Tag Archives: symptoms

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.

Status Update

28 Monday Sep 2015

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It has been ages since I posted (almost a year – my goodness!) mostly because I’ve been doing well (or well enough) and I’ve been incredibly busy between work and the business and life in general.  I keep intending to return.  So, here I am.  Every thing is much the same as my last writing I believe except that my questionable cervical lesions turned out to be not questionable at all.  I have a lesion at C2 and a small brainstem lesion as well.  How did we find out?  Well, I started having difficulty with my hands for the first time.  Burning that would run from my shoulders down, weakness that would prevent me from opening a jar or can, and cramping in my forearms.  When my forearms get tight, my hands tend to pull in – like I’m making a first – and I have to focus to keep them open.

I visited my MS specialist early this month.  As part of the visit, I asked about my potential for improvement.  He was kind, but told me that it wasn’t likely at this point in treatment and this was probably my new baseline.  I’m two years in, so I knew “better” was not likely, but hearing the words out loud was hard.  Sobering.  He suggested instead that I need to focus on better overall health and exercise to maintain brain volume and to feel better in general.  We had discussed exercise in past and he emphasized that I need to be doing some form of it every. single. day.  (ugh)

Even before this visit I had started walking.  W and I have been going to the hospital up the road from us that has a nice 1 mile path.  It wanders around two ponds and provide sufficient distraction that it doesn’t feel like a chore.  There is even a tree toward the end that always makes me smile.  The location of the hospital used to be a large farm (cows and all).  Very few of the original structures remain, but this one was left alone.  Talk about overcoming adversity.
Tree Overcoming Adversity

And we went to the beach.  I adore walking on the sand and communing with the waves.  We walked six miles one day.  Just came out to the beach, took a left, and walked until we were tired.  Then turned about and came back.

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We rented chairs on the beach and after our walks, we would sit under the umbrella and watch the waves.

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So, I’ve definitely been trying to get exercise.  I installed the Stepz App on my phone* and I’m tracking what I manage to walk each day.  W pre-paid for 6 months at the Y for both of us so I could start swimming again.  I swam a bit while staying at a hotel in DC recently and it was a good reminder of how much I enjoy it.  Unfortunately, the Y’s pool heater is broken (again) and cold water + my muscles is a very bad mix.  I’m hoping they will be back up and running next week.

W has also been trying to cook as many vegan meals as time allows.  I bought a copy of Thug Kitchen’s cookbook.  Their cookbooks aren’t for everyone (*ahem* let’s just say that they play up the Thug angle quite a bit), but the recipes are amazing.  For anyone who may want to give it a shot: be prepared to spend some time.  W tells me each recipe is taking him an hour or more.  The end result is worth it, but you have to have the time to set aside.

So, we’re moving forward.  I can’t fix the damage that has been done, but I can focus on losing weight and exercising more in hope of feeling better overall.

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*Related note: I would recommend Stepz.  It allows you to put in your height and weight and recommends goals for you each day.  Plus, it calculates your mileage more accurately.  As a vertically challenged individual, five thousand steps for me is not the same distance as five thousand for my husband.

Fun with Prednisone

02 Thursday Oct 2014

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Fun with Prednisone

Although I was treated with IV Steroids last year, the whole experience is a bit of a blur as I was in the midst of being diagnosed two new chronic conditions.  I remember being overly emotional and having trouble sleeping, but that’s about it.

This is the first time I’ve been on high dose oral steroids (200mg tapered over 15 days).  I feel like my insides are buzzing.  I’m having trouble sitting still in spite of my seizing muscles.  And I’m eating.  Like everything.  All the time.  It goes without saying that sleeping has become a bit of a challenge.

Related note: my husband loves it!  The laundry is done, the house has been tidied, blog posts have been written, I reorganized my health binder, and am planning to sort through two boxes of stuff that I have been meaning to get to for about six months.

So apparently my relapse has an upside?  🙂

The other leg was jealous?

22 Monday Sep 2014

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Since the beginning of my MS journey, I’ve always had trouble with my left leg.  I periodically “lose” it (it just goes numb and seems to disappear), or I get pins and needles, or (my favorite!) I get burning pain that can impact my toes, my leg, my hip, and sometimes all of it.

In late July I was in bed one night and realized that I had no feeling on the top of my big toe.  My RIGHT big toe.  I decided to approach it in as zen-like a state as I could and just shrugged and thought maybe it was the new shoes I had bought recently.  The numbness continued and started to move slightly so that it was numb around the nail bed and a bit along the inside of the toe.  I stopped wearing the shoes for four days.  No change.  Still, I refused to panic – typically my go to response.  I decided to monitor it to make sure it didn’t spread and to move on with life.  I mean, it’s just the big toe right?

The following three weeks were pretty stressful.  I had a few crazy days at work and wasn’t sleeping much.  I spent a bit too much time in a very hot building and noticed afterward that both feet were completely numb instead of just the left.

I stood up one day at home shortly afterward and started to fall.  My right foot had basically turned outward somehow without me noticing that it wasn’t holding me up.  This happened a few more times.  I started walking slower and focusing on my gait again and paying attention to the right foot to avoid walking on the side of it.  I tried my best to adjust, but it was challenging.  One of the docs showed me some exercises that would help to strengthen the muscle on the right side of the right foot which seemed inexplicably weaker then my usually troublesome left side.  I even woke up one morning early when my right calf muscle seized (this feeling may go down as one of the worst ways to wake from a deep sleep).

At this point I thought it may be good to get a neurologist involved.  Clearly the problem wasn’t just going away.  I called my local doc who was out of town and his assistant recommended that I call the MS Specialist.  They ordered some lab work and we waited for the result.

So, it turns mild UTI that I’ve had for ages has become significantly worse.  Apparently it is fairly common in MS to have UTIs.  I’ve had no symptoms that would make me think of that possibility.  I also understand the lack of symptoms to be a fairly common occurrence when patients have spinal lesions.

Long story short, I’m on an antibiotic and am anxious to see if the feeling returns in my right big toe once the infection is under control.   As stated in the article linked above: “A person with a UTI may experience a pseudo-exacerbation. Although no underlying disease activity exists, the infection and accompanying elevation in body temperature may cause other MS symptoms to flare up temporarily. Once the UTI is treated, however, these symptoms should subside.”

We’ll chalk this up to yet another learning experience?

…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?

Managing the Symptoms

20 Monday Jan 2014

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After all the doctors visits, MRIs, and lab tests, I was still left reeling a bit.  Instead of receiving a final diagnosis, I received a “it is most likely MS” diagnosis.  Again, difficult for someone who appreciates order and planning.  For my personal sanity, I approach everything as if I have MS as (again) this is the most likely scenario.

One thing they don’t tell you up front about high dose steroids?  They are really rough on the stomach and can make you a bit emotionally unstable.  I was a bit unstable from everything that was going on to begin with, so this became pretty extreme.  I began taking two omeprazole (prilosec) daily to settle my stomach (I had a previous prescription due to heartburn) and it would help my stomach some.

In the midst of all this running back and forth, the IV steroids had returned most of the feeling in my left leg and my balance, but a burning pain remained that seemed to get worse in the evenings and at night.  I remember the first day it happened and how confused I was.  I left work and went to my parent’s house and took off my sock & shoe.  I kept feeling my foot and was confused that it felt cold to the touch, but the inside was on fire.  My dad, a doctor, explained that it was likely neuropathy and that I would need medication to control it.  I called the on call doc and got my first gabapentin prescription.

On top of the burning, I was waking up most nights in horrific pain as the calf muscles on the left side would seize without warning. It would take an hour of so for the pain to reduce and my heart to stop pounding enough to go back to sleep.  Not the most restful situation.  Enter baclofen.

At some point in the course of lab draws it was brought to my attention that my vitamin D level was very low (18.5 at first check), so I was put on vitamin D supplements.

So, I went from a relatively healthy 33 year old to a somewhat unstable 33 year old MS patient in 6 short weeks.  I was previously taking one pill a day and am now up to 7 or 8 depending on my symptoms.  Life has definitely changed.