I'm still broken. What can I do?
August 22, 2016 12:59 PM   Subscribe

A few years ago I asked a question about my completely destroyed life and the advice on the green was to attend to my physical problems first. Unfortunately that has not gone well. My brain is more broken than ever. I'm not sure what to do next.

Physical Diagnoses: Peripheral neuropathy, progressing, unknown cause. I am allergic to the common medications for nerve pain, so I am in physical agony about 80% of the time. It's like having knives driven into my left thigh and hot nails driven into my toes while wearing a tight sock that goes up to mid-thigh. I am also frequently hypothyroid because I stop taking my medication when it runs out. I don't like to go out in public and it's agonizing to pick up prescriptions. My most recent thyroid bloodwork was a few points shy of "should be in a coma." I've been taking my medication faithfully for about two weeks now.

Mental Diagnoses: Treatment-resistant Bipolar II, borderline personality disorder (currently self-harming by ripping out finger and toenails at the root), PTSD complex, eating disorder, depression, anxiety disorder, OCD (trichotillomania).

So I was referred to a neurologist who has CP and got extremely angry with me because I couldn't understand anything he said. He also used my body to hold himself up during my exam, literally sitting on me knee, which made me extremely uncomfortable. He wanted me to repeat all my neuro tests at his hospital, which my insurance wouldn't pay for, so I refused. I tried to get another neuro appointment locally, but the only doctor available was one that I'd been privately warned against by other medical professionals. The original hospital that I visited for my previous neuro appointment will not assign new clinicians. So the physical problems are currently a dead end. Even if we could figure out why I have progressing neuropathy there's apparently nothing to be done about the nerve damage that's already occurred, so this is pretty much my life now. I fantasize about leg amputation.

Also a dead end seems to be any attempt to get treatment for my bipolar disorder. I couldn't get a referral to the local outpatient clinic. Privatized social work was a bust. Only two therapists at my local conglomerate take my insurance and one of them fucked up my documentation so badly that I got kicked off of disability and had to spend thousands to get back on. The other one specializes in relationship and family issues. Attempts to get appointments with psychiatrists at the local hospital have also failed--they "don't really do" ongoing outpatient treatment and it's pretty much impossible for me to get to the city anyway. Uber is against the law here and all the taxis are sketchy gypsy cabs.

My support system is non-existent. My family is just not supportive. Everyone is tired of my brokenness and no one wants to deal with it anymore. I have a single friend who lives 3,000 miles away and just got married. We have basically agreed to mostly not talk about my problems because it causes him too much distress. My current mental state is... poor. It's been years since my last question on this topic and I'm still not eating, showering, or cleaning with any regularity. Last year I ordered a new computer because mine was starting to misbehave and it's still sitting in a box. I have several years of Christmas and birthday presents sitting in bags next to my front door. I just can't even be bothered to use them or put them away. The depression is as bad as it can be, really. Most of my days are spent playing Minecraft, reading, surfing the internet aimlessly, and sleeping. Mostly sleeping. I'm barely alive.

I don't know, guys. I don't know what to do now. I've called everyone--hospitals, private practices, NAMI. I've asked for advice from social workers I know and followed it, only to be told that this line of inquiry is a dead end. I've literally talked to dozens of people. I've asked for help from my family but they won't do anything to assist. My GP is at a loss. No help is forthcoming, from anywhere. Do y'all have any ideas for something I've not yet tried? (I'm in New York State.)
posted by xyzzy to Health & Fitness (22 answers total) 6 users marked this as a favorite
Wow this is a lot. I have also been told by multiple providers that they just can't help me. And that really sucks when what you need is help.

I think you need to try to find a therapist that thinks they can help (at all). If you can get some of the overwhelmed feeling down, it may be easier to start to chip away at these other issues. Maybe you can find somebody who deals with crisis or trauma therapy, because those skills may help you right now. Maybe there is a church group who drives people to these kinds of appointments near you? Maybe you can rent a car? You are pretty desperate (sorry) and I would consider moving to somewhere with better mental health resources at this point. Because your mental health is the most important thing to try and start to fix.

I think you need to start really small goals for yourself. Like I am going to work on X for ONE MINUTE. Because tiny goals can really help when you feel overwhelmed.

If it were me, I'd also try meditating daily. I love headspace and it really helps in a BUNCH of ways with you doing one little thing for 10 minutes a day. It is kind of like magic.
posted by Kalmya at 1:15 PM on August 22, 2016 [2 favorites]

I'm so sorry that this is happening.

What it seems to me you need is someone to be a Girl/Boy Friday, and help you handle making appointments, following up on health insurance stuff, picking up prescriptions, and cleaning. Not that you can't do the appointment/health insurance stuff, but that it would just be good if someone could be with you, and could take some of the load off. And, not for nothing, providers sometimes start just reacting badly to someone who has a LOT of issues (which SUCKS and is NOT OKAY but... is... true...) and having a new voice might help with a little bit of that.

I don't know how much money disability provides, or if disability might possibly provide coverage for someone who is something in between a home-care adult sitter and a personal assistant. I'm thinking something like Griswold Home Care or SitterCity might be a place to start.
posted by Made of Star Stuff at 1:23 PM on August 22, 2016 [5 favorites]

I agree to start small. I find long walks mentally and physically restorative. It's not clear if you have mobility issues but walking-as-therapy might be something low-risk to try out, sort of orthogonal to the other problems and potential solutions.
posted by SaltySalticid at 1:30 PM on August 22, 2016 [1 favorite]

Have you looked into Dialectical Behavioral Therapy? It's focused on developing coping strategies specific to managing emotions and life circumstances that otherwise feel unmanageable. This website has information about the therapy itself as well as a search engine to find providers near you.
posted by goggie at 1:36 PM on August 22, 2016 [4 favorites]

What insurance do you have? If you're not willing to give the name (which is fine!), could you at least specify if it's private insurance, or Medicare or Medicaid or both?
posted by lazuli at 1:44 PM on August 22, 2016 [1 favorite]

Your situation sounds overwhelming, and I'm very sorry that you have to go through all of this. I only have one small suggestion that might help:

I am also frequently hypothyroid because I stop taking my medication when it runs out. I don't like to go out in public and it's agonizing to pick up prescriptions. My most recent thyroid bloodwork was a few points shy of "should be in a coma." I've been taking my medication faithfully for about two weeks now.

Does your insurance offer a prescriptions-by-mail service? If so, this would be an easy way to get over this particular obstacle.
posted by Johnny Assay at 1:44 PM on August 22, 2016 [21 favorites]

On the medication front, some pharmacies will deliver prescriptions upon request. When I worked at a pharmacy, we had a driver who would make deliveries to homebound patients regularly. It was not a big deal at all.

I am so sorry you are dealing with all of this, and I hope that you find some answers that help you.
posted by beandip at 1:47 PM on August 22, 2016 [10 favorites]

Response by poster: Just answering a couple questions.

I am on Medicare. I have no prescription insurance. I did try to sign up for it, but I looked at the giant list of providers and the 3483434 types of coverage gaps and just closed my browser window.

I did try DBT and completed a full six month course, but I am apparently some type of borderline personality weirdo who has gone to the extreme end of analytical coldness as opposed to emotional dysregulation. I used to be emotionally dysregulated when I was a teenager and had tons of crazy relationships. Then I read a few books about BPD and how we are literally demons come to inhabit the earth, and I decided that it would be best to shut off emotionally and distance myself from others in order to avoid inflicting terror upon the minds and hearts of actual human beings. So a lot of the DBT stuff just doesn't apply to me because I'm a special snowflake who no longer has relationship/friendship problems because I've ended all of them.
posted by xyzzy at 2:12 PM on August 22, 2016 [3 favorites]

I don't know how well they work, but have you tried a text-oriented therapy program like Talkspace?

Are you taking any medication for the depression and bipolar? If not, why can't your PCP refer you to a psychiatrist for medication management only? Some antidepressants are now on big-box low-cost prescription lists, and they will ship to you.
posted by praemunire at 2:33 PM on August 22, 2016 [1 favorite]

2nd that you would benefit from some kind of advocate to help you make those calls again, so you can get second opinions, maybe have someone push for a referral to this outpatient clinic...

Re the paraesthesia - I've got this right now, and it's in the process of being investigated. No answers for me yet, waiting for my appointments, but there could also be a vascular cause. I've done a bit of reading around it; you had or have a rash? That seems to go with vasculitis, which I think a cardiologist or rheumatologist (probably more so a rheumatologist) could check out. (And treat.) Or it could be something else of course, but I think you need another (fresh) pair of eyes on you. Not sure how a referral happens in your system. Wishing you luck.
posted by cotton dress sock at 2:51 PM on August 22, 2016

On the prescriptions front, look for a mail order pharmacy service or a pharmacy that will deliver. Some of the mom and pop pharmacies will do this.
Psychiatrists at hospitals are usually inpatient specialists and indeed, don't do ongoing management. I would be surprised if there is literally no one who takes your insurance though, especially since you have Medicare. What was the reason why you couldn't you get a referral to the local outpatient clinic? It sounds like your PCP knows that you have significant psychiatric issues.

I think getting your psychiatric issues under better control and having you get your medication regularly might help a lot.

I'm sorry you're having such a tough time.
posted by The Elusive Architeuthis at 3:20 PM on August 22, 2016 [4 favorites]

Walgreens does free shipping to your home for any 30 or 90 day prescription. Set up an autoreminder 2 weeks out in google calendar then go to the website & click refill, 5-10 days later it turns up at your door, at least that's what I do. CVS may well do the same thing.

Keep on top of your meds, seriously it will help.

Also not having friendships & relationships isn't a solution to the problem it's just another problem, go get some help with your psychiatric issues. I know you think they're not a problem, but the trouble is you're making that decision under the influence of the problem.
posted by wwax at 3:32 PM on August 22, 2016 [5 favorites]

Response by poster:
Are you taking any medication for the depression and bipolar?
Antidepressants are contraindicated because they seem to cause rapid cycling for me. Lithium has no mood stabilizing effect and Lamotrigine stopped working after 18 months even after going to the maximum possible dose. My PCP offered to provide me a couple types of medications that have tardive dyskinesia as a side effect and I declined. It took forever to get over TD after taking anti-psychotics and I don't want to risk permanent tremors.
What was the reason why you couldn't you get a referral to the local outpatient clinic?
The local outpatient clinic only takes referrals from psychiatric emergency room. I have been there twice and never received a referral. The clinic seemed surprised by this but the woman I spoke to admitted that I would need to have another psychiatric emergency in order to be seen. Both times I went to psych emergency I was escorted by police officers, saw a resident for a 10 minute interview after waiting for 4 or 7 hours, and was released with no advice or treatment plan.
posted by xyzzy at 3:40 PM on August 22, 2016

Are you sleeping well? If not, a good few nights with a sleep med could make a real difference, both in your mood and your ability to cope.
posted by amtho at 3:52 PM on August 22, 2016 [1 favorite]

Have you called Medicare? When my coverage changed, I was on the phone with them for more than an hour to figure out which plan best covered my prescriptions.

That's what they're there for. Make one call at a time. It's a solution people overlook.

And they'll find an Rx plan that has delivery options.

Then take a breath and call them a couple weeks later to talk about the doctor situation.

You'll be amazed at how efficient they are. And patient and helpful. If you don't like who you speak with, hang up and call back. Though I have not yet spoken with anyone even vaguely disagreeable.

You should be calling them before calling the individual clinic and such. Medicare knows more.
posted by crankyrogalsky at 4:10 PM on August 22, 2016 [12 favorites]

This is sort of outrageous?? Is there an ombudsperson at the hospital? Can your GP investigate?

I just found this, which suggests that 1) hypothyroid could hugely contribute to rapid cycling (in which case, perhaps it may take time for your medications to catch up? Seems like continuity with that is really important) and 2) a peer support group could be a helpful resource; it seems they have online meetings as well as in-person ones. (I'm wondering if someone there - there is a contact for each group - may be able to help you shake things up or get someone to act on your behalf. Outrageous.)
posted by cotton dress sock at 4:11 PM on August 22, 2016 [4 favorites]

Mental health becomes number 1.

You need a therapist that will stick with you who has lots of training in complex trauma to untangle past from present sreactions from eachother.

A symptom of borderline (and trauma! ) is avoidance and running away. That means when things get tough with doctors, therapists or friends (I'm too much trouble so no friends) isolate and hide. Interaction brings up complicated emotions because histories are complicated. One of the ways to fix it is exposure to people who make you feel uncomfortable, or you have tension with. Hypersensitivity is hard to figure out and danger and not danger get all mixed up. A therapist can help you gauge these situations of this become blurry.
Try to stick to one set providers. They can track you better in trends of your health.

Ask for a medical case manager. You need one because all of this stuff is super super complicated and your brain is in a million directions, and someone to set up appointments or remind you about medicine and navigate the system a little better will help.

Remember someone taught you bad coping skills. This is not your fault. But you are in control and can make your own decisions and learn new things.

Take gentle care
posted by AlexiaSky at 4:56 PM on August 22, 2016 [2 favorites]

The situation at the emergency department seems baffling to me - when people come to my ED and ask for a referral to literally anywhere, I don't care what office or clinic, as long as they have a problem that's in the domain of that clinic, I provide it. Is there any other ED or urgent care you could stop into, just to get the referral? Normally I wouldn't endorse going to the ED just for a referral, but this situation is extreme. Also, I wonder if your PMD could call the clinic and advocate on your behalf as a 'referral' - surely that person as your physician is in an excellent position to testify to the fact that they are at the end of their ideas for treatment options and that you really, really need a psychiatrist and not a GP for this level of problem. I mean, I know these places have protocols and if you talk to a secretary or a nurse they tend to always fall back on protocol, but if your PMD could contact one of the doctors at this place, protocol is there for when it's useful but it is not sacred law.
posted by treehorn+bunny at 5:57 PM on August 22, 2016 [5 favorites]

I strongly concur with investigating the physical. I have a friend who was told she had bipolar, she does not, she has hashimotos disease. The difference in her since treatment is astounding, and yes this goes back to her teens years. Please find an advocate, perhaps your GP, perhaps someone at the hospital.

Btw, my peripheral neuropathy/ paralysis was caused by b12 deficiency and it got much better with treatment. It can improve, please keep advocating for yourself even by proxy.
posted by fshgrl at 6:55 PM on August 22, 2016 [3 favorites]

Nthing thyroid. You HAVE to keep taking your meds. Going on and off is a huge stress factor for your body, and the constantly changing hormone supply can look like a mood disorder. I was starting to suspect bipolar in me when I started taking thyroid replacement hormones and for the first time in years, I finally feel emotionally stable again. This is really, really important.
posted by LoonyLovegood at 5:35 AM on August 23, 2016 [3 favorites]

Is inpatient care an option? You have a lot going on. Going to an inpatient mental health facility for a few weeks to straighten out your medications for both physical and mental health issues would likely be very helpful. I know that it can be very difficult to find the right place and figure out insurance - but if it's an option, I think it would likely be a good choice for you.
posted by insectosaurus at 5:59 PM on August 23, 2016 [1 favorite]

Hey, xyzzy! Sorry to hear you're having trouble. I have appreciated your contributions to the election threads quite a bit.

So, you have severe debilitating chronic symptoms, multiple diagnoses and many barriers to treatment. You also seem to have a well-organized and insightful mind.

Do you agree with your diagnoses? That's an important question that will affect your attempts to tackle problems. If you're not having effective results from your treatments, that's also a reason to reconsider the diagnoses.

It sounds like the etiology of your neuropathy isn't known, but your primary physician can do a basic evaluation and find most of the reversible causes. I don't recall if others mentioned untreated hypothyroidism, but it's on the list. At the very least, taking your thyroid medication regularly can limit the future damage to your nerves.

For the symptoms of peripheral neuropathy, you mentioned being allergic to the common treatments. TCAs (amitriptyline, nortriptyline, etc.) and alpha2delta ligands (gabapentin and pregabalin) seem most consistently helpful, but other anticonvulsants (carbamazepine, oxcarbazepine, tiagabine) might also help. Also, I believe Europeans use alpha-lipoic acid and benfotiamine, which are OTC. Some people use topicals - capsaicin and sombra (menthol).

On the mental health side, it sounded to me like you were prioritizing the bipolar treatment. The anticonvulsants may help - they act a bit differently from lamotrigine, so don't discount them just because that didn't help. Gabapentin and pregabalin are probably less helpful. Amitriptyline and nortriptyline may cause mania at full doses, but when they're effective for pain, it's usually at doses far lower. Also, you might want to reconsider the antipsychotics. It sounds like you've taken them before and had tardive dyskinesia, but was there any positive effect? If you've tried and eliminated other treatments, you may end up deciding the benefit outweighs the problem. On the nonprescription side: fish oil, methylfolate, methylcobalamin. Trichotillomania: n-acetylcysteine.

On the personal side: exercise, mindfulness, social engagement, counseling.

You might be looking at this and thinking about closing your browser, like you did with medicare part D. Too many choices can be overwhelming! At least pick one thing and try it and then move to the next. Working on things in small steps can make large changes.

If you can partner up with a mental health worker or physician, they can help with implementing the plan and providing feedback from what they see in you, too.

Ok, that's enough for tonight.

Also, this is my first answer, and I'm happy to get feedback.
posted by Emmy Noether at 10:22 PM on August 25, 2016 [1 favorite]

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