Getting worried about my symptoms...

[Rena705]

Well yesterday was a HORRIBLE day!  This is nothing new I suppose but it is getting scary cause it's not getting better even though I have adjusted my meds as recommended by my gp 19 days ago.

Yesterday I got up and made a coffee, took my Spireva, Symbicort and Tegretol.  I know that Tegretol can cause fatigue but I have been taking it for 16 years now and I have never had a problem before.  I got through about 1/2 a coffee when the fatigue hit me like a bus!  I was supposed to go to Mom's for my brother's birthday but there was no way I could ready and go over there...I was exhausted after a good 10 hours sleep the night before.

I decided to get in the shower knowing that it wouldn't help but what the heck...nothing else wakes me up, why not give it a try???  Because while I certainly smelled better it sure didn't wake me up!

I had whole grain cereal for breakfast and hubby made me a sandwich for lunck with whole wheat bread.  After lunch our buddies Albert and Derrick came over to borrow a few tools and when they came in their voices seemed SO LOUD and I couldn't understand what they were saying...I felt like death warmed over!  I went in and lay on my bed for a bit but still felt horrible.  

I decided to check my heart rate and pulse just to see what was going on there.

My Blood Pressure was 113 over 71 and my pulse rate was 68.  My normal resting heart rate is between 80 and 98 depending on how much exercise I am getting at that time.

Today I decided to check my Blood Pressure and pulse rate again to do a comparison.  I feel good today and feel none of the fatigue or other symptoms of yesterday...my Blood Pressure today is 124 over 79 and my heart rate is 86 and I rested just like yesterday before taking the readings.

I realize that these levels are not extreme on their own but they seem a little out of kilter when comparing them and I am wondering if a low oxygen level could cause my fatigue and if these differences in readings indicate anything of the sort?

I am at my wits end here because my dr. is a bonehead and she will probably never believe that any of my symptoms are related to MS...and that is WITH A DIAGNOSIS OF MS!!  I changed when I am taking my anti-depressant at her suggestion and it has changed NOTHING!!!

This isn't something worth going to ER when it happens...what do I do...I am here because I am soooo tired?  Ha ha ha...I can just hear them saying, "well go to sleep!"...although I can't seem to fall into a deep enough sleep and feel no better after dozing off at least 50-60 times during the day (like yesterday).

Any ideas anyone???

Lots of Hugs,
Rena

[Heather3418]

I did some researching on the net today, about this kind of fatigue - in someone with MS and in other cases.  Suddenly I came up with Narcolepsy.  Do you think this could be MS fatigue (which is different than a "normal" person's fatigue) AND the disorder of Narcolepsy?  Falling asleep when you are talking to someone, then jolting awake, then wanting to go back to sleep, is what was described on the web site I was looking at.

Could it really be possible that you have both problems?  It's just a thought.  I didn't want you to think that I just answered your post without another care.  99% of the time, when I am puzzled by someone's question, I get right on the Internet and start doing some research.  When I find something that might be a clue, I will re-post.  I notice that our Lulu girl does this too.  God bless her.

I wonder what our retired doctor, Quix, would think of these two disorders presenting themselves at one time in one person.  Mama Bear, I hope you get a chance to take a look at this thread.  I know you have been super busy with contractors....we sure have missed your expertise on these kinds of medical questions.  Quix, what would we all do without you?

By the way, Rena, my life's partner, Scott and I, had an argument today about this kind of fatigue.  He just doesn't understand what the "I'm going to die if I don't lie down, feeling," really is all about.  He relates it to someone that is "normal" and suffers from fatigue.  He didn't say the word lazy, but had plenty of "ideas" about how to "cure" my problems with fatigue.  Family members not understanding what this feels like, just makes it all the much harder to deal with.  I find myself doing everything I can, to NOT lie down, just so I won't have to listen to another "I have the cure" speech.

I beat myself up enough about wanting to just sleep....I don't need someone else beating me over the head with their "cures," claiming they know what I should do, to be more active and spend less time being "tired."  "Tired" doesn't begin to explain what this feels like, does it?

You have been on my mind all day, Rena.  I am so worried about you and feel so helpless, when all I want to do is help.  Would you mind if I prayed for you?  It's the only thing I know how to do and truly believe could make a difference.  I pray that God sends his special angels down from Heaven to do battle with this fatigue and give you relief.

Would you please keep us updated about all of this?  I want to know if there is anything suggested to you by a doctor, that you find helps.  If this is a relapse, you are in one
h e l l of a big one.

All my prayers and love coming your way.  We've "known" each other a LONG time..I really wish there was more that I could do for you.

Heather

[Rena705]

Hey honey...good to hear from you my dear!  I agree that it could be from the Tegretol I suppose but it seems strange after all these years of taking it...but I will ask the dr (as if she will know anyway right?) hehe

I am taking Vitamin D and eating a pretty balanced diet with lots of greens, fruit, chicken, skim milk and whole wheat products so I really don't think that is it...good stab though I must say!  They did run a blood panel but everything apparently appeared normal to my gp.  The one thing I was concerned about was blood sugar but they did a non-fasting blood test and because it was normal I guess the gp figures all is well.  I would think she should have ordered a fasting glucose test and then she would really know but I guess it's easier for her to put her head in the sand eh?  haha

I don't see a way around the coffee either cause there are some days that if I didn't have it I am sure I would fall flat on my face and I have enough problems right now.  

I am going to start taking my bp and pulse every day at about the same time and make a chart to keep track of the data...it seems like it's the only way the dr. will look me in the eye seriously...if I do the work for her.  I sometimes feel like she thinks I am some sort of hypochondriac but I know what I am feeling regardless of what she thinks.

Anyway, thanks for the advice honey and I will let you know how I am fairing ok?  Hope you are doing well and you don't have to deal with that horrible fatigue again...it is nasty stuff isn't it?

Lots of Hugs,
Rena

[wonko]

I'm sorry to hear that your symptoms are so bothersome and your doctor so useless.  It doesn't seem like this level of fatigue is easy for you to manage at all!  I know it can affect my mood significantly, so it's good to see you defending yourself and your feelings.

My situation is different from yours.  However, I spent April, May, and a chunk of June under a terribly heavy fatigued, the worst yet for me.  I was waking up exhausted, and sometimes moving about my apartment or even just yawning felt like an exhausting chore.  It was awful.  My BP is usually around 115/70, but on a bad fatigued day it was clocking in at 103/64.    

It's always difficult to unravel these occurrences.  In my case, I'm fairly certain that it was side effects/intolerance to medication (Plaquenil).  I tapered down to 1/4 my prescribed dose but it didn't help.  However, 1 week after stopping I started to wake up and now 2 weeks later I feel like a different person!

So while your gp is not the most helpful person, perhaps interrogate her about your meds and which could be associated with your worsened fatigue?  Even if it is something you've taken for awhile, it doesn't sound impossible to develop an issue over time.

Other than that, I would also suggest supplements.  I know you are working on eating well and paying attention to weight, and sometimes when we eat less calories we miss some of what we need.  I take b12, a b complex, and vitamin D.

If nothing else, it seems they should run a blood panel to look for anything out of place and/or deficiencies?

As for coffee, I simply depend on it too much at this time!  I know ppl with fatigue are encouraged not to drink it but gosh, I just don't see a way around it for now!

Take care and I do hope you get some relief from or answers about this.

[Rena705]

Well Kathy...for starters thank you for answering my lament...I had a few bad dizzy spells today but otherwise felt a whole lot better all day.  I don't think that the drink being "hot" coffee had anything to do with it, I had only drank half of it and it was like 10 minutes after I got out of bed after a good 10 hours sleep.  That is what scares me the most...that it is right after I get up.  I think I will start taking my bp and pulse daily at the same time and make a chart to keep track of the stats.  When I have another day like yesterday I will go to a Medi Centre to ensure that I shouldn't be in ER and like you said, perhaps THEY can straighten out my bonehead dr. hehe  Thanks honey for you support!

ren...thanks for your response my dear!  I don't have the opportunity to just call my gp...she is a royal waste of time anyway but it takes at least a week to get in to see her and then she ignores what I am trying to get through her thick skull.  It's a very frustrating situation but I haven't been able to find a new gp as there is such a shortage of docs up here...if I get too ill again I will go to the hospital and have them check me out...I figure that if I keep bugging someone they may start to take me seriously.  Sorry to hear you have atypical migraines but I am sure that isn't the problem with me.  I have a bp/pulse machine here at home and if I really want my O2 checked I will go to a Medi Centre and as I told Kathy, maybe they will educate my gp!  Thanks again my dear!

Heather, Dear Heather...Just what did you do with that magic wand???  I hope you didn't drop it in the fish pond!!! Didja???  hehe  Thank you for the kind caring words and I can appreciate that there are people out there feeling the way I do and can express the frustration it causes in our lives!  I am so sick and tired of being just plain bloody tired!  I can sleep up to 12 hours straight although it is generally interrupted by a rotten little puppy licking my nose but I can go straight back to sleep no problem.  I have a really hard time sleeping during the day though!  I go lie down in my bedroom with the lights off and the blinds closed and I can't sleep and it is so frustrating because I can be sitting talking to someone and doze off until a sound makes me jump out of my skin and then I am awake for another 10 minutes before it happens again.  I am glad that we can relate to each other in this Heather although it would be much better if neither of us had to deal with it.  Know that I am here for you too honey and maybe we can gain some strength together ok?  Thanks for your kind words Heather!

Jen...you are probably right...it's probably my brain...STUPID BRAIN!!!  hehehe  I will let you know about the heart rate thing if I ever get any answers ok?   Thanks for your advice!

Lots of Hugs,
Rena

[jensequitur]

Personally, I think fatigue is just a sign of disease progression.  Fatigue indicates that there's damage being done, and your body's just trying to rest up from it - just like when you have the flu.  I don't take all that many medications - Copaxone and birth control are it right now.  I'm not even taking the Aricept!  So I don't think it's causing the fatigue.

As to your heart rate being different - when I'm in a flare-up or fatigued, my heart rate and respiration change.  So it's possible that it was just your brain!

[Heather3418]

You answered your own question about the differences in the blood pressure and the heartrate...you said..

...."Today I decided to check my Blood Pressure and pulse rate again to do a comparison.  I feel good today and feel none of the fatigue or other symptoms of yesterday...my Blood Pressure today is 124 over 79 and my heart rate is 86 and I rested just like yesterday before taking the readings.".....

When your blood pressure and heartrate were low, your readings reflected your day of fatigue from the day before.  On the day that you were not fatigued your readings were YOUR normal.

I AM worried about your level of fatigue.  I went through the EXACT same thing when I was in the midst of a relapse, this being one symptom, along with an increase in my pain.  I actually didn't know whether to classify it as a relapse, as these were my only two symptoms, but the level of fatigue is not something I experience on such a deep level as that was.  So it was not my normal.

I can't tell you to just "push through it," cause that's almost impossible, when you are feeling like this.  I tired everything with my episodes and pushing myself did nothing but make me more tired.  I actually felt even more fatigued within only a few minutes of getting up.  I have trouble getting to sleep at night, but once I do fall asleep, I can sleep for 10 hours straight.  Are you the same way?

I have noticed that my periods of fatigue are getting more and more frequent.  I plan to talk to my Neurologist about this at my appointment next month.  I do know that I take alot of medications that can cause drowziness, so maybe that's the reason...even though I have taken them for years.  One person at the pharmacy told me that now that I am getting older, these drugs that didn't cause so much fatigue in the past, may be causing me problems now.  That's one thing I will bring up with the Neuro.

I wish I could help you Rena and wave a magic wand and have all of this go away.  The reason I posted, was to let you know that I totally understand how you are feeling.  At least I think I do.  I am not depressed, so I cannot blame this on depression, but there is so much I want to do during the day that I enjoy and hate being side-lined with so much fatigue.  Rena, I kid you not, if I could stay in the bed for 20 hours out of 24 without a back ache from laying down so long, I really think I would.  As you know, this isn't laziness, this is true severe fatigue....with what looks like no answers.

I feel for you.  I really do.  I wish I could send you some strength in a bottle.  It's time for another doctor visit Rena.  Someone need to give you a reason why you are feeling like this and not just pass if off to depression or laziness.  Cause I know it's not...

Heather

[rendean]

Hi,
I'm like Kathy I don't have much to offer except support.  It might be your new meds.Have you called your GP?  If you think it's your oxygen levels and/or have trouble breathing you probably need to be checked out by medical personnel. Have you considered going by your local Fire Dept. and let them check your BP?

Actually, your symptoms sound similar to my atypical migraine symptoms. The fatigue and over whelming urge to sleep because I am so tired but can't get any restful sleep. Loud noises send me right up the wall.

Kathy's suggestion about calling a medical help line through your insurance or local hospital is a good idea.

I hope you feel better soon!
Ren

[Fluffysmom]

Hi, honey.  I don't have much in the way of input, except that I've found that consuming something hot can bring on my fatigue; I almost fell asleep in my soup at Olive Garden once.  Maybe your coffee had a similar effect?

I'm sure coffee is part of your normal morning routine, but maybe if you were already not doing too well, it just pushed you over the edge, fatigue-wise.

Other than that, all I can offer is empathy.  I've been dozing off while watching TV, while reading, not feeling up to making dinner (did finally make a simple chicken tamale casserole last night that was yummy), not feeling up to driving.  I've been feeling "peaked" and look kind of pale; I'm sure my BP and heart rate are low, and I've been feeling a few skipping beats now and then.

I'm glad you feel good today, or at least better.

As for your oxygen level question, the only times I've had mine checked they were normal, so I couldn't say if they were low when I feel like this now, not having one of those little O-sat machines at home.

Hmm, could you call the ER, or some advice line, and describe your symptoms, the fact that you have MS, and what your concerns are?  Maybe someone would have a good answer, and pass it on to your bonehead doctor so she'll pay attention.

Hugs,
Kathy