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So tired of all the painand fatigue!
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kararush posted:
After years of trying to get a proper diagnosis, the doctors have finally settled on the wonderful fibromyalgia as my likely condition. I have tried various antidepressantws and other supposedly "fibro" meds over the years...Lyrica, Cymbalta, Paxil, Wellbutrin, others, and most recently, Savella. The Savella worked for a while...then nothing. The others helped NONE.I recently started seeing a rheumatologist. He has me on Ultram. It was ok at first, but starting to wear off. And if I miss a dose of it, Lord have mercy, I cannot function at all. FOr the record, I HATE BEING DEPENDENT ON MEDICINE TO FUNCTION.

As I sit here, I am kinda at the end of my rope. I am 37 years old, very happily married, mother of 3 boys, and I teach kindergarten. I have "felt bad" as long as I can remember. I used to be able to push through and keep going. Not so anymore. My fatigue is so overwhelming that it's all I can do most days to get to my house. I am literally almost unable to move for the rest of the night when I get here. The fatigue/exhaustion is unlike any I have ever had. I love love that tired/worn out feeling you get from working hard...but this tired is not like that. It is to the bone, all the energy zapped, unable to function tired.

The "brain fog" I've heard of is another thing. UGH. I am constantly promising to do things for folks and forgetting...going to a room and not remembering why I'm there...forgetting peoples' names that I shouldn't forget, etc.

And the pain. Oh yes, that lovely pain. Unbearable at times. And new pains are popping up, the latest being the inside of my left elbow. It's so bad I can't stand to touch it and the whole arm is weak from it, it seems. How do you even know when pain is real and can be treated or when it's just more fibro symptoms???

I like my doctor and rheummie. However, I really don't think either one of them has a clue. The original thinking was maybe I had RA. After that was pretty definitively ruled out, the rheummie was thrilled. He went on and on, seriously kept repeating it like he was so happy for me, that fibro "causes NO physical damage at all so it won't harm my body, won't ever cause any problems to my body in any way." HAHA. He acted like I should share his enthusiasm. Well I didn't. Don't get me wrong, please...I know there are hundreds if not thousands of terrible afflictions out there and I am very blessed to not have one of them. However, what I wanted to scream, shout, and cry out to him was that yeah, instead of having something that can possibly be treated and managed through meds and other means, instead I have something that is virtually hopeless, that folks surely don't understand, that up until recently (and still is in some circles) was looked at as a disorder of crazy people or all in your head, something that is pretty much untreatable. ='(

I am in a very bad state at the moment. Just tired of hurting. Tired of being bone-tired. Just tired of the hopelessness of this. And I just wanted to vent and unload seeing as how I personally know nobody else with this crappy "disease" so have nobody to compare notes and sound-off to. It just feels so very hopeless now. So hopeless. And I can't imagine how much worse it will get over time. UGH.

So now, I take 2 Ultrams at a time, about twice a day. I have Flexiril to take as needed at night to sleep, but it KNOCKS ME OUT so I only take it on the rarest of occasions. Take a high dose of Vitamin D once a month. That's it. And it doesn't help. ANY suggestions?? I know many of you have been through much more than I have and have found ways to manage it better. Tips??? There's so much info out there, and often times info comes with motive...motive to sell something. I sometimes find it hard to decide what's for real and what's for monetary gain. Would appreciate your suggestions!! Thanks in advance!
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CozyTime responded:
Hi Kararush, I'm sorry your having such a bad spell. We all understand the need to vent or seek information Have your Dr , if he hasn't, chk your thyroid, vit B 12 and hormone levels. If your on thyroid Meds have him run the test to see if your body is absorbing it. I failed that test when they made a switch. I was so tired. Terrible! Many of us have CFS. That came first for me.

Like a mono I couldn't shake. I swear just those two make me wanna wrap up in a heated blanket I'm so tired I can't stay awake and I hurt bad with the snow and cold weather.

If your seeing a specialist ask them about CFS & CFID. TYPE INTO A SEARCH ENGINE AND YOU'LL GET GOOD INFO. You may hav this also. I do weekly B12 shots. Easy to do and give me about a two day boost.

I've been fighting so long I've almost forgotten how long but at minimum 15yrs. I have a handicap tag which really helps for Dr visits or trying to grocery shop. Easy to get. Some states have the form on line to print off or go to the DMV. I filled out everything I could so I just needed his sig. Seems they -Drs- have trouble doing anything extra these days.

Look in the tip section on the rt side. At the bottom you'll see " more". Someone made a list of some sites. I didn't see any hawking Meds. That gets my goat big time.

I've already forgotten which muscle relaxer your trying that's making you too sleepy. Could just be you have long days. Ask for an extended release one. I think FLEXERIL has one that goes by a different name. Anyway you could call your drug store for the name. Started with an "A".

You could also ask you Dr to let you try a med for sleep disorders. It's called NUVIGIL Will clear the fog from your mind and you can remember things . I don't take it daily though it's written that way. I just want it to keep working when I need it bad!!!

Just read tonight they've found a P tracer (whatever that means) in our bodies. A tracer. Have to finish reading then I'll post it.

Take care my thoughts are with you !

""If I tell you my problems it's because I TRUST you with my feelings . Please know I'm not whining I just need to share the burden and talking can lighten this load. I ask for nothing in return , but a hug would be such comfort.""

Take care all.
 
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xperky responded:
Hi kararush. I feel your frustration.

First of all, I'd like to say, it sounds like you are in a particularly rough spot right now, and things may get better. I don't know if it is cold where you are, but if so, remember cold does make people with FM feel quite a bit worse.

There are so many good tips here. Look at the "Tips" section for posts from fellow FM patients. One very good tip is to pace yourself. You may have to stop offering to help others so much, and make sure you have plenty of rest periods in your days.

I'm like you, and hate being dependent on medicines. Since my diagnosis a year ago, I've become more gentle with myself though, and find myself grateful for the relief I get from my medicines. I look at the Tramadol as a helper to keep me more active and involved. I also take a muscle relaxer at bedtime, but cut it in half many nights. You might try that.

I find my heated mattress pad to be wonderful! Many here have a deep memory foam pad on their beds for better sleep.

Scheduling your physical activities to allow plenty of rest after, will help you too. For instance, I know I can't vacuum on the same day I grocery shop, so I plan my week accordingly. My house is much dirtier than my pre-fibro house! That's OK too.

I hope you start feeling better soon. We are here to vent to whenever needed.
With Compassion,
Margaret
 
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Margaret A Caudill-Slosberg, MD, PhD, MPH responded:
kararush,

you have described your frustration and challenges very well and I applaud your willingness to vent and to acknowledge that you are in a very bad state "at the moment". It's that ability to step back and objectively identify where you are now and acknowledge that this too shall pass that will keep you in control of your response to this disease. Asking for help, understanding, comfort does not come easily for people who may already feel that they are burdens or are not living up to the expectations of others. Fibro can make you feel useless and unworthy but you have identified those feelings for what they are; temporary, recurrent and in no way reflective of who you really are. Thank you for sharing these important insights.

Best,
Margaret
 
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dollbug responded:
Hello kararush...and welcome....MiMi in NC....FM STINKS, doesn't it? I can tell you though that there is hope....it does take a trial and error process to figure out just what your body needs....and this takes time and effort...but there is hope...I do NOT take medicines either....I did try them in the beginning...but did NOT find anything which really helped me enough without causing side effects and I did NOT need another thing to deal with...

I now take vitamins and supplements and do other things as well...and I have learned how to "control my FM pain"...it took me a long time...and I tried many things...I take the following: magnesium malate (vitamin store) Vitamin D, Super B Complex, Calcium and Omegas...plus others as I have other health issues as well...but these are the ones which help my FM pain the most...

I also use a heating pad when needed...stopain spray when I can NOT get something to settle down...(walmart) I take a hot shower at night using lavender bath salts which help to relax my body so that I can sleep better...I also sleep in a recliner..(not by choice though)...I have learned that I must pace, pace and pace some more....I also try to watch what I eat and I drink plenty of water...do some gentle exercises and stretches daily...and try to limit my stress and keep myself on a schedule of sorts...

OK...as for the fatigue...I have found "nothing" that has helped me...when I know that I have something pressing though ....I try to rest as much as possible before...

So...have you asked your doctor to check your Vitamin D level? This is so very important...low Vitamin D can cause some of us to have additional pain...and it can also affect other illnesses as well...and it can take a long time to get it back in the normal range...depending upon just how low is was in the beginning...

There are no quick fixes...and what helps one may or may not help you....you have to decide...but you should also allow at least 6-8 weeks of whatever you decide to try...before deciding whether or not whatever you are doing is helping you...

Nothing is easy with living with the wrath of the dragon, aka FM...it is a very mean and ugly illness...

Check out the info under "tips" and "resources" that you will find to the right of this page...you will find some good "tools and tips" that perhaps you have not thought of trying...

I am no longer able to work...I wish I could tell you how to manage better with your job...hopefully though...when you find something that will help you...you can figure out how to make changes...I keep my grandson 2 half days a week...he is only 2 1/2 and he wears me out...he has so much energy...if only I could borrow some of his...

I hope that you find something soon that will help you cope better...

Take care and update us on how things are going with you....


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..


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