Smart Mouth

My appointment with the new Rheumatologist, Dr. Shahari, was this morning.  All day yesterday I worried about how it would go today.  I really hoped that I would be able to come home today and report that all went well, and then talk about something else.  I started this blog to talk about RA, but I do get sick of talking about it, dealing with it, thinking about it.  I wanted to be able to say today went great and then talk about some normal stuff.  Part of that is a desperate attempt to cling to some resemblance of normalcy; resistance to accept what seems like the unacceptable, that I may never understand why I am sick, or how to get better.  For as much as I have tried to protect myself, to not set myself up to be disappointed when/if the Rituximab doesn’t work, a part of me wishes and hopes that this is the drug that will work for me.  That remission is obtainable, that while RA won’t go away, it will stop affecting every single thing that I do or dream of doing.

But, that is not what happened.  I feel more confused at this point than I have at any other point in the last 12 years that I have had RA.  So today went like this:

I arrive at the VA and check in.  My blood pressure is high and my pulse is racing.  Kathy, the nurse, asks if I am feeling all right?  I say that I feel good, not great, but less shaky than in previous days.  My neck/back still hurts and several joints are radiating pain, but that I feel mostly nervous.  I admit to her that it kind of feels like I am going on a blind date, that meeting Dr. Shahari is probably why my pulse is racing.  She laughs and tells me not to worry, so I quiz her, what is he like and do you like him?  I’m asking things faster than she can answer.  A doctor walks by and I want to stare at him and hide from him at the same time.  She laughs at me and says that wasn’t him, calm down and everything will be all right, and then leaves me alone in a room.  A few minutes later, she comes in and tells me he is ready.  Nervous as hell, I follow her to the next room and there he is.  He is young, in his thirties, and that surprises me.  You don’t see a lot of young doctors at the VA.  We sit down and he tells me he has reviewed my chart.  He tells me he is not new to the VA, he did a residency here, so he is not completely in the dark, but still learning the computer systems.  He asks me about Rituximab, how the infusion went, how I am feeling now, and to explain how I came to this point (basically why Rituximab).  I tell him even when the swelling is minimal there is still pain, especially with over-exertion, and that I don’t feel remarkably different since the infusions.  I briefly explain my history and tell him that Rituximab was the last resort after everything else failed.  He looks at my hands, squeezes the joints and bends my wrists.  He holds my elbow while he bends my arm, and then rotates my arm up and down moving my shoulder.  He squeezes my knees.  He slips off my moccasins and squeezes my ankles and toes.  He listens to my chest and then my back.  He pushes on several points around the base of my neck, my shoulders and my back and asks if it hurts, it does.  All of this is uncomfortable; but some of it hurts a lot. He sits down. He says, today your RA is not very active, meaning he sees no joints with active inflammation at this very moment.  The Rituximab could already be working, but Prednisone is a power anti-inflammatory so it could also be attributed to that.  There is something going on in addition to RA.  There are things that are happening, and pain I am feeling, that is not related to RA.  We discuss my past, when I fail on a medicine what does that mean, what the pain feels like, how the pain is different from when there is active swelling and when there is not swelling.  He tells me he thinks I have Fibromyalgia or something like it.    Something like it?  He says, it could be Chronic Pain Syndrome or Fibromyalgia, at this point he thinks Fibro but he is not ready to make a definitive diagnosis.  It doesn’t matter that much, the treatments and medicines are relatively the same.  I have nerve sensitivity that is not caused by RA.  Instant panic sets in.  So, I don’t have RA?  For years this has been happening; active disease with no progression, pain with no swelling, deformity but no damage, and it hasn’t ever made sense to me. Countless hours researching autoimmune disorders, countless discussions with BB, I have mentioned in this blog that I have asked why I am so different, am I a freak?  Two months ago I did online Fibromyalgia screen and it came back 90% positive.  But, when I would bring this up to the old rheumy she would never give me a clear answer and shift my focus back to current treatment.  No, he says, he is not saying that I don’t have RA.  I have RA, no doubt.  I have early deformity in my hands that is immediately apparent. Swan necking and ulnar deviation in all fingers.  Typical RA deformities, but I don’t seem to have a lot of permanent joint damage.  Why is that?  He doesn’t know.  What he does know is that there are three things going on.

1. RA
2. Fibromyalgia/Chronic Pain Syndrome/Nerve sensitivity
3. Pain from damage done to joints/tendons that is permanent and irreversible

He says he needs to be honest with me.  I need to understand that he has no magic pills, that it is not a matter of finding the right thing at this point.  The Rituximab seems to be working, that he anticipates seeing more improvement in weeks to come, but that I must remember that there are no long-term studies on Rituximab.  They don’t know how it works, why it works, or for how long it will work.  It is an experimental treatment.  The only goal we should have is to take the pain to a tolerable level.  That it is not possible to eliminate it.  Because the pain that I am feeling today is not entirely from RA; some pain or discomfort will always exist in joints/tendons that have been permanently damaged.  The pain I have been feeling that feels stabbing or jerky, the way I describe the unrelenting intense fatigue, the acid reflux I thought was from my ulcer, the intermittent chest pain/palpitations, the pain in my neck and back, the sensitivity to light/sound/smells, the scattered feeling/memory/concentration brain fog, the difficulty sleeping can all be attributed to Fibromyalgia.  Some of those things I have been feeling as far back as years, but all started to increase in intensity about a year ago when I failed on Remicade infusions.  He asks me why I think I am taking Tramadol and Gabapentin.  I tell him that about eight months ago the fatigue and pain became so intense, and that I was having so much trouble sleeping, that I asked for pain meds.  So, she gave me some.  (Or so I thought, what she really gave me was drugs that treat fibro).  And, because I still feel like I am being weak when I have to take pain meds, I taken them sporadically, only when I feel the worse.  I don’t want to be the kind of person that is dependant on pain pills.  He says Tramadol is given to treat Fibro, you cannot take it in relation to your daily activities or pain level, you have to start taking it three times a day, everyday, and Gabapentin every night.

There is a kind of conflict of interest in having both Fibro and RA.  Fibro is seen as a condition you have to fight, you have to stay active; this includes exercise and physical therapy.  But, with increased activity my RA flares, so it is important that I limit exercise and activity.  So, I am confused, when I am flaring-what I am flaring from?  And, when meds have failed for me, have they really failed?  Or was the fibro just worse?  Are the symptoms similar, over-lapping, related or un-related?  At this point there is no way to tell.  It is going to take time to sort it all out.  It seems that treating one makes the other worse, and that is possibly why I have never gotten better.  We talked about working and he agreed that my frustrations are valid.  I have no predictability or consistency and that it is reasonable to consider myself completely disabled at this point, that may or may not change.  He has no advice to offer other than everyday I must be active only to the point that I can tolerate it, and to be careful not to over-exert myself.   That will mean different things everyday.  All the medicines I have been taking I have to keep taking, in addition to the daily/nightly pain meds, and we will hope to not to have to do another infusion for about six months.

I feel so confused.  On one hand I feel relieved to have some answers and explanations, but on the other hand I feel devastated at the prospect of dealing with an additional “invisible” illness.  Especially Fibro, which it seems half the doctors believe is just a blanket explanation for a bunch of unexplainable symptoms, (which is pretty much the definition of Chronic Pain Syndrome).  I don’t know what I am supposed to be doing or how I am supposed to get better.  I just feel overwhelmed, sad, frustrated and confused.  It feels like I could almost see the finish line of a race I have been running forever.  And now I have to start the race again from the beginning, and no one can tell me how far I will have to run, how long it will take, or even if I will ever be able to finish the race at all.  Just keep running!  Getting nowhere and never stopping!

We finished up the visit with Dr. Shahari telling me that we would continue to have candid conversations at our next visit, to hang in there, and to call him if I needed anything.  So, I feel like I could call him right now and talk to him for two days straight and at the same time part of me never wants to see him again.  None of this makes sense.  AUGH.

Those are my thoughts for today