How long did it take you to "get used to it"??

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Regular Member

Date Joined Oct 2008
Total Posts : 257
   Posted 12/10/2008 11:31 PM (GMT -7)   
Hi All!
I've been away for a few weeks - partly, because I need to ignore you all once in a while.  Well, not you, exactly, but the fibro talk.  I get sick of it.  I get frustrated.  I get so tired of being a part of it. 
I was dx'd in April, and this "flare" is getting me down.  I hurt all over, and now I have a cold.  I can hardly function during the day.  I am waiting for my disability policy through work to kick in; I have been without income since October 1st. 
I think the hardest thing for me right now is not being able to plan - for anything.  I never know how I will feel, and if I push myself, I'll pay for it later. 
How long will my boss hold my job for me?
When will I feel good again?
What do I try next in the way of treatment(s)?
Will I ever by myself again? 
I wish I knew definitively the answer to any of the above questions.  But if there is anything you can count on with this dreaded disease, is unpredictability.  I've learned that.  Now I just need to accept it.
*Severe Spinal Stenosis, ACDF Surgery Levels C5-7, Jan 07, Degenerative Disk Disease, Osteoarthritis,  Dx'd Atypical Migraines & Neuropathy Jul 07, Dx'd Fibromyalgia April 08,
GERD, Insomnia, Undiagnosed Inflammation with Elevated Sed Rate, C-reactive Protein
Mom to 2 College students +1 Exchange Student in Germany, stepMom to 2 marrieds, 8 stepGrands and my third job is being a pastor's wife.

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Date Joined Sep 2008
Total Posts : 532
   Posted 12/11/2008 5:57 AM (GMT -7)   
Oh sweetie I dont think we get use to it at all I think we cope with it,
As far as your job Its very hard some days to even get out of bed,I do it because I know that I have to, Somedays when I leave the house I wonder how Im going to work, Sometimes I feel better when I am at work and moving around sometimes I come home and crash. You will feel good again. When I was first diagnosed I wasnt sure that I really had fibro that was October 2007 the winter months were horrible. then spring came and I felt a lot better So I started thinking I dont have fibro Then at the end of July I started getting a lot of pain again, Did alot of research and still did not want to believe I had fibro, I posted here back in October and I had a day where I cried all day and finally came to terms with the fact I have Fibro, Now I am constantly tring new things, I take a B complex I take calcium and Vitamin D, A multi vitamin and The malic Acid and Lyrica, Even though I am taking that there are days I hurt so bad. I take alot of motrin and tylenol. I have flexerall a muscle relaxant and take that at night if I am in a lot of pain. You just need to take care of you self and find something that works for you, I take a lot of hot baths I am probally cleaner than any one in the county.hehe. I am sorry that you are having a hard time right now all I can say is keep trying until you find comfort. I know you are a pastors wife sometimes it comforts me just to talk to God and work through it with him. I actually went through a faze where I was angry at him and asked him why me all that stuff you probally already know. In my heart I know he will not and never has gave me more than I can handle even though at the time it may not seem that way. I hope you find some comfort soon.

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 41938
   Posted 12/11/2008 7:43 AM (GMT -7)   
I took that negative and turned it into a positive, well the fibro did actually. I know that it is difficult when you can't plan anything. But I found out this caused me to live one day at a time. Which is something that I never did pre fibro. So in a way it is a good thing.

Try not to obsess about it. Try to take things one day at a time and go from there. That is something new that you have to accept in your life. One Day At A Time....

Worrying about the future will only make your anxiety level go up. I read a little poem that I think is appropriate for this topic.

Yesterday is history,
Tomorrow a mystery,
Today is a gift,
That is why they call it the present.

Once you get use to the fact that you can't worry about the future, you will relax with the fact that life is on a daily basis now. So try to just go with the flow. I did and it made life much easier.

I hope that you are having a wonderful day.

Luv and hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

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Date Joined Apr 2005
Total Posts : 17529
   Posted 12/11/2008 9:13 AM (GMT -7)   
Hi!  You know, Karen is spot on.  You do need to take one day at a time and look for your many blessings in that day.  Try not to think about or dwell on how you feel.  If you start focusing on other things I have found the pain fades in the background. 
I, too, talk to God a lot.  I have never blamed Him, though, because I know He doesn't "give" you illnesses and misery!  It's just the way my life panned out.  But, I could be severely disabled, not able to walk and live my life, could have a terminal illness, etc.  When I consider this, fibro isn't so bad after all!
The best thing is to accept it and move on.  You are trying different things and that is good.  We never know what will help us feel a little better.  I have had fibro for 21 years and can't remember what a day without pain feels like, but I still have a wonderful life!  We can help you learn how to work around fibro and still do the things you enjoy.  It may take you a little longer to accomplish things, but you will STILL accomplish them if you set your mind to it. 
I hope that you will start feeling a little better soon.  We all have so many things to be thankful for so try to focus on them.  Have a much, much better day!
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

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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/11/2008 10:38 AM (GMT -7)   
Hi Julie,
I'm at the same point you are.  I don't know if I'll ever get used to this.  I'm struggling too.  I just wanted to let you know you're not alone in your feelings.  ((((((((hugs))))))))
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, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Jun 2008
Total Posts : 846
   Posted 12/11/2008 8:08 PM (GMT -7)   
Hi Julie, I understand how you feel. Sometimes I stay away too. I've come to love the people, but I don't always like to focus on what my body is feeling. This DD sucks, and I'm down, I'm angry, I'm fighting it, I'm in disbelief that I can turn so fast from feeling great to unable to move. I hope that one day soon, I can accept adn make it easier for me to move on with my life, with it's new limitations. no, not limitations. New ways of getting around obstacles that fibro throws my way.

Often my dh tells me, take it easy, you know you'll hurt if you overdo it. And my answer is usually in a whine, "but I don't want to take it easy! I want to be the same!" Well, life changes, and fighting it only makes things harder. And when I do need a little pick me up, this is the place I turn to for help in putting things in perspective.

Keep posting Julie, we'll get through this. (((HUGS)))
Waiting for appointment with rheumy (March 2009) to get an official dx. waiting, waiting, waiting....
Taking malic acid/magnesium combo, what a life saver! and amitriptyline

Regular Member

Date Joined Jul 2008
Total Posts : 368
   Posted 12/12/2008 7:39 PM (GMT -7)   
Im afraid im always  very negative about it.  Every where I look I think ' how come me'  Everywhere I look I seem to see healthy normal families.  Mentally I havent adjusted to it except I know its not ever going to go away.  I just try keep busy according to my pain levels day to day. My biggest concern is getting older with it and perhaps getting other things wrong on top of it.  Not much of a help to you I guess.  Just try stay busy.  Im sorry for all of us having this thing that no one acknowleges.   sue2z mad mad
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 12/13/2008 10:44 AM (GMT -7)   
Fibro was also hard for me to accept. I use to be a perfectionist that was always on a schedule and knew what needed to be done everyday of the week and I didn't quit til it was all done. Now energy wise it takes me a week to do what I use to do in a day. The perfectionism and schedule went out the window long ago. Now I do what needs to be done the worse each day and most of the time run out of energy before it's finished. I hate this DD and what it has taken away from me but..........
Since I have been dxd with fibro I have lost an aunt and uncle that was dear to me, a sister in law to cancer at the age of 54, two brother in laws to cancer at young ages and a 20 yr old grandson in Iraq. I have a 56 yr old cousin fighting for her life with cancer. I had a long talk with her last night and her attitude makes me feel like a wimp. She never fails to ask me how I'm feeling and she was concerned that Ken had to have a pacemaker put in. She has chemo every three weeks and is sick for days after. Her last scan showed that most of the tumors are shrinking but new ones are developing. This may be her last Christmas but she doesn't let herself think that. She is actually still working although she does a lot of work from home. I know the stock she came from and she will not give up the fight til her body quits. I got a call a couple of days ago from another first cousin, he is 63 yrs old, and they think he has colon cancer but he is not sure he wants to continue with the testing. He has a lot of anxiety and depression problems and said if he is dying he doesn't want to know. I'm quite concerned about him taking his own life and pray that his daughter and 8 mo old grandson is enough to make him fight this if it is cancer.
So as far as I know I do not have a terminal illness so I can think about the future, although we never know of course how long any of us have, but there are some that know their lives will be cut short and they are living on borrowed time. After talking to Teri last night my strength and will was stronger in fighting this DD cause in the scheme of things fibro really isn't that bad.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

Regular Member

Date Joined Nov 2008
Total Posts : 263
   Posted 12/13/2008 10:47 AM (GMT -7)   
This thread has really helped me - more than any other so far. So thanks for that, everyone.
I guess this thread has shown me that I'm not alone in the things I feel. Usually, I'm optimistic, since that's the kind of person I am. I wake up every morning in denial! Then then day progresses and know the story.
May I add...
WOE IS ME! and

(It helps just to "say" it sometimes)
I have Fibromyalgia, but nothing else!

I take Lyrica 150mg b.i.d.
Tramacet 75 mg for breakthrough pain

Tried amitryptelene 2.5 mg but it made me a zombie!

Veteran Member

Date Joined Jun 2008
Total Posts : 844
   Posted 12/13/2008 12:24 PM (GMT -7)   
I'm with Sherrine and Marlee about thinking positive thoughts.  I too have lost some loved ones in the past year due to cancer.  I'm sure they would have traded their terminal illness to Fibro.  I can always look around me and see so many in troubled times. 
Let's start the New Year off with a positive attitude to take one day at a time and if you believe in God, ask him for strength to make it through each day.
God Bless!
Of all the things that I have lost, I miss my mind the most!!!!

New Member

Date Joined Mar 2005
Total Posts : 12
   Posted 12/13/2008 5:20 PM (GMT -7)   
I got used to it. I'm 23. It took me five plus years, and I had to withdraw from school for a year and a half (partly due to depression which was due to fibro, which was made worse by depression, which I recovered fully from by last Christmas).
I always 'brag' that I have seen every doctor, and have done X-rays and MRIs and CatScans like nobody's business. (To healthy people, of course). The other day I was reassuring a friend with cancer that you can bring a stuffed animal with you in the MRI and the catscan). The alternative therapies, helped for a time and then of course, didn't. Though I recommend Chiropractic Neurology (not the adjustment part, that hurt like heck) because of the use of Oxygen Therapy and eye-light therapy, and ultrasound. Oh, and sunlamps are good for keeping away the 'fibro blues'.

By used to it I mean it doesn't make me sad or angry anymore. I know what I have to do to be able to do the regular stuff, and I know what not to do.

Since I'm only 23, and I have no other pain-causing condition (though I recently found out I have Narcolepsy, as in last week), it is very likely easier for me to tolerate the pain than someone with arthritis etc.

I don't have a choice, anyways, because I'm going to finish school, then I want to be a Wildlife Biologist and trek around in the arctic tundra tracking Caribou, and all that, and sometimes people ask me, ''well what if you get really fatigued and you can't do it, or what if it hurts too much and your muscles spasm, or blah blah blah'' and I tell them that I never take that into account for events in the far enough future, and I also counter with 'ifs' about all sorts of freak accidents that could occur to them, that usually shuts their mouth ;)

Its difficult though, with the whole 'invisible illness' part, where I constantly have to exxxpllaaaiiinnn what FMS is and what its like and how it feels or blah blah, and people just look at me like i'm explaining a hangover or something! (Yeah, not drinking is another of my 'not to do' things).

I'm somewhat ashamed to say this on a fibromyalgia forum, but now that I've found out I have Narcolepsy (its sleepiness, inability to wake up, and sort of a constant fibro fog but in an attention deficit way, and other stuff unrelated to fibromyalgia) I am so excited!
Now I will just say 'Narcolepsy' and people will say, ohhhhhhhhh.

It will make more sense when I need disability services at school (fibromyalgia is so vague on paper when read by people who don't know much about it), and I can lump my fibromyalgia symptoms (that aren't Narcolepsy symptoms) together with my Narcolepsy, without having to launch into a thesis on fibromyalgia.

Of course, socially i will explain the fibromyalgia (because of the sensitivity to touch and pain, and how I can't sit still ever because it hurts too much to stay in one position), in work and school the narcolepsy will sum it up well.

I always feel guilty for having Fibromyalgia, because so many people don't understand it, and since I HAD (as in no longer have) depression, new doctors try to mix those up, and people accuse me of depression because I'm tired...

I'm framing my diagnosis of Narcolepsy, because I have definite proof that being tired and sleeping too much isn't me being lazy or depressed.
I would not want to frame a diagnosis of Fibromyalgia (which I never actually got on paper, by the way) because to so many doctors (esp those in the psych. field or after learning you have depression) treat it as Depression, instead of the fact the depression is a symptom of fibromyalgia.

So, I got used to it, but it always made me feel guilty and I always doubted myself, and I would have continued to do that until I got cancer or became paralyzed or something else happened that other people believe and understand.

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 12/14/2008 8:33 AM (GMT -7)   
Kat I hope all your dreams for the future come true. smilewinkgrin
It depends on who I'm talking to as to what I tell them. I have told my neighbors I have muscle problems cause when walking out side I lose my balance sometimes and walk as if I've been drinking.
My close family knows I have fibro but some distant relatives I tell them I have an auto-immune problem and arthritis, which I do have both. I think we all pick and chose who and what we want to tell them.
I was surprised this summer when we went to a family reunion on my DH's side and he told them I had fibro and several older women said, "oh, your in a lot of pain then".
I think this is easier for older people that have aches and pains of their own to understand than younger people.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
Co Q 10, Super B Complex, Extra B12, Multi vitamin

Regular Member

Date Joined Nov 2008
Total Posts : 55
   Posted 12/14/2008 4:01 PM (GMT -7)   
Julie, I had been symptomatic for about 5 years or so, so even though I was just officially diagnosed last month, I have spent a long time getting acclimated to it. The one good thing about the diagnosis is that now I know for sure what my limitations are. No more walking through life in a haze because I never felt quite well anymore and didn't know why. In that respect knowing what I have makes some things easier to deal with.
However, that sword is double-edged. Because I know what I have, and know that there is no cure, some days it makes me feel so constricted and kind of claustrophobic. I spend some time with the "why me?" question filling my head, and at times, I also don't want anything to do with anything remotely related to the problem, including a forum. I think those days might be depression, and I'm going to discuss it with my rheumy next week for my visit. I don't want to sound whiny to him, since I know he hears it all the time from patients he diagnosis. I feel like I'm not trying hard enough with my physical therapy, medications or pain management if I have to report to him that I'm not only not doing well, but feeling worse than the first time I saw him.
I don't think I will ever get used to this, especially since I am someone who is used to being in control of every situation, and other than treating some of the symptoms, this is one thing I can't control. I'm sure just about everyone on here feels like you do sometimes, and like Karen says, just tries to take it one day at a time. If I try to look into the future and what the FM could potentially do to me, I would surely go insane. I have my wonderful family around me, a job I enjoy, working with people I feel are like sisters to me, a home to live in where so many do not, and while my health is not top-notch, I remind myself it could be worse.
I think there's probably going to be many days where it's hard to accept, and that's okay. We're only human, and that's part of what we are. Unfortunately, this is one of those ailments that cause more questions than we have answers for, and I think not knowing those answers is what makes us the craziest. At least it does for me. If I have a pain, I know I can take a painkiller. If I'm tired, I can try to sleep. If I want to know how much longer I'm going to be able to hold down a full time job before it gets to be too much, well, I'm pretty much SOL, ha ha! Take heart, Julie, we'll all be here for each other. Try to take care of yourself, hun.
Live, Love, Laugh. We only get to ride this ride once!

Regular Member

Date Joined Dec 2008
Total Posts : 139
   Posted 12/15/2008 12:40 AM (GMT -7)   
Fibro is terribly hard for me to deal with because I feel like I'm spending my youth on the couch in pain. While everyone else goes out and gets drunk, I just sit home with my cats and watch tv. I've learned to hide my pain, so most people don't even notice it. I only show it to the people I'm close with. When it finally dawns on them how much pain I really have, I feel like they can understand me about as well as someone without this disorder.

I do feel like it's a blessing sometime because while everyone else is just looking at their next year as college students, I'm already dealing with my life beyond it. I have figured out how to adjust my life to the pain. I feel so much more mature than everyone around me. I also have learned how to manage my time amazingly well. I have learned how to space all my chores out over the day and to stay home from one day of classes so I can make it through the week. It's helped me know what's important and every time I'm able to do something I feel so much better. I do well while distracted. I even have gotten some of the people who are close to me to realize that it's really a disability although that is a constant strugle that is so frustrating.

It has also alowed me to see the world around me more clearly. I am more consious of what I eat, and have switched to a local, organic diet. It has also made me realize that my future won't be about me. I want to devote my life to helping people and animals in need.

All you have to do is make it through this one day and then get up the next.
Fibromyalgia: 2008

Effexor 150 mg, Flexril 5 mg, Gabapentin 600 mg

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