Exhausted and not getting better

[essdipity]

Hi everyone. It's now just about a week since I got home from a wonderful trip to France. It was booked last fall, well before my diagnosis, and even afterwards I wanted to go very badly. I'm SO glad I did, because realistically I won't be doing anything remotely like that again. That's downer for sure.

I'm so horribly tired, and more than jet lag tired. Even on the second day of the trip I realized it was going to be too much for me. But despite all the pain and paresthesias, I was on a very full schedule every day. I ignored things as best I could. Now, though, I can't ignore them.  This is all complicated by my age, as well. Compared with most people here, I'm practically Methusaleh's grandmother. But last September, just before this last flare started, I took a rather similar and grueling trip and all this didn't happen. I wasn't tired during the trip and I wasn't in pain. There wasn't a part of me that longed to be home because things were so hard. When I did get home then I was wiped out for a long time (2 weeks), not even thinking it might be MS fatigue. Now I wonder.

I wasn't in pain afterwards then, either, and now my legs ache so much, constantly. I walked a huge amount, but you'd think a week of recovery would take care of that, wouldn't you? It hasn't. My legs feel as if they weigh a ton each.

This is all made worse because my sleep is terrible and has been for years and years, going back to the beginning of my symptoms. I hate taking Ambien or Lunesta but I have to, and even then I get only a few hours' sleep. A few weeks ago I had an overnight sleep study because of lack of overall sleep, especially restful sleep. I don't know how anyone can sleep hooked to all that junk, and it was almost impossible for me. My report says I slept exactly 165 minutes! That's hardly any. My deep sleep (REM) stages were pitiful. I don't have apnea or snoring or restless legs or epilepsy or any of the other stuff often seen in these studies. I just have poor sleep, and I'm not worried or anxious or depressed or anything else that often causes insomnia.

Yesterday I went for a follow-up with a sleep specialist doctor, who was extremely nice. She verified everything I'm saying here. I have to keep a sleep diary for 2 weeks, though she doesn't expect that to be too helpful, and after that I think she will prescribe something stronger.

Many of us here have severe fatigue and sleep long long hours. I'd love to do that just for a few days. I think if I took one of the energizer meds mentioned I'd never sleep at all, but still I'm exhausted. I don't know what's causing what.

This post is partially just a rant, so thank you as always for listening. That means a lot to me. But also, I've been trying to look into whether chronic insomnia can be a primary effect of MS, and I haven't found much. I know it's often secondary, from pain or depression and other related MS symtpoms, but I don't know about primary. If that's possible, I'd assume a specific lesion or lesion would be causing it, but maybe sleep is too complicated for that explanation. Does anyone know more on this subject?

I am trying to get an appointment with my neuro, who knows in general I have sleep problems, and doesn't seem too interested. His secretary has been away, or some such. I need to see him anyway, especially to be given a replacement for the disastrous (for me) Copaxone.

So at the moment, woe is me. I have so many interesting things coming up this summer and I want to be there fully for them. I'll be stymied for weeks by foot surgery in July, but this isn't even June and I want to enjoy it!

Guess it's time to end the pity party. I hope everyone has a good weekend coming up, especially if you observe Memorial Day.

Wretched ess

[ohwild]

to to get some rest hunny, that trip has taken a lot out of you. i'm like quix in the sleep respect unless im in pain, its not unusual for me to sleep for 14 hours after an 8 hrs work shift the longest i slept for was 20 hrs but i did have a bad headache at the time, Amytriptiline is a good one for sleep, i had to stop taking it because it made me so sleepy i couldnt concentrate on work,
good luck
CJ

[Deb61]

It's a no wonder you came back tired!  A major trip like that may take someone without MS a week to recooperate--much less a person with MS that has gone off her Copaxone and is having major sleep issues!  I know that sick-tired feeling and hate it.  

I like Julia's suggestions.  The Provigil has no effect on my sleep if taken before noon (and I'm super-sensative to medicines).  At first, for a couple of days, I had trouble sleeping, but it didn't take long for me to get back on  routine.  I took Amytriptiline for years for fibromyalgia (that my neuro says I never had) and I slept like a rock.  

You're missed when you're not here--I'm glad you're back!  I hope you get over that wretched, icky, tired feeling ASAP.

Deb

[Fluffysmom]

I also struggle with lack of sleep.  I found medication for my restless leg syndrome, but  I still have to get up to go to the bathroom a few times a night, and it is often difficult for me to get to sleep in the first place. Ambien sometimes helps for about four hours.

I'm sorry your trip to Paris was so difficult for you, but am very happy that you got to go.  Maybe as time goes by you can forget the bad and remember the wonderful part.

I hope that your pain and fatigue let up soon, and that your sleep specialist finds a way to help you get quality sleep.  I know how much worse things are for me when I don't get enough good sleep, and totally sympathize with what you're going through.  

Hang in there, and enjoy every bit of June that you can.  I hope your foot surgery goes well and you heal quickly so you can enjoy the rest of the summer.

By the way, you sound younger than a lot of us with all the gadding about you're doing!  

Kathy

[Tahiri_Veila]

I am sorry about the lack of sleep.  I struggle sleeping as well (although not as bad as you, I think)  I have notice that even if I cannot sleep if I just lie down and rest (usually with my eyes closed), it seems to help a little.  
At least you had fun on your trip.
  Tahiri

[Quixotic1]

Well, basically you overdid it and now are paying (far too much in my mind) the price.  I went through a similar thing right after my diagnosis.  My sister is my overall caretaker as far as driving, and major stuff and also does the same for my elderly parents.  When she broke her upper arm in two right after my diagnosis, I have to drive ahd hustle every day for two weeks.  When I crashed it was for at least two weeks.

Now, I have hypersomnia.  I always sleep 11 to 12 hours and 16 is not uncommon.  Sleep disruption is a primary effect of MS and it can go either way.  Frankly, I perfer mine.  To be exhausted beyond belief and NOT to be able to sleep is horrible.

I am glad you are seeing a sleep specialist!  Bug her until you get something that lets you sleep.

Sending you the sleepiest thoughts I have, Quix

[essdipity]

Thanks all of you for your kind comments! This forum is really the best. I am making note of each suggestion and will discuss each option thoroughly with the sleep doc when I see her June 19. I also now have a neuro appt. on June 6.

I'm trying to get things done here, but it's uphill all the way. I can't lie around forever, since my pup is rotten at doing laundry and errands, and both are piling up so I'm making myself do them. By mid afternoon it's all over. I can hardly move.

I've been too beat to participate much on the forum. The spirit is willing but the flesh is weak. However, as Scarlett O'Hara used to say, tomorrow is another day. So maybe soon I'll have some energy.

Take care, all.

ess

[julia111]

I'm so glad you had a wonderful trip to France, but am so sorry you are having such a difficult time now.

I joined this forum a few months ago after I had the onset of many "MS Like" symptoms.  Everyone has been so nice and helpful to me and despite the fact that I was recently "re-diagnosed" with fibromyalgia I love hanging out here!

I am hoping that maybe my 2 cents might help you you some!

One of the "theories" about fibromyalgia is that we don't get enough REM sleep.

I have been on a low dose Amitryptiline 20 mg for a few months now and I sleep great through the night.  

It is one of the older drugs that is used at a much higher dose to treat depression.  Now they are thinking that at the lower dose it helps get you into - and keeps you in REM sleep longer.  It also helps diminish Neuropathic pain.  

Lastly, it is very affordable - about $5.00 / month!  I'm not sure if it is used for MS - but might be worth a mention to your dr.  

Also, I take Provigil 200 mg every morning for fatigue.  WOW!  I tell people it has given me my life back!  

Don't misunderstand - it's certainly not a cure - and I still have bad days and lots of "nasty" symptoms - but I have the energy and focus I need to care for my family and do some work at home for our family business.  It also has given me the energy to get back into a "moderate" exercise routine.

I know there are others on this forum who will attest to its benefits, including resident Doc Quix - so it's another one you may want to consider.

So, as one of my friends recently summed it up for me:  I take a pill in the morning to wake me up - and one at night to make me sleep.  Of course there are other meds involved as well - but these two have been a great combination for me!

I'll be thinking of you and will pray you will find some relief VERY soon and get to feeling better!

Best wishes,
Julia

[cjacks]

Hi Ess

It is so good that you were able to go to France!!   I am sorry you're under the weather ( pitiful phrase) from it .  And it will get better.  You know I feel at times like age is a complication for me too.

I agree sleeping is huge.  I don't do it well . Ambien is adequate , but I can only take it 1-2 x a wk . I have found that flexeril works really well at keeping me asleep ( side effect - helps spasms and stiffness :)   )   .   Valium also helps.  I switch everyday so I don;t  ever have to up the dosages.

SL   My mother takes resteril . 15mg and it doesn't seem to work that well , Since its a narcotic , right ,  I was nervous about them upping it , she a little unsteady .  If you don't mind what is your opinion on the dose.  And you don't feel groggy in the a.m. ?

I hope you feel better real soon   HUGS

Jo

[Heather3418]

I wish MedHelp would hurry up with the "edit button," dern it.  I meant to type we are NOT in our twenties anymore.  Geesssshhh!

Heather

[Heather3418]

Let's admit it girlfriend, you did alot during your travels aboard.  Add in the fact that you have MS and just recently went off of a DMD, would make your body understandably tired.  No matter what your age.

Since you do have MS, it may take more than a week to recover from this very busy trip.  I know what you mean about the sleep.  I would give anything to fall asleep quickly and STAY asleep, like the normal person.  But no...I am restless or I have yet to go piddle one more time during the night and every little noise wakes me up.

My mother once told me that after you have kids, you never sleep the same as you did before.  NEVER!  Lord my kids are in their 30's...I don't have to keep an alert ear peeled for every little movement in their cribs.  When am I going to sleep again?

I do hope that your doctor finds you a medication that will offer you a full 7-8 hours sleep.  It seems that is what your body is screaming for.  I feel for you, Ess.  I would give anything for just one night of long, restful sleep with no interruptions.  I've come to believe I will have to wait for that when I'm dead.  Cause sleep is not going to happen while I am still breathing.

Continue to rest up and give yourself more time to recoup from your trip.  You and I are in our twenties anymore, you know.  It DOES take longer to get back into full mode.

I hope you feel better soon girl.  Keep us updated, will you?

Big Hugs,
Heather

[sllowe]

p.s. Get the full dose if you can, you can always taper and do the 1/2 dose after your on it for a bit. . . they have a website on it too if I remember correctly. . .

[sllowe]

This stinks.  And, like you said, lack of sleep makes it "so much" worse than  it would be.  I wish I could say it will pass, but I can't.

I'm been sleeping well lately, and still wake up this way. I had 1 morning in the past 3 weeks that my body and head actually felt like it could get up.  It's horrible.

On another note, when I wasn't sleeping well at all, it was so much worse.  My Neuro prescribed temazapam (generic for Restoril).  It was truly a MIRACLE!!!!!

I'm telling you this because I would wake up the next morning and feel so awesome.  Refreshed, etc.  My 1st though was "HOLY Cr ap!!! Is this what you are actually suppose to feel like in the a.m.? I had not clue as it had been so durn long - like years! And also, I never woke up once during the night - it's a wonderful feeling.

Tell the Doc, maybe it's something that would work for you.  It's an oldie, but goodie in my book.

When you go to the Doc?
-SL