I have Crashed and Burned

[Sumanadevii]

So, I had my steroid treatments on Friday, Saturday and Sunday.   I was up walking with my walker feeling great.  In fact, so thrilled I began planning a celebration party for this Sunday.  The reason?  My sixth month mark of being under a neuro that is helping me.  So what happens?

I have crashed.  I woke today.  My fingers and wrists hurt.  I can hardly lift my right leg again.  No, I am not using the walker.  I am again in a great deal of pain.  

What happened?  

[Lulu54]

I'm figuring if we are butt-naked on the capitol steps protesting, the funding would come through in record time just to get us to coverup!  LOL

It really stinks that this hit you like this.  Especially since you do month ISVM....  it must be that third dose.

hang in there -
Lulu

[Guitar_grrrl]

(((Sumana)))

Sorry you're going through such cr@p!!  I wish you a smooth recovery (for as much as you can), and don't forget - delegate.  Have a wonderful dinner anyway!

[sllowe]

Since it's unrelenting, you could very well just have the dinner, because when it's chronic like this your durn'd if you do, durn'd if you don't, if you know what I mean....same outcome.  Just thinking out loud here.
Can you make a list of what you need send them out for it and keep the dinner small and intimate?
-shell

[Sparkysarah]

Hi Sumana

I am going to come clean and confess that when I first came on the forum and saw your name I was not wearing my varifocals and I misread your name at the end as "devil". I thought this represented the MS! I noticed my error the next time I saw a post from you but thought it may make you chuckle.

I am so sorry that you are feeling so ****** and you deserve to rant and get cross. It is so boring being unwell and so tired that you actually do not have the energy to do anything. I really hope that you start feeling stronger soon and you are in my thoughts and prayers.

with love and hugs

Sarah x

[michelleric]

(((Sumana)),

I am sorry you are not doing well.  Scream, vent any time.  We all have been there, are there or will be there with this awful disease.  Maybe the docs can give you a taper now? I get a 12 day taper after the IV and I dont know if this helps or not, but for me I  "think" it does.

This disease can really take its toll sometime, over every part of our bodies. Physically, mentally and spiritually for me.

I think you should have the celebration dinner this week, and next week again?!  How does that sound.  Treat yourself well, and take a breather. @ dinners out sounds good to me anyway.  

hugs to you,
Michelle

[rendean]

Sumana,

I am sorry to hear of your recent crash and burn. I , too, Had steroids the same days you did. I, too, have crashed and burned. Enough to change my cardiac meds because the cardiologist thinks I'm not receiving enough oxygen and that's adding t my weakness. If no better by Monday  then dose ack but neuro doesn't want to do a dose pack if it can be avoided.

M daily schedule mimcs yours. /well, my arms and hands are way beyond the functioning level.  Take care and treat yourself right.

Ren

[BeanBandit]

With ms I noticed one of you had mentioned it sometimes has to get worse before it gets better........ I went on a treatment of prednisone for 1 month. In that time all of my symptoms had worsened and magnified while on steriods..... if this was ms would it take a whole month of getting a lot worse before getting better on prednisone????  Something about my mri showing t2 lesions... is that's ms?

[Sumanadevii]

Thank you to everyone trying to calm me.  In answer, my doctor has never given me a taper pack.  On a normal month I take just two treatments.   This month I was given three and it was a week early.  My body had just stopped working and the pain level was high again.

My doctor said to ride it out.  To rest.  To give it time.  I guess since it hasn't been a full week I should calm myself and just rest.  I HATE RESTING!!!!!!!!!!!!!!  I hated naps as a kid and I hate them worse as an adult.  How many naps today?  Three!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I keep trying to get up and find something to occupy my mind but my body just keeps saying......no choice...get in that bed!!!!!  Please let it just last a week.  I keep telling myself if it is over by Monday I can handle it....lol....If you call this handling it!

I don't know if I should cancel the celebration meal or not.  I know my husband will do it all for me but I would hate to sit and be in pain and not be able to enjoy it.  My sons were all excited about coming.  I think canceling and trying next week might be better...Just not sure what to do.

Thank you for listening to me.  Sumana

[BBrinker]

I am so sorry to hear that you are struggling with the after effects of treatment. I too have had my crashes after treatment and they suck! You have every right to be drama! =) Yes dosage taper seems to be part of it... and in all honesty the" hyperness" that I get from treatment seems to give me a false sense of "super woman" and I tend to push myself a lil much which causes me to feel like poop later. I talked to my neuro in length about it in the past and she said it was very common. I hope that things go better for you. Keep positive and pace yourself. I will be thinking of you. =D I too have a deep hate for MS and the things it sometimes keeps me from doing and seeing, BUT I feel that it makes me appreciate the good days even when few and far between.

<3 BB
DX 2009....
Copaxon, Steroids, More Steroids....lol =p

[COBOB]

Sorry to hear you are not doing well.  Sounds like you got hit with "Adrenal Rebound" where your body thinks there are enough steroids floating around so the adrenal glands go on strike for a while.  Were you on a taper?  If not, call your doctor and they can start you on a Dose Pack.

Get better.

Bob

[RedFlame]

You're welcome sumanadevii,  this is just horrible.  If there is anything that warrants being dramatic it is this disease and the pain and agony it brings.  I think your response is absolutely proportionate to this disaster!!!!!!!!!!!!!!

You can be dramatic as much as you want!!!!!

I like the sound of this.  I love to rally and demonstrate.  

Here is the plan, we charter really upscale luxury buses.  All of us go to the capitol steps with our wheelchairs, walkers etc.  

I hate this so much!!!!!!!!!!!!!!


love and hugs

Red

[anon07072023]

I'm so sorry that you're not feeling good again.  I wish there was something that we can do - all we can do is try to support you and wish that you felt better.  

I really hope you start on your upward swing soon!!!

-Kelly

[Sumanadevii]

Thank you, Red.  I just need to blow on about it.  I am so disappointed.  I am being a drama queen and I DONT EVEN CARE!!!!!  

And yes, Red, we sure seem to be right behind each other with the same mess from the MonSter!!!

Did I mention I AM SICK OF BEING SICK////THAT I HATE THIS DISEASE////

In the spring, I think we should all march on Washington.  Go by buses and stay bird naked until they give us more funding for answers!!!!!!!!!!!

[RedFlame]

Oh gosh Sumamadevii,  I'm so sorry to hear about this!

I have never had the infusions but I do know what it is to wake up like that.  And it is terrible!!!!!!!!!!!!

Of course you feel discouraged and angry,  this disease just takes and takes!  

Your life reminds me of my life.  So, you are not alone and I am sorry about your celebration.  Maybe it will pass

((((hugs))))

Red

[Sumanadevii]

I HATE this MonSter!!!!!!!!!!!!

Doctor says give it time.  I don't want to give it ANYTHING!!!!!  I want my celebration dinner and to enjoy it!!!!!!!!!!!!!!!!!

My life.  Wake.  Water.  Feed.  Read.  Sleep.  Begin over.  

THIS IS NOT WHAT I WANT

[sllowe]

Hey Suma,

Poppin in to say sorry for the crash and return. Def. call like Julie says. Maybe this too will fade after a few days, but it's best they know about it before the weekend.
-shell

[Sarahsmom46]

You are having a rebound of your symptoms. It happens to some of us unfortunately.  

First of all, did they put you on a taper dose of steroids after the IVSM ended?  When I had IVSM in the past, and they didn't put me on a prednisone taper for some reaason, I crashed within 48 hours big time. Rebound symptoms, symptoms associated with this relapse,  can come back with a vengence.  

If you are on a taper, perhaps the dosages are bringing you down too quickly. This is what happened to me over the past week.  I had some rebounding this time with taper and told the doctor about it. She adjusted my dosages on the taper, bringing me down slower than normal, and that has made a huge difference in my symptoms.

I hope you can get some relief from the symptoms or call your doctor and see what can be done. It will get better as the steroids get out of your system.  

Julie

[Rena705]

I know where you are coming from and it's not easy.  I don't really remember why it happens but it seems that with those steroids, you have to get worse before you get better.  I haven't had an infusion for a couple years now and I want to keep it that way.

I hope you are able to just rest and eat as healthy as you can and rest some more.  Take full advantage of any opportunity to rest and you will start to feel better gradually.\

I wish I could be more help to you but I am a little out of practice on here.  Someone more knowledgable than me will come along by morning I am sure and they will have more to tell you about why the steroids does this.

Lots of Hugs,
Rena