Tag Archives: chronic pain

Tramadol is definitely my new best friend

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My Martha Sim is VERY knocked up, and definitely not on Tramadol, though her facial expression is pretty funny!

My Martha Sim is VERY knocked up, and definitely not on Tramadol, though her facial expression is pretty funny!

How could I have thought I didn’t want to blog anymore? I still have so much to say.

It has been over a month since I started taking 25mg of Tramadol every day, according to my rheumatologist’s action plan. I think it’s safe to say that it’s working. My pain level is way down. I still have my bad days, but usually in the morning before I take my dose. I also still get little twinges or, like my left wrist today, something will bother me all day, but it is never enough to stop me from doing anything. Also, 1,000mg of Tylenol usually knocks it out. I bet even just 500mg would. (I haven’t taken any today for my wrist. I’m lazy like that.)

I’m thrilled. It doesn’t help with my other symptoms, but most of them can be managed somehow.

Speaking of other symptoms, my GI issues have changed. It used to go a little something like normal bowel movement one day, constipation or very hard and painful BM with little product the next, and then the next day very soft with a lot of product. For the last month or so, I’ve been going at least a week — sometimes two — without going at all. When I do, it’s either very hard and very little product (like before), or very soft and a lot of product (like before). I am going, though, so I guess it’s not a huge deal. At first, I was pretty freaked out. I thought I was dying or something. Now, I’m a lot less panicky about it and have been proactive on making it better. I’ve been taking a half dose of Miralax every day, and have been trying to eat a lot of fruit throughout the day (a cup or more). Yesterday, I had nothing but fruit for breakfast and for lunch, and today I had nothing but fruit for breakfast. (Which reminds me… I need to go take a dose of Miralax!)

I am pretty sure this is all Tramadol’s doing, since it started around the same time I started taking the 25mg every day. I’m seeing Dr. Greco in a couple of weeks or so, and will definitely be asking him, but as long as the Miralax and fruit help and I’m still going rather than not going, I’m not going to freak out again.

I’ve also been thinking a lot about my lack of a diagnosis. It makes me fucking crazy that I don’t know what’s going on. It makes me fucking crazy that this all might be a post-effect of having mono when I was seventeen. It makes me fucking crazy that not having a diagnosis for my very real illness severely limits my rights in the workplace. If I had a diagnosis, none of the things That Horrible Place got away with would have happened. Or, at the very least, I could have had a lawyer get me a pretty penny. Right now, I’m looking for a part-time job, but in the future I definitely want something full-time, and knowing that without a diagnosis, working full-time leaves me no wiggle room whatsoever for doctor’s appointments… It makes me worryworryworry.

What I was getting to before that whole worryworryworry tangent is that I’m going to ask Dr. Greco about post-effects of mono, and see if we can start looking into that route. Depending on how this next appointment goes, I’m also going to start looking for a second opinion. While I truly feel like Dr. Greco does genuinely care, I don’t feel like we’ve made any progress in the last year. I’m still kicking myself for not rescheduling my appointment at Yale and just canceling it.

Mike’s cousin Jannelle works in a rheumatologist’s office in Rhode Island, and said she might be able to squeeze me in, so I can get a second opinion. We were talking about Mike and I visiting in August and staying for the weekend, so we’d have to decide and then let her know. It might be worth it, though.

I’m so over this mystery illness. I just want it to go away. I’m hoping that maybe it will; maybe it’s some weird post-mono hiccup and it’ll just kick rocks after torturing me for a while.

RANDOM FUN FACT:
G4 has just informed me that someone is busted for marijuana possession every thirty-five seconds, or something like that. These are the things I hear on the TV while blogging. If that’s true, our country’s police are spending way too much time on petty crime. They should be putting that manpower into the dangerous drag racing on South Main! Besides, who doesn’t like a stoner? Everyone should have a requisite pothead friend. They’re entertaining, and insightful.

I didn't get a treatment plan, but I do have an action plan

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I’m not getting excited about treatment or a diagnosis anymore.

On Thursday (05/12), I saw my rheumatologist. After waiting over an hour in the waiting room as per the usual, I finally got an exam room. Dr. Greco had who I’m assuming is an intern in the hospital look over my blood work, talk to me about my symptoms, and then give me an exam. She was really nice. And pretty. And thorough. I am not at all against seeing an intern. In fact, I’m kind of all for it, since they tend to have fresher eyes. After all, interns were the ones who figured out what was wrong with my godson when no one else could. So, even though I thought that I would be seeing Dr. Greco to discuss a treatment plan for RA, I treated the intern as though I were intentionally seeing a new doctor. I can’t quite remember, but I’m pretty sure her name was Dr. Patavel. I’m probably wrong, though, and I feel bad for forgetting her name.

I showed her my nails, and she said they are pitting (so clearly I suck at research), and that it can be caused by vitamin deficiency. She also said that some types of Psoriasis can cause nail pitting, skin rashes unlike what we normally see as Psoriasis, and joint pain. We also talked about my GI issues and I told her that I’d stopped taking Levsin because it made me sick.

Dr. Greco came in shortly after. He asked her what she thought of me. She ran through everything: I have no signs of anemia, I had a positive double-stranded DNA, I have symmetrical joint pain, my nails are pitting, etc, etc. She also mentioned the possibility of Psoriasis. Dr. Greco checked my pressure points for fibromyalgia again, and as usual, I didn’t have any pain where he pushed (except for in my left shoulder, but I can explain that: stress). We discussed my visit with Dr. Zlotoff again, and he asked her what she would diagnose me with. She said she didn’t know, and then Dr. Greco went into Action Plan mode.

He told me that he wants me to keep a thirty-day record of the pain, on a scale of one to ten (ten being the worst), with a list of what hurt that day. During two weeks of those thirty days, I’m not to take any Tramadol. Then, after those two weeks are over, I’m to take 25mg of Tramadol every morning, to see if it will help the pain after building up in my system. So, the record will show what my pain is like with no Tramadol, just Tylenol, and then with 25mg of Tramadol daily. I’m kind of afraid of going without my Tramadol crutch; even though I can’t take it during the day if I’m out and about, I always know that it’s there when I get home. Still, I went without it before I-forget-which-doctor prescribed it to me, so I know that it won’t kill me to go without it for two weeks.

I’m also to start some kind of exercise program, like Tai Chi. I’m thinking yoga, so that I’ll have an excuse to buy some VS yoga pants*. I’m only half serious; I know that yoga is supposed to be good for toning, when you’re like me and ellipticals and Jillian Michaels videos hurt. Dr. Greco said, “I want you to become an exercise freak this summer.” It’s better than when Dr. Lichter told me to get a gym membership and sent me on my way¹, but still. I guess it’s just hard to believe that I’m over four years into all of this, and still miles away from a diagnosis.

He also said that his cousin is a rheumatologist in Southbury, and that his cousin has a wider knowledge of pain medication. (You know. Since every medication I’ve tried either doesn’t work or causes a bunch of odd side effects in me.) He’s going to talk to his cousin to see if he can get some ideas of other meds I can try. (Yippee? Honestly, I’m kind of afraid of meds now.)

Dr. Greco said again that something is definitely brewing, and now I’m starting to understand that this is going to take more time. It might even take something drastic. Like, I might not get a diagnosis until whatever this is decides to really rear its ugly head and send me into the ER for something life-threatening, like on Mystery Diagnosis.

Here’s what I’ve realized: I want a diagnosis, not treatment. I just want to know. If somehow, out of that diagnosis I get treatment, fine, but that’s not what I’m after. (Then again, today isn’t a bad pain day, so ask me again when I’m laying in bed in agony.) I want to know what’s wrong with me, so that I can move on with my life. I hate that not having a diagnosis also limits protection of my rights. More than that, though, I hate wondering whether I really am just crazy. I know I’m not crazy, because this pain is all very real, but sometimes… sometimes, yes, I question myself. I think, Are you sure that you’re not just letting this happen? Like, creating hysterical arthritis or something? Are you just subconsciously fabricating all of this for attention? Usually, this happens when I’m feeling desperate, like when blood work comes back negative again, or when I go to a doctor’s appointment expecting a treatment plan and find myself back at square one again, instead.

I hate running into the proverbial brick wall over and over.

Brick wall

Brick wall, by zoreil

But that brick wall will never break me. I may feel like I’m cracking quite often (whether it’s health-related or not), but I’ve learned to take a day or two when that happens. During that time, I lay in bed all day and watch Grey’s Anatomy² or Batman Beyond, or play Plants VS Zombies on the DS, or read. I drop all of my problems and worries and let myself separate from it. Some people might call it hitting rock bottom, but I call it recharging. There’s no depression. Just recharging. And once I’ve recharged, the depression and anxiety I felt before feels much more manageable.

So I’m going to keep this record of my pain, and look into yoga, and hope that the diagnosis comes without me having to end up in the ER. I’m going to try to stop getting so excited every time I get blood work done, or a new symptom pops up, or my doctor mentions a treatment plan. I’m also going to try to stop questioning myself when I hit that brick wall; I may not be able to trust my body anymore, but I have to be able to trust myself. I also have to be able to trust my rheumatologist, and believe that he’s still doing everything possible to find out what’s going on.

I have started thinking about getting a second opinion. I’m kicking myself for canceling my appointment at Yale. I’m just wondering if maybe, if I see another rheumatologist, they’ll pick up on something else we’ve missed. I’m also wondering if there’s something to the theory that some autoimmune diseases are triggered by viruses. I had mono when I was seventeen, and mono is known to later trigger some autoimmune diseases, such as Rheumatoid Arthritis, Lupus, and Sjogren’s Syndrome. Mono is caused by the Epstein-Barr virus (EBV), and in some cases some people end up with chronic EBV infection… and sometimes Chronic Fatigue Syndrome. All of these diseases — RA, Lupus, Sjogren’s, and CFS — have symptoms that match my symptoms.

So I am going to follow the current action plan:

  • Keep a daily record of my pain.
  • Look into and start an exercise program.
  • Continue taking B12.
  • Take multivitamin to see if it helps the nail pitting.
  • Call Dr. Zlotoff and talk to him about alternatives to Levsin³.
  • Talk to Dr. Greco about EBV next time I see him (07/21).

That’s all I can do right now.

Image Credit: Brick wall, by zoreil

*Yes, I’m over the whole online order thing. I got over it pretty quickly after receiving a shitload of coupons for free panties and savings. I’m easy like that.

¹This was back when this all first started, probably in 2008. I couldn’t find a PerpetualSmile.net or elizawhat.com post about it, but I’m thinking it’s in one of my old LiveJournals… which I plan on importing here, a little at a time.

²I just bought Season 3! I am too addicted now to borrow them from Sandy; I have decided to collect all of the seasons on my own. It’s pathetic. But I’m totally okay with pathetic, and I won’t even deny that I am completely obsessed with this show.

³I think Levsin did help my IBS symptoms, but it made me nauseous and dizzy… which doesn’t really help me.

I make no sense: Exhibit A

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I guess I didn’t do too good of a job at expressing my thoughts last night. I definitely did not mean that none of my family, friends, or Mike care about my pain, nor did I mean that none of your family, friends, and significant others don’t care about your pain. I get the feeling that I inadvertently hurt a few people’s feelings, so let me clarify.

It’s not like you can tell everyone you come into contact with that you are hurting. So, you wrap it up and walk around with it.

This is probably the only part of the post that is clear. I go through every day encountering many different people: coworkers, complete strangers, family, friends, and my Mike. (I’d throw him into the “family” or “friends” category, but saying he’s family just sounds gross when I think about it, and saying he’s one of my friends doesn’t even begin to cover it. Mike gets his own category.) There’s also my cat, who seems to be the most in tune to how I’m feeling — which is only because she has that sometimes creepy seventh sense. (I say “seventh sense” because we all know cats and dogs see ghosts.)

Now… where the hell was I? (See what happens when you try to clarify a post before eating dinner? My pizza needs to hurry…)

One of two things prevent me from telling anyone I don’t feel good (unless they ask):

  1. I don’t want to whine, or
  2. it would be inappropriate

I recently had a conversation with a friend whom I had just told about my mystery autoimmune disease. I’ve known him for years — going on nine years, to be exact — but in the past four years since my body started going haywire, I had never even mentioned that I was sick. Yet, we share things that most friends share with each other, like family problems, relationship problems, job problems, and so on. I felt really bad that I had never told him, and apologized. He asked why I had never mentioned it, and I said that I didn’t want to be a whiner.

He said something along the lines of, “You’re not a whiner. I think you’re really cool.”

I had to backtrack. “No, no. I didn’t think you would think I was a whiner. I just didn’t want to whine. I make no sense.”

And that’s exactly it — I make no sense. I don’t want to tell the people I’m close to that I’m in pain because I have some kind of macho “you can’t be weak” mentality toward myself. It’s not that I think anyone would think any less of me. It’s me, coming down on myself. Even stranger, no one has done anything to me to inspire this mentality. I can only speculate: denial? stubbornness? wanting to appear strong, even though I feel weak?

The second reason why I don’t say anything about my — I so hate to use this term, but here we are — illness is that it’s not always appropriate. Before I started working full-time, I would have bad pain days that would send me straight into tears. Now, those bad pain days — or even moments of excruciating pain — still make me tear up, but I hold it in because less than ten feet away from me are my coworkers. And then I would have to explain why I was whimpering. And then I would have to explain why I have this pain. And then I would have to explain why my doctors can’t figure out what’s wrong with me. And so on.

Having to explain all of that is exhausting. Plus, it again comes down to me wanting to appear normal.

So, no one truly knows what it’s like to live with my pain, except for me.

Every day is kind of a crazy circus of emotions regarding my autoimmune disease and chronic pain. For example, yesterday:

  • 6:30am: My alarm went off and I got up out of bed without stiffness or pain. I got ready for work without limping around.
  • 7:50am: I left for work still feeling pretty damn good. As I drove, I started to think that maybe I had overreacted, that it all hadn’t been that bad.
  • By 10am, my left wrist was stiffening up and aching.
  • Around 11am, or maybe even noon, my right hip started getting slammed with jolts of excruciating pain. I kept biting down on my fingers so that I didn’t scream.
  • By the time I got home around 6pm (I had to work late to make up time for tomorrow’s doctor appointment), my feet were stiff and too swollen for my Nike sandals.
  • By the time I went to bed, my lower back was aching like a female bunny after too much Woohoo*, and I was ready to punch someone.

Today was actually a relatively good day; I am a little stiff and swollen in some places, but not in any real pain. (I’d say about a 2 out of 10.)

Because I also have depression — which is now worse because of my autoimmune disease — I can honestly say that it’s the same when your pain is in your heart rather than your joints.

Anyway. I hope I’ve made my last post a little more clear.

–

*Clearly I am having Sims withdrawals; woohoo is the Sims word for sex.

No one cares about your pain, except for you

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I don’t mean that no one cares about you. I don’t even mean that no one cares that you are hurting. When you experience any kind of pain — emotional or physical — on a daily basis, you carry it around with you. It’s not like you can tell everyone you come into contact with that you are hurting. So, you wrap it up and walk around with it.

Your pain becomes yours and only yours. You begin to feel wretchedly lonely. Every day, you spiral further and further down into your pain. You get to know it, learn its intimate secrets. After a while, your pain almost becomes a friend — you know, if it didn’t hurt so damn much. Your pain knows you better than you knew yourself, and because of your pain, you get to know yourself better. You become stronger. You learn that what you thought were your boundaries are silly little lines that you can just step over. Every day, you conquer your pain a little more in some way — whether it’s figuring out a new medication routine or something that soothes your aching mind.

And then your pain unleashes a surprise attack, one that overpowers your new medication routine or your new relaxation technique. You begin to descend again.

When you come out on the other side, you learn something new about yourself — that the boundary you learned to overcome previously is just a silly little line that you can step over.

And so it goes.

For a quickie post, this thing has a lot of tags

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Is this week over yet?! I’m glad tomorrow is Wednesday and all, but it needs to be Friday. There is a bottle of alcohol with my name on it. (I haven’t yet decided whether that bottle is whiskey or vodka.)

My goal tonight is to get my ass in bed early, but I really wanted to stop in here and say hi. I feel kind of bad that I’ve been paying more attention to Freaking Bookworm lately. (More on that soon! My dreams are coming true!) If you’ll excuse my laziness, here is an update… in bullets!

  • I had allergy testing done yesterday. It turns out that the crazy, all-over itching probably has more to do with my cat than the Mystery Autoimmune Disease. I am allergic to everything – including my cat — except dogs. It fucking figures that I’m a cat person and am allergic to cats, and am not a dog person but don’t have a problem with them. I actually had no idea that I was allergic to my baby. The proof is in the weal that is still on my arm. The biggest weals are ragweed and birch tree, though.
  • I attempted Jillian Michaels’s 30 Day Shred: Level 1 last night with Sandy, and discovered that it is definitely not for people with joint pain. It’s too fast paced, too intense, and today I am paying the price in all of my muscles and joints. I’m gonna stick to crunches from here on out, and try to go for a walk every day. I’ve been staying away from garbage snacks, though. Apple cinnamon rice cakes are my crack.
  • I’m kind of afraid that I can’t hold a full-time job. My symptoms are affecting me more than I thought they would when I signed my contract. The Inflammatory Bowel Syndrome, fatigue, and pain are kicking my ass. Right now I struggle to get through those eight hours, and by the time I get home I’m exhausted. I’ve been putting whatever energy I have left into Freaking Bookworm, and then collapsing into bed. I can absolutely not afford to go to bed at midnight and get up at six in the morning anymore. Today I came home, slathered myself in Icy Hot, popped a Tramadol, and lay in bed reading The Girl with the Dragon Tattoo for hours.
  • Sandy is organizing a team for a kidney walk in honor of her little guy, Konner. The name is Team Konner. If you can, please donate to Team Konner. If we are Facebook friends, you can contribute to my fundraising goal, but either way, the donations go to the Kidney Foundation for research. I thank you in advance.

That’s really it, for now. I do have news on the other thing, but basically it’s just a surgery date; we don’t know anything new in terms of how bad it is. I’m still waiting until I know for sure that all of my family members are up to date before I go talking about it on the internet. Thank you all for your understanding and support.

I hope you are all well. I tried to play catchup on Twitter today. I miss you all!

PS: Go check out my Freaking Book Club! We just finished Nana volume 1, and are now reading The Almost Moon by Alice Sebold. It’s free and it’s fun! (At least, I’m having fun!)