Posts Tagged Pain

Patience Heals

There’s been times on this blog where I’ve complained or wondered about the efficacy of acupuncture. I wanted to share the very positive experience with acupuncture I had this week.

When I first took a chance on acupuncture, I went to an eastern medicine school close to me. They were VERY affordable, at only $25 for acupuncture or herbal recommendations. The only problem was, it was never relaxing.

The students weren’t always sure of themselves and the teachers who answered their questions were teaching more than treating me like a human patient.

And then after they stuck me with needles, they would leave and I could overhear them chatting with fellow students in the hallway. It was not relaxing at all and, being new to acupuncture, I would have panic attacks when they left me in the room.

I gave this clinic about four chances and then pretty much swore off acupuncture. Then my friends started recommending an acquaintance of mine who had just started her own practice. They weren’t just recommending, they were raving.

So despite the hour drive and much higher cost, I decided to go see her. I bought a five session package to save money. So there I was, committing once again to something I’d tried and given up on. I’m so glad I did.

Off the bat, the experience was more caring and relaxing. She took time to go over every bit of my history, from medical to personal, in a very human (read: not just doctor to patient, mhmm, mhmm) kind of way. I found that leaving her sessions would at the very least put me in a better mood. I couldn’t say with certainty that it was helping my RA though.

And then, last week, something very miraculous happened. It had been about three weeks since my last session with her, and I’d been struggling with joint pain and all over aches and fatigue pretty consistently for about a month. I was bordering devastation because I had been feeling so good before and during my March trip to Spain.

Not to mention, I had consulted with a doctor in March who had given me the go-ahead to get off methotrexate since I was doing so well. My constant pain that seemed to getting worse and worse was making me really nervous about getting off MTX, so I haven’t done it yet.

So last week I go to her and tell her the positives – my digestion’s been great, my wrist is no longer shooting nerve pain up my hand – and the negatives – I’m stressed and freaked out, achy all over with pain points in my joints, and struggling with fatigue.

We chatted and she stuck me with needles and let me relax (yes, actually relax) for about thirty minutes. By the time she took the needles out  and I left her office, I felt like a new woman. I wasn’t in pain.

Over the last couple of days, I’ve had mild pain in specific joints – my left wrist, my right foot. But that is more par for the course and hasn’t stopped me from signing on for training for a sprint triathlon or running a 15k benefit run for Boston yesterday. The mysterious, horrible, unrelenting all over achiness has lifted.

I don’t know if it was actually being able to relax, or venting my problems, or the needles, but I’m so happy I could kiss her. 🙂 I settled for sending her this card:

I have now decided to buy 10 more acupuncture sessions with her. I hope each one is as magnificent.

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Living With RA

Living With RA

This article does a really good job of talking about rheumatoid arthritis from a patient’s perspective. This is a complex disease that effects much more than the joints and is different from osteoarthritis. I especially identified with the constant patient struggle of whether or not to put on a happy face or share your pains. It’s truly a constant struggle with no clear answer.

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Respecting The Journey

I was getting tips on how to prevent pain and stress in the wrists when doing yoga with RA, and my instructor said something so kind, so perfect, so wise, and so simple, I had to share.

“I respect your journey,” she said. “I know you may not see it that way now. You may see it as a pain in the ass and that is fine, but you are on a journey and I respect your path, strength and courage.”

Wow. Powerful words. In about ten seconds she had the reaction to the news of my RA that I realized I was seeking. Acknowledgment that it is a difficult card to have been dealt and it’s not my fault to have it. Permission to react any way I want. Support. Confidence that the circumstances I’m in now will ever evolve. And finally, encouragement of my power to deal with this.

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Woe is My Feet

No, these aren’t my feet. I wish they were. These feet look happy and pain free.

The last couple days were rough. Once again, my feet were hurting and I was consumed by thoughts of “oh my God, the drugs aren’t working” and “it’s because I’m down to only four methotrexate per week (and Enbrel).” Or, maybe it was just the normal ebbs and flows of life with RA. But of course my mind doesn’t like that thought either. That thought means it might be like this forever.

So with my feet hurting, two days ago I thought wisely that I should not wear flipflops, which let my feet swell, but aren’t supportive for the painful pad of the foot. Of course heels were out of the question and tennis shoes would just throw my outfit too far off (I’ll sacrifice a little bit of style, but I just can’t go that far). I opted instead for my expensive, less-than-flattering, mary-jane-style shoes with nearly-orthopedic inserts, lots of support, and an adjustable velcro strap to counter swelling.

My feet walked me to work relatively happy. By lunchtime, they were so swollen, no amount of loosening that little velcro strap was going to help. I spent the next few hours barefoot (probably didn’t thrill my coworkers). I forced my feet into the shoes and found myself a ride home – no way was I gonna walk if I could help it.

I ended my night with my aching, painful, and now blistered feet in a cold foot bath. It helped a little.

Cue the next day. Guess what, I woke up with hurting feet. They were back to that point where rising up on my toes, even a little, is pretty excruciating. Flipflops were out, my expensive RAD shoes were out, tennis shoes were…out (sorry! I’m just not ready to bring tennis shoes into my work outfits yet!). I felt pretty good about another option: boots with no heel and inserts that would give my feet padding and allow them to swell. Yes, the weather was unseasonably hot for June, but I could sport boots with a dress and make the look work. The great style/pain compromise settled, I happily set out on my short walk to work.

Immediate pain, which of course pained me in another way: it was a painful reminder of how badly my feet hurt in these shoes in my pre-diagnosis days. Only a few hours later, I could feel my feet swell to the edges of the boots. That was another rest my feet kinda night.

And then there’s today. I wake up expecting pain, but I feel fine. Overjoyed, I lace up my tennies (to workout, not to go to work!) and go for a run. It’s a little shaky, but I’m feeling so much better, it’s powerful. My feet are feeling good, so I opt for my greek sandals with plenty of padding on the sole. Mostly pain free all day.

Don’t get me wrong, I’m not complaining since today is a great day for my feet, but the pain rollercoaster of RA is physically and mentally exhausting. There’s just no predicting when a flare will hit or how bad it will be. And there’s no science to why it gets better, at least no science that I’ve figured out.

As my rheumy says, you’ll drive yourself crazy wondering what causes what. I guess it’s best to just take care of myself as well as I can – plenty of sleep, minimize stress, keep at my high fruit, veggie and omega-3, no dairy and gluten diet, and appreciate the good days. At least, that’s what I’m doing today.

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Double Whammy

Along with a mild flare and a new fun symptom (more on that in a minute), I got a call from the nurse saying that my blood tests flagged my liver function panels as high. For me this means dropping down to four doses of methotrexate per week instead of six and following up with another blood test in a month. This scares me, and is especially bad news to get on a day when your symptoms feel worse than they have in awhile. I don’t want to mess with my meds if their helping. Will my symptoms flare? Will it slow remission progress? So many questions.

Also, there’s this sense of I coulda done more to help my liver while it’s working so hard to process these crazy chemo drugs. I haven’t 100 percent abstained from alcohol (my rheumy said five drinks per week was fine) for example. For those of you on mtx, did you cut alcohol completely? Anything else you’re doing to help your liver?

And then there’s this weird feeling I’ve had all day as if the blood in my arms is burning. Like my arms are on fire from the inside out, especially by my elbows. Has anyone experienced anything like this? Is it a vitamin deficiency, med side effect or RA side effect? Or maybe I’m going crazy. I’ll be asking my rheumy tomorrow, so I’ll let you know what he says.

Despite the burning and flare symptoms, I made myself lift some weights and do some yoga. The distraction was great at least, but now it’s back to burning.

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Finally, A Visit To The Doctor

I’m not exactly sure what my final straw was. My right foot – my “sports injury” – had flared up again. I’d spent an extremely frustrating ski weekend in extreme pain, hobbling up and down stairs, my feet so stiff they wouldn’t walk properly. I even told my family, “I feel like I have arthritis. Why am I such a gimp right now?” The response of course was, “You don’t have arthritis. You’re too young to have arthritis.”

So I popped some Advil, stuffed my angry feet into ski boots and carried on. But after that weekend I finally made the call, I booked an appointment with an podiatrist, sure she would find a stress fracture.

She remarked at my swollen feet and asked me which one hurt. “The right one,” I said. “Well, actually both.” I knew it was odd, but I explained to her my theory of how I must run funny and would hurt one foot and then over compensate with the other, causing both to be swollen and painful.

So the doctor took an X-Ray of my right foot. I sighed in relief as I waited for the results. Maybe she would tell me to stop working out and I’d be in a boot for a month, but at least I would finally be healed. Then I could get on with my life and stop dealing with this stupid pain.

Disappointed is the word I would have to use to describe my emotions when my doctor told me, “Good news! You don’t have a stress fracture!”

I was really hoping for an injury. One I could stick a cast on and heal and get better.

My disappointment turned into confusion when she proceeded to show me the X-Ray of my stress fracture-free foot. An X-Ray that showed that bone in my little toe had eroded. She explained, as lightheartedly as possible, that this could be a sign of lupus or Rheumatoid Arthritis and that I should get blood work done and make a follow-up appointment with a rheumatologist.

Excuse me? Did she not hear me? I was just there for a sports injury. Something I did running. Was this really necessary?

But more than denial, I honestly have to say I was scared. I was scared because deep down I knew that something wasn’t right, I just wasn’t sure what was wrong.

I went to a work networking event that night and told my partner and friend about the trip to the doctor. I heard my voice shake a little as I told him what they were running lab tests for. That’s when I understood how afraid I was. That’s when it felt real. My eyes welled up, and he gave me a hug, you’ll be fine. I nodded, while internally making a list of all the things I would have to Google when I got home.

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The Wonderful World of Self Diagnosis

Add Seasonal Affective Disorder to my list of self-diagnosed, but totally  – in my mind, at least – manageable issues (carpal tunnel syndrome, sports injuries, poor footwear choices, non-orthopedic office chairs).

Starting in mid-December, post half-marathon, I suddenly found myself in a state of sadness and fatigue. It was hard to drag myself out of bed. I couldn’t sleep at night – not because of painful wrists, just an undefined worry and discomfort. I got overwhelmed and tired in social situations easily. I was prone to bursting into tears (and I’m not much of a crier). My stomach had been thrown for a loop too. I lost my appetite and, with it, weight. Food didn’t seem to agree with me anymore, but I didn’t even want it (for a total foodie, this was just crazy!).

The only time I seemed to feel normal was after a couple cocktails, but soon that didn’t help either. Better than a cocktail was my bed.

I told myself I was just in a “funk” and maybe had a case of the winter blues. At any rate, I wasn’t myself and I wasn’t much fun to be around. I felt like my life had just crashed, and was crushing me under the weight of the rubble.

A pretty low point was the night I threw a party, but couldn’t seem to even lift my body up enough to sit. I finally guiltily snuck away and spent the night fast asleep in my friend’s bed, exhausted and anti-social.

In hindsight I think my body was doing everything in it’s power to tell me that things were not OK, to get me to finally listen. I’m curious how many people feel this flu-like depressive exhaustion with their RA. It’s something you don’t really think of as being related, but it is a powerful, powerful, destructive thing. It really did a number on my self-esteem to feel so low (energy and emotion wise), something I am still trying to rebuild two months later.

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My Half Marathon and The Convenient “Sports Injury” Excuse

After finishing the Vegas Rock & Roll half marathon.

This post could also be titled, “When Self Delusion Makes You a Dumbass,” because, honestly, why had I not gone to the doctor?

But, there I was, training for a half marathon, my feet occasionally swelling up in pain. Being confused because my “sports injury” would magically switch sides.

Here’s the thing, in November, training for my half marathon, I felt powerful. I felt strong. I was running, doing boot camps, doing yoga, trying acro yoga, writing a book and making progress at work. I was a 28-year-old superwoman, elated that I had hit my stride.

The first weekend in December was the weekend of my half, and I rocked it. I made a decent time and felt great doing it. Afterwards, trudging back to the hotel, my swollen, sore feet were screaming. The half was a sort of turning point for me because I couldn’t just ignore the pain that seemed to flare up anymore. On bad days I started complaining to people who would listen. The general consensus was a torn ligament or a stress fracture. Some weeks it was fine, other times people would ask me why I was limping.

Still, STILL, I didn’t get it checked out. I barely even stopped working out even though I figured maybe a little rest would just heal it.

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Ignorance is Bliss

St. Petersburg, Russia

It’s amazing the pain you can tolerate when you think you’re fine. Once my wrists felt better, I simply ignored them. Occasionally they would feel sore, but it wasn’t too bad,  it wasn’t waking me up at night.

Needless to say, I didn’t remain pain free for long. I began feeling pain in my feet. The bottom of my feet would just be sore. I blamed this on bad shoes (I’m cheap AND I like heals, a deadly combo!) and working out. It wasn’t so bad anyway. Plus, I was planning a mega-vacation to Europe, so I was blissfully distracted.Looking back now, I’d say I had a major flare up during my first week in Europe. At the time, I thought I was walking too much and had brought the wrong shoes. Looking back, I can feel more empathetic and forgiving toward myself about how painful it was to walk around. At the time, I bought gel inserts and foot cream and told myself to “suck it up.”

Istanbul, Turkey

I spent a week walking around with painful, swollen feet. The days we walked a lot were bad. I had to take breaks, which was so unlike me that I would beat myself up over it. Every chair or bench I saw, I’d take a break (the museums in Russia are huge-I thought I’d never make it through the Hermitage!). The days we were off our feet, I felt much better. Luckily, I was distracted by Russia, with all its charm and beauty. And, mysteriously, by the second day in Greece, my feet were much better. I felt normal (of course, I was rapidly developing a new pain threshold and standard of normal).I got back from Turkey rejuvenated, energetic and ready to start training for a half marathon.

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Hindsight is a Bitch

Hi all, especially those in the RAD new community I’ve found myself a part of. I’m a month into life with RAD and I’ve decided to start a blog about my experiences in case any of you may be able to benefit from hearing about them. I think it’s important to start at the beginning. I’m talking pre-diagnosis. I’m talking the things you look back on and think, wow, I should have gone to the doctor. I should have known.

Oh well, hindsight, as they say, is a bitch 20-20. So, with the benefit of what I know now, I can tell you that my symptoms emerged in my wrists, at age 27, more than a year ago. It started harmlessly enough, my right wrist became painful to move. At the time, I was doing a lot of computer work – graphic design, typing, you name it – so I diagnosed the problem as carpal tunnel syndrome from using my mouse too much. It flared while working on my computer, justifying my hypothesis. I felt it during yoga, especially downward dog.

No, that's not me (though I wish it was!), it's Gretchen Bleiler.

Then my left wrist hurt. Symmetrically. Despite that, I thought that the left wrist was a snowboard injury from a hard fall. So I bought a wrist brace and wore it snowboarding (it didn’t seem to help).

Then it became Painful. Painful with a capital P. Wake me up at night painful. Losing sleep painful. Creeping from my wrist to my finger joints painful. But the pain would be worse at night and in the mornings and fade during the day, so it was manageable. I could still work, I could still workout. It was annoying, but it wasn’t life threatening. So I complained to my mom, and saw an acupressure practitioner, and thought maybe I was going crazy.

Then a couple of months later, it just got better. My job had changed a bit and I was doing less design work, so I thought that was proof that this whole ridiculous wrist pain was just some computer-overuse issue.

Looking back now, maybe going to the doctor at this stage wouldn’t have done much good, but who knows? I’ve read a lot of your (the RA community) stories about mis-diagnosis, and perhaps that’s what would have happened. I think it’s a blessing considering the amount of pain I was in during that flare, but I don’t have any permanent damage in my wrists.

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