ankles. Doctors misdiagnosed him, I did some googling and found out about neuropathy and we both fought so he could get an emg, which confirmed the diagnosis. Since he got home, he's regained feeling in his right foot and can raise it slightly. The flare ups have gotton better, but he is still in a severe amount of pain daily and has not been coping well. The doctors all say that this amount of pain isn't normal and they just seemed perplexed on how to deal with it. He's on 900mg gabapentin 3x a time, as well as tramadol 3x a day 50 mg.

On top of that, he's deeply traumatized about the whole ordeal, badly enough that his doctors want him to see a therapist about post icu PSTD. He is not someone who has lived with pain before (I live with chronic pain myself) or has ever really been sick or had a trauma or felt helpless before so he has no coping skills in which to have to deal with this (which isn't his fault or a bad thing). He's expressed some suicidal thoughts to me (passive ones, like he wishes he didnt survive the icu or that he is worried that if this goes on for a few months, he'll kill himself). He just really depressed and hopeless and we're not even three weeks into this.

I've spent the past week reading through this subforum and have learned a lot. I'm going to pick up some CBD for him tonight and he is starting a multivitamin. From what I'm reading, it seems like there is a lot of hope for him- we know what the underlying cause is and that is healing, the foot drop went away, the pain is changing (and he's getting some itchiness now) and seems to be getting less severe, though its hard to tell on the day today. I'm hopeful he will see a lot of improvement over the next year, but even if he doesn't, I have faith we will find ways for him to have a good a life as possible.

However, I am deeply afraid that the pain will be too much for him to cope with and he'll do something drastic before it has a chance to get better or he has a chance to learn new ways of living. He's not weak for feeling this way, I have my own struggles with dark thoughts on my bad pain days and I just want to support him through this the best I can.

Given all of these contexts, I have a few questions (and I apologize in advance if these are stupid):

1. How do you know if the polyneuropathy is severe? I've been reading a lot of studies on critical care neuropathy that says full recovery is possible within a year except for severe cases. I don't know if my partners case is severe or not! The pain is certainly severe, but that just seems to come with the territory.

2. He really hasn't been doing anything at all since coming home from the hospital. I don't want to push him and yet, I worry that him sitting in pain all day staring at the TV is going to make the depression/ptsd worse. What are ways people are able to maintain a life when dealing with this pain? Are there things loved ones did that were helpful? Are there things loved ones often do that are not helpful?

3. Standing on his feet is very painful and we are getting conflicting information about how to go about PT and movement. Some doctors and physical therapists have said he should do PT and try to stand/ move to "desenstize" his feet, others have advocated that he not push himself and make the pain worse. I tend to find myself agreeing with the latter, solely because I trust those doctors more but I have no idea what is actually correct.

4. Is it okay to have hope or am I fooling myself?

5. Are there any databases or websites that can refer me to mental health providers who work with people with medical trauma/ pain induced depression? Google hasn't been super useful.
It may get better in time as nerves take longer to heal. I believe in using opioids for severe pain and supplements all the time. A good B-Complex. I use a liquid sublingual 2000MCG, Alpha Lipoic Acid, & Curcumin. I had a stem cell transplant and suffered PN from the chemo associated with my cancer. I use ice packs on my feet when they are burning and that helps. Try Melatonin for sleep. There is a prescription vitamin ADEK that might be worthwhile. Need to check his Vit. D level before starting. You can buy it OTC; but I'd ask for the prescription version. Hope some of this helps. Again, this is a long game. Patience is key and that is the hardest pill to swallow!
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Old 12-09-2018, 01:14 PM #7
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Hi Elise,

So sorry to hear about your boyfriend. I can only imagine his emotional struggles. I too was once incredibly active, and feel somewhat fortunate that I was hit with the neuropathy later in life. I would have been devastated at his age. Not that I'm happy about it now, mind you, but at least it didn't hit me in my prime. I certainly pass no judgement on him. (I'm also an engineer by the way.)

In addition to the CBD oil, I would suggest getting him on a high quality fish oil to supply good doses of Omega 3 oils. There's pretty good evidence that they're neuroprotective and may aid with healing. And yes, nerves can heal...it just takes time. If it helps, here's the fish oil I get from Amazon:

Amazon.com: Viva Naturals Omega 3 Fish Oil Supplement, 18 Capsules - Highly Concentrated Fish Oil Omega 3 Pills, Burpless, 2,2mg Fish Oil/serving (14mg of EPA & 48 mg of DHA): Health & Personal Care

It's definitely ok to have hope. My symptoms are much more tolerable than they were when I first got hit. I think back on those days, and it's like night and day. The anxiety and stress associated with the sudden onset made it 1000 times worse. Try to encourage positive thoughts that it WILL get better so his anxiety might lessen and all the horrible stress hormones reduce.

If he's like me, meditation would be be difficult, but I do try it just to relax when I'm flaring. I put on my favorite calming music, and just try to let go.

Best of luck to you both. Please let us know he's doing.

Janie
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Old 12-16-2018, 11:15 PM #8
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Hi!

I just wanted to thank everyone for the incredibly thoughtful replies. I'm a bit slow with getting back to things right now because its my finals period, but the advice was very helpful and its just nice to not feel alone in this.

Definitely been reading through the supplement thread. We're waiting on bloodwork before adding anything beyond the multivitamin. He's going to try THC/CBD tonight to see how that helps. Melatonin didn't seem to work, but I think we're gonna try valerian root tea to see how that works. Also, we both got tens units- super helpful. It gives him some relief in the short term, enough to get a nap in and that makes a huge difference since sleep isnt really happening much.

Things are still pretty rough. He had a really good week last week, was walking around the house a bit (the standing pain had gone) and even went to a holiday party with my family. But now, the pain is back with a venegence and he had a pretty bad panic attack because he thought it meant he was getting worse. From my perspective, there is so much improvement since November and since I first posted here- but I think its really hard to see on a day to day for him. I think biggest hurdle for him is the emotional toll this is taking- he feels like a stranger in his own body. I'm trying to let him have space to grieve and be angry at all this while reminding him that the pain is going to fluctate and its all part of the process and to hold on hope.

Also, thank you for the tip about the foot balm- his feet have been really dry and I'm worried the skin will start cracking so its another good reason to use it.
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Old 12-23-2018, 08:16 PM #9
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Hope the THC/CBD is helping. It helps me. CBD on its own does nothing for my constant antagonizing pain but combined with low THC, it at least takes my mind off of it and elevates my mood.
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