does anyone else get this do something suffer for days afterwards?

[uk2]

Hi All

I am so fed up of one day doing something simple like take my kids to there kids club and then getting back and suffering for hrs at night then through the next day.

I used to get a few good days but now my legs are so weak and painful i drove my adapted car last night and i hardly slept a wink for pain last night and now i am so tired today and my muscles on my right side the weak one are so jerking and twitching and stabbing pains.

Do you all have this cycle everyday? do you get fed up with it? how do you live your lifes like this?

i have my youngest off sick today and my carer never turned up!! so i am fed up really.

sam

[Wobbly]

oh my this sounds so familiar... as you know my left leg in particular is weak but now I'm having problem with both of them... tightness, burning, achy pains in my thigh area..sides and back of thigh..

I go shopping with my hubby using a cart to hold onto... but I'm done when I get home..laying on the couch for the rest of day and next day...just exhausted.. I don't know why.. I don't think I'm that old... I feel so bad for my husband he doesn't deserve to be stuck with me.. I don't know...

I know how you feel.. and I don't know if Dr realize how bad it gets... mostly when your not Dx and don't have treatment

I get fed up recently too.. I don't want to go through another year like this.. AUUGGHHH..

sorry, I'm venting on your post...

your not alone with this...we have each other and other friends here online...
hang in there girlfriend..
take care and I hope your day goes alright...
Hugs
wobbly
undx

[uk2]

Thanks so much wobbly, i am so fed up too and fed up searching for answers and coping with my kids they deserve a better mum i only have energy for ths some days. just found out my old neuro will take me on but refuses to see me at the neuro hospital and wants me seen at my local one with all the old equipment i was so hopeful i would get a full work up with contrast and if he could not help me then being in a huge hospital like that send me to someone else but he wont and i bet it will be weeks till i see him now boohoo been waiting a month already and if my gp had not stuffed up i would be seeing somebody new right now scream!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! he i am my life just wasting away and noone seems to care for sure its a nightmare!! still i guess i get to see my rheumy now on the 17th as that is when his clinic is for the neuroscience hospital so wont be going there now so maybe she can help in the mean time.

when do you see the neuro again??

sam x

[Wobbly]

I don't know... I'm thinking of calling them an asking about the appt for the MRS scope thing... and letting them know I'm having a diff time with my legs... I'll let you know when I know... good luck and ttly

wobbly
undx

[Ufrustrated2]

Fed up with it? you're joking of course? ;-)

it is very frustrating to have your body tell you something time and time again and yet the doctors place you in the spin cycle of whatever the "illness of the day" is. what is the catchall term now, "stress" it is i think. or is it "chronic fatigue symptom". or is it "mental"? you know the cycle, yes? then years of repeated tests.

to add to the frustration, we go along with that for a while, in my case years, trusting them. but, as we have all noticed on this board, after awhile, we know they are wrong and our body has not been lying.

so now this particular frustration cycle begins again...seeking more answers all the while never knowing how you will feel and yet, still trying to convey your symptoms to yourself and a doctor. and when the episodes hit, how long will it last this time? for me, 2-3 days to 3-4 weeks. now days, it is better for me to measure episodes in, how many good days am i having due to they are far less than the bad ones. it wasn't always like that though.

how do i cope? i really don't know. but i can this, i have some really good friends, i have my constant talks with God, i try to keep active and keep my brain active, i try to do things that make me feel young, when i can, and i still have some fight left in me.
    but i will add,
i did walk away from a really good paying job 2 years ago. it was time to go anyway, but the health issues were the number 1 reason and when i had the opportunity to leave i did it. i didn't tell anyone about it though. it is just one of those things you know you need to do, so you eventually do it.  at the time, i was having a terrible time conveying thoughts verbally along with the mental fog and discomfort and when i would get home from work, the facade would come down and i would just crash.

no one at work understood my situation nor my friends nor my doctors at the time. as for non-doctors, no reason for them to understand really. i can't put that kind of burden on them. heck i don't really understand all of this either. but doctors? that is another story...we'll save it for the friday doctor roasts on this board.

so it's into survival mode we go. you do what you have to do if you haven't decided to give up. humans are made this way, we keep trying until we can't. look at the perseverance of the people on this list. unless one is a full blown nut-case who would want to go through this seeking answers and help!!? i'm telling ya, my energy would love to be doing some extreme sports and kicking out the jams. certainly not seeing doctors nor gearing up to battle these bizzare symptoms that just come out of nowhere and at anytime.

also, i'll have to redesign my work picture though. from an office in a large corp to i guess like a contractor working for myself where i can have more flexibility with what jobs i accept, etc. but i have to get this health thing on some track besides the random "illness of the day" that doctors hand me. after 22 years and positive test results one would think, yes?

as i mentioned on one post here, i've become more of a loner due to this situation with the ebb and flow of the "holidays".  i'm sure you can relate that no one is on the same schedule as these symptoms. like our friends, dates, activities, etc. so i finally tossed the towel in on the meds and take them now when needed. they have helped me be more social by taking the edge off the discomfort and mental irritability that accompanies my episodes.

gee, i'm rambling tonight. another sleepless night, what's new?

[uk2]

wobbly

i would call for them sure they need to push the appointment along. good luck hun know how you feel.

unfrast

I so feel for you 22 yrs of this and i am moaning after 2 yrs oh my gosh, i am glad you have good friends and most of all God in your life. I guess when can only press on and thats what we do, there was a scripture about that pressing on into Gods goals as it is that its not skipping on or running its hard work and we have to press on and keep going even when there is resistance, so i guess as you go along on this path we learn patients grace and many other lessons that we have been given to learn this way.

I know i have a different outlook on life now and since my husband left me i see i am stronger even though i am bodily weak. I am stronger inside, i just hope and prayer the dr get a big wake up call and start looking further then the end of thier noses and stop labelling us with the newest dx they can find because we dont fit into there boxes.

sam

[Fluffysmom]

Oh, yeah, I do stuff and then pay for it for ages afterwards, whether it be sitting at a basketball game for a couple hours, running a few errands (driving really irritates my pain), or going to bloody physical therapy.

I took it easy after the last PT visit and didn't do too badly, then yesterday I saw my regular PT, and hurt immediately after.  I have to leave for an appt. with my primary care doctor in a few minutes, and I really am not looking forward to the drive there.

I have a list of things to discuss; I'm so frustrated of having no answers and trying so doggone hard to get someone to even LOOK for answers.  I'm tired of being tired and feeling like an anchor around my friends necks.  I feel like I wear out my doctors  and physical therapists.

Now i've been eating for comfort and gained back most of the weght I lost when I was sick.  I want to exercise and feel better, but every time I try the simplest things like a walk, I end up hurting.

Hey, at least I was able to get a couple presents for my roommate's birthday (which was yesterday), even bought some flowers and arranged them in a vase.  Had a lovely dinner last night; went early so we could grab a nice comfortable booth.  Had baked halibut crusted with pesto over sundried tomatoes and beurre blanc with roasted vegetables.
Oh, and then a piece of the coconut cream pie I bought for her birthday dessert.

Then I had an awful time sleeping, pain, woke up having to go pee and couldn't untangle myself from my covers and managed to pee in my bed some; now I'll need to do laundry when I get home from my doctor's appt.

I'm lucky that I only have a cat to worry about.  You know, your kids are going to love you, and will understand what's going on with you as they will be there with you, especially if you make sure you let them know that you love them even when you feel really awful.

Hugs,

kathy

[uk2]

Hi kathy

i sure hope they understand and it makes my kids stronger, my oldset and youngest have changed they are so badly behaved at school and as my husband has left it has changed there world for sure they are so angry and loved deprived yet i do give them love but they are left to it most of time and i try and do the essential things for them.

very down today in bed again after a morn of ladies group which has left me in pain and unable to even take my own daughter to the dr's this afternoon a friend is taking her i feel a burden to all and not serving anyone anymore and people just serving me where i used to do for others always.

I want answers and want to get on with my life as life is differcult as it is never mind throwing in marriage breakups and illness in to the equation.

anyway onwards and upwards hope your pain eases and well done for getting out and getting birthday presnts and having a lovely meal i am sure they will know how diiferecult that was for you.

love sam

[ChunkyMonkeysMommy]

YUP!! My husband is always nagging me when I clean the house, telling me to take it easy and not try to do so much at once or I'll pay for it. Of course, it doesn't help that he's always right about it. But, when you have a day where you actually feel halfway decent, SOMEONE HAS TO DO THESE THINGS! And I want to take my monkey to the park, or chase him around in his walker, get down on the floor and play blocks or read books with him, even if I can barely get back up on my own, lol. Life, MS gets us down, but we still have to live it! :) I know it stinks, but I just try to make the best of the good days, then prepare myself to deal with the bad ones. What else can we do? You are not alone, for sure.

[uk2]

hi chunkey,

i call my middle girl chunkey monkey just like you do your boy lol i love the fact i can do these things and i am pushing myself more since i got my mobilty car but its hard with 3 girls and on my own, but i guess if i was not ill i would be working all the hours so i am blessed in a way dispite the pain.

sam