No luck

Well, the Lyme test was negative. This means I am still on the hunt for whatever is causing the infection in my heart. I have a few other ideas but will just have to be patient.

In the meantime, my emotional problems are beginning to take over my entire life, and I have recently realized I am in the middle of a fibromyalgia flare up. I have noticed an incredible increase in fatigue but that could be due to any number of things. It became very apparent when I helped clean up some branches and leaves after my dad trimmed up some hedges in my front yard…it was very light work, but I ended up in so much pain later that day and was even worse the next. It was so severe that I had to hide in the bedroom while the boyfriend and I were supposed to have company. I felt so terrible. In addition to my usual tense muscles, I had some extraordinarily tender areas (mostly chest and left hip) and numbness/tingling/pins and needles in my left hand/arm. I have been experiencing that last bit more and more frequently, and I notice my hands go numb now if I decide to read in bed. I am trying not to be too alarmed at this but it worries me with whatever is going on with my heart.

So…my doctor has made some massive changes and I will probably be undergoing a lot of uncomfortable adjustments over the next few weeks. He has prescribed me Cymbalta, which I have not had before. I have had terrible luck with other antidepressants, at least SSRIs and Wellbutrin, but I will give it a shot. It’s supposed to work for depression, anxiety and fibromyalgia so we will see if it helps any or all of those things. Sounds nice, if it works.

Because of the possible interactions of Cymbalta with Flexeril I have been switched to another muscle relaxer: zanaflex. I have no experience with this, but hope it works. Also, we are finding that one of my supplements does appear to be helping out my thyroid so I am cutting down my dosage of thyroid hormone which is nice. I was also briefly put on Losartan and now going off it, which is fine by me because it made me incredibly sensitive to sunlight. I found myself with sunburns when I typically don’t burn easily.

I feel so scattered and unfocused so I apologize if it comes through in this post. I have been feeling like I am losing my sanity. I have had moments where I feel so disconnected from me and who I am, typically when my boyfriend needs me to be emotionally present… and I just can’t be bothered. I just sit there, eyes open, not caring… I know he needs me to reach out and touch him, or tell him everything is okay, but I just…don’t. And it scares me. I feel like my whole being is just somewhere else in those moments, and I am just this human-shaped shell, incapable of caring. I don’t know what it is. All I know is that I really need to get back into therapy, but I just keep hoping for something to slow down. I wish I could just take time off work and focus on my health, but it’s just not possible with my finances.

When I read about Borderline personality disorder, I felt like I was reading an autobiography. There are a couple things that don’t apply to me, but so much of it does. I am not diagnosing myself, because I just don’t believe in that, but I believe that this is a breakthrough moment for me. I have always read a lot about psychology and never, ever thought I could be someone who suffered with a personality disorder. Why was I so quick to embrace the possibility of other emotional issues, but deny personality disorders? I guess even in the stigmatized, there are stigmas. It felt too “permanent” maybe, to me before. But now it is something to run past my therapist and get my shit figured out. I am so tired of living like this. It’s a shame my emotional issues had to go into full speed when everything else did, too, but I guess it’s all connected. Coming off depo and allowing PMDD to rear its ugly head was one of the worst decisions I ever made, but I didn’t realize I had that issue in the first place until all this started happening…so I guess it could be a blessing in disguise.

My doctor referred me to a hormone specialist but unfortunately, that doctor is not covered by my insurance. I’m on the hunt for another to see what we can get figured out. This is all the updating I have the energy to provide currently…thanks for reading.

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3 comments on “No luck

  1. strokesurvivoreva says:

    Hi Diagnosis, I’ve been following your blog pretty much since I started my second one, which was in May. I completely understand how you feel. I suffered a brain hemorrhage in November 2011 and during surgery, suffered an ischemic stroke on top of it. Needless to say, recovery’s been a long road. I survived, while four people I knew in the last 18 months had brain bleeds didn’t. That’s what prompted me to start my second blog. That’s how I found you.

    I try staying positive, but at times it can be really difficult. Unless someone has walked in these shoes, they can’t speak for me, or for you. I know what it is to live with chronic pain. After surgery, my entire left side couldn’t move. I had to learn to walk, talk, focus, and concentrate again. I suffer left sided neuropathy to this day. I have chronic back, neck, and knee pain and have to wear a patch constantly. I’m supposed to change it every three days, but I wait at least four because I’m so afraid of becoming dependent on it. If my pain is extraordinarily high, I’ll take an over the counter pain reliever to supplement it. I take muscle relaxers as well, but I had my pain management doctor give me the lowest dose possible.

    Cymbalta is currently one of my meds (it works for both depression and neuropathic pain), but my neurologist gives it to me for the neuropathy. I just started taking something else for my depression. We’ll have to see how that works. I’m not allowed to work or drive and haven’t been since this all happened, so that sends my anxiety through the roof.

    All that being said, the Cymbalta does a pretty good job of taking the edge off the nerve pain for me. I’ll be curious to know how it works for you. Back when I was able to work, I was an EMT and was notorious for looking stuff up on the internet and trying to self-diagnose. Please don’t do that. You will just drive yourself deeper into a confused state. Trust me.

    Sorry this comment was so long, I didn’t even realize it until I started looking back at what I wrote. 🙂 I hope things work out and I look forward to chatting backing and forth. I don’t have many people that understand what I’m going through either, so I could use a few kindred spirits myself. Take care, Eva

    • Hi there! Thanks for your comment and for sharing with me.

      So far it’s been five days on the Cymbalta, starting with 30mg per day. I’ve been going through some side effects including tremors, nausea, vomiting and sleep disruption. It seems to only allow me to sleep 5 hours a night or less, at least so far. Today and yesterday I felt really aggressive, not sure if that’s part of the side effects for me (I read it is reported by a lot of people who have been on Cymbalta) or due to the lack of sleep, stress, or all of the above. I felt very ‘up’ on the second day but since then it’s been kind of rocky since then. It does appear to be helping the neuropathy issues, I only hope it will better handle the fibro pain the longer I stick with it.

      As far as the self-diagnosing goes, I’ve been used to doing lots of research and taking it to the professionals in my life, as I have quite a good collection now who trust my opinion. There’s so many who have just given up and told me I’m a “special case” or a “medical mystery”. I remember thinking I might have fibromyalgia four years before I was diagnosed, but put it out of my mind until I was referred eventually to a chronic fatigue/fibro specialist who diagnosed me. So while I don’t take it completely to heart, I have found it helpful in guiding my search for help/a proper diagnosis. With the mental health situation, I actually feel that relating to borderline personality disorder makes me feel more comforted. I haven’t been able to afford to get back into therapy quite yet, but I do plan on discussing this possibility with her. I got a couple books that I can relate to which could help me modify my behavior in the meantime/in addition to professional therapy.

      • strokesurvivoreva says:

        That’s cool, as long as you’ve been discussing what you’ve researched with your doc, I do that a little too. I thought you were reading and just taking what you read at face value. You have to forgive if I get a little confused sometimes; it happens occasionally, especially now that I’m trying so hard to do so many things. 🙂

        I’m a little surprised that you’ve had such reactions to 30 of the Cymbalta. When I read that you were trying it, I was hoping to hear only positive things. They started you on a low dose too. I’m hoping that with a little more time, it’ll help you more too. Please keep in touch. I hate to worry. :/ Eva

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