When Physical Therapy Isn’t Therapeutic

It is safe to say that my physical therapy office is not going to be on my team.

I liked my original physical therapist (K) at my first visit.  She seemed helpful, interested in my well-being, ready to help me gain some strength and eliminate some of my pain.  I was pretty optimistic after that first visit, honestly. Which is maybe why I’m bummed now.

At second visit, I liked K a bit less.  She spent most of her time we were together doing paperwork while I was on the tens unit or on the recumbent elliptical (which is a good machine for people like me).  But we did a few strengthening exercises and she sent me home with homework (three of the exercises twice a day ten times each).

So, today, third visit, I am not having a good day, pain-wise.  I didn’t want to go.  Couldn’t find convenient parking.  Walk in and K says, “I can’t see you today, so A will see you.”  Fine.

But A doesn’t know anything about me.  First few minutes of session is her asking me questions I answered on first visit.  Ok, fine.  I can deal with that, I guess.  She puts me on a bike-type machine which was much less friendly to my joints.  Fine. I can deal, I guess.

But here’s where I start to get pissed.  She says “So K went over bio-mechanics with you last time, right?”  Me: “What do you mean?”  A: “Like the right way to stand, the best way to sleep, ways to get up.”  Me: “No.  But I would really like to know those things.”

Evidently K’s notes indicated we covered those things.  We didn’t.  I went to physical therapy partly for that information, and I am so upset that my care is being compromised because K was lazy and took the easy way out by writing that she had covered something she hadn’t.   Lucky for me, A did go over some of those things (unfortunately no new information).  A also add some abdominal exercises to my routine, which I am happy about.

But then at the end, I am confused again.  She recommended I do my exercises “Maybe every other day.”  K told me twice a day.  Which is it?

Physical therapy’s purpose is to help me, right?  But how is helping to get inconsistent care?  To get inconsistent information?  To get therapist’s who don’t actually give a shit about my outcomes?


I have three sessions left that my insurance will cover.  After that, I guess I need to consider whether I can afford to pay for my own physical therapy at a decent therapist.

Arg again!



I feel like I should warn you: I’m in a bad mood.

I really hate morning.  I was never a morning person, but now mornings are so awful, so painful, that I just absolutely dread them.  For whatever reason, the first two hours of the day, so many parts of my body hurt, parts that don’t hurt any other time, from head to toe I hurt.  Oh, I am always pretty sure it’ll dwindle within a couple of hours, when the prednisone, naproxen and Lyrica hit.  Til then I am miserable.

It’s hard to deal with mornings when you are in this much pain.

Add to that, no one in my house seems to get it.  I mean, how can they?  Until you have experienced this kind of pain on a consistent basis you can’t really imagine it.  So the uninitiated, the normal people, can try but the most they can come up with is a stubbed toe or maybe even the time they broke their arm.  After all, that kind of pain is bad, no one would quibble with that.  But I don’t think that’s a good comparison.  I am not saying my pain is worse than that, but that it is different.  Having a continual amount of high pain is different, is wearing on the mind and body, in a way that short-term pain just isn’t.  A big chunk of why this pain is so awful is the knowledge that it will be with me forever, that I may have breaks of days or weeks, but this pain is mine.

So no one in my house gets it, and that’s understandable.  And I try not to lash out.  I try hard not to tell everyone to leave me the hell alone until at least nine.  Most days I succeed.  But wow, it’s hard.

Today, it’s just a lot to deal with.  I hurt all over (in case you’re wondering my pain right now is probably around a 6-7 from head to toe), and I have a full day ahead of me, including physical therapy, and all of that just seems like way too much to handle. It feels like too much to expect of me to handle kid pick up, acupuncture, physical therapy, dishes, dinner.  It feels like too much to expect me to keep a positive attitude on top of all of that, to listen sympathetically as everyone else expresses their frustrations which seem so silly to me.  I know I am being unfair, and I don’t care.  I know everyone’s feelings are equally important, but today I just don’t want to do it.  I don’t want to be kind and supportive and understanding.  Instead, I want to take pain medication and hide.  I want someone to take care of me, to be kind and supportive and understanding of me.

But…that’s not the way it goes.  So, I need to pull myself together, ignore the pain until it becomes more tolerable, find some energy to go out and manage my day.  I need to find some damned spoons, because it’s just not going to work if I am out before 8 am.

Yeah, I hate mornings.  And pain.  And pain in the mornings.  But what can you do?  This is my life now, so I guess I have to make the best of it.

Please tell me I am not the only one who feels this way!

Picking a Number on the Pain Scale

I have been thinking a lot about measuring pain.  Yesterday I mentioned that I think people with chronic pain have a different scale than “normal” people.  Our baseline is set differently.  For example, to me a good day is when my pain is a 2-3.  I can not remember a day in the last year (maybe longer, when I think about it) when my pain was lower than a 2.  So for me 2=0.   I have gotten pretty good at analyzing my body, trying to figure out what hurts and how much, trying to figure out which disease is acting up.  You have to do that when you have multiple issues, so you know what’s working and what’s not.  So each day, I am choosing between my RA, fibro, and my DDD.  Almost everyday there is some issue with my back (DDD) and typically my RA and my fibro trade-off (which I feel is pretty considerate of them).

Today my pain was around a 6. Some days I have localized pain that is high and the rest of me is at the 2 baseline.  Frequently, it will be my back or my hands that hit a 7-8 while the rest of me is pretty ok.  Today I was a solid 6 from head to toe.  That kind of pain is rough for me because everything hurts.  I can’t use my hands, it hurts to walk, but it hurts to sit.  Etc, etc.  When I told my acupuncturist that I was 5-6 today and that it was pretty bad she asked, “That’s bad?” I hesitated a moment and I said, “yes when you have already taken a lot of medication and you are at 6.”  What I should have said is that when I say six, I mean that it is hard to function.  I have taken my normal meds plus Tramadol; I have stretched and tried to walk it out; I have done everything I can and I am still miserable.   And maybe it was the fact that so many different things hurt today that made the 6 seem so awful.  Who knows.  Either way she stepped up my treatment and I left feeling better.  Hopefully it lasts.

While I was sitting with all my needles, my acupuncturist talked to a new patient nearby (I go to a community acupuncture clinic so there are several people being treated in the same room).  The woman said her pain was a 2-3, and that it was really bad.  Linda asked the same question- “That’s bad?” and the woman explained that for her, having pain at a 2 meant that she had difficulty walking which was a big adjustment because she’s a runner.

All of this got me to thinking about pain levels, about how we measure pain, about how we compare ourselves to others based on where we are on that scale.  I started thinking about doctors, and how difficult it must be to interpret people’s answers to the pain scale.  If I tell my doctor I am at a 2, I will get happy remarks.  But there may be others who say they are at a 2 and the doctor needs to be concerned.  But how do they know who is who?

It all seems so crazy subjective to me.  It’s no wonder that getting diagnosed is difficult when you have chronic pain.  It’s almost a guessing game!  Maybe doctors should ask patients to create their own pain scales with their own personal descriptions to make it easier to understand each patient.  Mine would like something like this

0-1: obviously I am dead because this doesn’t happen

2-3: a pretty good. Some aches and pains, but nothing major

4-5:  I hurt.   I need pain meds.  I am limiting my activities considerably.

6-7:   I hurt a lot.  I need a steady stream of pain meds, heat, stretching, and I am probably still pretty miserable despite all of that

8-9: Extreme pain that is severely limiting activity; pain unresponsive to medication, heat, etc.

10: I have never ever said I was at a 10 despite years of pain and having 3 babies so if I ever say this, someone should get me to the ER quick because I am clearly dying.

What about you?  What’s your pain scale?

Limping Along

Shrink appointment this morning went fine.  No change in dosage.  We talked a bit about situational depression vs clinical depression.  He explained that they look for a couple of things to determine if someone is experiencing clinical depression.  The three main areas: do you have interest in things, do you show interest in socializing, do you have motivation to go out?  If the answer is no, then they look at timing.  He said a few days is no big deal; the cut off for them is two weeks.  Two weeks of not have interest and not wanting to go out because you’re sad or feel like it’s not worth it means that you may be clinically depressed and may be helped by medication.

He said for me it seems like I am just adjusting to my new reality and things are as they should be.  I suspected that would be the verdict, so it was no surprise.  And frankly I am glad not to be changing yet another medication.

He also asked if the pain was manageable.  And I said more or less, with medication.  He said that his view of manageable pain (and I think his understanding of the medical view of manageable pain) is that if you’re limping along then it’s manageable.  I found it interesting that he used the word limping.  So often, we with chronic pain, think of our old lives when we walked normally, but the truth is our new standards are different.  I was reading something earlier (I wish I could remember where!) that said people with chronic pain have a different scale.  A four pain level is our new zero.  I have found this to be true.  A good day is no longer a pain free one, but one that is tolerable without much pain medication.  So yeah, manageable pain is when we are limping along.

On another front, third dose of MTX is behind me.  This week I have now added the dreaded nausea to the fatigue.  Frankly, I feel pretty awful all around.  Tired, nauseous, achy.  Etc.  Really looking forward to the side effects of this med being behind me.  Or manageable!


A Bad Day

Yesterday I had a no good, very bad day.

When you have a chronic illness, you get used to a sort of baseline of pain.  It’s like you figure out what your “normal” state is.  This normal state is your typical level of swelling and fatigue; your typical level of joint pain and stiffness, of general body pain; your typical level of inability.  People without chronic illness may not understand this, or may only think they do, but those of us who have some wonderful disease, know what this means.

Yesterday wasn’t normal.  I think yesterday may have actually been my first really bad day since I began the many medications I am taking.  Oh, I have had some bad days, some slightly worse than normal days.   But I had not had a very bad day yet.

I would like to never have another, honestly.

If I list today all the things that made yesterday suck, I don’t think it would effectively capture it, mostly because it wasn’t just the things that happened, it was the accumulation of those things that were too much.  I could barely move; I was exhausted; my swelling was much worse than normal; my mystery abdominal pain returned; my pain was so bad I was nauseous.  Add in: everyone in the house was upset or tense, doubling my tension; I burnt myself and cut myself while helping cook dinner; I had a total sobbing breakdown at one point because it was all too much.  It really was all too much.

Is this what I have to look forward to: normal bad days broken up by the really horrible ones?  I really hope not.

I can hearing this piece of a song in a head.  I think it’s from (of all things) the old Rudolph cartoon, tho it may be another of those badly animated Christmas specials.  The characters are singing “You put one foot in front of the other.”  And that’s what I have to do, even if those feet are slow and swollen.  Put one in front of the other and hope for the best.  After all, they can’t all be very bad day days.


It’s the Little Things

It’s the little things, taken together, that add up to a whole different life.  Looking at my day there are so many little things that are different, so many little things that I have to do differently, because of my illnesses.  So many little ways I must be different.

When I wake up in the morning, the first thing I do, sometimes before I open my eyes, is move my fingers and toes.  I am checking to see how stiff and swollen they are.  After that, I take a few minutes, giving myself a mental pep-talk.

After I get up, I go into the kitchen to get myself breakfast right away.  I can’t take half of my meds until I eat, so hungry or not (usually not), I need to eat.  I have yet to find a breakfast food I consistently enjoy.  Mostly I resent breakfast.

At breakfast, I take 8 1/2 pills.

On Friday mornings, I add in the need to refill my pill container.  I can no longer trust myself to remember which meds I have taken each day, so I have a weekly pill holder that is divided into four slots each day.  So Friday morning,  I fill all the slots with the appropriate pills.  Today I realized my medication list wasn’t up-to-date so I updated it and reprinted the list.

After breakfast I chill.  I wait for my body to warm up.  That’s how I like to think of it, like a car that needs to be warmed up before it can go anywhere without alot of noise and resistance.  So I sit and warm up.  Then I take kids to school.  In my pajamas.  I realize this is bad.  I realize I should brush my hair and get dressed.  But I just can’t do it.

When I get home from that, I warm up some more.  I also pace my house as “exercise” so my back can get loosened up.  Somewhere between 9-10, I do my back stretches on the living room floor.

My day is typically split in parts: pacing house, resting, stretching.  Usually somewhere around lunch I find motivation for a shower.  It is generally an hour after my shower before I find additional motivation to dry my hair.  The last few weeks, drying my hair is an adventure: I am waiting to see if my hair starts to fall out.  So far, no more than usual.

I pick up oldest from school at 2:30.  This is also an adventure.  Driving is difficult, painful.  Nerve-wracking.  Somehow it seems that there are too many things happening.  I get over-stimulated.  I forget which gear I should be in sometimes.  I have to really focus on what I am doing.  I find myself excessively speeding without realizing it.

I generally don’t do the dishes- my one consistent household chore- until around four.  Most days I do okay with this, and for sure my hands love the hot water, but there are days that I can’t seem to do a good job.  Those days Bill and Riley point out the still-dirty dishes.  Those days I feel deeply ashamed that I am no longer capable of that simple task.

Some days I make dinner.  Some days I don’t mess up dinner.  Those are the good days.

At dinner, I take another six pills.  Except Wednesday.  Wednesday I take six at dinner and four more a couple hours later.

Most days, somewhere among my little bit of driving or my rare errand, I have to take pain medication.  The prescription kind.  No more tylenol for me!  No sir.  I was really bothered by this at first and put it off as long as possible, until the pain was debilitating.  Then I realized that was dumb.  If I can take medication when the pain first starts, then I can head it off.  So now, I am a more frequent user of Tramadol.  Life is easier that way.

Some other little things that are different about my days these days:

I spend a lot of time thinking about my health, my body, my symptoms, my medications, etc. Every new pain must be analyzed: is it fibro? RA? A new things altogether?

I move my toes and fingers deliberately, checking for new problems, checking to make sure they still move

I am constantly aware of how much pain I am in, of what my day needs to look like based on that pain

I try to wear a bra as rarely as possible, because they are just too uncomfortable

I wear long sleeves, and sometimes a sweater too, almost always even though it is around 70 in my house, and sometimes outside as well.  I am just cold all the time.

I am foggy in the brain.  Forgetful. I use the wrong words for things.  I can’t remember what I am doing, where I put things five seconds earlier.  Unfortunately, I am not foggy about being foggy.  I always know that I am foggy, that I am forgetful.  That my brain no longer operates the way it should.


It is all the little things that add up together to exhaust me, to make me sad and mad and frustrated.  These things will become routine soon; these things will no longer seem extraordinary to me soon, but will be part of the new normal.  Until then, it is all the little things that constantly remind me of the life I lost, and the new one I must get used to, so I can move on. Accept.  Thrive.  Until then, I will take it one little thing at a time.



Really Easy is Really Hard

Let me just say this first: there was a time, years back, when I was in good shape.  I exercised regularly.  I was never skinny because I’m not built that way, but I was in pretty good shape physically.  But the key point here is I could do med-hard exercise without much issue.  The past few years I have gained a lot of weight, for one reason or another.  I am no longer in good shape.  I know it.  But up until the last year, I could still walk a mile (for example) without a problem. I could still move my out of shape body.

But now, here we are.  It’s all difficult.  Walking.  Exercising.  All of it.  Part of that is being over-weight, but a big chunk (more than I knew actually) is the fibro/RA taking their toll on me.

All of that said, I know I have to exercise.  I need to lose some weight, but more than that I have to keep moving so I can try to keep the fibro and the RA under control.  Mostly I have just been walking the dog with Bill, but I have also started adding in some arthritis exercise dvd’s, some light yoga, lots of stretching.  I also decided to start taking a “gentle” water exercise class once a week.  It is not an arthritis foundation approved class, but it’s in the same vein, I think.

Anyway, yesterday was my first class.  I got there early, and checked in at the front desk.  I wasn’t sure if I needed to sign in or anything, and I had missed the first class, so I asked if there was anything I needed to do.  When I told her what class I was taking, she laughed and said “Oh, that class is easy.  Really easy.  You can just go in.”

Really easy.

After braving the locker room (how I hate them), I went to the pool, where everyone was at least 30 years older than me.  Including the instructor.  Most of the ladies were also overweight like me.  They were all incredibly nice to me, including the instructor who gave me lots of direction.

But here’s the thing: it wasn’t really easy.  Oh, it should have been.  With my past exercise knowledge, I know it really is an “easy” class.  Besides being in the water, which helps, all of the moves are pretty simple, and there is nothing overly demanding involved.

And yet, I wanted to stop after about eight minutes (yes, I looked at the clock).  It was hard.  Very hard.  Not only that, but it was exhausting.  I came home and wanted to go straight to bed.

So, I have to ask: is this my life?  That taking the easy class with the 70 year old instructor is going to kick my ass?  That my 35 year old body is actually less able to do things than someone’s twice my age?   Is this what I have to look forward to?

Does it get better?

I guess we’ll see (there’s that we’ll see again).  Maybe with all the meds, and with physical therapy, and with acupuncture, and with regular walking, and with my once a week water class, and with all the other things I am doing, maybe with all of those things my body will be less broken.  Will be more functional.



We’ll See

Today I accomplished a little.  It was nice to feel like I was contributing, even if it was something as silly as filing a whole lot of paperwork that’s been building up in our office.   So, yay for me!  Hope I can finish this week.

In other updates: today we (me and the rheumy) decided to double my Lyrica dosage.  So…the first few days I am supposed to just double my night time dose and then add in the morning double dose later this week.  Hoping to see a difference with the changed dose. I actually really like the way the Lyrica helped with the fibro but then the effectiveness seemed to dull a bit after the first week.  No side effects that I have noticed during the first month of it, so we just need it to work a little more. So we’ll see.

Also, bought really really expensive sandals this weekend that should be amazing for my feet (so says the guy at shoes store).  We’ll see on that, too.

I guess it’s a lot of we’ll see this week.  Because really, that’s what life is with chronic illness, isn’t it?  We’ll see.  No definite plans or commitments.  We’ll see how it goes, day to day.

(Have I mentioned, prior to diagnosis I was a planner! But…trying to adjust.  We’ll see!)



The Struggle to Find Value

First dose of MTX just made me really, really tired.  Like in my bones exhausted.  I want to go to bed for days and days.  Of course, my back pain gets worse if I am in bed too long, so I can’t.

But all in all, I guess the first dose went well.  Looking forward to getting to the point when it is actually doing something.  But we’ve got some weeks left before that happens.

Mostly I am both tired and absolutely pissed off.  Maybe some depressed in there, too.

I am bored being home all day alone.  I can’t go many places without pain or fatigue being too much.  I can’t knit.  I can’t type for long.  I can’t sit for long.  I have being reading a lot, which I enjoy, but there is only so much of that you can do.  I want to be able to go back to work.  I want to be useful again.


I have been doing reading on blogs and books, etc about chronic pain and how you will find the value in yourself but it is hard to get there.  How do you find your value in society, in your community, when you can do so little?  When you can no longer contribute in the ways you could in the past?  When your offers to contribute what little you have are rejected?

I just don’t know.  My best friend and I were talking the other day about this, and she said, it’s hard to think that someone would want to be with you because you know that you don’t want to be with you.  You are sick of yourself.  Why would anyone else choose to stay?  I get that.  I am sick of my body, of the pain and the limitations.  I am sick of the fatigue that is so exhausting in itself.  Who knew that being fatigued was in itself exhausting? I am sick of worrying.  I am sick of wondering if I will ever go back to work, if I will ever be able to drive much, if I will ever be able to do the dishes without wanting a goddamn nap.  I am sick of being sick.  I am sick of waiting for the people around me to walk away, to reject me because I can no longer do the things I once could.  I am so lucky to have a partner who is sticking around.  Who is supporting me in every way, but it is so hard to believe that will last when you know that you are broken, will always be broken.

How can I find value in all of that?  In myself?  I know who I was before: smart and capable, the go to person.  The one who could get things done.  The reliable, independent one.  I am no longer most of those things.  And the parts that are left- well what can I do with them?  When you define yourself by the things you can do at work and at home, when you define yourself by those roles, who do you become when your body says- no.  You can no longer do those things.  What do you do? What do you do when no one seems to want the little bit you can offer?

So yeah.  I am tired.  And pissed off.  Depressed.  Wishing I could go to bed for days and days. But they say, this is normal.  This feeling useless and angry.  This is part of the process toward acceptance.  I am grieving for the person I used to be.  I know it is normal to feel this way, but damn do I wish I could see the light at the end of the tunnel.  I wish I knew what will happen at the other end of this.  I wish I could be sure that even though my body is broken, that my true self will weather okay.