What Does Fibromyalgia Feel Like To You?

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jr991
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Date Joined Feb 2011
Total Posts : 186
   Posted 6/28/2011 8:33 AM (GMT -6)   
I'm trying to understand why I'm feeling the way that I do. I do not have a diagnosis of fibromyalgia but it's something that I feel is a possibility. I would really really like to hear what fibromyaligia feels like to you. I would really appreciate as many people as possible to just sum up in a paragraph or so what it's like for you to have this.

Thanks in advance.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/28/2011 11:04 AM (GMT -6)   
Fibro is something, you do learn to live with. You will find that you can have a great life in spite of fibro. We are all differant and our symptoms can vary. Life with fibro...
 
I'm always achy and sometimes foggy :) The everyday pain, I more or less gotten used to...it's always there, almost like background noise. I keep myself busy and it really helps distract it. My fatigue level varies. During flares my pain intensity and fatigue really increases. I do have trouble with insomnia. Exercise along with an attittude that I'm going to have fun, no matter what really helps me.
 
I believe the way you think does play an important part of how you handle situations. Always hope for the best. :-)
 
Wishing you the best!  Fibro 101 is very helpful...lots of good info!
 
Hugs, Robin
 

young gma
New Member


Date Joined Jun 2011
Total Posts : 3
   Posted 6/28/2011 12:19 PM (GMT -6)   
To me fibro is very painful at times when I have flare ups I dont want to be hugged or touched I just want to curl up and relax. I get the brain fog and forget easily my hands ache and my legs ache sometime i get a headache i go to the hot tub and that sometimes helps

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15370
   Posted 6/28/2011 1:21 PM (GMT -6)   
I feel like I've been beated with a baseball bat and then run over by a steam roller.  Then all of this caused partial amnesia and I can't remember my phone number or where I put my car keys.  Other than that, I feel great!   turn  
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 6/28/2011 2:10 PM (GMT -6)   
To me Fibro is a confusing, painful, and debilitating thing. It makes me feel like I am to as human or as life like as I want to be. It is like a physical schizophrenia almost. One minute I can be okay and the next in pain. The sad thing is it could "switch" like a flash and it is very bad when that switch is in the middle of doing something around others, where they look at you like you are "faking" when you are not. I wish there would be physical signs or features, ones that could identify us, so that people could understand. Invisible illness like Fibro are horrible because no one can see the suffering.
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis for slow transit constipation: Aug 7, 2008
Numerous food intolerances
Now struggling with worse stomach, diarrhea issues, which are now uncontrollable.
Diagnosed with Lyme in 2009.
Diagnosed with Fibromyalgia and tremors in 2011

carlybob1
Regular Member


Date Joined Sep 2010
Total Posts : 204
   Posted 6/28/2011 2:36 PM (GMT -6)   
I will agree that mine feels like a background pain that I just deal with, too. But what I can really relate to is Sherrine feeling like she's been run over by a steam roller. I often tell my husband it is like someone is eaither smacking me with a rolling pin or someone has a huge one and is running it up and down my body!!

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/28/2011 3:08 PM (GMT -6)   
Yeah, that steam roller description does say it all turn
 
Flare pain, I usually describe as bone crushing pain skull
 
The everyday stuff has gotten tolerable, if it didn't...I'd be a basket case. In the beginning, if somebody told me I'd get used to it..I'd tell them they are crazy. smilewinkgrin
 
Hugs, Robin

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 34979
   Posted 6/28/2011 3:46 PM (GMT -6)   
My muscles and joints ache all the time. And I feel exhausted. My muscles feel fatigued too. I can usually keep this under control, but there was a time when I couldn't, I could barely walk. All I did was sleep. Day and night for almost two years. But with meds, I am better. But it takes a lot of work to feel good. Though it can be accomplished. Positive thinking as posted above. That is the tirck. And moving around. Walk whenever you can, drink a lot of water.

Best wishes,

Hugs, Karen
Moderator-Depression and fibromyalgia


fibromyalgia, Chronic fatigue, depression, allergies

ak angel
Veteran Member


Date Joined Apr 2011
Total Posts : 3025
   Posted 6/28/2011 3:59 PM (GMT -6)   
I have some good days and some very tiring painful days. I want to do more activities but when I do it cost me. My muscles feel like I have been 20 yrs older then I should. Lol I have to take one minite at a time these days.

Marilyn K.
Regular Member


Date Joined Jan 2011
Total Posts : 250
   Posted 6/28/2011 4:26 PM (GMT -6)   
Mostly I would describe it as being sore all over. Unpredictible!! The insane thing about Fibro. is never knowing whats gonna happen in the near future. I am kinda new here, but so far the pain you can live with. It's the acceptance is where I have the problem. Denial!
There are those flares, where you don't know where the heck they come from.
We are lucky, it could be so worse. Seriously
Marilyn

FibroNana
Regular Member


Date Joined Sep 2010
Total Posts : 193
   Posted 6/28/2011 5:06 PM (GMT -6)   
I agree with all of you..but what I'd like to know is, How long have you had fibro? When does one get to the point that it feels like background noise and you just deal with it?

I met a wonderful lady on this forum. Turns out she lives just a couple of hours from me. She came down to meet me and spend the night. Oh, what a great time we had.. Even though I slept most the time. She's been dx since 1994, I thnk that's what she said..Barb if you're on here correct me...anyway..I was saying that I was researching this and wanting to try that...and she said, she did the same thing and here it is all these years later..and she still has fibro along with some other conditions.

My point is, heck wht was my point? sorry, I am silly...

my point is, when do you embrace this...I guess that is the word....accept this..

Jerrie
Fibromyalgia,meralgia paresthetica,degenerative disc disease,rheumatiod arthritis,depression,asthma
Cymbalta,neurotin,predisone,percocet
Juiceplus,coq10,malic-acid/magnesium,probiotics,fish oil

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 15370
   Posted 6/28/2011 5:25 PM (GMT -6)   
As soon as  you go through the grief process then you will accept this.  I had to whiz through that process because when I got this my husband was a consultant and was gone for months at a time.  I HAD to do everything and my kids were only 8, 9, and 12 years old.  I had other illnesses going on at the time so this just was added to the list and I had to deal with it the best I could.  Actually, because I didn't have help, that helped me!  I did hire someone to mow the lawn and trim  and to shovel snow out of the driveway, but I did everything else.  Consequently, I survived and saw that I really could do things with this stupid illness. 
 
You will get that way too.  Once you accept this as a part of your life, you will learn to live with it.  It's like if your arm became paralyzed, you would eventually learn how to do everything without needing it.  We are quite amazing creatures and we do adapt quite well. 
 
Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 6/28/2011 6:37 PM (GMT -6)   
Some of us never do.

Deb25
Regular Member


Date Joined Apr 2009
Total Posts : 319
   Posted 6/28/2011 6:37 PM (GMT -6)   
Everyone has a different threshold to pain, some are able to deal easier, put it in the back of their minds, which is good for those of us whom can.  I feel that I am one who can simply because I have dealt with it for so long.  My diagnosis was recent, but this has been going on for years.  As long as my tummy isn't included, then I am able to cope.  I have bad headaches all the time, neck pain/shoulder pain..otherwise, doing ok.  I can't take any of the meds they recommend, they make me so sick, so I walk for PT...hope it does the trick for me!
Gluten Intolerant, Small Fiber Sensory Polyneuropathy, Gluten Ataxia, Sleep Apnea, CFS, Raynauds, Hypothyroid, Fibromyalgia

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 6/28/2011 6:39 PM (GMT -6)   
Like I said earlier, fibro is something you learn to live with. I went through all the stages of grief...was very angry about losing my ability to do some things...and at times that anger can still creep back into my life, but it is now short lived.

You do learn to accept your "new normal" after you decide for yourself that life goes on and you can't just focus on pain. Staying active as I can helps and getting out with friends and having fun works for me.

Tonight my hubby is playing tennis. He plays on leagues... mixed doubles and also plays singles. I can no longer play..but I would never deny him the pleasure, Same with golf. Finding new interests to take the place of things you can't do is necessary.

The pain does become background noise after you decide it is not the focus of your life...yes the pain is there, but thinking about it does not make it hurt less...it only hurts more :) I've had many enjoyable days with fibro and that's a good thing because there isn't a cure for it yet!

Wishing everyone an enjoyable evening!

Hugs, Robin
Fibromyalgia, Heart Disease, Pulmonary Hypertension,
MCTD (Lupus, Scleroderma and RA)
Raynaud's, Degenerative Disc Disease, Osteoarthritis,
Osteoporosis, Hypertension and Migraines
"Where there is a will, there is a way"

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 6/28/2011 7:54 PM (GMT -6)   
I live with my fibro everyday. I do not let it or it's wrath take over me. I am a fighter. I go to school, do clinicals, and try to have fun while taking things easy, as well. I found that I do one chore a day, very slow. I also found that I can do easy relaxing activities that I can still have fun and still get out. Though I am unable to do hikes and long walking, but I still find that sitting on a beach or even a trip to a city, where I can take a bus to get to places works best. I also find that if I nap when I am tired I can do okay. Though I have been having a lot of bad days, but even on those days, I still get out and sit outside. Also, love and support from friends and family help big time. No matter what the struggle is, the love that you receive from your loved ones helps gives you hope, motivation, and positive thinking that you can overcome anything.
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis for slow transit constipation: Aug 7, 2008
Numerous food intolerances
Now struggling with worse stomach, diarrhea issues, which are now uncontrollable.
Diagnosed with Lyme in 2009.
Diagnosed with Fibromyalgia and tremors in 2011

Woolrow
Regular Member


Date Joined Jan 2010
Total Posts : 102
   Posted 6/28/2011 9:42 PM (GMT -6)   
What Sherri said.....even the shower fells like thousands of needles on my skin.

After all these years it still feels like a weird nightmare. I know if I woke up pain free one morning, it would be like these last 17 yrs never happened and I would resume life without looking back.

OUCH9030
Regular Member


Date Joined Jun 2011
Total Posts : 48
   Posted 6/28/2011 10:09 PM (GMT -6)   
Yes with fibro, no 2 patients are the same....everyone can have different symptoms or some of the same symptoms. I'm 21 and have been dealing with this for 3 years now and still my life is a nightmare. I have other conditions besides fibro which add to the everyday havoc. Also another major thing I would like to expand on and I've read on here is about people's perception of pain. Everyone is different, and by this I mean the pain receptors in your body. Some people Could be hurting at the exact same level and with some say tramadol could do the trick to ease your pain and with other's tramadol would be like "eating m&m's" therefor meaning it would take a stronger opiate to help such as vicodin or oxycodone. I've been on roxycodone 10 mg 4 a day for the past year and 2 months and even from the begining I didn't feel like it was fully effective in treating my pain. But be 21 and try telling any dr. that lol. I can honestly say I am dependent, but in no way shape or form "addicted", without it I could not work. But besides that I believe (correct me if I'm wrong) people with just fibro are legally only allowed a max of 120 roxycodone 10mg per month??....So I have had to learn to somehow control my pain and figure out what I can and can't do and not to test my limits. I styill struggle every day sometimes I think even more so because obviously over that much time I have built up a bit of a tolerance to it, or my pain has gotten worse, or both. Also the fact that the more opiats you take the more pain receptors develop in your body causing you greater pain, this is NOT true with everybody. With a lot of people it is but not all. I suffer from what I think severe fibro fog...It's like I can't form a sentence in my head, and my memories horrible, trying to tell a story or how my day has been is a difficult task. I suggest this very cautiously, but people who can relate with what I was talking about with fibro fog....try a stimulate of some sort. They have all kinds of new safer ones on the market now than say adderall or ritalin. Finally to answer the topic of this thread.....as said above sometimes it feels like a bone crunching and muscle stabbing sensations with just pain and aches in randomn parts of your whole body, mine is mainly my back. So yea the steamroller as used above to describe it is pretty dead on.

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5595
   Posted 6/28/2011 10:20 PM (GMT -6)   
It's hard to describe, for me....I'd say a constant dull, throbbing pain allover, with sharper jabs thrown in here or there to add spice. Then there's the agonizing tight pain on my whole left side if I overdo it at all, and I do mean at all!

The weak, heavy feeling in my limbs is always there, too. The feeling that I never have the energy I should, that others obviously do - kind of like having a bad flu. Knowing that I'm forgetting half of what I want to remember because of my fuzzy, fuzzy brain.

What do you feel like, jr991?

Debbie
...fibromyalgia, hashimoto's thyroiditis, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......daily Nortriptyline, Levothyroxine, & Clonopin, and Tramadol and Midrin as needed

kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 6/29/2011 9:26 AM (GMT -6)   
For me it is constant pain, some times it feels like somene has poured boiling water down my legs.
My arms feel like the bones are being pushed out of place.
Lack of sleep really gets to me, the less sleep I have the greater the pain.
A GP wanted to send me to a sleep clinic, my answer was "Don't you need to sleep to go to one of those places"
She decided it was useless to send me.
As to how long I have had this thing 19 years

Kathy
FMS,CFS,IBS,MIGRAINE,MENAPAUSE

Snue
Regular Member


Date Joined Feb 2005
Total Posts : 188
   Posted 6/29/2011 12:17 PM (GMT -6)   
I get a lot of fatigue, even though I slept.  I get muscle weakness (feels like all the energy in your body has drained out your feet and you are carrying 100 lbs weights on your limbs).  I get fibro fog.  I get some shooting pains that stab me randomly around my body.  I have hypersensitivity to noise, odors, and my skin is hypersensitive (have to wear very soft things and tuck in shirts, nothing rough, etc.).  If I get poked by my dog the pain lingers longer than it should for a normal person.
 
I have to pace myself or I'll put myself in a bad way.
 
Stress negatively affects me and causes flare ups.

FibroNana
Regular Member


Date Joined Sep 2010
Total Posts : 193
   Posted 6/29/2011 12:25 PM (GMT -6)   
Hey everyone,

After reading this, I realize I do need to grieve and trust God...I can handle the pain..my issue right now is the swaying in my head..and my eyes..if it were only the pain..

but I'm being proactive, got my appts for this week..and this morning, I woke up!!! Recieve HIS mercies for today, an d I go on..but would someone please stop this ship from sloshing around in my head!!!

being online helps me take my mind off the other things but now I can't be online for long........so........see ya...

Make it a great day everyone...even if it's doing something small that makes you smile!

Jerrie/Fibronan
Fibromyalgia,meralgia paresthetica,degenerative disc disease,rheumatiod arthritis,depression,asthma
Cymbalta,neurotin,predisone,percocet
Juiceplus,coq10,malic-acid/magnesium,probiotics,fish oil

jr991
Regular Member


Date Joined Feb 2011
Total Posts : 186
   Posted 6/29/2011 2:19 PM (GMT -6)   
First of all I want to thank everyone so far who has participated in this thread. It's good to gets others real life examples of how they feel instead of looking at a symptom list trying to see if they fit.

I have not been diagnosed with fibromyaligia, however I can definitely say that I seem to be experiencing a lot of the symptoms. Also, in the back of my mind I am always questioning... well what if it's not this and I live the rest of my life with something that could have been treated if we just knew what it was.

Anyways... what do I feel like? Well for years I have always had kind of a "foggy" head or an "always drunk" feeling, also always exhausted... low energy, excessive yawning. Things got really strange a little over a year ago now with my muscles. Everything I did seemed to take days to recover from. I started having problems with my vision. Lots of floaters, seeing after images, eye pain. (this is the part that doesn't sound typical of fibromyalgia). My muscles aches and pains have taken on a completely new level of intensity more recently. Most of the muscles in my body feel sore. They feel bruised and hurt to touch. They feel like I've run a marathon, but I haven't done anything more than simple little household chores. I wake up in the mornings and everything is really sore... especially my hands and thighs. I would rate my energy at about 20% of what it should be for someone my age. I'm only 29 years old... healthy on paper but my body says otherwise.

One last point is I was recently diagnosed with sleep apnea. I have been using the CPAP for about a month now with no improvement but I'm not giving up on it yet.

Queenie =-}
Regular Member


Date Joined Feb 2011
Total Posts : 26
   Posted 6/29/2011 3:22 PM (GMT -6)   
Fibro feels like the opposite of what I should be feeling. I feel pain always. I have migraines daily. I have the dull aches, sharp stabbing pains. I am always tired and never sleep well - even if I am asleep for 7 hours. I describe it as feeling like my muscles are frozen or are trying to freeze in place. My fingers and hands are probably the worst all day b/c I use them the most. The fibro fog is the worse, considering that I used to be able to remember everything. I went from a vibrant 35 year old to a 40 year old who feels like she's 65.
I am not always this negative about it, but I am in the midst of a flare up, a migraine, and a rejection from the insurance company for an MRI I was really looking forward to - in the hopes of finding something that was fixable.
Usually I'm the one with my happy face on, and just getting through each day for my children. I'm just having a rough day!
I hope everyone feels good, and hugs to you all!
Gentle Hugs!

Queenie =-}

DX: Fibromyalgia, migraines, herniated disc, buldging disc, RLS...

Smile big and pass it on! It's infectious!
Always be who you are because those who matter, don't mind
and those who mind, don't matter!

Deranged
Regular Member


Date Joined Jun 2011
Total Posts : 21
   Posted 6/29/2011 4:35 PM (GMT -6)   
It's impossible for me to put everything into a "short" paragraph, as I have just way too much going on. And I want to give you a clear snapshot of what my life is really like...

It's hard to tell what's FM and what's not, especially since FM exacerbates any independent issues one may have. Ex: my bulged and torn disks shouldn't be causing an issue, but the FM makes it almost debilitating.

Without medication I can't get out of bed, never mind work or even walk. With medication I can walk, with a cane. Work, to some extent. Do house- and yardwork, with a mobility walker ( www.medicalequipmentwichita.com/ for those that don't know). I often get confused, and have that "brain fog", which to me feels like I'm stoned (or drunk). I often have trouble remembering or concentrating, I sometimes feel like an Alzheimer's patient in that regard. Without medication I can't eat, I have trouble urinating, I have severe bowel cramps. Every morning I wake up, I feel as though I have barely slept, even if I do manage a full night (6 hours, for me, is a full night). Every moment of every day my muscles and other soft tissues feel as though I just spent 3 hours at the gym. Exercise increases this. Laying down to sleep is excruciating, as every single pressure point is screaming at me. Without medication, I do not sleep. Literally. Imagine sleeping only 2-4 hours for every 32 hours awake. I must get adequate sleep, adhere to a strict diet, strictly adhere to my med schedule, and be as active as possible, or my symptoms worsen.

Today is a good day: I'm tired, I'm sore, I'm slightly foggy, my stomach hurts, I can't eat. But I got out of bed, took the dogs for a walk, and shopped. I even put my name in to go to work today. I may even go out and do yardwork.

Unlike others, I will never accept this. Adapt, deal, but never accept. I will continuously keep up to date on every single research paper and clinical trial that comes out. I will continually try every single new method, device, or drug that might make me feel human again. Some deal through acceptance, which is fine. I deal through fighting, which is fine also. Although, I think, I'm a slightly unique case around here. The FM is "attacking" my entire digestive tract, making it impossible to eat or drink a thing without drugs (3 days with neither food nor fluids is seriously pushing one's luck skull ). In the beginning, I only had two options: lay down and die, or fight and find a way. I guess the fight just stuck with me. mad

As has been already said: stay as active as possible, eat healthy, keep positive thoughts, when the pain is at it's worse do something to distract yourself. Do not allow it to take over your life. Find something to live for, and focus on that instead of the pain. Find a support group (real time, not internet). My family is useless, so I use my in-laws as my support group... and my dogs, and of course my partner :-)
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