Fatigue so bad it's painful

[Mandylane]

I'm having quite a long bout of fatigue this time around. Even though being recently diagnosed, I've been dealing with this for years.
It feels so great to have a long run of energy that I almost forget I'm sick. Until either the pain or crippling fatigue catches up to me. I can deal with the pain when I have moderate energy, but when the fatigue hits with pain it's like I don't want to keep on going. If it wasn't for my kids, I'd have a hard time getting through my days. Although I feel like such a failure as a mom some days as I struggle to stay awake while playing with them. Even passing out around 8 after my kids are asleep cause I just can't keep my eyes open, and eight hours later after tossing and turning in a stupor of painful fatigue, its almost impossible to drag myself from bed upon them waking.

I've been on Lyrica now for almost eight weeks starting with 25mg, and now up to 75, I find no improvement. This time around I had put my back out. It was so painful I could barely move but I forced myself to and worked through the pain. It's been two weeks since and although the pain has improved I have been struck down with this fatigue that is actually painful to fight. I really wish they had a cure for this. I'm only 33 and people say to me all the time when at my worst that I act like I'm 80... I usually reply with, "there are many 80 year olds with less pain and more energy than me". Which is a sad fact to live with.
The hardest pain is struggling through this alone, when not even your spouse understands or is supportive when dealing with a fibro flare.

Here is to hoping tomorrow is a better day... If anyone knows of any methods to break this fatigue, please let me know.

 

[iluvbreyers2018]

Hey Mandylane,

My daughter also keeps me going - if it wasn't for her i probably wouldn't be up and working or doing anything for that matter.

I cant imagine having that much fatigue all the time, i'm sorry to hear that.

Your not a failure being a mom, you are there for your kids, you do things with them! There are plenty of "moms" out there that don't even acknowledge their kids.. and don't even deserve to have them. Kids are a blessing!

I know how it is to do this alone - i'm a single parent and I really don't have anyone to talk to (I don't have many friends and my only family in the state - my mom - she is doing her own thing, and my ex.. well hes my ex for a reason.) -

My neighbor has fibro - but its not like i'm going to go knocking on her door to ask questions whenever i think i need to.

That's why I joined on here to hopefully talk to a few others that are dealing with same issues and such.

I'm not able to take lyrica(or any other name brand med) because of the cost of the med - and gabapention sp? gives me massive migraines.

Im pretty sure ive had fibro for years, and just recently officially diagnosed with it - learning all the stuff i can do to help myself (because lets face it, no one is going to do it for us!):shock:

 

[Mandylane]

Thanks for the reply iluvbreyers2018. Really helps to talk to others expiriencing similar dilemmas with fibro.
As I'm sure most of us who have fibro, are information seekers due to the years of trying to figure out what is afflicting us; has had me researching my meds further. I'm sorry I used the broad base term of Lyrica to describe my meds, but I'm actually on a generic, "Teva-Pregabalin".
The side effects are atrocious! But aside from knowing them, I still felt like I needed to grasp onto something that might have the potential to work. However it's been a few months since I first read about them. Extreme fatigue can be one of the side effects, but it's hard to tell if it's the meds, or my condition since I've had many occasions where I've felt so tired it was painful to stay awake. At one point before I even was told what I had for certain, I thought maybe I was developing narcolepsy it had gotten that bad!
I would fall asleep for a few seconds here or there, like micro sleeps and jolt awake a few seconds later. But I knew it wasn't that because if I tried hard enough, like dancing with my first when he was just a baby himself, I could keep myself from falling asleep.

I hear you about the meds though. I get weird headaches all the time now and for some strange reason looking at horizontal stripes for too long sets off bad headaches instantly. I also think I'm getting vision problems. I am near sighted, but I'm having trouble focusing on small letters and numbers. I've never had that problem before.
Also at work when it was really busy and my brain was tasked with too much information for too long a period of time, there was a few seconds when someone was trying to talk to me, my brain just decided to take a vacation and I stared out into nothing. It was the worst zone out I've ever had in my life lol... Its funny now, but worrisome nonetheless. I was so drained afterwards, like the life was sucked out of me and a headache ensued, with full-out body pain.

You're probably better off not taking Lyrica or any generic brands. I'm bias I guess because, it took weeks to get over the stomach pain and nausea and it still lingers time to time after a pill or two. Going to ask my Dr if maybe it's not the best fit and keep researching better alternatives. I'm thinking, fight through my days like I did once before and give muscle relaxants and tylanol the hot seat for my worst days.

If you ever have any questions or want someone to talk to, I'm always here for an open discussion! Always a good feeling to have support, no matter where it comes from.

 

[iluvbreyers2018]

Hey Mandylane,

Ever since I've been laid off and now back at work, I also find my self - Zoning out.. its harder to concentrate and focus when the need is there to (IE zoning out during training is never good!)

Yesterday - my little had their valentines party at school.. I stayed for most of it and it was a 50s sock-hop.. so lots of dancing, moving and stuff i normally wouldnt do.... well my little said they weren't feeling good so i ended up going home with my little, and after i finished my calls for the day i laid down with them until they would fall asleep for their nap and it was like i was hit by a bus.. i almost instantly passed out/fell asleep - it was crazy. The more i pay attention to myself the more i notice whats going on with me.

I really never paid that much attention to myself when i was on my pain meds and shrugged any "off" days as just being an 'off' day.. and not because there were other things going on.

 

[Oknelli]

I’m so sorry to hear about your fatigue and pain. It is a very lonely place when your significant other doesn’t understand, especially the fatigue part. My husband is the same. I’m in a fatigue slump right now myself, I try to explain it but all my husband says is “I’m tired too “. I take a little offense to that. I WISH I was only tired. I’ll keep you in my thoughts and prayers.

 

[Sagey]

Hi Iluvbreyers,

I’m sorry about the severe fatigue, we can all relate.Ive had Fibro for approx 8 years , and what I’ve learned so far is, the medications for Fibro don’t work(my opion).I have gone off most my medications and been eating a healthy diet and have been improving.Dont get me wrong I’m still sick but I feel stronger and have had longer periods of less fatigue and pain.

Most of the meds by prescription have side effects of fatigue and many other things.I myself in the beginning needed to try all these meds because I was desperate for relief.But whatever I tried didn’t give me any significant improvement.

Doctors like to just give us meds because the pharmacy company tells them this really helps Fibro.They are not too familiar with it and this is all they can do.Some drs that supposedly know a lot about Fibro will charge you thousands of dollars for the treAtments(Fibro centers) and some may help a little.But do they really want to help us or want our money??

I guess I’m a little angry that they haven’t found something that truly helps us moderately.
Lyrics,Savella,and all the others I have found to fail.

Being off of most meds except for pain and a sleep med,vitamins and excercise (as much as you can,even if it’s just walking a short distance)has been the only been what has helped me improve.

Everyone will have their own journey.But I do believe they will come up with something that will help us function “ normally” in the future.Because I know we are all suffering in our own way.
I hope all of you have better days and don’t ever give up. Because I will not!


Sagey

 

[Mandylane]

Sorry it took me awhile to reply back, so I'll use this reply to address everyone who commented.
I'm really glad for all the kind words and advice. The winter for me is the hardest, and with so much cold and snow this winter it's been rough. But not my worst though. The winter I was pregnant with my second was unforgiving to my body. Needless to say I bet most of us feel way better with warmer weather that gets us out more and exercising, which has been proven to shorten our flares and make them few and far between.

I'm still not bad enough where I can't get all the benefits of a healthy lifestyle with very little effort. I've been working about 40 hrs a week and that doesn't include when I'm home. It's been tearing down my body. Actually pulled a muscle just trying to clip the buckle in the snap of my lo's carseat a few days ago.
That was the morning I had woken off of only 3.5 hrs of sleep because I went to the gym after work the day before. I push myself thinking I can do what I use to do.... Be as active as I once was. Have to force myself not to run on the treadmill when my brain only wants to achieve what I once was able to do and run that 11km. I'd be lucky if I can walk three miles at a brisk pace.
I do enjoy hiking though in the summers. A gf and I made it a point last year to see as many waterfalls as we could. Hoping for a continuation of that this summer.
I'm sure we all miss our former self. I know my friends and family miss who I use to be too, and how hard it is for them to understand this affliction we all suffer from.

I'm certainly never going to give up on trying to rid myself of fibro one day. If it's at all possible. My thoughts are; if I can turn on the gene that made me this way, maybe I can turn it off!

Here's to perseverance...!

 

[moe1959]

I had a really bad reaction to Lyrica, weight gain, mouth ulcers, dizzy, brittle hair, dry skin. These are justa few. One time I got one stuck in my throat it burst open and burnt the lineing of my throat, It was SOOOOO painful. I should of gone to the ER, but all I could think was, one more Dr. ,Bill.
The pill burnt so bad, and I couldnt help but think about the fact that this poisen was heading to my Stomach, Yikes!!!! I stoped taking it imediatly .
I wouldnt say for someone else to suddenly stop like I did, please follow your Dr's directions.
Cymbalta had a bunch of weird side effects too. I no longer take it eithor.
Do your homework, keep a pain diary and meds your on along with side effects your having.

 

[Mandylane]

Omg Moe, that sounds terrible. The fact that you'd go through that kind of pain to avoid the stress of a medical bill. Sounds like you had a chemical burn to your esophagus.
I live in Canada so I've never experienced that kind of stress. I'm really happy for it since I've been sick for so many years and all the tests and hospital visits I've had over the years would have cost me a fortune, and like you I would have opted out of almost all of it and probably never received a diagnosis.

It's a bit heartbeaking to know that even though we pay slightly a bit more tax than you guys, your out of pocket expenses is far more costly annually to each individual American, even healthy ones who almost never go to a Dr, then what we pay annually for healthcare in form of taxes.

I understand how many people think it's socialist idiology, but to me it's actually good business sense. I can't imagine paying privatized Dr's and hospitals more and getting far less healthcare for my dollar.

As for the Cymbalta... Haven't ever been on it but I know it's class of drugs and have been on SSRIs and dopamine inhibitors and both have caused suicidal ideation in me where I don't otherwise when not on those meds. It's scary what one small pill can do to a person. So far I haven't experienced any horrible side effects. But I'm definitely staying on it till my next Dr's visit. Thanks for the advice Moe!

 

[iluvbreyers2018]

Pain Diary is a good idea.

Here in the US depending on where you are, we do pay alot of taxes.
As far as a govt health system - well the one they call obama care does nothing but gives you a piece of paper that says you have it.

I had to be on obama care for 2 months.. and i couldn't see any doctors (no one took obama care) and it didn't pay for any of my medications. Thus i was off meds for 3 months until I got new real insurance -new medical part is ok (but this pharmacy insurance sucks, i cant get name brand IE cymbalta, lyrica, savella, nucynta etc)

So I kinda live in/on pain too - the meds that my insurance does cover doesn't work (tramadol) - I think when i was taking nucynta it actually helped with some nerve stuff to, because since i've been off it, I can feel everything.. and i don't like that feeling