I posted on the intro but more here...
I've been off work since the end of Oct. Honestly I shouldn't have been working when I was, but worker's comp docs are stupid and don't really care how much pain you are in and what you do for a living (I was the site director of a child care, trying to work on crutches). Yeah right.

Since the CRPS hit its only gotten worse. I can't rest my foot on anything so I sit in a recliner with a pillow under my knees so my foot can hang off of it. Cause even having my heel on it is too painful. But its creeping up my leg. Which is why my doc did the sympathetic nerve block. Which worked! Except that it wore off in 3 weeks.

Due to this being worker's comp I've been having to go to a stupid clinic. My Physiatrist is a great doc, but he knows the clinic's scope is far too limited to meet my needs and has requested referral to Stanford. We got shot down once, but are trying again. And now (because he told me I need to) I'm getting a lawyer involved.

Meanwhile I am dealing with the realities of trying to manage the home on one leg... Husband is 100% disabled with Secondary Progressive MS (totally bedbound) and both kids have special needs, IEP's and behavior issues. My plate is full and then some. So... I've learned that stress will increase my pain.

Sleep--- that is hard. How to sleep when I can't put my foot on the bed? Percocet barely takes the edge off anymore. I mean it may help me set my foot on the bed, but still not be able to sleep. And then if I CAN sleep... the stupid reflux will kick in and wake me up!

Meanwhile even though I'm off work, I'm trying to do a little office stuff from home to pay for my kids health insurance. And I'm learning that even THAT wears me out.

The injury was June 2015 and the CRPS diagnosis was Oct 2015. So I'm not even a year in. This is overwhelming me!

Becca,

Please research Low Dose Naltrexone for both you and husband. Please do it today.

Google Joseph Wouk and LDN. Watch his YouTube Videos.

Also Google Dudley and LDN. Dudley is a nurse who has posted extensive LDN information.

Pradeep Chopra, a CRPS specialist, recommends LDN for CRPS in his YouTube videos.

Hi Becca and Welcome to Neurotalk,

You certainly do have a full plate and I'm sorry to see you dealing with so much AND Crps. That has got to be exhausting and worrisome for you.

Does your husband have any kind of in-home care and if not would he qualify financially with you on worker's comp? Department of Human Services disability program in Cali may be able to help.

Are you getting any emotional support? Therapy to help deal with the loss, changes, and feelings of anxiety and sadness that go with this kind of life change can be a huge help. There are even therapists that can help with coping skills for pain. I went to a therapist who specialized in pain and traumatic life change and did EMDR and hypnosis. I can honestly say that she changed my life for the better and helped me get of a deep, dark place after my diagnosis.

I find that you responded with three weeks relief from the sympathetic block to be pretty encouraging actually. Some people get these in a series. Keep pushing for Stanford pain or see if someone will follow their guidelines. They do sympathetic blocks with Botox added and people in that study got several months of relief instead of weeks. Some of the problem with CRPS is based in neural plasticity so the longer relief you can get the better chance you have of staving off or reversing brain changes from pain.

Stanford is currently doing a study on LDN btw, perhaps you could get in that way if they are still recruiting....

Hang in there and keep trying new things. It often takes trial and error to get relief. Baby yourself and your foot as you need. I slept in my La-z-boy for quite some time and then on my side in bed with my leg propped on a body pillow so my foot could hang off. Now I can sleep however I want. Do what rehab you can without flaring and don't give up hope.

Sending hugs and healing love,

My husband was on LDN for years, so I actually find it fascinating that it is used for CRPS. But to use it I'd have to be off the Percocet for pain control. Even though it doesn't stop the pain at least it brings it down a couple notches.

The nerve block. OMG. That procedure was awful. Getting it done I mean. And the recovery. WOW. I mean it was good that it "worked" and the doctor could get results, but holy ouch.

We get funding from the state in the form of IHSS (In Home Support Services) for my husband's care. So that person is having to help with me too, cooking, cleaning, doing the chores I used to do etc. I can't drive due to it being my right foot, plus the gabapentin/percocet make me foggy. Thing is, to go somewhere for more than a brief time someone has to be here with the husband and someone has to drive me. So I need two someones.

I'm not getting any therapy/emotional support. Another reason why I need to be seen at Stanford, because they offer that as well. Basically I need a comprehensive clinic with multi-disciplinary care (neuro, pain control, psych, PT, OT, etc.) that has experience w/CRPS.

I use crutches a lot of the time just so I'm only partial weight bearing (seeing as my weight is so much more than it should be). But during the day I also try to walk a bit on it w/o the crutches. I don't want to lose any more muscle mass than I already have. Plus I know I'll lose bone.

I'm trying probiotics to help w/the gabapentin induced bowel problems (ugh). I've been taking a generic prilosec, but maybe I need a different antiheartburn med?

There's only so much of me to go around w/IEP's and the kids therapy programs and such. Thankfully we do have two loving pups that we got as emotional support animals for my son.... and well they are ending up as emotional support for me too! We got Pepper beginning of May. Six weeks later I got hurt. He's an angel of a dog. Complete love bug. So, he's my therapy.

Becca,

Last March I was in a wheelchair and using crutches for short distances. The pain was so off the charts, I believed I would never walk again. My CRPS is in my right foot and leg, so I understand what you are experiencing.

I also understand why you are fearful of stopping Percocet. I did not have anything to give up to get started on LDN, my pain control was magnesium and malic acid, a combo I read about on a fibro website. Not that it helped much, which is why I was driven to try LDN. To me it is miraculous. I am walking, a bit like an extra in "the Walking Dead," but I also I lost the foot drop, the dystonia, the clawed toes and other issues.

I gave up neurotin, because of weight gain and brain fog.

In a few weeks I am going back to PT-specifically Aqua therapy, which with the LDN got me back on my feet. My goal now is to walk more normally, hop, skip, jump and squat.

I'm curious about medical marijuana for the nerve symptoms as well. I'm in CA so its legal here, and if that would get me off the gabapentin that would be awesome. But you are saying the LDN is actually acting as your pain control? wow. LDN is hard to get, has to be compounded specially, but I know it can be done, as hubby was getting it through Kaiser. Course I'm on stupid stinking worker's comp which complicates EVERYTHING.

I need a shower. Which will use up a lot of my "spoons" (for those know the spoon theory) And I have a sick kiddo home with me. Other kiddo will have ABA session at home today, which will use more of my spoons. Whee. To shower or not to shower.

Becca,

Showers are still hard on me, I have to keep them short, because my tub's floor is very slanted, which throws me off balance. I can lose it, too, if I step on a tiny crumb with my right foot. It is going to take re-hab to re-wire my brain, according to the PM doc.

I was given a shower chair with a back from my local senior center. It enabled my h to help me get in and out of the tub when things were bad. I waited too long to get one. Big mistake. I also keep a space heater in the bathroom, because I learned that the pain was more severe if I got chilled.

I keep boxes of baby wipes in every room, because I went through weeks when I could not shower. It was too painful. I also resorted to dry shampoo, because I did not have the balance or the energy to stand to lather and rinse my hair. I also keep facial cleansing cloths, finger toothbrushes, extra hairbrushes and mirrors tucked around the house, just in case. Lol, I used to be a minimalist, now I am a CRPS realist.

My injury is work related, too. I asked WC to pay for me to see Pradeep Chopra in RI, but was refused. I wasted hours trying to find a local doctor to prescribe
LDN. I asked every doctor I saw to prescribe it as well, even with supporting information they all turned me down. My h decided that we should just order it from abroad. For me it was the right decision. And yes, LDN lowered my pain very rapidly.

The PM doctor who saw me at the end of July (I started LDN sometime in June) was amazed at the change when he saw me last week walking with a cane. It is unfortunate that he is not interested in my LDN story, but he congratulated me on "owning your disease" whatever that means and he listed what I said helped me, eg, infared jade mat, liquid lanolin, Aqua Therapy, etc

Hi Becca

You said "I can't drive due to it being my right foot". I assume you have an automatic rather than a manual (stick shift) car. If you do then there's no reason you couldn't have hand controls fitted to your car - they allow you to drive without needing to use either of your feet to operate the pedals. You'd only need a set of basic push-pull hand controls because you don't have complex disabilities so they are cheap and easy to have installed. They don't affect the ability of other drivers to use the pedals as normal. You might at least have one less thing making your lives so difficult.

I have CRPS but I am unable to walk and have to use a wheelchair - not because of the pain but because of the severe dystonia and other movement disorders I have which make walking impossible for me. I've been using hand controls to drive for seven and a half years now and they really are easy to use. It would be worth at least looking into it because it really could make a massive difference to your life and that of your husband. If you improve so that you can drive normally again then you just take them out.

Always thought those were a lot more expensive than they are. Thank you Neurochic. I never would have looked into them if you didn't mention them here.

Yes to the hand controls, know all about them... nervous to try (I'll admit). But if I can get the brain fog and exhaustion from the gabapentin down then I might be more comfortable giving it a shot. When my husband used hand controls he got training on them first...