Recovering from Relapse??? Shared Experiences Needed!!!

[kimmeestar]

Hello,

I have been having a relapse that is going on for over 7 weeks now. I tried 2 dose packs to no avail, cannot do IV steroids any more, had same bad side effects from Acthar and have been waiting it out since. I was wondering if anyone else has felt like they were coming out the other side of an exacerbation but were left weak and still unable to do many things. In the past after IV steroid treatment I have recovered and been able to resume my normal activities almost immediately. I have no new worsening symptoms, I am finally able to walk again and much of my spasticity and pain is gone. Has anyone had to go through a recovery period after a bad flare? Does it take time to get your strength back. I am afraid this could be my new norm. If anyone out there has any experience with a "recovery period" or similar experience and can share I would appreciate it greatly. Struggling with this new experience.

Kimberlee

[SNOOPY]

Hi Kimberlee and welcome to MSWorld.

Yes, there can be a recovery period.

I have had 5 exacerbations, 3 of those were severe and affected my mobility and strength. The exacerbation it's self lasted 6 weeks the recovery period took months.

Walking was my biggest challenge. I started out walking around inside my home a few times a day. Then took my "walks" outside, going a partial way up the driveway and back a few times a day. Little by little and very slowly I increased my distance. With each exacerbation I had to go through this same process.

There was a toll this process took on me. I would get frustrated, cry, feel exhausted after these excursions, and get angry. For me the anger was the most helpful as it forced me to keep trying to walk again.

In the end I did regain my mobility and strength.

I am a strong believer in exercise.

In the past after IV steroid treatment I have recovered and been able to resume my normal activities almost immediately.

The down side to using steroids? The more steroids are used the less effective they become

[abeautifullife]

Totally agree with Snoopy - exercise is the best treatment for my MS after relapses. After my first big one, I did a lot of water aerobics. That helped me to build up strength again all over without pushing me too hard. The water also keeps you cool, if heat is an issue for you. The classes I took were at the local YMCA and very affordable. After my second relapse, I did PT on my right leg and a lot of walking. I walked for as long as I was physically able every day. I didn't walk super fast, just at a comfortable pace. Since being diagnosed, I have been taking Rebif and have been relapse free for almost 2.5 years now. But exercise, in my opinion, is an equal partner with my DMD. If I get lazy about exercise, I really feel it, and fast.

[kimmeestar]

Recovering from relapse???

Thank you Snoopy and Beautifullife!!

I really needed to hear that. I too am a firm believer in exercise and hope to get back to it soon. For now I am starting out slowly. Walking around the house and in my garden. It was valuable information to me that other people go through recovery periods and do ultimately get their strength back. Actually life altering as it has not been my experience to be so depleted and I was afraid this was it. Hard work and exercise I can do. I've got this!

Kimmeestar

[SNOOPY]

Hi kimmeestar,

Hard work and exercise I can do. I've got this!

I am sure you can! And, I know you do

[PositiveMS]

Recovery period

I had the biggest flare of my life in July 2013. I was lucky to be able to walk a few meters. It was downright scary, and even my arms were weak. The flare lasted 5 weeks then went away. I also remember feeling like this was it for me. SO not true. It honestly took me months to get my strength back. I swam, did yoga, and boy, was it tough. I remember feeling like I wasn't
improving at all. Now, almost two years later, I feel awesome and all that is a distant memory

By the way, my recovery didn't take a full two years, more like 8 months. Just thought I'd clear that up

Recovery happens, just maybe at a frustratingly slow pace, but keep at it! Things do, and will get better!

[KatieAgain]

I had a flare last over 6 months. Worst one I ever had. No steroids though.

When I get IVSM it works well...but takes a few weeks to get my body going. IVSM exhausts me.

I agree with all the other posters...start exercising to build up your strength. Do it slowly and I got to be honest you might be crying for a few days. Steroids tend to throw me into a pity party. But keep at it...you have not had enough time yet.