HELP...I need someone to understand!

[azgraves]

Today started out OK, better than usual, actually. I kept myself mildly busy most of the day....then it hits! My husband was helping me get in the vehicle when we were leaving from my daughters band concert....SUDDEN EXTREME WEAKNESS! I thought I was doing OK, then, I knew I wasn't. Am I the only MS patient to experience what I'm about to tell you? When fixing to go thru a really bad episode, the back of my nevk will feel like it just got hit by a freight train, then come the flood of tears. I'll have no reason to be upset, but the tears will just pour. I will feel completely depressed over nothing I can think of and my husband can't seem to have any compassion...any other time he does. He thinks its a "silly" hormonal thing, I think its an MS thing. It will take hours to regain any strength. Definitely no strength until I'm so weak I become lethargic, I shake like I have Parkinson's, I've cried a river and completely lost the ability to comprehend anything said to me. My husband gets so frustrated with me during these times. How do I deal with this?

[poohb3ar]

bless your heart!

i'm sorry i, nor anyone else, has replied!
i pray you're doing better

so sorry you are going through so many symptoms, such a rough time and not being understood!!!

i know that most feel terrible!

i can relate to some of what you described, the 'freight train' back of neck happens to me often. it's not an unusual sx. putting your chin to chest hurts alot of us MSrs. of course, in varying degrees. i just try to avoid bending my head that far!


the sudden onset of fatigue must be horribly frustrating. do you notice any warning signs beforehand? my body usually starts shaking (internally at first and then all over outwardly if i ignore- then i'm in BIG TROUBLE. bed for me for quite awhile)
sometimes it feels like an army of ants are spreading throughout my body. usually they start from the top of my head. when this happens, i KNOW i must lie down in a darkened room and drink lots of fluids and rest, rest, rest.

it's a shame we can't schedule these episodes. so sad when we have to miss important times esp. in our children's lives.

sorry about your DH. have you shown him any info from MSAA or MS Society about the effects of MS? maybe that would help him begin to understand.

i know it must be hard on the caregivers and men seem prone to dismiss a lot of our problems as hormonal or 'in our head' or exagarreted.
so, so frustrating!!! lately i've given up explaining and sometimes even telling that i'm having worse sxs. not a good idea!

please check back in with us.
i want very much to know how you are doing!

may God bless you and help you through this!

[CaroleL]

Azgraves, the same thing happens to me. I know the feeling, hugs!

[rdmc]

I get the all of a sudden weakness...hate it.

As to the crying, it's probably an MS symptom called Pseudobulbar Affect. You can look it up, lots of info on it.

Let your husband read about it, then he might understand the crying.

[CaroleL]

It is comforting to find medical information that tells you your symptoms are normal. I don't feel as bad now. Thank you!

[floatingurboat]

I can definitely relate to this. I've had the sudden bouts of extreme weakness where I feel kind of like I just 'fade out' and my legs buckle from underneath me.

I've also been diagnosed with pseudobulbar affect disorder, and it SUCKS. People tend to think you're depressed, or if you're having a laughing fit that you're crazy or rude.
There are medications for it that maybe you could try and see if that helps.

As for the weakness I haven't found anything that helps me with that aside from making sure you're lying down preferably or sitting down if finding somewhere to lie down quickly enough isn't an option. The main goal there is to just make sure you're safe and not going to fall and hurt yourself.

I've most definitely sat my butt down on the floor, even while out shopping, when I can't get to a chair fast enough!

~Elly~
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[kebsa]

the sudden onset of severe fatigue is can certaily unsderstand- its no energy left in the tank at and while i kind of expect it in the warm/hot weather -so many times it just happens all on its onsome! that one i have accepted as being one of the troublsome effects of MS and those around me are gradually learning its more than being a bit tired!but i hate the erm fatigue simply because to most people fatigue is a relatively mild issue and we know that MS fatigue is so much more than that

As for the other part, that is somethin i have been experiencing in the last year or so- and suddenly getting weepy for no reason is really ut of characther for me. i had wondered if it was a menopause isse but was not that convinced as i have been on hormone therapy plus i have had drug induced menopause for yrs and et this is rather new. i also find that when a corny ad comes on tv it will reduce me to tears very quickly not to menion tear jerker movies and books.

My background is palliative care nursing and that is a job where you get used to controlling your emotions so that you are not blubbering at a time that would make it hard for your patient or their loved ones to cope- mum had even in the heat of the moment once that i was too controlled and "tough"- know and ad for tissues comes on and i need a box of the blighters! my GP has suggested that it is the MS that has had this effect but did not mention pseudobulbar effect. I don't like feeling out of control and that makes both of these issues tough to deal with

[Fed Up]

Wow! Great things to read! Thanks all.
1) Same thing here, but it seems to be related to:
Last summer I had an a/c guy here and it was extremely hot outside. I took about 2) steps down the stairs, another step and started to melt, as if my blood had been drained from me. So, weak, very weak. I went back inside and was ok, but very tired and more fatigued.

2) On hummid days.
3) Sometimes, when I am getting out of the shower, it happens also. Has to be the heat in the bathroom, so I take cooler showers.

When I had that episode outside, the a/c guy helped me back in and said, "My girlfriend has M.S. and the heat does that to her. Your face went completely pale.

He seemed to be well versed in what it looked like. Most likely, I would have fallen. Which is not an option, 2 fake knees, not wanting any surgery.

It is not vertigo..There seems like it should have a name.

Thanks everyone for sharing something, I've not found before.

[mbeth-hutch]

I'm new..so I hope you get this late reply. I SO understand. And it's not your fault. The more you educate yourself and try and keep trying to educate your husband, the better you both can cope. He has to realize that not only can you not control your body? You cannot control your emotions as before.

THIS IS a hard one for all of us. I still struggle. I get accused of over reacting ALL the time. There more I understand it IS part of the illness, the quicker I can get out of it..stop fixating..and my husband helps with humor. Even with all that..I STILL am thrown into a fit of crying or anger at the slightest thing sometimes..but to me?? In the moment?? They feel HUGE.

I hope this helps. At least knowing you are not crazy. You have an illness that affects you physically and emotionally. It's a cruel disease. but we can make it through with support..rest..humor..Ice pads and strategic plans every day

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[MSLorrie]

I'm so sorry you are going through all this.

I feel so badly for you and I hope your husband reads these replies and starts to understand how frightening this is when it hits you and how helpless you feel.

I'm so sorry. I have problems with out of control emotions a lot and weakness.