Tag Archives: pain control

Frustrations and Pain

02 Friday Oct 2015

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Normally, I start the day with little pain.  I wake up tired but feeling fine overall.  I force myself out of bed, eat something small, and take pills.  Once the adderall (W calls it vitamin A) starts to kick in, I’m all set to go and can make it through most of my day just fine.  From there, my pain level fluctuates depending on what I’m doing, how high my stress level is, and who knows what else (the phases of the moon?  A Julia voodoo doll that exists in the world?  Who knows…)  Typically my pain increases starting in the afternoon and progressively gets worse until it is alleviated by my larger med dose I start taking when I get home in the evening.

Instead of the situation above, I’m now waking up feeling much like I’ve been in a car accident.  Every muscle and joint in my body aches.  I don’t want to move, but laying still doesn’t help either.  W has been kind enough to massage my shoulders and legs the last few mornings which helps (or at least serves to distract) but the pain returns shortly afterward.  The only thing recently that seemed to really help was an infrared lamp my massage therapist used during my treatment.  The warm on my back was so soothing, that I am honestly considering buying a lamp of my very own if this continues.

I’m afraid to call my doc.  I’m concerned he’ll think I want pain meds (I don’t) or he’ll suggest steroids.  I just had my last infusion set in July and had a gram of solumedrol with each infusion.  I really don’t want another round of steroids – they just mess with my system.  I feel awful & I gain weight.  I get overly emotional.  All the tell tale signs.  Unfortunately if this continues, I may not have any choice.  My pain level is not abating, so the frustration increases.

I don’t want this to become my “new normal” when I was just starting to adjust to the previous one.

…oh the symptoms

14 Monday Jul 2014

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There really should be awards for getting out of bed

My pain is increasing as of late.  Not entirely sure why.  Honestly, I don’t think I’ve had MS long enough to be able to say.  It may be the crazy heat/humidity we’re experiencing, it may be that I have a small virus.  It may be the after effects of the Rituxan, or it may just be the ebb and flow of the disease process to which I am still adjusting.

I became keenly aware of it over the last two weeks.  At first it started with the numbness in my left foot returning.  It’s not necessarily an unpleasant feeling, just very strange and off putting – it has been ages since that symptom bothered me.  I tried shifting in my chair at work.  I tried getting up and walking around thinking it was just asleep for whatever reason.  Nope.  It was just numb again.  I had to remove my shoe as the tightness was bothersome (odd, I know), but I just tucked my shoe-less foot under my desk and finished the day.

I am intimately familiar with what happens next from prior experience. After the numbness comes the pain and I spend my time wishing the numbness would return.  It starts at my left hip and travels down to the numb foot.  Then the muscle cramps start in the left calf.  Sometimes I get an involuntary twitch in my left foot.  I just kick for no good reason.  Finally, my muscles all over get tight – shoulders, back, etc.  Everything feels “off” and just uncomfortable.  I can get through the work day okay, maybe because I’m distracted, maybe because I’m up and moving around.  It gets worse as soon as I sit down at night and the pain increases the later it gets.  By the time I am ready for bed, it is beyond aggravating and I can’t sleep.  I’ll lay in bed and try to read.  I lay on one side and then the other.  I’ll try my back.  Nothing is comfortable at that point.  I am a girl who needs her sleep and this is when the frustration really sets in.

To compensate for the pain, I upped my Gabapentin.  Not a problem, except that I wake up groggy (read: drunk) in the morning.  At least I am able to sleep.  One night I had to up both the Gabapentin and the Klonopin as I was laying in bed and could feel the muscles contracting in my calf and the foot twitching.  Again, slept wonderfully, but woke up and wasn’t able to function well in the morning.  Not great when I have to drive 30 mins to work.  Obviously increasing the meds is not good solutions for me.

Since I don’t know why this is happening, I can only try different things and see what works.  I am trying to be more careful about my diet and am wondering if my stomach symptoms can be tied to the MS symptoms.  I am taking the meds earlier in the evening hoping that I can sleep longer and wake up able to function. I also decided that I need to swim again.  Pain or no pain, I think it is the only way I’m going to feel better long term.

With that in mind, I swam three times this week.  Short visits each time, but I was happy with the effort and glad that I did it.  I always forget how much I like being in the water.  By the time I finish, I’ve “lost” my whole left foot (can make getting out of the pool challenging), but it’s worth it.  I am also committing to more yoga practice.  I’m crossing my fingers that between the two, some of this pain resolves and I am able to concentrate on life again.

My heart goes out to anyone who experiences chronic pain.  I’m a few weeks in and already feeling a bit nutty.  I want to feel better and I want to sleep, but I don’t want to drug myself to get there.  I am always open to suggestions – do others have ideas of battling chronic pain while maintaining your sanity?

Getting Good News

23 Sunday Mar 2014

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Since mid October it has felt like every doctor’s visit was a dread-filled experience.  I left each feeling despondent and generally depressed.  For the first time, I got good news and I was honestly unsure how to process it.

W and I went for a three month Rituxan follow-up with the MS specialist.  I had an MRI that I was quite concerned about since the report showed a lesion at T2 that had not previously been present.  The neurologist sat down with us and the MRIs, pulled up the old scans and the new and told us that she didn’t believe there was a lesion at T2.  She could see it only on one sequence, so her guess is that it may be an artifact or something else, but if it were a true lesion, it would be more visible that it was.

That alone produced a huge sigh of relief from me.  Several weeks of mental anguish turned into nothing with a few words from the doc.  As if that wasn’t enough, she went on to say that she believe I didn’t originally have one long lesion as we had understood, but quite possible two smaller lesions and that both were improving.  Yep, improving lesions.  It was something that had been cautiously mentioned as a possibility early on when I started treatment, but we were warned numerous times that it may not happen.  So, in short, the Rituxan is doing its job.  It stopped the disease process and allowed my body the chance to begin to heal itself.  Kind of amazing if you think about it.

To add icing on the proverbial cake, my CD20 count is still negative.  That means that the Rituxan is not only doing its job, but it is lasting in my system meaning that I won’t have to treat again until June.

Of course, the little part in my brain immediately started talking to me and warned that I shouldn’t get too excited or too comfortable as the MS can rear its head anytime, but the doc shared with W & I that in clinical trials 90+% of patients didn’t experience a relapse if their B cells were kept in check.

I did ask about pain & fatigue control and was told “exercise, exercise, exercise.”  Per the doc, exercise helps pain control in all cases except traumatic injury.  That was new knowledge for me and pushed me back to the Y to take on swimming again.

So at this point I am focusing on staying positive, trying to be healthier, and hoping that my symptoms will begin to improve as my body continues to try to repair the existing damage.