this might be a silly question, but...

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ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 10/30/2008 3:12 PM (GMT -7)   
do you *always* feel terrible with fibro, even on a good day, and then feel worse in flares? Are there ever days / weeks where you feel normal, awake and energetic?

I'm tired and struggling all the time, and I'm just wondering if it will ever get better, especially as some of the veterans here say that the disease intensifies over time.

Ivy.
Co-Moderator Crohn's Forum.


Gamma
Regular Member


Date Joined Feb 2008
Total Posts : 233
   Posted 10/30/2008 4:29 PM (GMT -7)   

Hello Ivy,

I guess you could call me a veteran, next wk. on my 56th birthday it will be 52 yrs. that I have dealt with fibro, among other things.  No, it is not all doom and gloom.  However, many things have to fall into place if you want to lead a fullfilled life.  I don't let anything stop me.  With the right attitude, right combo of meds and supplements, getting a good nights sleep on a consistant basis and support from friends and family, anything is possible.

The longer you have fibro the easier it is to automatically adjust the way you do things.  You can't let it control your life or be on your mind constantly.  I'm in a wheelchair, black out from absense seizures and don't drive. Boo Hoo! Poor Me. Bologna!  I am one of the busiest people I know.  My husband has a hard time keeping up with me.  I have hobbies, cut the grass, work in my yard, take care of 2 large dogs, cook, clean, do dishes and laundry and dozens of other things.  I am never embarrassed to have someone in my home, which makes me proud.  I never leave the house without looking like a million bucks, I won't go out in public and have people tell me how awful I look, I don't want or need their sympathy.  I'm not a religious person, but I believe the Lord helps those who help themselves.

So, I guess what I'm saying is have a good attitude, believe in yourself, exercise, rest and get out there and live life like each day is the most important one yet.

 


Gentle hugs,
 
Gamma
 
Fibro, Osteoporosis, OA, RA, DDD, IBS, Vertigo, Tinnitus, Carpel Tunnel, Epilepsy, TMJ,  Hypothyroidism, Familial Tremors, Spasms, Neuropathy, Trigeminal neuralgia, heel spurs
 
 


leemadd
Veteran Member


Date Joined Sep 2008
Total Posts : 532
   Posted 10/30/2008 4:44 PM (GMT -7)   
when i was first diagnosed i felt felt horrible then i felt good really good normal i was beginning to think the dr was wrong then of course it hit me again then better then again. Today I think is the first time I have actually delt with the fact that i have fibro and it was not a pretty sight

Jeannie143
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Date Joined Apr 2004
Total Posts : 6056
   Posted 10/30/2008 5:28 PM (GMT -7)   
I just take it one day at a time, sometimes one hour at a time and figure this is my life and I'll keep going. If I stop and think about how bad it gets I get all depressed so I try not to. And to be honest, I really don't know what normal is... I've had this so long. So I guess for me, this is normal.

Try to focus on the good stuff in your life. That makes you feel better and helps with the rough times.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40603
   Posted 10/30/2008 5:32 PM (GMT -7)   
I have had fibro for about six or seven years. I don't think it is progressive. I think I got a handle on it with medications and supplements. Life isn't perfect, and there is a fair amount of pain, but you get use to it I guess. You try not to think about it so much. At least I do. The more I keep my mind occupied the better I feel.

It isn't a walk in the park, by no means. But you can still live a productive, happy life.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 10/30/2008 5:47 PM (GMT -7)   
I guess we all have a different outlook on this disease. I was  Dx'd with four different things all at once: Underactive thyroid (most likely hashimoto's), anemia, dysmennorhea, and Fibromyalgia. So it's hard to sort out which came first, what is related to what, and so on. At that point I was still with my sons. 25 mgs of amyltriptilene at bedtime and OTC tylenol is all I took. Then, slowly, the prescribed meds didn;t work so well anymore, so I went begging. The doctor threw in some muscle relaxers. Then I needed something for pain. I scheduled four root canals back to back to get some relief. That was when doctors were fond of saying, " it's all in your head." I got a lot of that. Mainly, I struggled along untill I couldn't anymore. I went on disability for a short time. Then I returned to work, and just as I was catching up, working 16 hour shifts, I was mowed down by a truck. Thank-you lord. No more struggling. At least now I had a legitimate (in Doctor's lingo) disorder, they could actually treat.  When I have what I need to feel OK I have good days when I have the right meds. For me, I wake up early 5AM, take my morning meds and when I feel able, up I get and go outside with the dogs. It is so simple. If I didn't have to fight so, for what I need to live a simple life, I have lot's of good days.

RedDiane
Veteran Member


Date Joined Jun 2007
Total Posts : 906
   Posted 10/30/2008 6:15 PM (GMT -7)   
I've had fibro for 24 years now. I have gone slowly, but steadily downhill. I have never had a good day, as far as feeling good or having any energy. I also haven't really had any "flares" where I felt really bad for no reason. Overdoing it, vacations, 12 hours days of driving--those set off flares. I do think it's progressive, because I've gone downhill all these years. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/30/2008 6:40 PM (GMT -7)   
Thanks, all. I'm still fairly new to this - my Crohn's has been so bad for the last ten years that I didn't really focus on the fibro much, even though it was there and bothersome - and it's only now that the Crohn's is a little more controlled that I'm struggling to find a benchmark of what's the new "normal" for me. I keep thinking that the fatigue etc might resolve itself and I'll start to feel better one day.

Am I right in thinking, from what I've read here, that this won't happen?

So... "normal" from now on is feeling tired and achy and clumsy and exhausted and wooly-headed, and I should just accept that, and adjust my life accordingly, especially as I know that my fibro could easily get much, much worse?

Is that right?

Thanks, all. I appreciate your advice. I think *acceptance* is really important. This hoping and waiting for better days is getting both hard and dissapointing.

Ivy.
Co-Moderator Crohn's Forum.


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 10/30/2008 7:27 PM (GMT -7)   
Somehow i feel I have to object to the notion that Fibro is a downhill slide, never to have "good days"or even "good weeks". More so, I think we lose our energy and youthful glee, as everyone does as their age progresses, we lose more and more agility, we gain more arthritic joints, we're more stiff and slow, but this happens tomost people. If you find a doctor who will listen to you and respect thet you have some ideas about how best to care for you're body. It might  not be the ideal situation but it isn't the worst situation, either.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 10/30/2008 7:49 PM (GMT -7)   
Hi Ivy,
 
I have a slightly more different experience with my fibro.  I was diagnosed 7 years ago with it (about 8 months after my lupus diagnosis).  I had all the tenderpoints, but nothing else!  Then, after a very serious health crisis 15 months ago, the fibro came out of hiding. I've been in a severe flare up since the summer of '07.  It's weird.  I've had fibro for 7 years, but I'm just now really knowing how horrible it is. I am learning all about it now, 7 years into having the disorder. 
 
So for me, it was definitely a physical trauma trigger that made this "quiet disorder" an absolute beast.  I guess it can ebb and flow from time to time. For me anyway.  I haven't had a break from the flare up in 15 months. I'll just have to wait and see if I ever do get a break.
 
It is really discouraging isn't it.  We sure do understand Ivy. 
 
Blessings,
ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, Zoloft, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


QTKaren
Veteran Member


Date Joined Apr 2008
Total Posts : 605
   Posted 10/30/2008 11:31 PM (GMT -7)   
I do beleive that you can have some very good days and some really not good days, Its like sometimes I wake up and the pains low and I am full of energy and get up and go. I cant wait to get out of the house and go shopping or spending time with my daughter or grandkids and I do faily well and hold up pretty good until around say 5pm and then all the energy dissapears and the pain comes crashing in and I am just so fatigued. But I did have those good hours and nobody can ever take that away from me. It's like so what if I crashed at the end of the day?

I havent really had this long enough to say its progressive,for me its only been about the last 5 yrs and finally a dx'd almost a year ago but had all the symptoms. so cherish the good days and try to be kind to yourself on bad days.

Soft Hug's,
Karen
Karen
 
Mom of one gramma to 4 lover to One
 
Fibromyalgia,IBS,Stroke x2,endometriosis,Diabetes type 2,neuropathic pain,nerve damage due to tailbone removel,nerve damage due to fractured back,deppresion,high blood pressure,severe nausea,atrophy,chronic pain,nerve damage due to botched bladder surgery,torn hip joint,hypoglycymic
 
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Mazfire
Veteran Member


Date Joined Oct 2008
Total Posts : 1683
   Posted 10/31/2008 2:00 AM (GMT -7)   

Ive had CFS for 13yrs- diagnosed at 15. the Fibro came after.

I have not had a single day of feeling well in 13 years, minimum.

I do not remember what good, 'normal' health feels like.

Some days are far better than others.

The show goes on  sad   

Maz XX



'He heals the broken hearted and binds up their wounds.' (Psalm 147:3)
Chronic Fatigue, Fibromyalgia, TMJ disorder, Endometriosis, Polycystic Ovaries, Chronic ear/nose/throat infections, Panic Disorder, Reactive Arthritis, Agoraphobia, Migraines, GERD, Anaemia, Sinusitis, Chronically perforated eardrums, Pinched Nerves, IBS, Tachycardia, Allergies, Insomnia, Trichotilomania, Glandular Fever, Bursitis, Encapsulitis, Seasonal Mood  Disorder, Mild OCD.
Meds: Zoloft 150mg. Xanax 4mg. Nexium. Celebrex. Mobic. Panadeine Forte. Digesic.
Multiple surgeries- I bear the scars of my poor physical health.
Age:28. First diagnosed at 14. Proud Aussie. XX.
 
 


Tootiebug58
Regular Member


Date Joined Feb 2008
Total Posts : 378
   Posted 10/31/2008 3:14 AM (GMT -7)   

I was only dx a year ago, and I am SO fed up feeling this way.  I know I had fibro long before I was dx and I cannot remember a DAY when I have not been in pain for a very long time.  This week has been absolutely terrible, so bad that I have been having panic attacks, have not slept more than 3 or 4 hours a night, and since I have dry eye, my immune system is shot and developed a bacterial infection in my eyes.  I hate these days and nights, just cant seem to cope.  Sorry for rambling, but I am exhausted and fed up.

hope you all have a better day


Tootie
-------------------------------------------
anxiety/panic attacks...osteoporosis....Fibro
 xanax


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 10/31/2008 3:33 AM (GMT -7)   
Ivy, I'm like the rest of the people here.  I've had fibro for 21 years and, for me, it has gotten a little worse over the years.  I don't remember what it was like to get up and feel refreshed and have no pain.  But, I will have good days and bad days.  I also have a period of time..usually several months...where the pain is a lot less than usual
 
But, as Gamma said, a lot of how you feel has to do with not only how you control the pain but also your attitude.  I know that once I accepted this illness then I could push it in the background.  I, too, have Crohn's and for many years the Crohn's was my main health problem.  Now that I have that under control the fibromyalgia is my main health problem and causes me the most problems.  But I can find ways around it and do what I want to.  Jeannie was right.  Don't think about it.  Just move on with your life and you will be surprised how the pain will fade in the background!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/31/2008 5:54 PM (GMT -7)   
Thanks, everyone. And Ginny, I remember your post on the lupus forum about the terrible pain you've been having - I hope things improve for you soon.

I hear you all: try not to let it hold me back, and try to keep a positive attitude and keep doing things. Am I right in thinking that I should continue to pace and have rest periods, even on good days?

Thanks,

Ivy.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/31/2008 6:36 PM (GMT -7)   
ps. I think what I'm really asking is this:

Is being exhausted and sore an indication that you're in a flare, or is that the normal baseline state for someone with fibro?

How can you tell if you're in a flare, when there's no blood test etc you can have? Do all people with fibro flare eventually?

Sorry. I know these are basic questions, but I couldn't find an exact answer in the 101 etc threads.

Ivy.
Co-Moderator Crohn's Forum.


bridgewitch
Regular Member


Date Joined Aug 2008
Total Posts : 26
   Posted 10/31/2008 8:14 PM (GMT -7)   
If you have been pretty stable..ie one day pretty similar to the previous.. then you really notice pain, fuzzy thinking, stomach symptoms, headache, and so on and so on all at once (fill in your choice of bothersome here), in my experience you are having a flare. However, no day is by any means a walk in the park. I tend to flare after a stressor..and it can be an itty bitty one..but it sets off the whole gamut of gremlins. You prolly have a warning in your being tired..if my CFS has been level, then all I want to do is just stop and lay down come heck or high water, I know I am gonna flare and try to destress some to head it off. My sister lost everything in the Texas hurricaine and I have not had a good day since 9/12 but have had plenty of really bad ones.
Its NOT denial..Its selective reality!


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 10/31/2008 10:33 PM (GMT -7)   
My mom is diagnosed with MS and she has about 60% bad days where she is totally wheelchair bound, about 20% of days lays in bed, in the dark, and about 20% of days when she can run down a hill or up the stairs. I find my Fibro takes a similar course; about 60% of waking unrefreshed, being stiff and sore and not able to get much done untill my medicine kicks in. about 20% of days when the medicine does nothing and I classify it as รค day to be gotten through, mostly laying down, meds do nothing. And by gosh and by some miracle, about 20% of days with just mild symptoms, I can actually see a light at the end of the tnnel. Sure, I tire easily, but if I can pace myself, I can make the "good"spell last. Unless of course something untoward and unexpected happens that puts me in a tailspin.

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/1/2008 8:25 AM (GMT -7)   
My fibro stayed about the same and even though I had less energy and pain daily it didn't really start getting bad til 18 mos ago when we lost our oldest grandson. Stress has a lot to do with it. Fibro seems to have a ball when your already down. The pain has spread to about every part of my body and I have less energy than I did before.
 
However, I still don't have as much pain as many do. I think the amitriptyline I take helps that. Most of the time fibro pain is soreness that I can deal with. The arthritis pain in my hands is worse than the fibro most days. Fatigue is a big problem for me. I get so frustrated with the fatigue I could just scream somedays. I have so much in my mind I want to do and the body just won't cooperate.
 
I do have some great times, just on a smaller scale. I may not stay at a party as long as I use to or set up half the night visiting with family or on the phone talking to friends but I'm living my life. I try to simplify things so I can do more. Weed out the unnecessary things to get to the good things.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
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Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/1/2008 9:40 AM (GMT -7)   

lIvy, I always have some level of pain and fatigue but, when I'm in a flare, I really notice a difference in the pain and fatigue.  I've had flares last several months!  I do always pace myself though.  I have enough pain without creating more. 

I have had a great life in spite of fibro though.  That's where the positive attitude, sense of humor, and just keeping on living your life comes in.  I can't do as much as I used to but I do get everything done eventually.  My perfectionism has been cast to the wayside.  But, I am having a lovely life! 

Sherrine


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


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/1/2008 3:43 PM (GMT -7)   
Thanks, all. That has really clarified things for me.... And, reading your answers, I think I can safely say that I am in a fibro flare at the moment, and that things might get better :-)

Again, thanks for all your input on what must have been some pretty basic and boring questions. I really do appreciate it.

Ivy.
Co-Moderator Crohn's Forum.


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 11/1/2008 5:39 PM (GMT -7)   
Ivy, that was not a boring or bothersome question, at all. It helped me immensely. Since getting a view through the mist of depression, by getting meds straightened out, I can honestly say, I'm reevaluating the whole Fibro question. For myself. I have BiPolar disorder also. I get way out of whack when left to my own design vis a vis how to manage. I fight tooth and nail to be "in charge" of how it should be managed. When left to my own devices regarding my Mood Disorder, I can get in terrible emotional tangles, and much of it manifests as somatic pain.Time will tell.

donnaeil
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Date Joined Jun 2006
Total Posts : 1156
   Posted 11/1/2008 9:31 PM (GMT -7)   
Every time I get better, age take effect.

Donnaeil

tyno3
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Date Joined May 2008
Total Posts : 1081
   Posted 11/2/2008 2:14 AM (GMT -7)   
Donnaeil: Do you mean that when you begin to feel better, like the Fibromyalgia is being managed, the fact that we are all getting older, joints hurt, we're tired, heavier, less active (older), that makes the Fibromyalgia worse?
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