Posted 2/20/2017 7:43 AM (GMT -7)
First post here, sorry it may be a bit long.
June 3, 2015 was when my life changed dramatically, and not for the better. It started out simple, after exercising in the morning, and doing various things I noted my right foot, specifically the ball of it, was tender. Now, I'm a huge clutz, and can trip over nothing, so thinking nothing of it I decided to ice it, rest it, and just take it easy. No biggie right? I wish I could go back in time and smack myself for that thought.
Obviously, it was a biggie. What once was a tender ball of foot, turned into a numb, angry hateful entire of foot and ankle. The pain was white hot electric, super sensitive to any, and everything. Not able to bear weight we went through the usual channels, getting X-rays, and a bone scan because the doctors thought I had a hair line fracture.
Its now February of 2017, and you can guess who's become my new 'best friend', yep. Pain. I've been through many tests and many, many months of hitting my head on the wall. Here's the sample:
Effexor for depression (pre-pain depression that's obviously not gotten better)
Trazodone for insomnia (chronic, pre-pain, that's not getting better either thank's pain).
Adderall for ADHD
Cymbalta (THAT'S FOR PAIN! DING DING)
Amadolpine (that's for pain too I'll explain) - My feet are ice cold, the doctor gave it to me to dialate viens in hopes that some circulation gets down there, because cold makes the pain worse. Did I mention I live in friggin Canada? Yeah. Cold. Lots of Cold. Ugh. Why?
Vitamin B, D, C, Magnesium, Cranberry, multiviatmin...I'm missing one I think...gah!
I have been on various pills, nortryptilne (sp?), lyrica, gabapentin, amatryptyline (sp?), tramadol, tramacet, percocet, tylenol extra strength-t4's, morphine, and the list just goes on.
I've used various topical creams, starting with the usual tiger balm, going to capcasician (sp), and then lydocaine. They just make the pain worse.
The pain, my dear friend the pain, its in both my feet, ankles, and now my left wrist.
I've seen countless ER doctors, a poditrist, a pain clinic doctor, a few walk in doctors (when I really needed to ), my PCP, pysio-therapists.
Nothing works. I'm waiting to see a neurologist to do a nerve conduction study, as somewhere my nerves are sending a message to my feet (or my feet to my brain) that there is pain. All tests have come back negative, no matter how much blood they take, how many times I pee in a cup, CT's, Xray's, Bonescans, poking, prodding, jumping up and down, etc.
I'm exhausted. So very exhausted. The pain makes my brain foggy, and so does meds. The pain clinic doctor was about as helpful as wet toilet paper. He gave me nabilone (which did help for a bit), told me it wasn't Complex Regional Pain syndrome, and that he was releasing me back to my PCP, because he didn't know what it was and couldn't help me. Uhm...Okay? What do you mean? You're a pain clinic, I'm in pain. Uhm.. Help?
We are moving soon, as my wife is military and when they say move you move. I'm a 27 year old woman, who previously was physically healthy, even though my brains are a bit scattered. The pain is so intense, I'm so helpless. Because I live in Canada, I have to get my PCP to refer me to specialists, and then wait to see them. Fine okay, but, my PCP has attended many clinics on chronic pain about how narcotics don't help chronic pain. So he's very reluctant to prescibe them. Obviously we've tried many other drugs, as I didn't really want to be on narcotics, because of the risks, and for a while I believed I'd just wake up and get better one day. Finally he admitted, that at this rate, it was highly unlikely for me to spontanously get better, and when they finally figure out what's wrong, that I was probably going to be living in some sort of pain for a very long time. That's okay, I'm okay with that. Except my pain isn't managed at all.
I can't do physio because of this, they are very reluctant because I have no real pain management system (I deep breath, I take a hot bath, I make silly noises and my wife playfully mocks me to make me laugh, I go to the ER when things are so bad that my brains are screaming and about to explode.)
I have no quality of life. There are times where the pain 'remits' and goes away, but it lurks around the corner and those times are becoming very short lived. I haven't a clue what's wrong. I research various things, offer suggestions to my doctor, he talks to me about them, orders tests, and I 'fail' (or pass?) the tests, and we're back to the whole "I don't know" thing. We call my pain 'chronic neuropathic pain" but that's only because he needs to describe it in notes, and its not a firm diagnosis, its an observation of my symptoms.
I'm hopeless. I don't know what to do, how to get pain management. At this point I'd take anything, anything just to get the pain under control, not gone that's unrealistic, just controlled enough to be able to -enjoy- life again. I certainly have bad and good days, and of course relish the good days. I do a lot of positive thinking, and reassuring myself. My wife is supportive, but it's been hard for her to realise the severity, and until my doctor spelled it out to her that there was potentially no cure, and a good possibility of this being my life, she was insistent I'd get better, so I never got to grieve properly for my former, more active, fun loving life. We're both still getting used to this, and she's a terrible house keeper, but she goes to all my appointments, asks questions, tries to help when I forget symptoms (so much forgetfulness ugh), and tries really hard. Its hard on both of us. I just don't know what to do.
I have no diagnosis, I have no management of pain, doctors are freakin' useless at times, and I'm at the end of my rope, my pain is so severe I'd not wish this on my most hated enemy. I just want -some- relief, to be able to even go to the bathroom without sobbing because of the pain (in my feet, not using the facility). I went from being able to walk with aide, such as a crutch, or cane, to a wheel chair in four months. I still can walk, and do so at home, but its so painful, walking any real length of distance is a no go, my legs get weak from the fact my feet can't bare any weight and I go down like a sack of bricks. I use a manual chair, because I refuse to go to a powered one, I have two arms, and I'll use them.
I have a doctor's appointment coming up, and honestly I'm hopeless. I want to ask for something stronger than just the 'entry' level pain killers. But, I'm scared to hear another no, that narcotics aren't the answer. Well nothing else is the answer either! What am I to do?!