Medical Shenanigans Part II

The rheumatologist’s nurse called me today. My labs are abnormal. My sed rate, TSH, and T3 are high. The Sjogren’s antibody test was negative. The rheumatologist is referring me to an endocrinologist. The endocrinologist doesn’t have appointments available for three months. Another day, the same medical shenanigans.

I tried to explain to the nurse that taking oral contraceptives can cause an elevated TSH and elevated T3. However, the nurse didn’t understand the difference between a T3 hormone level and a thyroid antibody test. She kept telling me that my “T3 antibodies are elevated”. That statement doesn’t make sense. T3 is triiodothyronine which is a hormone level, not an antibody. TPO and Tg are antibody tests but she couldn’t tell me if the rheumatologist ordered an antibody panel. The nurse snapped at me for questioning her…for having more medical knowledge about this topic than she does, really. Again, same medical shenanigans, different day.

Now I have the “pleasure” of waiting months for treatment again. Just when I felt I was starting to make headway with treatment, or at least have a diagnosis, it all gets turned upside down. If I had an option, I’d quit medicine. I’d quit seeing doctors, making appointments, having tests – all of it. I’d just move on with my life and focus on something-anything- other than how much time I spend feeling sick.

(Oh! And the Sjogren’s antibody testing being negative? That doesn’t really mean I don’t have Sjogren’s. The test has a 30% false negative rate. Sigh…)

New Rheumatologist. New Recommendations.

My previous rheumatologist retired unexpectedly. After months of waiting, I was finally able to see a new rheumatologist. She ordered new labs, questioned my current diagnoses, and (of course) recommended I stop taking pain meds.

Yes, she said I should stop taking Ultram. In her opinion, I should completely stop taking the only medication that has allowed me to remain active and functional. I should stop taking Ultram, which I’ve taken for a few years now, because some people become addicted to Ultram. <insert grumpy eye rolling face here>

I am not addicted. After several years of taking Ultram, I’m unlikely to become addicted (less than a 1% chance, actually). I only take Ultram to reduce the exceedingly high levels of pain which I experience daily. I don’t even take enough Ultram to eliminate the pain, just reduce the pain so that I can function and focus on something other than, well, being in excruciating pain.

So, even though I am supremely irritated with this course of treatment, I’ve started the slow process of tapering off Ultram. I don’t want to be written off completely as a non-compliant patient (which is what happens if you are both fat and do not do exactly as your doctor recommends). This week, I reduced my dosage by 25%. I’m already experiencing a marked increase in pain and pain-related sleep disturbances. Things are only going to get tougher from here as I return to my excruciating, pre-medication state. I really don’t want to go through this. I can only hope that there are other pain relief options which may work for me.

The Guaifenesin Helped

Today I’ve suffered through lower back pain all day. I tried all the back pain remedies – pain meds, muscle relaxers, heating pad, gentle stretching…nothing helped. This is the sort of back pain I experience just before I get debilitatingly severe back pain. Today the pain has been a strong, nagging ache. The next stage of back pain feels like someone is trying to saw through my lower back with a steak knife. It’s excruciating. It’s hard to sit, stand, work, or even sleep with debilitating back pain.

Interestingly, I didn’t have significant back pain while I was taking guaifenesin. I’m fairly certain this wasn’t placebo effect because I did not expect guaifenesin to work reduce pain, especially chronic back pain. I’m going to start taking guaifenesin again and up my dose from 200mg 2x/day to 400mg 2x/day. Guaifenesin is also known to thin mucus so I had fewer asthma and allergy symptoms while I was taking it – an important benefit.

Here’s to guaifenesin! Here’s to hoping my back ache doesn’t become debilitating because I don’t have time for that misery!

The Math Mega-Tantrum

I came home from work feeling defeated and ready to flop across my bed and cry myself to sleep because the pain had been so unrelenting today. I took meds, I stretched, I drank water…nothing helped for long. The pain invaded every thought, every activity, every minute. Constant, unrelenting, grating pain.

Flopping on the bed in tears after work wasn’t a viable option because Luke and Oliver needed dinner, showers, homework checked, papers signed, order forms filled out, etc. The cats needed dinner. BigDog needed training time. MediumDog needed attention and dinner. I gulped down a few more ultram to take the edge off so I could function.

Shortly after I got home, Luke threw a mega-tantrum over his math homework. Luke is 12, but he was crying, shouting, screaming, and acting like a child half his age. Luke regresses when he feels overwhelmed. Lately, Luke has been declaring that he wants to kill himself whenever he feels frustrated making it difficult to determine if Luke is just going for dramatic affect or if Luke actually intends to commit suicide. Do I rush him to the psychiatric hospital to be committed because he intends to harm himself or do I refuse to take his comments so seriously?

After 2hrs of mega-tantrum, Jonathan took a break from gardening to grumble at Luke for having bad behavior. It didn’t really help. Jonathan didn’t take Luke’s suicide threats seriously. Per Jonathan, I wouldn’t take Luke’s threats seriously if I had “raised Luke from the beginning”. Luke demanded that I walk to his room repeatedly even though walking was very difficult for me and he just wanted to ask a question about his homework. I understand Luke was upset, but I wish Luke would understand how much pain I experience at times. I try to explain it, but I’m not sure he truly understands. If he understood, he wouldn’t refuse to leave his room and demand I come to his room to answer questions on days like today.

These days, Jonathan spends most of his time outside gardening while I do the house chores, cooking, animal chores, and take care of the kids after work. In the morning, Jonathan sleeps for 3hrs after I wake up to get the kids and myself ready for school.(This doesn’t bother me, however, because Jonathan is in a rotten mood in the mornings) I’m hoping Jonathan’s garden endeavors pay off in much lower grocery bills this summer. I’m hoping that I’m not stretching myself thin and dealing with everything on my own just so Jonathan can dig in the yard.

The Impact of the Awful Pharmacy

Spending a week or more without the meds I had been taking has had some interesting side effects. Along with the typical withdraw symptoms of shaking, sweating, nausea, and headaches, I’ve experienced a migraine, insomnia, night terrors, severe pain, and – the worst so far – a TMJ flare.

I deal with pain and weird symptoms daily (as regular readers know), so the withdraw symptoms were uncomfortable, but I’m accustom to feeling uncomfortable which made the symptoms tolerable. I haven’t had night terrors in years and I chalk the night terrors up to suddenly being without Lexapro (an antidepressant). Mess with your brain chemistry, the brain comes up with some weird stuff.

The TMJ flare has several causes. I ran out of pain and anti-inflammatory meds which caused widespread body pain which, unfortunately, caused me to unintentionally clench my teeth. Clenching teeth aggravates TMJ. Going off pain and anti-inflammatory meds which allowed the TMJ symptoms to worsen. So, for the past week, I’ve had intense jaw pain, severe daily headaches, ringing in my ears, and an oddly swollen face. On top of all that – I’ve had insomnia since the jaw, ear, and headache pain are just out of control.

In summary, the awful pharmacy has really screwed up two weeks of my life because they just decided not to refill or send my meds. They’re now calling their mistake a “clerical error”. Clerical error my ass.

The Awful Pharmacy

The past 3 days have been hard. I’ve paid for my day of normalcy with pain which had kept me from sleeping well which has led to extreme fatigue. To make matters worse, the pharmacy my insurance requires that I use still hasn’t shipped the meds I ordered almost 10 days ago. I’m cutting ultrams, orphenedrines, and lexapros in half to hopefully make them last until the meds finally arrive. I take lexapro, an antidepressant, for fatigue so halving my dose is making the fatigue from not sleeping well worse. I’m afraid to take more ultram so I can sleep through the night because if I run out I’ll have to suffer through withdraw.

The pharmacy is awful. Even the lady who answers the phone is terribly rude. She’s hung up on me several times. I wasn’t rude to her in the least, but she has no patience for answering questions…which is kinda her job actually since she’s the customer service person at the pharmacy.

Work has been a pain this week as well. I haven’t gotten breaks so the only time I’ve been able to leave my desk is to use the restroom. People often call my cell while I’m in the restroom. It takes 3 min for me to walk to the rest room, urinate, wash hands, and return to my desk. People cannot wait 3 min. I have more projects than I can complete and feel constantly behind and overwhelmed. My job is designed for men who can devote their lives to work while their wives take care of the children. My job is not designed for me.

I am grateful my job pays the bills. However, my job is definitely not my life’s purpose. When I consider the things I’d rather be doing, it feels like I’m wasting my life. Fibromyalgia and RA also make what I would rather be doing nearly impossible. It’s a catch 22, really. Outside of this blog, I encourage other people and don’t complain. This is the only place I have to talk about how frustrating my job can be.

Illusion of Normalcy

Today has been a bad pain day but not a bad fatigue day. I stubbornly decided to take the maximum amount of pain meds and muscle relaxers and plow through as many chores as I could while I had the energy. I will pay tomorrow. However tonight I’m glad to go to bed feeling like I’ve accomplished something.

Lately my reserves have been empty. I’ve had no extra money, energy, or time. I’ve been feeling defeated because I accomplish so little and every choice seems impossibly difficult. (I spent several days trying to decide if I deserve and can afford pants, for example.) It’s nice to go to bed with a clean house, clean laundry, and freshly dyed hair. Tonight I feel like a normal person (who doesn’t have RA and fibro) who accomplishes normal things (like cleaning the house on a Sunday.)

Exhaustion, Guaifenesin, and Suicide

I’ve spent the past few weeks feeling mostly well with the exception of feeling completely exhausted. No major pain to report. The rash on my face has been reduced to a few spots (it was covering the majority of my face). It’s just that no matter how much rest I try to give myself or how slow I try to take things, I’m mind crushingly exhausted from the time I wake up to the time I go to bed.

Exhaustion is making it hard to work through the day. It’s hard to be patient with the kids. It’s hard to get anything done, really. This level of exhaustion is hard to describe. It’s worse than the tiredness you feel when you’re catching the flu. It’s worse than being sleep deprived. The only thing I can equate it to is staying up for over 48hrs straight. I had to do that for work once when I was on call. By the end of the 48hrs I was falling asleep at the table as I tried to work and falling asleep in the shower. I don’t remember getting to bed that night. That’s the closest to how I feel right now.

Since I received a gift card to Amazon, I ordered the kindle version of What Your Doctor May Not Tell You About Fibromyalgia. According to Dr. St. Amand, the author, most fibromyalgia symptoms can be reversed by taking guaifenesin. Guaifenesin is the drug in Mucinex that loosens mucus. According to St. Amand, guaifenesin is only helpful in reversing fibromyalgia symptoms if all salicylates are removed from the patient’s hygiene regimen. Salicylates are in most lotions, cosmetics, tooth pastes, hair products, bath soaps, etc.

Since starting guaifenesin protocol would entail purchasing an entirely new array of hygiene products, I would need to save up before I could start. Currently the only treatment for the body engulfing skin rash that’s been effective is packed with salicylates.  My sulfate free soaps, shampoos, face was, and makeup all contain salicylates too. But, as miserable as this exhaustion is, perhaps saving up a giving the guaifenesin protocol a try will be helpful. (Especially considering guaifenesin has little to no risk of side effects).

Before I was married to Jonathan, I would often think about suicide when I felt debilitatingly sick. Obviously I wouldn’t commit suicide now because it would be extremely traumatic to Jonathan, Luke, and Oliver. But, before they were in the picture, I would think about what would happen when I finally become too sick to work. Where would I live? Who would take care of me? I couldn’t depend on my family to take me in and it’s unfair to expect friends to support me or care for me since they all have their own lives. So, I decided when I finally get too sick to work, when I just can’t push myself any longer, I would re-home my pets with a no-kill shelter and commit suicide.

Suicidal thoughts of this nature are relatively common among people suffering from fibromyalgia, chronic pain, and RA. I don’t feel crazy or depressed when I have suicidal thoughts, really. I’m not sure thinking about suicide when you’re chronically ill is depression either. It’s different than depression for me. It’s a plan B. What would happen when I’m so sick I needed to be taken care of but there was no one to take care of me…

The Great Pharmacy F*ck-Up of 2014

Today, 3 weeks after my initial attempt to refill my pain meds, the pharmacy finally sent my pain meds. Since tramadol changed drug classes, the pharmacy decided to delete my prescription instead of calling in a refill. They also failed to inform me that they chose to delete my prescription in spite of numerous online refill request attempts, phone calls, voice mails, and hours spent on hold waiting for SOMEONE to answer the damn phone.

When I finally spoke with someone, she treated me like a drug addict. “Are you SURE you need a refill of this medication? You know you can become dependent on this medication, right? Is there a REASON your prescription has been deleted?”  Yeah, because my doc is going to write me a script for something I’m addicted to…<eye roll>

As a result of the pharmacy’s BS, I ran out of tramadol and had to ween myself off the medication last minute. I spent the weekend lying in bed suffering from severe, debilitating, pain among other withdrawal symptoms.

How is this acceptable? Why don’t I use another pharmacy?

#1 I’m an employee of the same company that owns the pharmacy. I cannot complain to management about the service of the pharmacy without retribution. I have tried to bring up the issues with the pharmacy with management twice and have been told to keep my mouth shut because the pharmacy staff are technically my coworkers. Any further complaints and I will be investigated.

#2 The insurance plan offered by my employer mandates that I use the company’s pharmacy. If I use another pharmacy, my medications will not be covered by insurance.

Now that the worst of the withdrawal symptoms are over, of course they send me the medication they should have sent me all along. It’s safe to say the past few weeks have not been very good at all.

The Bad Pain Day

Tramadol (generic: ultram)
Tramadol (generic: ultram)

Today has been a bad pain day. If you’ve never experienced chronic pain, a bad pain day is hard to relate to, I suppose. Imagine falling down a flight of stairs and feeling sore for a few days from the fall then extend that feeling through every day of your life. Some days it feels like you just fell down the stairs. Other days it feels as though you’ve broken most bones in your body. And some days you feel sore but almost normal.

This morning the muscles in my hips and left leg are contracting into painful charlie horses which was a painful way to wake up. Even the muscles in my lower bad were tight and sore. I quietly hobbled downstairs to get some pain meds trying not to wake up Jonathan. Sometimes moving around helps so I tried doing some chores. It didn’t help.

Since it hurt to bend, it hurt to walk, it hurt to sit, it hurt to stand…basically every activity hurt, I decided to take a muscle relaxer. Jonathan woke up and it still took an hour for me to be ready to go thrifting because the cramps and pain were so serious. While we were shopping, I would have miserable shooting pains if I turned too suddenly or bent down to look at something. I would wince and try to breathe through the pain so the other shoppers didn’t think I was insane. Jonathan worried about me the whole shopping trip which drained the joy from looking at furnishings for our new house.

I needed to carry some small boxes upstairs and couldn’t because of the pain. I needed to clean, but couldn’t. I needed to pack boxes for the impending move but that was out of the question.

Today is the kind of day when having RA and fibromyalgia really, really sucks.