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Posted 10/25/2011 2:55 PM (GMT 0)
Good morning everyone :)
I'm a returning member after a long absence, although I still remember a few of the names here. I thought I'd pop back in the forums to keep myself informed of any new changes in the scientific field, and also to get tips from members. No one knows fibro pain and coping like another fibromite, right?

I do have a question about fatigue. I used to be at the max on 50mg of amitriptyline but I told my doctor that it was too much for me and I had a hard time functioning the next day. Since I was taking it mostly for my facial pain, when it eased up I opted to reduce my dosage. I have been at 25 mg now for well over a year. In the past couple months I have had to cut my pill in half, or I can't get up the next day. I've tried not taking it at all, but then I can't go to sleep until at least 3 or 4am. With little ones to send off to school at 6:30, that is not an option. So I take it at about 8 to be able to sleep by about midnight.

This was working out fine until a few weeks ago again. Even with the decreased dosage and taking it so early, I still have trouble getting up in the morning and feel very groggy.
Now the scariest part; about 3-4 weeks ago, by oldest ds was sick. A few days after, I was driving to work, felt totally fine until about 10 minutes into the drive (it's mostly all single lane highway) and I fell asleep at the wheel. Thankfully I only started to swerve and jerked to attention. It sure scared me! I continued on my way to work, but again, my eyes were extremely heavy and I felt like I could doze at any time.

I thought I was gettign the flu from my ds, but no. Since then, I have a really hard time driving. I start to fall alseep each time I get behind the wheel. Not driving is not an option. I live out of town and I have to get to work. opening the window, cranking the radio, none of that really works. I am aware of when my mind starts to shut down and my eyes get heavy, so I will myself to stay awake. This will happen in the morning getting groceries, late afternoon goign to work, anytime at all. And feel rested most times by then, especially in the afternoon.

Does this happen to you? Is it another aspect of fibro? my meds? what can I do?
Posted 10/25/2011 3:08 PM (GMT 0)
Hi, Mamanan and welcome back home!  You might want to try to cut the pill again!  I took a Vicodin last week and cut it into 8 pieces and only take what I can that doesn't make me drowsy.  I know you WANT to be drowsy at night but the medication just might be too much for you now.  I'm older and find that medications affect me more than they did when I was younger, too.  But this is just a thought.  Perhaps you can find the perfect amount for you to get the sleep  you need and to be alert the next day.  Also, try getting up a little earlier and do some gentle exercises.  That always gives me more energy.

 

Sherrine

Posted 10/25/2011 3:46 PM (GMT 0)
Hi Sherrine, I hope that you are doing well? Maybe not if you had to take a Vicodin, if not I'm sorry to hear that. I remember that you take very little for pain other than Tylenol and Ibuprofen.

Get up earlier than 6:30? I think not, lol. I was never a morning person, and even less so now with that pill. It takes me about 1-2 hours and lots of black coffee to feel human again after I get up. I do my aerobics and yoga after the kids are in school when I have time.

It makes sense that it is the meds affecting my driving, I have a hard time swallowing that it is another side effect of fibro. I did want to see if anyone else had come across that. I would think the amitryptiline would have worn off by then, especially since I feel fine until I get behind the wheel, but maybe the autopilot of driving really bores me that much. I didn't know that tolerance to meds changed as one got older.

I can try to play a bit more with the dosage, to a point. Thanks for the idea. I do have to drive home at about 11pm after work, so I can't take it too much earlier than that. And I have to make sure I can sleep too. I've been putting off going to the doctor b/c I think it's as much a guessing game with him too, but maybe he can suggest something else to help me sleep.
Posted 10/25/2011 4:53 PM (GMT 0)
Hi~

Great to hear from you again. There are medications you can take to counteract the sleepiness from medications of conditions that make you very drowsy. They are used for condition like narcolepsy, chronic fatigue syndrome and the side effects of narcotic pain medication. I took Provigil (modafinil) for a long time. Only problem I had was my insurance company upped the copay so high I couldn't afford to take it any more. So my doc switched me to adderall and it's working fairly well. It's an amphetamine medication used for ADHD as well as narcolepsy. You do have to be very watchful with this one as it has the potential for addiction. On college campuses it's known as the "study drug". Pretty sick, huh? I don't tell anyone (except hubby) that it's in my house and then I don't have to worry. Plus I have a lock box for my medications.

Hope you find some help. I had the same problem driving to work as you which is why I went to my doctor for help.

Chutz
Posted 10/25/2011 5:41 PM (GMT 0)
I have to keep a big bag of smart pop in the car (it contains a lot of little 100 cal bags of cheddar pop corn).  No window open or radio on is going to keep me awake, the only thing that works for me are salty snacks.  So rather than 500 cal. bag of doritos, I get the smart pop individual bags.  There is a lot in them and can last for a good distance.  That is the only thing I have found to keep me awake while driving.  Or I have to pull over for a power nap. 

It is scary how quickly the sleepiness comes on.  At the first signs of being tired like that I need to take action.

I also had a sleep study done and wear an oral appliance for sleep apnea.  The falling asleep while driving has improved, but I still do get it.  I don't go anywhere without popcorn and water in the car.

Good luck and stay safe.

Posted 10/25/2011 5:46 PM (GMT 0)
Hi back Chutz :)

I was thinking that I may have to go the route of another medication. Gettingby was also on adderall, wasn't she? or ritalin?
Do you have to take it daily, or when you think you may need it? And if so how fast does it work?

I'm very leary about taking another medication. Since I got that bleeding ulcer from the Naproxen, I have had anxiety about meds. I hardly ever even take Tylenol anymore, and never Advil. I even more rarely take my Tramacet, I think my small pack is actually expired now. It makes me high, and my anxiety shoots right through the roof, increasing my side effects and scaring me even more. The benefits pale in comparison so I just call in sick and go to bed when I am that bad now.

I think a call to the doctor is in order. Except my anxiety about meds makes me not trust him when it comes to that... stupid uh? I like him for everything else, and he is the one that believed in me and got to the bottom of my pains so long ago.

Another reason I am so scared of the tramacet is b/c of saratonin syndrome. He assures me that my amitriptyline is such a low dose it won't affect it.
That was one of the reasons I stopped coming here too. I figured a little knowledge was very dangerous combined with my new anxiety, lol. Everything is such a balancing act, isn't it?
Posted 10/25/2011 5:50 PM (GMT 0)
Hi Susan, nice to meet you. I do drink water, which helps some, for a short time. I'll try the snacks too, especially something like you said that can last a long time.
It IS very scary how fast that sleepiness comes on.
Posted 10/25/2011 6:18 PM (GMT 0)
Hi welcome back, Mamanan!

I have found that my fatigue has been helped by taking the sublingual B-12.
My rheumy reccommended the high dose of 5000mcgs daily for me and I've noticed a big differance. B-12 is essential for energy production.

There are days that my muscle relaxers (flexeril) would really be helpful for taking the edge off of pain, but if I'm going to be driving, I can't take them because I'm too drowsy.

Sorry that you are still dealing with that horrible facial pain, I remember that it gave you so much trouble. Hope that will someday just disapear for you!

hugs, Robin
Posted 10/25/2011 10:11 PM (GMT 0)
Yes, it would happen to me all the time on the way to work. It got to the point where I had to wake my husband up (he works from 10:30 to 7:00) so he could talk to me so I would not fall asleep. On the highway it starts to happen and I get really scared. Since I have been off of work, I don't have this problem. I take Nuvigil, it's still not enough to keep me awake. My doctor wants me to take the highest level that I'm on, and half of the smallest dose. I hope you are able to have get that resolved, it is scary.


Hugs,
Monica
Posted 10/26/2011 1:42 AM (GMT 0)
I also have that problem. I'm also 40 mins. out of town on a rural highway. I'm only taking 10 mg amitriptyline. So usually the times I'm falling asleep are when I've not gotten enough sleep for a couple nights in a row.

Do you have time in your day to take a nap? If you are working until 11 and getting up at 6:30 -- no wonder you are tired and falling asleep! I have to get up at 4:45 am...but I can usually get to bed about 9 pm.
Posted 10/26/2011 3:28 PM (GMT 0)
@ Susan, last night I brought some roasted pumpkin seeds I made on the weekend, and they did help! When I saw I was starting to nod off, I had a nibble and they kept me occupied enough to wake me up for a few minutes. Nod off and repeat again... I think I'll buy a bag of sunflower seeds for my drive today. Such a simple idea, yet so effective, thank you :)

@ crazykitty, hi Robin! So good to hear from you; your posts are always so kind and your upbeat attitude so inspiring :) When I first started having blood work done, my doctor said that my B12 levels were normal, maybe it's worth while to get them checked again.

As for the facial pain, thank you so much for your kind thoguhts. It is much better now, I still have some, but not at the excrutiating levels it was at. I had another appointment last year with a neurologist who stopped listening to me during my exam and said a firm NO to trigeminal neuralgia and told me to see my dentist. I went to the dentist who said I do not have TMJ. I have once again developed tooth pain (even in the socket where I had that tooth pulled) and the Xrays are clear. I also have electric type pain now. I still believe that it is atypical facial neauralgia, but since it doesn't bother me enough to take anything for it at this time, I'm leaving it alone. If it gets worse, I will be going to the city to the Mayo Clinic for answers.

@ hopegirl, hi Monica. Do you take a sleep aid or medication that makes you groggy as well? With the amount of responses I got, maybe sleepiness at teh wheel is common for fibro after all.

@ Namian, I did make time for a nap this morning after the kids went to school, lol. I don't usually though, no time and I seldom can fall asleep. My dh has been away for 2 weeks on business, so the lack of sleep is catching up with me right now. When he is home, he is available to get up at least once or twice a week so I can catch up a bit.

I can compare this sleepiness to when I was pregnant. I feel fine one moment, and the next it is overwhelming and my eyes want to close by themselves.
Posted 10/26/2011 4:00 PM (GMT 0)

Hey mamanan, this happens to me all the time now.  I was DX'd in March of 2011, and started on Cymbalta 30mg daily.  Rather than move from 30mg to 60mg after 2 weeks, I opted to stay at 30mg, and use Tylenol / Advil (Anaprox now), so that I didn't have any more of the nasty symptoms of the drug than I needed.  Isn't funny how taking some of these meds. makes you feel almost worse at first?  It's like those commercials that give you 101 symptoms that taking the drug can cause, and you think... so why am I taking this?  Then you have a really bad day of pain/fatigue and you think... well it can't be any worse than this... but I digress.

Yes, falling asleep at the wheel... this really became a problem this summer for me.  We go to the cottage every weekend, and often I would volunteer to drive back on Sunday (my husband drove on Friday nights, so I though I'd share the driving).  Numerous time when we'd get on the highway, or on the 2 lane roads, I'd start to get the droopy eyes, then my foot would start to either pull of the gas... or worse push on it.  I'd try rolling down the window, turing on the AC full blast, turning up the radio, and even smacking myself in the cheek to shock myself into being fully awake.  I ended up just pulling over, getting a coffee, and in some cases asking my husband to take over for fear I'd drive us (and my 3 year old in the back seat) off the road.  What's funny is that it only started this summer, and seems to happen mainly on the highway... maybe the menontenous skyline and horizon.

I should mention that I've recently found out that I may have pernious anemia (waiting on blood test results), which stems from a chronic malabsorbtion problem with vitamin B12... my level is 130... less than 200 is considered chronic deficency.  I'm hoping to start B12 injections soon... but all this with the sleepiness at the wheel started about the same time that my B12 was identified as being chrically low... so that could also be contributing to the fatiuge.

In any case... my adivce is let your hubby do the driving as much as possible... and if not... the snacks and coffee might be a good option... at least it will be keeping your hands and mouth busy, so you might have less chance of jsut sitting at the wheel and getting sleepy.

Good luck!

Kristo 

Posted 10/26/2011 9:19 PM (GMT 0)
This happens to me all the time! A lot of my meds make me drowsy and I've had this problem for a while - when music stops working I find that audiobooks or something that my mind has to focus on helps the best.
Posted 10/27/2011 8:12 PM (GMT 0)
Anyone who has problems falling asleep at the wheel really should be tested for sleep apnea. Daytime sleepiness is a hallmark of sleep apnea, and apnea can also cause fibro-like symptoms. It is very underdiagnosed in women. So talk to your primary care doc about a referral to a sleep medicine doctor.

Snue, did you have a follow up sleep study once your oral appliance was fitted? Sometimes if they are not fitted right, or if you gain weight, they don't stop the apneas and you are still sleepy.
Posted 10/27/2011 10:54 PM (GMT 0)
I don't think sleep apnea is the case with me as this sleepiness has started just in the past few weeks. And I'm only sleepy when I'm driving, unless I've had only a few hours shut eye between work and gettign up with the kids.

Kristo, you have problems with B12 as well? Since this came on so suddenly, I think I really had better get checked out.

Thank you all for your replies!
Posted 10/28/2011 3:37 PM (GMT 0)
Hey mamana...yes I've had B12 deficency problems showing in my blood work for about a year now... started at 175, then 156, then 130. I just had it tested again this morning... I've been taking 1000 units of B12 each day for about a month to see if it increases. I was also tested for pernicious anemia... which means that your body isn't able to absorb B12 through your gut, so you have to take B12 injections. Will let you know when I get results. As for your B!@ problem... get it checked for sure... if you let it go you can have some pretty nasty symptoms, and some are irriversible.

My doctor up'ed my Cymbalta to 60mg this morning too... uggh. I've been having some pretty wicked pain lately... they can't figure out if it is chest wall pain or bone pain. I'm going for x-rays and a bone scan... just have to set-up the appointment with the hospital.

P.S. As for one of my solutions (in my earlier email) about smacking myself in the face while driving and falling asleep... I'd use that one with caution... especially if you are in traffic or there is someone in the passenger seat! My husband was like... "O my Gawd... what are you doing and are we going to die!?!" :)
Posted 10/28/2011 4:22 PM (GMT 0)
Just want to add my .02 cents.

I have malabsorption issues as well. First it started with the b-12, then the iron and then the vitamin D.

Now here is the issue. Pernicious anemia is low iron due to malabsorption of b-12 but, you can (I do) have absorption issues with b-12 and not have pernicious anemia. I have iron deficiency, not pernicious anemia. I had 3 (yes 3) doctors argue over this. Apparently the blood cells look different if its anemia (large and flat) rather than iron deficiency.
I just want everyone to know this because if it is a true iron deficiency and not pernicious anemia it will not go away just by getting your b-12 levels up. It took several years, lots of blood work and 3 doctors to figure this out. And a transfusion for me. On top of all this I still have the b-12 and fibro issues to work out. That makes for one very, very tired person and yes, falling asleep at the wheel was one problem I suffered with for quite some time.

Another thing I would like to add is the b-12 levels. The acceptable level for b-12 in the usa is 250-900 and most other countries its 500-1200. Most of us that have a deficiency hover around the 150-250 level. So I ask my doctor(s) "how do we know what level works best for us as an individual?" They could not or would not answer me. As long as its in the range (according to our lab) it is good. Well I do not believe that and neither does my endocrinologist (who was not involved with original diagnosis). She likes B-12 levels to be around the 700 range for optimal health of a woman dealing with health issues. So, even though my levels now stay around 700 (with shots) I cannot go off them. As soon as I do my levels start to drop and so do I.

It took several years to finally get it all fine tuned and the firing of one doctor that should have known better (she was a hematologist). Now, I can handle the fibro/RA illness much better because I am healthier on the inside.

I hope this helps someone that has iron, b-12 issues. Make sure your doctors are keeping you at levels that work best for you, not just the acceptable levels created by the labs.

sorry if I got a bit off topic
Posted 10/31/2011 1:07 PM (GMT 0)
Hey Denita, thanks for the post on the B-12/iron deficency issues... I honestly feel that 85% of the time I could litterally just stop and pass out right where I stand, but being a full-time working mum of a busy and active 3 year old son... not always an option. I should have some test results either Tuesday or Wednesday (on the antibodies for the pernicious anemia)... will post when I hear. How low did your B-12 get?... my last test was 130, but I bet this last test I had done on Friday will mark it as even lower based on how I've been feeling.
Posted 11/2/2011 7:57 PM (GMT 0)
my b-12 levels only (ha, only) got as low as 211. but have been up and down near this level for quite some time before we got it all straightened out. What finally worked was being treated for the iron deficiency. My levels were at 6.68 and they should never be below the low normal of 11.5. The doctor could not believe I even had the energy to walk across the room let alone keep a full time job. I guess when things go bad slowly you just adapt until one day its just not possible to keep going.

The harm to me was the fact that the hemotologist was treating it as pernicious anemia and trying to get and keep my b-12 up to prove it. All the while my iron levels were dropping but not being checked. (make sense?) It was like a viscious circle going round and round between the 3 doctors and no one really doing any one good thing.

Then when I finally got that all straightened out and started to feel better things started to not go so well, again. My iron levels were ok (hover around a 10, can never get it up to the 11.5) and my b-12 levels were in the 700's but my Vit D level was way low. So, now I take D every week along with iron 3 times a day and b-12 once a month via shot.

All these are malabsorption issues I suffer with from a gastric bypass I had about 9 years ago.

What I have to stress the most is to keep going back for the blood work. keep going until ALL your tests come back in the normal ranges and then go back and make sure they stay there.
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