Humira, fighting my chemistry and waiting.

I’m back for my obligatory 3-month posting!!  Lord help me if I ever decide to keep up with things like I should…

So tonight is my 8th injection of Humira…  and I am frustrated.  I started Humira with a booster pack, so I had 4 shots then 2 weeks later I did 2 and now I do only 1 biweekly.  Within a couple of days of the first dose I had immediately noticed my brain fog clearing and I was feeling more energetic.  Since I’ve gone down to one shot, the brain fog and fatigue is back to where it was.  The whole reason I went on it was to help what we believe is joint pain associated with Crohn’s and it never really touched that.

Of course, Humira takes time to build up in your body.  I went to my 3-month appointment completely expecting to change up the treatment plan, but nah, 3 more months of waiting.  (Side note: waiting is my whole life.)  They repeated some labs, which they still haven’t gotten back to me on…  but it looks like the inflammation markers for my intestines are back in the normal range which is great.  I still have some labs that are perplexing, but I need to discuss those with the doc to see what she’s thinking.

In my mind, I’m thinking that we just ruled out Crohn’s as the cause to my joint inflammation and pain…  but who knows.  I was so desperately hoping this was the solution to 15 years of all-over aches and pains.  So the journey continues…

A recurring event in my journey is going back and forth between trying meds to help and then deciding that I’m better off without them.  I’ll try what the doctor suggests, we’ll make some changes for a while..  they’ll usually just cause side effects and not really help anyways and after a year or two I’ll just throw my hands up and go down to the bare minimum of what I need to function.  The least I’ve ever been on as an adult was 2 – birth control and allergy meds.  Oh the fucking freedom!

So, having more reasons than the usual ‘None of this is working anyways’, I ditched everything minus vitamins and medicine to keep Crohn’s and GERD in check.  The first thing I did was work on getting off of my antidepressants.  For those of you who don’t deal with chronic pain, yes, doctors prescribe antidepressants to treat chronic pain and that does not equate to “I’m in pain because I’m depressed.”  Do some research if you need.

I was not prepared for what my body was about to go through.  Previously I had missed doses of a similar medication and it caused a weird electrical sensation to pulse through my body.  Super weird, kinda messed with my head, but not a big deal.  This time I was coming off of 2 antidepressants and at the end of tapering down I ditched my birth control too. (The BC is important, we’ll get to that in a second…)

The electrical pulses got super intense, I felt dizzy most of the time, definitely had the fish bowl thing going on and it made my super depressed to the point where I was absolutely scared for my well being.  This all also blew my aches and pains way the fuck up.  This shit was serious and my doctors gave me no warning before they prescribed it or when we were making a plan to tapering off.  The worst for me was the Cymbalta that I didn’t even want to really try in the first place, but two of my doctors were pushing for so I agreed to give it a shot.  If you’re ever interested, do some research into Cymbalta withdrawal.  The pharmaceutical companies don’t really address these and don’t offer an actual plan or forms of the medication to taper safely.  I am so thankful that mine only lasted for about a month.  Some people deal with this for so much longer and, honestly, I don’t know what I would have done if I had have dealt with it for longer than I did.

I think stopping my birth control also made it worse.  I had legit been taking some kind of pill, had an implant or on the ring for a good 13-15 years without any break.  I had my reasons to do it and for the timing.  I don’t regret it.  I was having some issues, for which I’m still scheduled to have surgery because of and rather not go into full detail about.  I did some research after my last exam because the doctor pointed out something that no one had mentioned before.  In my readings, I saw that they casually mentioned that birth control maybe could cause it and that it maybe could cause some of the issues I was dealing with.  So fuck it, that’s an easy thing to try for something that is making part of my life complete hell, might as well try it.

I should get a goddamn doctorate.  When my doctor mentioned it, he acted like it was nothing and I didn’t need to get it fixed.  Seriously dude.  I swear, I stopped my birth control and it has completely went away.  I even feel like I can feel emotions again kinda.  Like, what is that?  And I was taking this for how long and no one thought maybe I should just not for a minute?  I just cured one of my goddamn ailments, that’s amazing, why has no one else been able to figure this?

So here we are.  Currently the all over pain is up and I’m doing what I can.  Here’s a list of things I’m waiting on because, holy crap, my life is literally just me waiting:

  • 3 months to see my rheumatologist to see if she even wants to treat my fibromyalgia
  • humira to kick in
  • whether or not to actually get surgery because of too many factors
  • my doctor to reply to my message from last Monday because work wants me to get vaccinations all the damn time and I can’t just do it like a normal person
  • winter to GTFO because cold weather makes everything worse
  • depression to GTFO because it’s a bitch

I could make this longer, but I realize people have lives.

So that’s it. (JK, I could go on forever.) Apologies for the vague bit, I know I usually don’t withhold anything, but that one is a bit personal.  I am planning on making another post soon talking about my forever struggle of work and health, so hopefully I won’t be a terrible person and actually get that posted here in the next few days or so.

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Aware.

Getting dumped into the fibromyalgia category is a quite a journey.  For me, it started when I was 12 and we didn’t get to a conclusion until I was 17.  Every person has a different path, but it seems that two things are a constant: 1. It takes years to figure out why you’re in pain all the time, and 2. There isn’t enough information or the information isn’t taken the way it’s intended.  It blows my mind really.

I was diagnosed by a pediatric rheumatologist that reminded me of Count Olaf from Lemony Snicket’s A Series of Unfortunate Events.  The hair and body type was dead on and he was, at least in my head, a mean doctor.  I’m sure the examination of trigger points didn’t help my view of him, however it was the comments made when it came to exercise that really made me not a fan.  I would do what he wanted, nothing changed.  When this all started I was within my appropriate weight for years anyways, so I didn’t see the point.  He said that he should come to my house and whip me with an extension cord…  in front of my mother.  What kind of shit is that?

Needless to say, I didn’t go back to him.  Now I don’t know if it was because I’m not as educated or if it was because he was not as educated, but we didn’t have a real understanding as to what was going on, what was ruled out, or anything inbetween.  My pain wasn’t interfering too much in my life for it to be a huge issue so I continued on my meds and went about my merry way in life.  I didn’t mention it a lot to people because most people thought it was a made up condition at the time anyways.

Today I am a medical professional and make sure that my doctors explain everything to me and take a vocal role in how my treatment is handled…  Even if I feel like a fish flopping around on the ground in this situation…  It’s always complicated with me.  I have symptoms, nothing really shows up on tests, there isn’t really any damage as far as they can see, so there’s nothing to do.  It’s frustrating to me and it’s frustrating to the doctors.  The most important thing to have in my situation is well educated doctors that are keeping up with new research.  This means university doctors for me.

I was hesitant to see new rheumatologist.  I’d been handling myself with just my PCP, a gynecologist and a GI doc quite well.  The feelings I had from the old rheumatologist came back and I just felt like I’d be berated for being overweight and that would be it.  To my surprise it was nothing like that.  She was critical in the way she examined me and went over my history, as one should.  She didn’t think my new issue was a new condition, but she was going to do the workup anyways.  When she asked if I had any questions, I hesitated and eventually just told her that I hate my fibromyalgia diagnosis.  I told her that I never really trusted that it was my answer and I never felt any better.

Her response to that comment made an impact on me.  She explained to me that they believe it’s your nerves confusing signals as pain and how exercise trains those nerves to stop interpreting that stimuli as pain.  This made sense to me, especially after seeing the work done at my previous research job.  I felt better about it.  She even gave me a pamphlet for a place that works with a lot of her fibromyalgia patients for pain management.

So a few weeks ago I went to find groups on facebook that I could join and talk to others with fibromyalgia.  I mean, let’s face it, dealing with this stuff makes for a lonely existence.  I found a couple groups and after a day of my newsfeed being completely full of my new fibro friends, I couldn’t take it.  The posts were full of pseudoscience, issues that have nothing to do with fibro, questions that should be strictly for a doctor and everything inbetween.  My impression: most of these people have an actual diagnosis that their doctor didn’t find and most of these people have doctors that aren’t educated enough to educate their patients.

I had to get out of there.  I felt terrible.

Keeping on top of your health is extraordinarily difficult when you’re dealing with vague symptoms, overlapping diseases, uneducated doctors, stubborn doctors, you yourself don’t have a background in healthcare and if you’re dealing with cognitive issues thanks to your condition like many of us do.  There is a serious lack of awareness with this condition that we’re learning more and more about all the time.  It makes it even more difficult when doctors are giving up on diagnosing their patients and throw them in our category.

This being said…

May 12th is Fibromyalgia Awareness day.  Please take a minute to do some research, visit http://www.fmcpaware.org/ , talk to someone who has fibromyalgia and learn about their experience.