Relapse talk.

[ksrn19]

Hello everyone. I haven't been on here in a while, but after searching numerous forums, I've found that I get the best advise and well educated responses here at MedHelp, so I'm back :) Recap: diagnosed in 2014 RRMS - started Copaxone, experienced pretty much constant symptoms - buzzing, tingling, tapping, numbness, fatigue, heavy legs, dizziness, etc. until I was put on Gilenya (after a very brief attempt at Tecfidera due to intolerable stomach upset) and I have been completely symptom free now for a year. In the last year I have lost 100 pounds and have been doing intense boot camp style workouts for several months and doing just great all around.

About 3 weeks ago, I started having dizziness, faintly fuzzy/kaleidescope vision, heavy legs like sandbags and arms too, and various cold/hot sensations everywhere - toes, face, arms, legs, etc. After speaking back and forth with my neurologist, I had testing done through my PCP (found only low WBC 2.1 and obviously lymphocytes due to Gilenya, otherwise normal and no UTI) and went to see an opthalmologist - found that my left eye was abnormal with visual field testing indicating potential optic neuritis in my left eye (originally had it in my right eye only). Currently, I haven't gotten so much as a phone call from my neurologist or PA in regards to this, but after they got the eye results, they emailed me saying "we want to give you steroids, do you prefer oral or IV steroids?"  For some reason, this really made me mad. Here I am in my first relapse in a year after being very successful on Gilenya and having my first "clear" MRI with no new lesions in January 2017.

This whole thing is just extremely upsetting to me, I've found myself just so cranky, anxious, upset, just irritable and angry and unpleasant to be around in general. I don't even feel like myself. I don't want to take steroids due to side effects and weight gain, mood swings etc. But I just don't even know how to respond. None of my symptoms are severe enough to require intense treatment or steroids. I guess I'm just upset b/c it was nice pretending I wasn't sick at all for this last year. I don't know when it's OK to resume normal activity. I've already surmised that boot camp workouts are out of the question and yoga/pilates might be a better avenue for me physically and emotionally. I just needed someone to talk to who understands. My family just doesn't know how to be there for me and for some reason it just irritates me even more when they try to come up with explanations that ISN'T MS. I know they're trying to help but it just makes me more irritated and like i'm making it up.


thanks for listening, let me know if you have any advice.

[ksrn19]

Thank you guys so much for your input. The grief cycle makes a lot of sense and I can definitely see how each relapse could put you into a different stage and/or start the whole thing over again. I got very excited and hopeful about Gilenya once it helped me actually reverse my symptoms. I'm not looking forward to changing medicines if I need to. I think part of my problem is over analyzing and over reacting. I think a psychologist or counselor might be in order for me! Thanks again :)

[aspen2]

In our neck of the woods, steroids aren't given any more except for extremely serious symptoms.  If it's RRMS, the risk vs. benefit of steroids isn't great.  I once sat down and calculated, for three of my relapses, how much shorter they would have been by the time I'd seen neuro and been set up with solumedrol, vs. the relapse stopping naturally.

I would have gained three or four days with two of them and maybe a week with the other one.

For me, I'm now in agreement with my neurologist.  It's not worth type 2 diabetes, bone density issues (I'm GONNA fall, it's a given, so I want strong bones to fall with), lack of sleep during infusions, and whatever else comes with the steroids.

I wanted to comment because I really identify with you.  I've had two relapses since January, and my neuro has just informed me that we have to have a conversation around a new DMT. I don't WANT a new DMT.  First year after I started was great and yes, as JJ said, it's grieving all over again.  MS is a strange beast, compared to other conditions.  You're always somewhere on the grief cycle, no matter how hard you try for denial.  

With respect to normal activity, I find with relapses that affect my leg, legs or balance, once the relapse is done (mine usually last 3-4 weeks), I can  hop right back into the normal routine as long as I start more slowly.  I'll start with therabands rather than head right to the weights, for instance.  I'll shorten the treadmill time.

If you have significant weakness, really be careful when you add weights.  I've made a mess of my rotator cuff more than once because I dive in "once I'm fine".  Keep up the habit of going, but alter the workout and ramp up.

(((hugs)))

[supermum_ms]

Hi and welcome back :D

I should point out that there isn't any of the oldies you'd remember from before still active on here, um gulp i'll do my best to not let you down though...

You said "I guess I'm just upset b/c it was nice pretending I wasn't sick at all for this last year." even though you've been diagnosed since 2014, through out your post you mention still currently going through the stages of loss, the five stages are denial, anger, bargaining, depression and finally acceptance.

It's definitely not uncommon for MSers to yoyo through these stages with each new relapse years after the diagnosis, keep in mind your emotional health and support system is just as important as the physical....sometimes you may need some additional psychological help to get you back to your normal emotional self and help you through those hard times, please consider being proactive with your mental health cause it honestly can make a world of difference!

"People with MS develop resilience through psychological adaptation, social connection, life meaning, planning ahead and physical wellness.

Barriers to resilience with MS include burnout, negative thoughts and feelings, social difficulties, stigma and fatigue."

http://www.tandfonline.com/doi/abs/10.3109/09638288.2016.1138556

You also said "I don't know when it's OK to resume normal activity. I've already surmised that boot camp workouts are out of the question and yoga/pilates might be a better avenue for me physically and emotionally." I actually think you might of been lucky to have gotten away with doing boot camp sessions for the last few months without experiencing pseudo relapses, but whilst boot camp might be pushing things a bit you can still do other health and fitness programs than yoga or Pilates.

It's typically recommended that you seek guidance from a physical therapist on what is best for you first though but off the top of my head you could look into resistance strength training, general aerobics, tai chi, walking if your not up to or uninterested in jogging, aquatic physio or water aerobics...    

Basic exercise guideline for MSers are "30 minutes of moderate intensity aerobic activity, 2 times per week,
AND
• Strength training exercises for major muscle groups, 2 times per week."

http://www.csep.ca/CMFiles/Guidelines/specialpops/CSEP_MS_PAGuidelines_adults_en.pdf

The MS trust has produce a series of exercise videos for MSers that you might find helpful to give you some direction whilst your currently relapsing but keep in mind your limited at the moment and it's never a good idea to try to push through fatigue, cause it will usually back fire on you big time. https://www.mstrust.org.uk/a-z/exercise

Hugs and I hope that helps.........JJ