Monday:
Today has been one of the worst pain days in weeks. Coincidentally, it was also the day of my doctor appointment with my useless GP wherein I planned to demand real care regarding the treatment of my hip pain.

I don’t like to talk a lot about my pain issues with others, or on my journal: it’s boring, it’s whiney and it’s more complicated than it needs to be. The thing about chronic pain is that it’s invisible; and people who live with chronic pain are the ones you probably wouldn’t suspect and generally the first reaction to learning someone lives with chronic pain is one of surprise and/or disbelief.
The thing about living with it for year after year after year is that you learn to conceal and adapt to it as best you can. I can’t spend all day whining and crying about it, and I can’t bitch and moan at every opportunity. Despite how bad it gets, I still have to get up in the morning and take care of my kids, I still have to get up and take a shower, brush my teeth and make a meal – so I do.
At the same time, it often hurts so bad to get out of bed in the morning that I often spend the first hour or so of my day sitting on the couch waiting for my pills to kick in before I can accomplish anything. It’s why I end up spending a lot of time on my laptop: there’s really no other way I can feel useful.
That uselessness feeling leads to depression, anxiety, guilt, control issues, and a host of other associated problems… it’s a reason why the suicide rates among chronic pain patients are alarming; and I’m no stranger to the idea.

I’ve been on and off numerous different medications from the time the pain began (age 14 or so) until now; although I went a long, long time without any pain medication at all other than Tylenol or Ibuprofen. After the events that I covered in the Teen Stay entry two weeks back, I did not take anything for years. I was also functioning under the false idea that maybe if I ignored it, my pain would magically go away.
Naturally, this didn’t work – and the intensity and frequency of debilitating pain “days” only got worse as the years went on.

In teenagehood I had physiotherapy for around five years, including off-shoots like ultrasound, massage, craniosacral work, chiropractic care and so on; but none had any real effect that I could tell.
I tried a number of different medications back in the day, from Vioxx to Oxycontin, but found little relief and didn’t like the way some made me feel, which made it easier to ease into the martyrdom of “if I ignore it, it’ll go away” of later years.

Over the years I’ve felt as though the pain was on a slow, downward curve of “worse”, although after having the two pregnancies back-to-back, that gradual bell curve turned into a rollercoaster-like drop. Some days were so bad I would be literally curled in a ball crying for hours until someone – be it a friend or family member – would take pity on me and beg me to take something they had on hand. Taking other people’s perscriptions is frowned upon, but any doctor who has experience with chronic pain patients (unfortunately, there aren’t that many) is aware of the frequency in which this is done. The thing is: when you’re desperate, you’ll do anything to stop the pain. So you do. I’ve been far too close to stories of people accidentally overdosing on heroin because of it’s pain-relieving qualities. They didn’t want to die, nor were they addicts: they just hurt so bad they were that desperate for relief…

And really, when you’re in that much pain and someone hands you something that might give you the slightest bit of relief, you take it.

Admitting that this was becoming serious enough to warrant daily medication was something I struggled with. Even though I knew this was just continuing to get worse, I didn’t want to think of myself as “one of those people” who would be pill-popping for the rest of my life, (and as a result shortening my lifespan and putting my organs at risk for serious damage).
The thing is, my quality of life is shit-getting-shittier – what’s a life if you can’t enjoy it? I discussed (and by discussed I actually mean ‘cried’ and ‘raged’) my fears and hesitancy extensively with Curtis, my parents, and trusted friends – all of whom were clear: stop living like this, you need help.

I’m angry that no real tests were done when the pain first began. It’s been suggested to me that because my pain’s origin was iatrogenic, and I was still a naive teen, tests were avoided and medication was just thrown at me instead.
My current GP is a moron. Having a conversation with him about anything is impossible. For instance, a recent exchange with him on taking valium on occasion to help me sleep through a recent increase in panic attacks since my breakdown, which was a ridiculous and frustrating experience.
I already had valium, and when he asked me how it was working for me I told him that I found it best to take a few at night when the panic was worse, so that I could calm down enough to sleep. He suggested that I use sleeping pills instead, and save the valium for panic attacks during the day. This seems like a perfectly good idea, I just hate the “more pills” aspect of it.
I have a long history with sleeping problems, and a long history with trying many different sleeping pills that either didn’t do a thing or made me hyperactive. Only one sleeping pill ever worked the way it was supposed to: Restoril. It made me mildly sleepy, which allowed me to relax enough to fall asleep within 1-2 hours of laying down.

The ability to sleep at night has only gotten worse lately with 1/ the pain and 2/ the anxiety with all this recent mental shit.
I told him about my experiences with sleeping pills and the only brand that worked for me. He seemed to not like that.
“There are better choices than Restoril, and it can be habit-forming,” he said.
“Nothing else worked for me,” I reminded him. “And whenever I was on it, I kept myself on a strict schedule of taking it once every 3-4 days to ensure I never became dependent on it. It was too important to me to avoid addiction given my past experiences with medications.”
He started into this strange talk about how he didn’t want to push medications on me that I didn’t want, and I reminded him that I thought it was a good idea to use sleeping pills for a sleeping problem instead of doubling up on valium – as having the two would actually result in using less of both during this time, until I start to get past This Time™ (it makes sense if you think about it).

He talked again about “better choices” than the Restoril, but when I asked him to clarify what these were he replied, “What would you like to take?”.
That has been his response for pretty much every single appointment I’ve ever had: “What do you want to do?” It is so useless a response from a doctor, the man I’ve come to see to give me medical advice, that I’ve often left wondering why the hell I even bothered to make an appointment at all if in the end I’m going to be the one managing my health care, and the care of my kids, whether or not I’m informed enough in whatever the issue at hand is.
I finally vented my frustration: “I don’t know, you’re the doctor: you tell me!”
“I don’t work that way Heather,” he said. “I work with my patients”. He gestured inward with his hands for emphasis. This made no sense to me at all. I was too frustrated to continue that line of conversation and steered the subject back to the sleeping pills vs. valium debate. I told him I’d like to try that.
“Well, I don’t want you to take them if you aren’t sure. How about you think about it and come back on Monday and let me know?
Then he got up and walked out of the room before allowing me to respond.

Which brings us to Monday, today, wherein I said I’d like to try my old sleeping pills (which he seemed fine with this time?) and then brought out my arsenal of research and notes, ready to push hard for proper care with my pain.
I’ve been to see a pain specialist already, who tried me on half a dozen different meds with little effect (however, they were all in classes NOT appropriate to treat nerve pain, with the exception of my unsuccessful trial of neurontin) before telling me flat out, “I can’t help you”. I know that’s bullshit, but I have no idea why he’d say that: he’s a pain specialist, isn’t it his fucking job to help relieve my pain? I haven’t seen him since June.
The medication I’m on now gives me mild to moderate relief of “background pain”: the daily muscle and joint problems that slow me down. However, I have nothing for “breakthrough pain” (brief, intense pain that frequently occurs with any change in activity. It’s considered outside that ‘normal range’) and it does nothing for my hip pain, which is nerve related, making it difficult to treat and entirely outside the realm of this medication’s use anyway.

I came in with a list of tests that could be ordered to help find any physical cause of the nerve pain, a list of recommendations for medications that would provide more effective relief, and a list of research and references to back it all up.
In the end I had two goals to discuss: find out if there’s a physical reason behind the intensifying nerve pain and damage so (hopefully) it can be fixed, and find proper pain relief while we’re waiting for that so that I can have some quality of life back.
My GP stayed quiet and introspective as I went over my lists before finally saying that the tests I wanted ordered were “overkill” and he was unwilling to prescribe any other medications to me until I had a diagnosis of damage (which can be difficult with nerve-related damage, and since he wasn’t willing to order the proper tests to even GET a diagnosis…?).
Oh, but the sleeping pills were fine and the medication I’m taking now that’s not working he can up the dose of. And would I like some more valium?

I was too proud to cry in front of him, but as son as I got out of the office and into the car I broke down sobbing. I feel so hopeless. I’m so sick of pain. I’m so sick of no relief. I want answers, I want to play with my kids without wincing, I don’t want to spend hours of every day laying down and planning everything in my life around how much recovery time I’ll need afterward.
I went to my favourite pharmacist to fill the prescription for an upped dose and she immediately saw something was wrong. When I told her what happened, she told me I needed to switch doctors. The problem with that is the doctor shortage in this city is bad, and you need an “in” to get to see anyone new.
Fortunately I have one: my mother’s doctor is familiar with and helpful to chronic pain patients and because I’m her family, he’ll have to see me and/or take me on if requested.

The only thing my GP ordered to have done was a bunch of x-rays. Which we all know are really good at diagnosing nerve entrapment.
I had a total of 7 or 8 done to my pelvic area: that’s a lot of radiation on those parts. The technician was really reluctant to do them. I just wanted it out of the way: at least if I have x-rays out of the way, no one in the future can use that as an excuse not to take me seriously.
The tech was very kind, and sympathetic. When she asked me why on earth I’d have so many x-rays ordered of that area I told her the issue, ending only half-jokingly that I was getting close to the point of “offing myself” rather than wanting to live with the pain. I laughed awkwardly.
“Well, don’t do that,” she said as she prepared the machines. She was gentle with me and asked me frequently if I was doing okay, or needed to change position. It’s nice to have someone respect that, for once.
Once all the x-rays were done her manner changed to be very serious. She said that once the results came back and my doctor discussed them with me, I had to demand an MRI and a “nuke-med test”. She said that the MRI appointment would be made for months and months later, as there’s a long waiting list for it, but I should immediately call and get on the cancellation list. She told me to fight with the doctor to get real treatment. She made it sound like she knew something I didn’t, especially when she added, “But you didn’t hear it from me”. I wrote everything she said down, and thanked her for the information.

When I got home, still in tears, my mother called her doctor (hereafter referred to as “Dr. M” and got me an intake appointment for the next day).

Tuesday:
I walked into Dr. M’s office limping; my hip has bad periods of several days to a week where it’s so intense I can barely walk. Laying down or sitting makes it worse, but walking and standing for too long (20+ minutes) triggers the other pain (joint and muscle spasm) so I’m kind of fucked either way.
I was incredibly nervous, so when I sat in the chair I talked toward my fidgeting hands. I told him everything, then went over all the same research and recommendations I’d brought to my GP the day before when he’d brushed me off. Then I held my breath…

Dr. M took notes, and had something to say immediately about every suggestion I had and every drug I’d researched. It said he was paying attention. He took me into the examination room and spent twenty minutes bending me in different directions, poking and prodding, taking notes and talking to me.
There was constant reassurance, “This may hurt a minute, but let me know which parts hurts the most and point it out. Alright, I’ll go very slow…” there is such a huge difference when you find someone who gives a care.
At the end he brought me over to his posters with maps of the human body and nervous system. He pointed to the sacrum, and the small holes along the bones.
“In here are the bases for several large nerve fibers. Two in particular, one that runs here–” he motioned over the top of the hip and down the back of the thigh, “– down toward the back, and one here.” he traced a line over the groin and down the front of the leg. “You have more than one nerve problem going on, and I think they’re all in this area. Entrapment, likely. I want to do an MRI. Have you ever had a bone scan done?”
“I don’t think so,” I answered. “If I did, it was prior to my treatment”. (The growth hormone treatment that began all my problems).
“Then let’s do one of those. I think that you’ve also developed bursitis in your hip from the years of inflammation. A shot of cortisone to the area could help relieve some of that problem. It’s not going to help the nerves much – but at least it’ll relieve some of the inflammation.” He mumbled to himself a little, weighing whether to refer me to the pain clinic or a neurologist to run tests. The pain clinic has a waiting list of almost two years. We decided on a neurologist.

He discussed different medications we could try in the meantime until we can move to something bigger. He offered me oxycontin, but I declined because I am more interested in methadone for pain management due to the overwhelming research in it’s favor over opiate use for chronic nerve pain. He agreed with me, but there’s only a few doctors in the city who are licensed to give it out. He’d have to call one of them first with the information.
Instead, he gave me a different class of muscle relaxant and a mild antidepressant that has the bizarre side effect of lowering chronic pain rates in some patients (who knew?). “Take them both at night, as they’ll give you a better quality of sleep. then take your regular one in the morning. Slowly increase the dose every few days until you find a range that works for you, if it can.” He let me know this was mostly temporary, until we hear back from the other doctor and it was just the first step in management as we get tests done and find out if there’s any major action that can be taken (surgery, et all) to stop or reduce the pain.

I was so happy, I cried.

It didn’t even matter that I was still limping out of the examination room: someone fucking listened to me, someone cared… My mother drove me home and I wept with joy the whole way.
On the first day of trying the night-time routine (sans sleeping pills, of course) I was able to fall asleep and not wake up 8 times due to excruciating pain and when I got up in the morning I wasn’t too stiff to move. It didn’t get rid of the pain, which is not what was expected, but made it not so bad during the night that I could actually sleep a little better. Which is what he was hoping for “in the meantime” (until doctor call backs in a few days regarding more effective drugs, tests done, etc).

What a difference it makes to have a doctor who gives a care.

Comments

comments

65 Comments

  • sualkin says:

    I’m so so happy you found a good dr!
    I’m still looking and hopefully I’ll find one like yours soon.
    If it is nerve entrapment, what are they going to do?

  • Oh thank goodness you have someone who will *listen* and *cares.* I’m thrilled for you. Good luck!

    • Oh, and I wanted to specifically wish you well with the bursitis. I’ve had it in my hips before, and it took years to finally alleviate the pain from it. What worked for me was high doses of ibuprofen and managing my range of movement — with constant vigilance. I was hesitant to use any cortisone (they offered both oral and injected) because my dad had a bad experience with it in the past. Surprisingly, it turned out that sex was a major aggravating factor for the bursitis in my hip, and I had to change the way I moved my hips! That was the main alleviating factor for the inflammation. I can imagine that the hypermobility would make it more difficult to manage…

      Take care.

      • admin says:

        I have to be very careful of how I move during sex otherwise my hip ‘pops out’ (the best way I can put it) and not only do I lose use of my leg, but it hurts BAD. Fortunately, I get a little bit of warning most of the time so I can move out of the position that bothers me. Because my joints are better or worse kind of randomly, some positions are fine 95% of the time and The Worst Position Ever™ 5% of the time… I don’t really have any list of movements or positions I should just not do. :-/ It makes it kind of frustrating to keep track of.
        At the same time, pain overall is better when my sex life is good. The endorphins pump through me so I generally don’t feel it during the actual act, it just slowly creeps back in afterward. If I go to sleep right away sometimes it’ll make a huge difference in how many times I wake up from pain at night, too.

        The worst example of my hip thing happening during sex was shortly after Jericho died. And it happened really suddenly just as I was um… “building up”, then literally seconds before it happens, my hip goes snap and I SCREAM.
        Curtis, having heard the build up, thinks I’m screaming for a different reason and so instead of stopping, he goes faster.
        Funny in hindsight, but not so much at the time.

  • Anonymous says:

    You don’t know me, however I do read occasionally and am often stricken by your accounts of pain.

    Have any of your doctors suggested the possibility of something similar to Guillain-Barre syndrome? That disease attacks your peripheral nervous system, often due to an infection or antibiotic, and leaves various sorts of nerve damage. However, this is life threatening and often will kill someone without treatment within a couple of weeks.

    It also sounds like Complex Regional Pain Syndrome — http://www.nlm.nih.gov/medlineplus/complexregionalpainsyndrome.html

    • admin says:

      I have not talked about Guillain-Barre, but the name is very familiar to me, I believe I’ve been tested for it a number of times…

      I looked up the complex regional pain, but it doesn’t quite fit the bill for what my hip problems are. My joint problems are diagnosed (BHJS), my back problems are from irregular growth but there’s not really a “diagnosis” for it other than knowing what caused it… my hip problems are the worst, and it’s only on my right hip, the left is completely unaffected. I’ve long thought it was entrapped nerves, which is also what this new doctor thinks, and hopefully with proper tests we’ll find something that can be done about it. πŸ™‚

      Thank you for noting though, it’s really good to know that there are some readers thinking enough about it to offer suggestions and want help me find relief. That sounds strange and vain to say, but what I mean is that it means a lot to me…

  • mspurrmeow says:

    I’m very happy to hear this. I know that you’ve mentioned your pain issues before, and I glean every post looking to see if you’ve found anything new. I’ve lived my life with similar issues, but obviously not the same. BJHS, nerve impingement, nerve damage, sacroiliac joint dysfunction and bursitis keeps me limping even on a good day. Right now, I still limp and whimper, but I’m feeling the best I have in decades so I’m downplaying it as much as possible.

    If you haven’t tried cortisone shots, I’m shocked that a pain doctor wouldn’t have suggested them. They really helped me… the first time. After that, the pain relief was drastically less, and the third shot was pretty much no response at all… but STILL, that could give you a few weeks of hope and joy!? Besides, your body is so different that it might REALLY work for you. I’m so severely immune to any opioid or pain drug that my body tends to just ignore them. The latest suggestion by my doctor was Lyrica, but the first few doses made me so stupid that I need to take a vacation of a few weeks to burn through the adjustment period to see if it will help.

    I loved it when I finally found a doctor that cared. He still hasn’t found the magic combination, but he cares. (He’s an import from Canada, surprisingly.) Sometimes just being able to say “Ouch” in front of someone who KNOWS I’m not faking it is a bit of relief in itself.

    PLEASE let us know (or me privately if you don’t want it in your journal) if you find some really great answers. You are not alone, and we love you even if you are crying in pain. In my house, that’s just accepted.

    • admin says:

      I plan to, from now on, write the updates to this. I just kept it out of my journal for a long time on purpose… I just hate the complaining aspect of it, it just sounds whiney to me. As someone living in pain too, I’m sure you know what I mean by that.

      This doctor suggested the shots, but it would only help the bursitis, not the nerve pain – so we were talking about other methods of treatment over that first.
      Lyrica was on my prescription list, but it’s not covered and very expensive, so I never got to officially try it. This new doctor said that if I didn’t find any affect from neurontin I was highly unlikely to find an effect from Lyrica (as they work similarly) so it was probably for the best not to have wasted money on it.

  • The thing about living with it for year after year after year is that you learn to conceal and adapt to it as best you can. I can’t spend all day whining and crying about it, and I can’t bitch and moan at every opportunity. Despite how bad it gets, I still have to get up in the morning and take care of my kids, I still have to get up and take a shower, brush my teeth and make a meal – so I do.

    No, actually, you don’t. You could go on disability, or force someone else to support you, sit at home and eat and get fat and exacerbate your pain by so doing, pass your kids off on someone else, stop getting out of bed in the morning, withdraw from the world, and become addicted to pain killers which slowly kill off your organs one by one. Thousands of people take this option. And you’re a better, happier person for not taking that route.

    I’m glad your fighting is finally doing something for you.

  • sylvanna says:

    I felt happy relief for you when the new doc brought up the MRI on his own. Thank goodness for a step forward.

  • jenrose1 says:

    I can understand that. One of the interesting side effects of treating my adrenal collapse with steroids is that I don’t have to take allergy meds 99% of the time. Yay cortisone.

  • flutttergirl says:

    that is amazing. i am so happy for you! i am crossing my fingers that you find the right treatment to get rid of the pain completely.

  • azdesertrose says:

    I’m glad you found a doctor who knows how to listen, and I hope he helps you find a solution for your pain.

    *hugs*

  • frogmorest says:

    I am SO FUCKING GLAD to hear this! NOW you`ll finally get some help!!!

  • I’m glad things are looking up for you WRT doctors πŸ™‚

    I have no idea what chronic pain is like, but I bookmarked a pdf book when I was recovering from my c-section (the longest lasting pain I’ve had to deal with) and I thought I’d pass on the link in case it is helpful to you at all:

    http://www.opioids.com/pain/pain-survival.pdf

  • I’m SO glad you found a better doctor. There is no way you should have to live with this kind of pain at your young age… I hope you get answers and relief, quickly πŸ™‚

  • letitshine says:

    Im so happy to read this! I am so excited for your happy ending in comparison to the way the entry began!

    You of all people I know remotely, deserve to be cared for – PROPERLY. πŸ™‚

    <3

  • That’s AWESOME that you found someone who will listen to you! Your old doctor sounds like a buttmunch.

    I’ve had a GP that is completely useless for years, but my mum and I recently found a really nice, really good lady doctor. It’s such a relief. πŸ™‚

  • comitto says:

    what is unbelievable is how hard good doctors are to find. i hope that one day we’ll have a more reliable online information system for it, like ratemds.com only more informative and widely used.

    i’m so glad you finally found someone!

  • julierocket says:

    <333333333333333333333333333

  • gardenmama says:

    It made me cry to hear you found a doctor who gave a damn cared enough to take you seriously. I hate the poo poo attitude of doctors dealing with invisible pain. My sister suffers from chronic pain due to a compressed disk in her back, and although she told her doctor that she cannot lay flat on her back or she goes into spasm and can’t get up, he had her lay on her back for an exam, left the room, and expected her to get up on her own! She was trapped flat on her back, in excruciating pain, for over 30 minutes before someone found her. She was too embarrassed to call out πŸ™

    In other news, I went to my doctor yesterday about my chronic headaches. She thinks I’m suffering from “common migraines,” which she said are what most migraine sufferers call “lesser headaches.” We came up with a plan for now, and another plan for once Nick is done nursing and I can try a different class of drugs. She listened to all my concerns (that I was taking my breakthrough pain meds too often and becoming habituated to them). She assured me it was still well within the range of normal and gave me the ok to take two at a time if I need them. Then we’ll switch to one of the triptans (Immitrex or the like) once I’m done breastfeeding.

    I’m so thankful you found a sympathetic doctor who gave a rats ass that the pain was so bad you couldn’t sleep and not just throw more pills at you because all he heard was “can’t sleep.” πŸ˜› I hope you never ever go back to your old doctor.

    • admin says:

      I’m pretty sure I was on imitrex while breastfeeding…
      My migraines have been pretty regular since the treatment as well. I went through a bunch of meds but never found one that REALLY worked and I was always terrified to take them because of the warning label as long as my arm with teeny tiny writing (I know you know what I’m talking about).

      The only thing ever “helps” is regular chiro care. It changed the frequency of my migraines from 3 a week to 1-2 a month. It made the biggest difference, so at least that way I’m only out of commission for 1-2 days instead of all the time.
      Then, as soon as I feel the SLIGHTEST pain in my temple I double my pain meds and go take a nap. About 50% of the time that’ll work, the rest of the time I have to suffer through. The deal is to catch it BEFORE it sets in…which is almost impossible if you’re used to pain, you know? You almost don’t notice.

      • gardenmama says:

        Yeah, she said something about taking meds as soon as I notice a headache coming on, but hello – I have headaches 15-20 days out of every month. And normally they are at the 2-4 pain level. But once in a while they are 6-8 by the end of the day. I can’t just take something for the little ones all the time or then the meds would never work when I have a bad one. And yes, when you’re used to the pain you just don’t necessarily notice. Then once in a while, very rarely, the pain goes away completely and I’m left with a feeling of euphoria from all the endorphins that are normally coursing through my body. And now I know why I don’t get that “runner’s high” from exercise that people talk about. I have a high tolerance to endorphins.

        I do regular chiro care, but can’t always get in (with kids, schedules, etc, and living as far out of town as we do) right away when I have a headache. My massage therapist gave me some peppermint oil, and I’ve had some success using that on myself if I can’t get in right away. And my chiro is trying some cranio-sacral therapy on me that seems to be providing some better relief. My problem is that I’m super easy to adjust, which means it’s super easy for me to go right back out of adjustment, sometimes within a few hours of being adjusted. And my chiro isn’t in our insurance network, so it’s $45 each time I see her. But I’d never switch to anyone else. I went to her when I was pregnant with Nick and my other chiro just couldn’t get my lower back/sacral pain. She doesn’t just keep doing the same adjustments over and over again like all the other chiros I’ve been to over the years. She keeps looking for the answers that will take my pain away. And she’s been pretty successful with the lower back pain, just not yet with the headaches. Usually I go in 1-2x a month.

        I haven’t tried Immitrex. I’m going back on amitriptyline 10 mg once a day as a preventative, and keep using codeine for bad headaches until he’s done nursing. I’m ok with waiting to try the other meds. He has a history of being sensitive to stuff I’m taking, and I’d rather not experiment when I’m doing ok now.

        • admin says:

          So long as you know that it IS safe to try these things while breastfeeding as they aren’t necessarily passed to him at all (whether or not it appears in your milk has many, many factors including molecular weight. And even if it’s in your milk, doesn’t mean it necessarily is absorbed by the baby’s stomach… etc).

          I’m hypermobile so I know what you mean about the ‘easy to adjust, easy to screw up’ thing. I get a lot of neck work done, and I find that’s what helps the most. I have muscle spasms and nerve damage in my upper back and it causes this CRAZY tension in my shoulders and neck which contributes to the migraines. Work to loosen that up helps a lot with their frequency, along with little things like using squishy feather pillows to sleep on and an orthopedic mattress (and I realize we were EXTREMELY LUCKY to be gifted that mattress as a wedding present).

          It’s funny, craniosacral work actually CAUSED migraines for me. When I tried to tell the therapist this, she didn’t believe me and implied it was my fault. I got hostile with her, and ended up walking out in the middle of a session and never going back.

          That sucks hard about it being so expensive. πŸ™ That’s why I don’t do any massage stuff anymore.

          • gardenmama says:

            I am so thankful that my husband has a decent job and he’s totally ok with me getting the therapy I need that actually helps me, even though it’s not cheap. I have a deep tissue massage once a month, and go to the chiropractor as needed, and he’s totally ok with whom I’ve chosen to see even though an in network doctor would be covered by insurance (out of network we have a much higher deductible before anything is covered). In fact, he recently suggested that I start going for a whole hour massage rather than a half hour that I was doing. People look at him and see this asshole exterior that he projects, and yes, we do fight about money. But not about the things that really matter.

            And the craniosacral stuff, first time I actually had complete relief from a headache within a few hours. Usually I’m more sore after an adjustment and it takes a few days for it to gradually get better. I think that’s because the underlying muscular tension is still there. If I can, I’ll get a massage first and then an adjustment and that seems to have the most effect.

  • I am so glad you have found someone who LISTENS. I hope something is able to come of this.

  • hibernate says:

    *hugs you* I’m so glad you finally found a doctor who listens to you and knows what he’s doing! <3

  • Oh Heather, I am teary eyed by the end of this!

    I am going to my first doctor’s appointment today since moving back to Canada for an injury I incurred a year and a half ago.

    Anyways, I am so grateful for you sharing this and I know how difficult asking for help can be, especially when people aren’t listening.

    In April there is a yoga conference coming to town and you have inspired me to sign up for the class about teaching people with chronic pain. As I work with people who are in wheelchairs once a week. Thanks.

  • Thank goodness someone finally listened. I really, really hope this works out for you. You’ve been in my thoughts lately.

  • travellight says:

    It does make a difference to have a doctor who listens and cares. I’m glad you found one.

  • imbroglio says:

    Oh wow, that’s great!!! I’m so glad you found someone to listen and genuinely care!! I hope the medications for now work, and that in the long run you’ll be able to find relief too.

    Your first paragraph resounded so strongly with me. I’ve dealt with chronic pain for probably the last 10 years but where’s the point in whining about it and going on about it to everyone? Stuff still needs to be done, and I hate being whiney. It just ends up making me feel bad. So I suck it up and go about my business.

  • allenjaphy says:

    I have chronic cluster headaches and spinal stenosis in my lumbar. Two different birth defects cause this and I’ve been on the galaxy of meds to attempt to treat it.

    But I’ve gotten very good at fronting, functioning, attempting to be a good mom.

    A good doctor is a miracle, a bad doctor is the worst, and those that just give up on you make you want to give up on yourself.

    To young to be old eh?

    • admin says:

      Yeah.

      When I took public transit all the time, sometimes the pain was so bad that getting to a free seat at the back of the bus looked way too long a walk. So I always sat in the disabled seating.
      More than once an old woman who had NOTHING wrong with her other than being old would get on the bus and people would ask me to move for her, and I always did, even if it hurts so bad because pain is invisible and there’s just no way a young woman has any pain, right?… It’s so frustrating.

  • jesamin says:

    That last line? AMEN. I’m glad you’ve finally found someone who is going to listen.

  • odinyotoo says:

    i read the whole thing. i am relieved you are finding someone who is trying to help. thank goodness.

  • jenrose1 says:

    On my friend list is Synecdochic.

    She has chronic pain issues and uses some approaches I’ve never heard of before to get through the day. Plz look her up, she’s good, brilliant people.

    • admin says:

      http://synecdochic.livejournal.com/ ? I looked through a few pages and couldn’t find anything on pain.
      Whenever someone suggests someone else who does things for pain, my kneejerk reaction is to feel like they’re not getting it. If I risk talking about pain publicly, there’s always a dozen people who say I merely need to take more vitamins, or do yoga or something, and clearly that would be my miracle. It’s so frustrating I feel like crying.

      • jenrose1 says:

        http://synecdochic.livejournal.com/301970.html

        She’s good people, an amazing writer. And I think she would get it. I’m not minimizing. I’m not talking about her “curing pain.”

        I’m talking about her living with it every day.

        • admin says:

          That’s good to know.
          BHJS (benign, hypermobility joint syndrome) is one of the three major players in my pain, it’s what my joint stuff is all about, but it plays a lesser role in my pain. Tramadol, the drug she’s talking about, is also what I’m on right now that handles that pain alright but does nothing for breakthrough and certainly nothing for the nerve problems (I’m on the highest dose possible right now). The prone to injury stuff and popping out of joint is super-duper fun.

          Everything else I’ve done/do, including having my thyroid and vitamin levels checked… but I did not know that it was THIS that contributes to the anesthetic resistance. I just that was my strange body.

          Three times they’ve tried to put me under using gas and had it not work, sleeping pills don’t work, dental anesthetics don’t work (or I’m allergic to them) and that date rape drug tranquilizer thing (IE. “mickey finn”, I believe) was given to me twice prior to a brainwave test to knock me out and THAT didn’t work! The tech person there said she’d never seen anyone be immune to it, but the first time I had the test (at 9) I was not only immune, but it made me hyperactive.

          Anyway, that was an interesting read.

          • jenrose1 says:

            I was interested in the lidocaine patches she talked about. Don’t know if something like that would help some or not.

            • admin says:

              They have a great success rate, over 90% when I was researching them. However, my nerve pain is located too deep into the hip so unfortunately they wouldn’t reach it (I discussed it at length with the new doctor).
              But, they might help the hip bursitis, since that inflammation is on the “outside” – then again, so would a cortisone shot, and the shot is a little easier and can be delivered right to the tissue that’s inflamed. πŸ™‚ So I think I’d rather plan on getting the shot instead.

  • Anonymous says:

    Out of curiosity, is the mild antidepressant trazodone? I’ve been on that for sleep issues for about 2 yrs and it really helps without leaving me feeling like a zombie.
    Glad to hear the new doc is so much better. I’ve got my own health mess and I’d give anything to have a dr actually want to help me and help find answers.
    Best of luck!
    Jess B

  • eiretamicha says:

    Thank goodness! I’m so happy you found a doctor who cares! πŸ™‚

    Did you get the cortisone shot? If you are planning on getting it in the future, and have never had one before, I just want you to be aware that it is very painful. I broke my toe when I was 16 and got a cortisone shot in the top of my foot. Never again. I know for someone like you who has been experiencing this kind of severe pain for years a simple shot may not sound bad, but it really is agony…it feels like they inject you with fire. So…just be prepared and use some deep breathing to get you through it.

    Of course, if you already got it done and it wasn’t that bad, then just ignore me, lol. :p

    And again, so happy for you!! ♥

    • admin says:

      Honestly that thought doesn’t sound too bad to me. πŸ™‚ If it meant some relief, I’d be jumping at it. And the pain can’t be that much worse than my worst pain days.
      My mom has had the shots into her knees quite a few times and she says it’s heaven.

  • Wow. I didn’t even know there were so many different options to manage chronic pain! I have chronic back/sacrum/hip pain and the last time I asked a doctor about it (before I had children) I was told it was because I was fat, loose some weight. I’ve been afraid to say anything since then.

    I’m glad you found somebody that will listen to you. I hope the two of you can get some answers that lead to positive changes.

  • healthnut22 says:

    Congratulations!! A good doctor is one of the most amazing things in the world. It makes you feel SO GOOD.

    πŸ™‚

    (I read, and don’t often comment, but I had to jump in and say it, because this was just…too good a story. πŸ™‚ )

  • jespere says:

    This post made me very happy for you.

  • winterbourne says:

    *hugs*

    I’m so glad you found a good doctor!

    I talked to my aunt, but she’s not taking appointments until March. (Her mum just died so she’s taking some time.) She also suggested a physio. My mom works with a guy (she also has hip issues, but different) and I think he does sacral stuff. She likes him a lot, any rate.

    • admin says:

      BTDT, and can’t go back unless it’s covered. I took about 5 years of physio and only stopped when I was around 4-5 months pregnant with Tempest. No real effect that I could tell.
      This also included ultrasound therapy, which felt very strange.

      • winterbourne says:

        I think the physio is covered.

        Ultrasound, eh? What’s that like?

        • admin says:

          Covered or “covered”? Like, with chiro and stuff I get 10 appointments a year “covered” (partially paid for). That’s 10 appointments IN TOTAL for any visits of a chiro, massage therapist, naturopath etc etc etc. Anything considered “not a regular doctor”.

          Ultrasound: they’d turn it on and use a wand over my hip, it vibrated the tissues or something. It’s supposed to help a lot with inflammation. They said 95% of the time people don’t feel anything, but some individuals do: I could feel it. It felt… weird. I didn’t like it. Afterward I always felt jumpy and strange. It kind of helped at the time, but it was useless for long term…

  • bluealoe says:

    I am so glad you finally saw someone who listened to you. With him on your side, you might just get to the bottom of this.

    I know what you mean about having to live with the pain and get on with life. My problems are not nearly as severe as yours, and I’m not trying to compare myself to you, but I do have consistent stomach pain, mixed with other lovely digestive issues. Yeah, it sucks, but if I stayed home and whined every time I have stomach problems, I’d never get ANYTHING done. My life would come to a grinding halt. So instead I eat lots of yogurt, load up on Pepto, and do what I have to do.

    before finally saying that the tests I wanted ordered were “overkill” and he was unwilling to prescribe any other medications to me until I had a diagnosis of damage

    So he won’t prescribe anything until you get a diagnosis, but he won’t order the tests to get a diagnosis? Serious logic breakdown here.

    The thing about working “with” patients…I kinda of get what he’s aiming for, but he totally missed the boat. Listening to patients and taking their opinions and wishes into account is critical. But he’s gone way beyond that into WTF territory. He’s a doctor, he’s supposed to knowledgeable and have access to information to help you make decisions. I mean, you research the hell of these things and are one of the most informed patients out there; if YOU’RE having trouble making sense of it all, imagine how other patients are being treated. Not telling you ANYTHING is not only shitty, it’s the mark of a lazy doctor and quite unethical.

    Vaguely related, I was watching an episode of House today and he was saying gabapentin (sp?) is meant for nerve pain. I’m sure you’ve tried it already, but I figured I’d throw it out there. (Yes, everything I know about medicine comes from House. And Grey’s Anatomy.)

    I will never underestimate the impact of chronic pain after watching my dad struggle with it the last ten years of his life. Until he got the hip replacement, the pain was eating him alive. I’d lie awake at night listening to him gasp in pain and wake up every twenty minutes to shift position, desperate to get some sleep, any sleep. I’d watch him when he got up in the morning, exhausted from lack of sleep and so sore he could barely move. I’d lace his shoes up for him when he couldn’t bend over. I was there while he tried pills by the dozen, massage, chiropractors, inversion racks…he was wiling to try anything. I cried for weeks when desperate for some relief, he dug in the back of his medicine cabinet, took a painkiller he was allergic to, and nearly died. The pain just wore him down so much he barely resembled my father anymore.
    When he finally got his hip replacements, the difference was amazing. He was laughing, smiling, joking, showing off how well he could walk; hell, he could even run. He was the dad I remembered from my childhood. (And he only got to enjoy his newfound freedom for 18 months before the heart attack…but at least he had that time.)

    *looks at reply* Geez, I didn’t mean to write a manifesto. Sorry about that, the words just started pouring out of me. I don’t even know if this will make any sense, but I’m going to bed now.

    *hugs tight* Love you.

    • admin says:

      Love you, too. All that about your dad makes me really upset. πŸ™

      Gabapentin = neurontin, which I mentioned trying in this entry. I got up to 2400/mg a day with no effect. πŸ™ It made my breathing heavier, but didn’t do anything for the pain. It’s a miracle drug for those it works for (like my mom), it’s also best paired with an opiate (standard treatment) for nerve pain… which I didn’t have.

  • Its always been such a relief to find some one that listens and believes you, instead of instantly thinking drug seeker. The relief at knowing some one cares enough to actually work with you and work towards finding a cause and treatment instead of just trying to appease you…

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