Is it Fatigue

[knutcase]

One of my symptoms is more annoying than others. I rate them naturally.....painful annoying or embarrassing then rate them in the categories...

This one is a bad one. I feel extreme pressure in my head. Sometimes it is painful...bad....sometimes not makes me very dizzy. The world seems hazy and far away. I act stoned and drunk but I feel like I am struggling under water to do anything.

Feels like 20 pound weights on all of my extremities. Sometimes lasts a while sometimes comes on fast and hard. If I am sitting usually I remember my head slamming into what ever head rest I have...(my lift chair.....or in the car) Then I am out cold. I dont exsist. I have no awareness. There is nothing of me......I am gone. I awake up to 4 or 5 hours later. Hard to wake up.

Extremely weak and tired. Miserable. Agonizing pain since I cant move when I sleep and have back and hip problems I shouldnt stay in one position that long.

This happens if I fight the sleepies as I call it. Being tired or run down and not napping when I want.......it isnt always easy to do as a single mother of 2 living with my parents.......they believe napping is the epitome of laziness.

My mother says I wouldnt be so tired if I would get up moving and get my blood flowing. Documented with cardiologist and ER when I lay down my heart rate drops to 45 beats per min...

.So I lay down I sleep. Sometimes I am aware and cant respond. I cant move even my hands or arms. I want to. I fight to.....this is napping with the sleepies but not wanting to it happens.....different that the one mentioned above.

Mom says get off my meds I take too much meds she doesnt believe is ness......but when I came off of my meds for 2 days a while back I was basically nothing more than a drooling twitching, shaking, spazzing, incontinent veg. I had almost no ability to speak clearly.....but my mind was there I knew what I wanted.....I hated it......I am clostrophobic and I was locked into the worst nightmare of my life......a body that doesnt respond.....it was the same as being tied down.

I am on Lortab, mobic, tizanidine, zofran, gabapentin, sensemet, baclofen, metformin, prilosec, simvastatin, and Calcium...They want me to add Krill oil and baby asperin to it (not covered by insurance....the prilosec isnt either but I have to pick one and with my stomach probs guess which one I choose)

She also wants me to go to bed earlier at night.

1. Night is when I feel free to be me. No kids taking the TV or whining or needing me for something.....I love them but sometimes I need peace to be me and not just momma.........no parents either yelling or making demands that exhaust me or looking at me like I am a disgrace for some reason or other....no one awake to judge me..............

2. I fear sleep. So often I cant wake when I want to when I am aware of the world going on around me. I wake confused and in pain. I am afraid if I go to sleep I will never wake up since my heart rate drops so low when I lay down

3. I sit up and my back and tail bone hurt even in my soft lift chair. I lay down and fear death. Curling up in bed doesnt feel as snuggly as it did when I was a kid.

4. I wake up and everything has changed. I always feel worse when I wake up no matter if it is a nap or regular sleep. I wake in pain and groggy and confused. Even if I lay down feeling fine just a little sleepy when I wake I am almost always full blown migraine and spazzes.

So is the normal? Not for a norm person but for MS or MS related disorder. Is this meds? Is this lack of sleep in the night hours? Is it from lack of exercise? Is it just laziness? Is it fatigue?

[tammypack]

fatigue

I call it my lead suit. It effects everything.You know its bad when its hard to just sit. I feel sorry for the knights that had to live in armor. Maybe someday I can take mine off.

[knutcase]

gotcha

There are levels to the fatigue. Like drinking....your lips get numb tingly feeling like when you are on about your 4th or 5th rum and coke.....ok I have a high tolerance.....to me that wasnt much....(if I was out to really party I tipped the bartender to make em weak then substitute every other one with plain coke so people thought I drank even more) So any way lips get numb .... speech becomes difficult and slurred.

Arms feel like someone tied led weights to them.....your suit of armor.....yet you dont get stronger.

Each step feels heavier than the last.....you cant lift your legs because the floor tilts....and walking anyway your hip joints dont allow your legs forward movement like when you sit.....(you can sit thanks to gravity but when you walk that doesnt work) you waddle like a duck and sway like a drunk sailor.

you begin to hurt from the invisible weights on your body. Ache all over like someone who over did it at the gym the previous day and slept letting blood pool....so you are stiff....in all the wrong places.

your head gets heavy. feels like whip lash cant move your head or turn your neck and when you try electric shock of pain goes down your back into your extremities. you also feel like someone slammed a baseball bat into the lump of your skull where it meets your neck. your hair feels like a twisted eyelash but it is on your head. It stings and hurts and touching it makes it worse.

to stand or take another step is the worst agony and your not sure you can do it even to make it to the closest chair 2 feet away. You make it to a couch or recliner (I have a lift chair/recliner.)you sit down and think just a minute. The world begins to swim in and out. You feel your head nodding and it hurts more. You jerk awake and are in more pain. Then your head slams back if you are lucky and you are out cold....

Sometimes you can hear what is going on around you like from a distance. But you are locked in .....trapped and cant respond. You try to scream and you try harder and harder.....sometimes if you are lucky you might hear your body moan....but you arent sure if it really happened or if anyone heard. (My kids like to use this moment to ask for things they want and take a moan as a yes)

Then there is the rest of the time you dont exsist. You dont know where you are you dont think....you simply cease to exsist at all. then you begin to awake.....you get your eyes open and are so dehydrated you cant speak. You dont know what day or time it is.....you try to move but are still so tired all you want to do is go back to sleep.....you keep drifting in and out....(anyone can ask you anything and you will agree to anything or tell them what ever they want just to be left in peace....you wont remember this when you awake but every one tells you about conversations they had they swear you were fully congnizant of)

Finally you wake. You have lost about 5 or 6 hours. Your weaker than you were when you were awake earlier. You know if you had just taken a nap at the first sign of numb lips or heavy eyes you would have had a normal sleep of an hour or two and wouldnt hurt so bad now....stiff from not moving while you slept.

Now you have to face everyone around you. You are lazy for wasting the day. You wouldnt be so tired if you got up and did stuff and planned your day better. Your a bad parent because you decide on frozen pizza or tv dinners since you are too tired and sore to actually cook a full meal.

This can happen anytime or anywhere. I have started to go out of it at church and at restaurants. You begin to fear it and not want to go anywhere but at the same time you fell caged in your life and shut in so much your angry and feel guilty all the time. You have lost friends. You dont feel like doing make up when you go out because it will use what little energy you have and what little time you have to be awake.

You want to do things with your kids and resent it when someone else takes them out to do the things you wish you could do or if no one steps in you feel so much guilt they are becoming as isolated as you are. You feel so lonely because no one understands how this feels. You blame yourself. You rage at the world.....silently. Because if you let the scream locked inside you would never stop screaming.....if you cry you will never stop the tears. So you have to always act brave and smile inspite of how you feel.

You are either insulted for being sick.....or complimented with the condesending attitude for being so brave and strong.....by people who think tired is something that is combatted with coffee or exercise.....or who have no clue about you....and think strong is not losing it when they break a nail.

[SNOOPY]

Hello knutcase,

I went back and read some of your other posts. What caught my attention is this post and the medications you are taking.

I would like to address your use of Simvastatin:
- The FDA has put out warnings on all Statins.
- Statins can cause a neuromuscular disease, (myopathy)
- Statins can Cognitive impairment ( confusion, forgetfulness, memory loss)
- Fatigue
- Weakness
- Diabetes
And more -- http://www.nlm.nih.gov/medlineplus/d...s/a692030.html

http://www.fda.gov/Drugs/DrugSafety/ucm293101.htm#
http://www.fda.gov/ForConsumers/Cons.../ucm293330.htm

If I was you (and I'm not ) I would seriously talk to your prescribing Dr. about your Simvastatin and the symptoms you are having. The damage a statin can do could possibly be permanent

[knutcase]

reply to Snoopy

Thank you for the information. I went to the sites and read up on it. My liver is fine. I get full panel blood tests every 3 months and also get kidney liver function tests every 6 months and drug tested monthly. That is the primary concern well that and the HCG levels.

The memory functions well I have had problems with those after a brain injury in a car accident in 2000. I got thru all of that. I have some clouding coming back now and then but am used to it.

My primary complaint isnt even listed with statin use. The passing out....ok they say fatigue but they go on to describe it as general weakness and tiredness. I have a leg that drags and muscles that have so severely atrophied they are missing during EMGs. Now the good leg has started dragging more. I have movement issues so I look like someone with cerebral palsy.

Example....went to talk to a lady at church about loaning my giant roaster to the church for Thanksgiving Dinner and standing on either side of us almost in a circle were 2 other ladies. I went to talk and balance made me start to lean forward and then my arms started twitching and I almost knocked her down and/or slapped her......The other two ladies grabbed my arms to hold them down and the muscles were jerking so badly I pulled them off balance....One of them is younger than me and about my size....quite strong.....

My fatigue isnt just a little tired. If you read below that is a few instances....One I was feeling fine and went to lean forward in my chair to go to the bathroom to get my hair brush. A friend was coming over to take me to lunch....(He died in December) ....anyway.....Next thing I know He is screaming my name standing by my feet holding me up. He said he came by at the arranged time and waited 15 minutes and I didnt come out so he came in. He found me falling out of my chair and caught me. I wasnt aware of even feeling tired or sleepy or drifting off.

When I moved from my last marital home after a divorce my father was putting a refrigerator on his pickup truck. The gate laid down flush with the deck to the kitchen door so it was a straight shot. All he had to do was tip it a little on a dolly and roll it out. He pulled the dolly out and was sliding it when he had to tip it further and it over balanced. I was standing on the ground by the back tires of the truck......(During the time of the first beginning symptoms and illnesses that kept cropping up and the vision problems)......I saw he couldnt hold the refrigerator it was going to crush him....my dad was strong but much smaller than me. I was 6 foot tall and at one time had been very into weight training...I was fat but still had good muscle tone......I reached up with one arm and used my shoulder and back muscles and in 1 push righted the fridge and shoved it on the truck.....reason for the story......I want to show I was once strong....very very strong. I thought nothing of having one child in my arms and 1 on my back and dancing around the living room for an hour. I loved to dance. Now I struggle to 2 hand a 5 pound bag of sugar into a fart cart.

I havent just sat around bemoaning my fate. I have done water therapy exercises.....almost fell asleep in the water a few times......I have walked the walking track until it became too difficult and my mother got aggrivated with me slowing her down....she worried I would fall if she left me and I went alone but she hated being slowed down......so I had to sit home or sit on a bench with wheezing old people in thier 80's and 90's.

I clean house....my way....I sit on the floor and scoot from one side to the other. I used to pick things up with my toes and bring them to hand level but after loosing my balance and falling forward spraining my wrist, back and breaking my ankle that is out.

The last big fall I had I dislocated my jaw got severe whip lash badly bruised knee and shin cracked ankle and knee cap.....sprained 1 wrist and fractured the other.......that was stepping up a 2 inch gap at the door and the door caught my brace and threw me forward into a post I hit with my knee and face and then my hands slammed into the railing on the far side of the post.......I have fallen into the oven...burned wrist........Fallen on my daughter .....fallen into door jambs.......fallen onto furniture.....fell out of the shower onto the toilet....lucky catch that time.....Fell into a shelf in the pantry and pulled it completely off the wall....pulled a few towel bars out in the bathroom in various falls.

I am up right and suddenly am going over backward or forward and grabbing for what ever is around....or the vision spots and blurriness starts and throws me off.

I asked the cardiologist about the statin and he said it is fine that the one I am on has the lowest ranking of side effects and works best with all the other medications I am on. He said with the PVC I have from my heart getting weaker he said my heart isnt life threatening and my chloresterol is 108 it isnt the number that he is watching but the particulates which can causes more problems in someone like me.

I watch what I eat. I have lost a vast amount of weight. I work at trying to cope with my limitations. I still type and crochet as my hands are open. I had to give up sewing since I cant see the needles or thread them.....and caligraphy since I have trouble even writing my name. I play video games with the kids to promote hand eye coordination and family time with them. I even play dance revalution sitting on a stool so I have movement going until I get too weak or in way too much pain. I suffer for days afterwards for doign these things but I refuse to give up all of my activities over this.

[SNOOPY]

I would seriously not discount the affects your Statin might be having on you. The loss of strength and weakness you are having can be caused by a Statin.

I was on a Statin at a low dose for a year and a half. In that time I lost my quality of life. I lost the majority of my strength and endurance and due to this disease I had very little to lose. I was no longer able to go walking, do necessary shopping, or keep my home picked up. I felt more tired than usual, cognitive problems caused me to quit driving (I would get lost in familiar places) and due to the increase of fatigue I was no longer safe driving.

Because I do have MS it was easy to assume my MS was progressing and at an aggressive rate. My husband was quite concerned I had Alzheimer's.

In the end it was determined that the Statin had caused all of what I wrote above and not the MS. Within 2 weeks of going off the Statin I was started to see improvement. My strength and endurance took some work on my part to regain what I had lost due to the Statin.

I will never use a statin again.

All of your symptoms may not be due to the Statin but, it could certainly cause some of them. In addition to the Statin you are on quite a few medications. All medications have side effects, everyone reacts differently to medications. I believe it is time for you to seriously look into the medications you are taking and their side effects.

Medline is a good source -- http://www.nlm.nih.gov/medlineplus/

In my very unprofessional opinion, what you are describing is not MS related, but I am not a Dr.

So I lay down I sleep. Sometimes I am aware and cant respond. I cant move even my hands or arms. I want to.

This sounds like Sleep Paralysis. This is quite common in general but sometimes there can be a sleep disorder that is causing it to happen or some other reason. A sleep study would probably be a good idea.

[knutcase]

sleep study

have had 4 sleep studies done. was on a cpap for a while but after losing weight and seeing another sleep doc because of the sleep issues i described and having to wear a sleep study bracelette for a week i was taken off of the cpap. I also have PVC where my heart isnt right because of muscular problems though not life threatening.....when I lay down my heart rate sometimes drops way low about 48 bpm......but upright and moving has gotten to 272 when I was preggers. Before getting sick even excersizing it never got much above 70...at rest was around 70. Yes I had gotten over weight but I was considered very healthy until this all started with something simple and inoccuous.