Seems like we’re always looking for better ways to communicate with our healthcare professionals. I ran across the following outstanding post about describing pain to your doctor. Thanks, Dr. Roberts!
We’ve all had those moments. Those transcendental moments between sleeping and waking in the morning. Those moments where we somehow slip seamlessly from the vivid reality of our dreams to the dozing slumber of our bed.
Lying there, still somnolent, I used to try to orient myself to the day. Was it a weekend? Could I roll back into the arms of slumber and ignore the clock? Was it a weekday with a calendar filled with deadlines where I had to leap up and fuel my adrenaline with caffeine? Was my husband still sleeping beside me or had he already gotten up or, perhaps, was traveling and hadn’t been in bed at all?
I no longer have those somewhat delicious waking thoughts in the morning. Thanks to RA, my first thought in the morning is now, “Where does it hurt?”. I’ve traveled well beyond the boundary of, “Does it hurt?” …
Read the rest of the post on RheumatoidArthritis.net: https://rheumatoidarthritis.net/living/where-does-it-hurt/
I hate more drugs. Sometimes it seems like all I do is manage my and my husband’s respective drug therapies and it seems like I’m always swallowing a pill. But sometimes, I guess, more is better. We’ll see.
I saw my rheumatologist last week. It was the first appointment after the first two loading doses of Remicade. Per Remicade’s website, the recommended dosage for RA is 3 mg/kg of body weight repeated every eight weeks after the loading doses (loading dosage is one infusion at weeks 0, 2, and 6). Because I’ve “failed” at previous treatments, my rheumatologist started me at twice the normal dose (6 mg/kg) with anticipated infusions more often (every six weeks rather than every eight).
In some ways, the rheumatologist appointment was good because I was in terrible shape. Don’t you just hate it when your RA conveniently takes the day off when it’s time to see the doctor? It’s kind of like when your car quits rattling when you see the mechanic. There’s not much to talk about. But this time when I saw the doctor, my joints were swollen, I was in pain, I was fatigued, my hip bursitis was back, and I’d put on 15 pounds thanks to the interim prednisone supplement. The first two loading doses of Remicade clearly hadn’t had much, if any, effect. While I understand and accept that it can take several weeks for biologic treatments to start working, I have to admit disappointment that with each passing day I seemed to be getting worse. (Note that I’m also on 20 mg of Arava/leflunomide in addition to the prednisone.)
To me, changes needed to be made and my rheumatologist obviously agreed because she was the one who spoke first. In the short term, she’s reduced my prednisone to 5 mg/day to help slow the weight gain, but she also did a steroid injection for my hip bursitis to help calm that down, especially since we’re cutting back on the daily dosage. That did help, almost immediately.
In the longer term, she increased the Remicade infusion to 7 mg/kg. Other than a bit of a headache during the infusion, I haven’t noticed any negative side effects (or any positive ones for that matter), so I don’t know why I get nervous about upping the dosage. I trust my doctor and the Remicade site indicates that dosing can be as high as 10 mg/kg every four weeks. I just keep thinking that with all these drugs that I take, that there is some tipping point where my body will rebel at all the chemicals I put into it.
In addition to the changes to Remicade and prednisone changes, my rheumatologist has prescribed Tramadol for pain. She prescribed it early on in our relationship but I quit taking it because I took it at night and felt “hung over” the next morning. This time it seems to be controlling the pain but without so much of the after effects. Of course, I’m consulting now rather than having to show up at a corporate office every morning, so even if there is some carry over, there isn’t as much impact to my daily life.
So more Remicade, more pain medication, less prednisone. Two steps forward, one step back. (Or is it the other way around?)
I hope your day is filled with more of whatever makes you happy. Thanks for checking in.
It actually started Sunday. I thought I’d overdone on Saturday, shopping, cooking, and cleaning to get ready for dinner guests Saturday night, so Sunday I had this vague, all-over ache. You know, kind of like a headache that hides behind the eyes that you can sort of feel like it’s there, but not exactly, but occasionally it comes out and stabs you when you least expect it.
I felt a bit better on Monday so, again, I decided I’d just overdone over the weekend.
However, this morning it was much, much worse. It hurt just to turn over in bed. When I had to get out of bed, it hurt to stand and it hurt even more to try to walk. Even my eyelids are swollen and sore. When I got in the shower, it hurt to raise my arms to wash my hair. When I got out of the shower, it hurt to put on body lotion. It hurt to get dressed and to get into the car. It hurt my hands, arms, and shoulders to drive to work. And it hurts to sit in my ever-so-ergonomic office chair.
Unfortunately, it’s one of those days where it’s not practical to stay at home. I have deadlines at the office and my cleaning lady will be at the house most of the middle of the day. It’s hard to rest with a vacuum roaring in the hallway. We also have theater tickets this evening and it’s now too late to exchange them.
I’m going to try Tylenol today at the office and see if I can get the pain level down to a bearable level. If things aren’t better by tomorrow, I’ll start a prednisone taper.
Hopefully this will get me through until I see my rheumatologist in three weeks. If not, I may call and see if I can bump up the appointment a bit. I can’t make it too early. I see my shoulder surgeon next week and I want to see what he says about needing/scheduling surgery so I can talk to my rheumatologist about when I need to be off the drugs.
I sincerely hope you’re having a good day (because I’m sure not and someone needs to!). Thanks for checking in.
When I know one of the few people who have actually read my book Wake Up With Fleas, I am always interested in their favorite part or their favorite character and I am always surprised by the answer. As the author, I developed an affection for some of the characters and thought that a few of the plot twists were especially clever, and it’s interesting that most of my readers have different takes.
The same is true with this blog. Occasionally I will post something that I don’t think is worth much (like my pity party about missing my high heels) and I’m surprised at the number of “hits” or comments I get.
It’s fascinating to me that people who have the same experience, e.g., read the same book or see the same movie, will have very different reactions to it or perceptions of it.
In my line of work, communications, perception is reality. A person or company’s reputation becomes the accepted truth, regardless of whether or not there is a real basis for that perception.
So if people react differently to the SAME experience, how different are their reactions to DIFFERENT experiences? I would surmise that there is a great variance, not only because the experience is different, but also because the perceptions of the people are different.
I think that the pain experience is a prime example of this.
I have had at least one surgery a year for the last several years. Last year it was shoulder replacement, the year before it was hip replacement, this year, it’s rotator cuff surgery (at least that’s all I have planned for the moment!). So I am no stranger to pain. There is a certain amount of pain going on before you have surgery to correct it, then there is the surgical pain, and finally the pain that gradually fades as you recover. For me, something has to hurt pretty badly for me to complain about it. But is this because I have a high tolerance for pain? Or is it because of my exposure to such a large range of pain over several years, my perception of minor aches and pains is different?
Pain is a consistent topic on most RA blogs because, let’s face it, having RA hurts. But the manner in which people describe their pain varies greatly. It seems, to me at least, that people who have been dealing with the disease for a longer period of time are more factual, while others tend to be more descriptive. The “I had to take XYZ pain pill for the pain in my joints,” as opposed to, “It hurt so bad that I …”.
Is there a real difference in the pain or is it the perception of the pain? The first time you hit a certain pain threshold, it can hurt terribly and be scary. The second, or third, or tenth time you hit that threshold, it no longer holds the same terror because you’ve come to know what to expect. It still hurts as bad, but your perception of the pain has been altered. Surgery pain doesn’t scare me because I’ve come to understand that the worst I’m going to feel is right after surgery and after that I’ll start feeling better. (Or at least that’s the plan.)
So how do you perceive yourself and your disease? If you perceive yourself as disabled, are you? One only needs to look at Stephen Hawking and wonder at the definition of disabled. Step back and take a look at your perceptions — not only of your pain and your disease, but other perceptions such as toward the people around you. Your situation may not be able to be altered, but your perception can certainly be changed.
Hoping you have a pain-free day. Thanks for checking in.
Okay, first for those people who are thinking about or actually starting Humira, let me say that my experience with the shot was a real non event. There was no pain at all for me, but I’ll go into more of that in a minute. The worst part is that I scared myself reading all the blogs and watching the videos of the people who do apparently really suffer with it.
The blogs were helpful in that it gave me several tips on how to lessen any pain. I did take the Humira pen out of the refrigerator about 45 minutes before I gave myself the shot so it could warm up. I also put an ice pack on my stomach for that 45 minutes (I was propped up in bed watching television). The third thing I did (thank you, nephew who gave me this tip) was about 10 minutes before I did the shot, I sprayed the injection site with a lidocaine spray which served to numb the skin. I made really, really sure the alcohol dried on my skin after I swabbed it before I did the injection. And finally, instead of pinching the skin up for the injection, I sort of cupped my hand around it which just gently lifted it away from the muscle layer. (You skinny people may not be able to do this, but some of us are more amply blessed.)
My husband was my official cheerleader and his job was to also be timekeeper. He gave me a 3-2-1 countdown and then when I clicked the pen on 1, he called time so I’d know when 10 seconds were up. As he called out the seconds, I kept waiting for it to start hurting and it never did.
My nephew told me when he used to get his twice weekly allergy shots the nurse would spray the injection site with something that numbed it so it wouldn’t hurt. I did an online search for skin numbing products and found several. I went to my specialty pharmacist and they had a lidocaine spray (called Hurricaine) and a benzocaine cream (called LMS). The pharmacist recommended the spray. I will tell you, it cost about $50, so you will understand how freaked all the bad blogs got me. But for those of you who do have pain with the shot, I would suggest you try one of these preparations to see if they help.
I also want to take a minute to thank my coworker who I learned yesterday had been doing the shots + methotrexate for over five years. She was kind enough to tell me that she didn’t have any problems, so that helped me calm my fears somewhat. Hopefully I’m paying that favor forward by sending this message on to those searching for information.
I didn’t notice any immediate side effects from the shot and this morning you couldn’t tell there had been an injection at the site – no redness, swelling rash, nothing.
So this is great news. I’m no longer afraid of the shots. And if this drug is the miracle worker they say it is, maybe I’ll start getting better instead of worrying about how many joints I’m going to have to replace.
END OF DAY UPDATE: It’s now the end of the first day after I took the shot. I’ve noticed no side effects whatsoever. Previously on Methotrexate, I’d be really fatigued the day afterward, and I haven’t even had that issue. All of this is good news.
I’ll update the blog if I notice any improvement in symptoms or when I do the next shot, whichever comes first. Thanks for checking in.