Pain

 

 

 

 

 

 

 

 

 

 

It’s been over three months now…and still no remission.  Nor diagnosis.  I’m functioning and able to get the kids to school.  But I’m certainly not at my baseline and my symptoms keep ping-ponging all around my body.

I can honestly say, I’m in a shitload of pain.  I’m not a wuss either but this is chronic, unrelenting pain now.  My joints and about 6″ above and below them feel like they are burning.  Deep within my muscle there is a searing pain combined with joints that pop, click and from time to time, blow up looking red.  I take photos each time that happens and when I showed the Chief of Rheumatology, he said, “I don’t know what that is.  We’ll ignore it for now.”

Unfortuntely, I don’t get the option of ignoring it.

I saw the MS doctor and she said I don’t have MS.  I’m pretty certain this is an auto-immune disease so it’s pretty much on me to manage my case.  Which means, I’m changing hospitals.  There’s really only three great hospitals in Los Angeles, so I’m hoping this switch will finally land me in the offices of doctors who want to really listen and dig at my case.

As a runner and athlete my whole life, I never thought I would say this.  But…medical marijuana is starting to look very appealing at 2 AM and your arms and legs are on fire.  I’m not into smoking pot whatsoever but this pain is breaking me.

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12 thoughts on “Pain

  1. I’m so sorry you’re going through this. I, myself, have gone down the ‘invisible-yet-devastating’ unexplained illness, and doctors are frustrating as he’ll! I wish there was a real life DR House who would take the time to get to the bottom of things like this so people would find some relief. It’s been 14 years of this for me, and all I’ve found so far are meds to cover the symptoms: adderall so I don’t fall asleep while driving, and pain meds so I can still work. I’ve been diagnosed with Fibromyalgia (wrong/wastebasket diagnosis), dysautonomia (wrong/POTS), and now the diagnosis dejur is Lymes disease, chronic mono, and a blood infection. However, anti-virals make my epstein barr number skyrocket. So, idk. It’s day by day. I’m glad you’ve found support in your husband again. There’s a blog called Fibromy-awesome written by a fellow chronic pain sufferer – she’s a great writer who adds humor to an otherwise devastating situation. Check it out! Hoping you’re able to find relief soon… but until you do, know you’re not alone. We’re out there, and we’re all supporting you from afar

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    1. I saw the Head of Cardiology for a full work-up, stress test etc. to exclude dysautonomia and POTS. I’ve long suffered from positional orthostatic lightheadedness which is worse now, plus I have dizziness too. But they were able to exclude both of those. I am so sorry you are dealing with POTS. When my heart was racing for no reason, that was pretty scary. I can’t even fathom enduring that chronically. Of all my symptoms, that one was the most disconcerting.

      Thank you for the blog recommendation. I’ve met a few interesting people along this journey- other patients or people I regularly run into now. One of them has fibromyalgia, Lupus and another AI disease. It’s apparent AI diseases travel in packs 😦

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    1. My journey to a diagnosis is very common. On average, it takes over six years to confirm the disease I suspect I have. I’ve only had 3 tests & a heart rate monitor come back abnormal so far. 1) my uric acid is low- in and of itself, this doesn’t point to much 2) my C3 is low- which is part of the alternate cascade path of your immune system- which indicates my immune system has been fighting something for quite some time and 3) cryo in my blood- which 90% of the time is caused from a long term Hep B or C infection- of which I don’t have and tested negative for. The other 10% is covered by blood diseases like lymphoma, multiple myeloma etc. which I clearly don’t have as my red and white blood cells are normal. So that leaves an auto-immune disease driving that test result. And those aren’t always expressing antibodies to catch on lab work. You can be what’s called seronegative, meaning you have symptoms of the disease but don’t show up on tests (for months, years…or your entire life). I think I fall into this later category which is why my results keep showing negative. But so far, doctors just want to keep referring me back and forth to the next specialist. It’s a full-time job trying to get answers and heal your body. If I shared my supplement and eating regime, you would be floored. But as of right now, no one will give me any treatment until they figure out exactly what I have. Frustrating.

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  2. There is a TV show called Mystery Diagnosis which I find fascinating and sad at the same time. It’s frustrating that, people like yourself, go years with debilitating symptoms, bounce around from doctor to doctor, have test after test done and end up with no answers. Then somewhere sometime down the road, someone puts the pieces together in a different order and finally discover the issue often far removed from any previous “diagnosis”. Meanwhile, the patience has endured more than many could even stand. I continue to hope that someone puts your pieces in the right order and finally has an answer for you…soon. Keeping you in my thoughts.

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    1. Yeah you wouldn’t be the first person to mention that show. I think I know what I have. My biggest obstacle is getting a doctor to diagnose it. I’ve been referred back and forth and each time, the doctors never really sit down long enough to hear everything. They are all top notch doctors who make such split making decisions. I learning fast that seeing the best doctors isn’t always the best plan.

      That’s one of the reasons why I am going to another hospital. To start fresh and get a new perspective to look at my case. I need a doctor who isn’t so busy that they won’t sink enough time into digging at my case.

      The disease I think I have is an auto-immune disease. It runs in my family and is incredibly hard to detect on lab work. The best test only detects it 70% of the time. And the next best test, only 40%. I’m pushing for answers and just tonight found a clinic up in San Francisco which deals with that disease. So…that’s another avenue for me to explore.

      What’s difficult here is trying to be a mom between all of my symptoms. And then pushing doctors, pushing for appointments, battling with medical records and jumping through the archaic medical system all in the name of getting a diagnosis.

      I’ve already looked into the treatments offered for this disease. Unfortunately, there is no cure. Just mess you can take to handle your symptoms. I don’t really like that answer so I’m doing quite a bit of research on stem cell therapy- specifically HSCT which I know would cure this. The question is- which doctor would ever perform this (it’s risky). And what would the success rate be?

      Right now HSCT is halting MS in barious patients around the globe at a 90% success rate. But how it works for certain AI diseases is still a work in progress.

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      1. It’s bad enough dealing with an AI but then trying to be a mother on top of it…..I don’t know how you do it other than you just do because those are the cards that were dealt and you can’t quit being a parent. Tough place to be. I hope the clinic in San Francisco proves to be a positive path for you.
        I can appreciate and understand your drive to research every avenue so this next question may not even need to be asked. Have you tried a Naturopathic Dr.?

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      2. My acupuncturist recommended one. I haven’t gone yet because I’ve been so busy trying to get into the right kind of rheumatologist and dealing with the hospital. One of my tests came back abnormal yet on my records said negative. However, the MS doctor told me that when this test was run, it showed positive both times/ then over time switched to negative. It wasn’t until I started researching what diseases that test points to that I figured out, the lab tech didn’t follow protocols for handling the blood vial. It’s a very sensitive test and the vial must be placed in a warm water bath immediately after being drawn. So I spent all week educating a major hospital on their own breech of protocols. Long story short, I just had the test redone. So I am waiting for those results next week. I pray it’s negative because this would point to a very rare disease which has no cure- and would also mean I could have 2 diseases as it’s found in patients with the AI disease I suspected I had all along.

        In the meantime, I am still straddling this mental fence regarding if this all could be driven by the Epstein Barr virus. It’s implicated in several diseases and found rampant in tissue samples compared to controls throughout several medical journals. The diet I follow right now is designed to starve EBV and also detox my body from the neurotoxins and cell die off. I’ve been following this diet now for over 2 months which may explain why I have recovered to the extent I have. I don’t know if a naturopath would be on board for this but, at this point, I’m following this diet as it can’t hurt me. And I don’t want to lose time here. It’s anti-inflammatory, vegan (except wild fish), gluten and soy free and no nightshades or corn. I don’t eat any inflammatory oils like canola and stay away from any MSG, citric acid, anything that says “natural flavoring” etc. No alcohol or eat canned foods. I only use coconut oil on my body now- same for deodorant. I am literally keeping my body away from anything toxic. It may all be fruitless and in vain, but right now- no one has been able to give me a diagnosis and frankly, no one is doing anything to help me…but myself.

        I have a lot of hurdles in front of me. First getting diagnosed and then second- finding a clinic to accept me for HSCT. That’s the only cure for AI diseases out there. And I am going to obliterate whatever this is first, before it has a chance to decimate me slowly year by year.

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      3. Sounds like you are taking all the necessary dietary and personal health steps and I think a naturopathic dr would be totally on board. We are exposed to soooo many toxins these days it’s quite alarming. I completely understand all of your attempts to remove anything toxic or inflammatory. It’s amazing what additives and certain foods can do to a body.
        I had a medical issue a couple years ago (nothing any where near what you are dealing with) that landed me in a neurologist office. He was ready to run expensive and uncomfortable tests, put me on meds that had undesirable side effects…worse than what I was dealing with. I passed on all of that mainly because, like you, I had already done my research and ruled out all the stuff the neuro was going to test for. I went to a Naturopathic dr and with some dietary changes and supplements, my condition went into remission. Funny….the insurance wouldn’t pay for cheaper Naturopathic dr visits or supplements but the expensive tests and meds ordered by the neuro and the neuro visits…all covered by insurance. I get a bit passionate about all of that and could go on for pages. lol
        You are a fighter and will beat this, whatever it is…even if you have to be the one to education the medical profession. Stay strong one day at a time.

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