fatiuge is ruining my life!

[uk2]

Hi All

Last yr i went through an awful time with crippling nerve pain and spasms this has gotten alot better why i dont know!! at the moment i am dealing with all consuming fatiuge (sorry spelling) not just tired but more then that i cansleep all night then cant wake in the morn to help my kids get ready for school my husband who lives somewhere different as we are separated has to drive back to help me with the kids this has been going on mths and i thought it would get better but it has not, my friends say i should just push past it and its better then having pain and i am glad its not pain although i do get bad bouts of this still and i find myself angry that i cant push past it but its different then waking up tired? does anyone understand that?

My middle kid said to me yesterday "your always tired mum you dont do anything" and their right and its making me depressed plus there broken up from school now and i used to sleep till 2 pm each day awful and embarrasing but true i dont know how i will cope in the holidays!!

i thought about going to my gp but she will think i'm mad as last yr i was on medication to make me sleep lol cause of the pain i have stopped that since jan this yr all the requip,lyrica,clonazpam,temazapam,diazapam all stopped only on fenntanal pain patches an opiate 100 which i change every 72 hrs.

i have awful dreams and dream all the time i sleep which i think causes me not to be sleeping normally if that makes sense.

i dont really want to try anymore drugs as i had a bad experience with a few and had a psycotic episode on the requip and lyrica and patches combined. but neither do i want to carry on like this.

any advise welcome.

sam

[uk2]

Wow thank you all for your support it means so much to me! I think i will go back to the drs i hate going back on more meds but i think it might have to be done i guess i can come off them if its not working. I'm worried it will make me not sleep and that this is just another form of not sleeping if that makes sense as i never seem rested after sleeping. I guess it was not such a problem when the kids were at school but now i am terrified how i will cope and if i dont get to rest i get so emotional and on edge. I am not Dx so dont know if this is MS related.

Tammy
Thank you for you kind words and prayers they mean the world to me,your so thoughtful even though your going through hell yourself.

Heather
Yes i've read about the dreams from the patches they were very bad when i was on requip i dont take dopamine agonist well and did improve for abit but then came back in force.

LuLu
not sure provigil is available but i will ask my GP my only worry is a drug reaction again or more side effects.But i cant go on like this, but i do need to stop beating myself up and stop worrying about what others say as i know my body and if i need to sleep i need to sleep.

Pat
Thanks pat i guess with the holidays coming its made me think how am i going to cope but i will,i dont think the kids mean to say what they say and i know they love me dearly.

shadow sister
I agree they dont understand and maybe i should explain it more but i dont think even if they wanted to understand they could as its so hard to understand unless you have lived it yourself.I am not dx so this might not be MS fatiuge but my limbs feel like concrete and everything even breathing is an effect,still i will go to the gp my middle girl is off ill at the moment so when i'm better i'll have to get a babysitter and pay a trip to the dr i am going on holiday this saturday i so hope i can cope with that just me two of my children a friend from church is having the other my friend is taking me.

debtea

Thank you it helps just knowing others are going through this.I so hope you can get some help.Good luck going back to work and take it easy and listen to your body.God Bless

[debtea]

I'm so sorry you are going through this.  I wish I could help but I am going through the same fatigue issue.  Finally going back to work after three months and I'm scared of the fatigue interferring!  Please know that others are in the same boat and are supporting you.  I agree that you should return to the doctor and possibly adjust meds.  
Hope you get some relief.  I know how hard it is with kids.  
Good Luck and God Bless!
Debtea

[ShadowsSister]

Hi Sweetie, you have been given some really good suggestions and I just want to add my support.
About your "so called friends" guess that sounds quite harsh, but them telling you to "just push though it" tells me they aren't listening to you. The "Fatigue" that comes with MS is different than being tired. Our bodies are too heavy, our legs have 10pound sacks of potatoes attached to each of them... Tell them to strap 10 Lbs to their legs than try to get through a regular day. They'll get the message very fast... MS Fatigue isn't something we can "Push through"That makes it so much worse.
I agree with Lulu that maybe you can get your medications changed that might help, but most of the time the fatigue just has to run it course, rest as much as you can, STOP Beating yourself up. You didn't cause the MS. There is NOTHING Fair about it... But you will get through this and we will all be here for you so you aren't alone and we do "GET IT"...
Sending you huge huge Hugs{{{{{{~!~}}}}}}} filled with my Love, don't be silly, of course they will make it across the vast ocean... just check out the breezes blowing by you, they are carrying them to you every day  ;-)
Also sending you my Love... ShadowsSister  (DJ)

[Eyesnlegs]

Oh San hun is there no end to this for you. I agree with Lulu you need to go back to your GP. I have just woke and seen this post - I always seem to be late - lol

You cannot push past the fatigue if you do it will come back and bite you, I know exactly what you mean about waking up in the morning like that. I had a discussion with my husband only last night that in the last 20 years we have changed places! He used to be the one who could sleep the clock round when we were young, I was the one who managed on very little sleep. Then the kids were born, I had my first bout of ON and it was downhill from there. Now I struggle out of bed and on some mornings I just can't make it at all and when I do I am 'poorly' most of the day with pain, dizziness, etc.

So heed Lulu's advice and go back to your GP. Also take a look at the MS Trust website (this is used by UK medics too) there are some free publications and one of them is about Managing Fatigue. It was the first thing that the MS Nurse gave me last week and has lots of good advice in it that make sense.

I am also going on a fatigue management course in September so ask your GP about this even with no dx yet it is still a real sx. My MS nurse said that she believes that if the only sx someone has is fatigue it can still be very debilitating. Add that to all your other health problems and a house full of youngsters and is it any wonder you are struggling. So be very gentle with yourself and take care.

My kids are grown up now and I have always been grateful for that but just bear this in mind. A friend of mine lost her sister when she 47 years old, she had PPMS and died of pneumonia. She left 2 sons behind who the family are very proud of, but she told me last week that those boys (now men) would rather have there mum back tired and in a wheelchair than be without her. So remember that the kids are just being kids and they can say some really cruel things without even knowing that they are cruel.

PM me anytime sweetie if you need to chat.

Love
Pat
x

[Heather3418]

Hi Sam,

My son in law has Lupus and he uses the Fentanyl patches and he says that they cause him to have strange, very graphic dreams.  This may be a side effect of the patches.

Congratulations to you for going off all those medications.  That is some acheivement.

I have been through this kind of fatigue and it was BAD.  And the biggest problem was that I could not sleep or would awaken just as tired as when I went to bed.  It lasted for about 4 months.  I think it was a part of a relapse.  I still have days, off and on, of fatigue and I mean heavy fatigue, but for now, I can relate it to how much I have done in the days before the fatigue set in.  Too hot, too much exercise, awake too long, etc.

It still pains me to know that you are trying to raise those kids without your husband there in the same house.  Sam I don't know how you handle it.  If it were me, I would be so afraid.  God how I pray thiings were different for you.  And I DO keep praying.

I am sending all my love and all my understanding,
Heather

[Lulu54]

Sam,
You already know what you have to do ---- go back to your doctor and have this discussion there in the very real, honest terms you just gave to us.  You may find that a slight adjustment to your meds can make a big difference in how you feel.  

do you have Provigil in the UK? I know several people here have had very good success with managing fatigue by using provigil.  This might be a good option.

The people who advise you to just push through this really don't understand the scope of this disease.  if only it were that easy.  I know I need to get up and move, but find that when I do I really need to sit down and stop.  Its a vicious cycle and one that we have little control over other than waiting it out.  

feel better,
Lulu

[Tammy826]

I know this has to be so hard on you with children! Thankfully my children were mostly grown when this hit me so, I don't know how you do it! Its a strange kind of tired too! For some reason I usually feel better 1st thing in the morning (more rested??) but then its downhill from then on. After lunch I try to lay down, I can never go to sleep & nap but just lay there & rest. I have trouble sleeping as my muscles seem to kick in worse as do the twitches. I take requip & zanaflex & if I'm not mistaken I think one of the side effects of requip is weird, vivid dreams, but I'm not sure. I pray youur feeling better soon! I know its deprssing & you feel so alone (like no-one understands you) but if you don't see a counselor then mabey you should try it, if nothing else to get all of this out. I pray God will give you the grace & comfort ( & oh yes....energy!!!!!) you need. I feel so bad for you because I have 4 children that I raised alone & can't imagine doing that feeling like this! I  You have such a sweet spirit & I just know Gods got a purpose for your life! May God be with you & hang in there its got to get better sometime even though yesterday would have been nice huh!