Can this really be happening?...

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Regular Member

Date Joined Jan 2009
Total Posts : 43
   Posted 3/17/2009 6:09 PM (GMT -7)   
I haven't posted here for a long time, but I joined the board a while back.  I have been keeping up with some of the threads on a hit and miss basis.  I have finally been diagnosed with Fibro., and like everyone else, I have a bunch of Dr. bills to pay now for all the things they tested for that didn't add up.  So here is my first true fibromite coming out! 
I am having a really hard day.  Like others have said, I have a very bad headache and pain in too many places to mention.  But I got to thinking today again about how this is forever....  How can I cope with all this pain for so long?!  My rheumatologist will see me again in 1 month to start me on more meds specific for fibro. but I have had very little relief from anything.  I take 2 flexeril and 2 ultram when I go to bed at night and I take 2 ultram at a time during the day, usually 3 different times. 
I am trying the exercise once a week right now, but I am so weak and heavy with all this pain.  Some days I do better, but I am sooo tired and sooo weak and my family expects soooo much from me.  I am just tired of feeling so unappreciated and neglected of compassion.
Thanks for listening.

Irish Babe
Veteran Member

Date Joined May 2007
Total Posts : 1380
   Posted 3/17/2009 7:10 PM (GMT -7)   

Hi Jules, welcome to the forum, I don't believe I've said that to you before. I'm sorry you got the dx for Fibro, but this is a good place to come if you got it. If it weren't for dr bills, I wouldn't get a chance to practice my penmanship. LOL 

I'm sorry to hear that it has been a bad day for you, unfortunately they can be common w/ this DD. Headaches and multiple places of pain. This can be very hard some days. I hope you got a chance to look at the top of threads, there are many interesting topics that you may find helpful. Fibro 101 is good.

I know this feels overwhelming when you think about this being FOREVER, but sometimes it helps to look at things one day at a time. I do this to myself sometimes and I feel like I am smothering. I need to step back and 'look' at today not everyday. If you know what I mean.

Re: exercising, maybe don't go overboard, go easy at first and build yourself up to more intense exercise. If you're feeling really bad, it might be a good day to do some gentle stretches or an easy walk around the block - or what you can handle.

We all have some days that are better than others, sometimes just getting up and dressed is BIG. There is a piece in the top threads for a little story called 'The Spoon Theory' read it over and print out a copy or 3, share it w/ family and friends. Give them an idea of what your energy level is. I don't know the ages of your family, but maybe you could delegate some of the work load to them. They need to learn a little compassion, as long as you do everything, it will be expected that you continue in that position.

Come on here when you can, esp if you're feeling low. Hopefully, we can all help each other thru the tough times. Try to get some rest tonight and I hope tomorrow is a good day for you.

God bless.  Alice.

New Member

Date Joined Mar 2009
Total Posts : 5
   Posted 3/17/2009 8:22 PM (GMT -7)   
Hello Jules,
I am also sorry that you are hurting this bad..I have been recently diagnosed too and I went through the same thoughts as you. Its just like Alice said, you just have to take each day 1 day at a time. I want you to know that I will pray for you especially tonight This is a great place to come when you are feeling bad or sad, or you feel like no one cares. I just joined a few days ago, but have been reading all the postings and replies for a while now and am very impressed with what I have read. These people have alot of compassion and caring for one another..and we all need to be here for each other...That does help so much.... I pray you will feel better soon.

New Member

Date Joined Mar 2009
Total Posts : 6
   Posted 3/17/2009 11:36 PM (GMT -7)   


I am new. I was diagnosed last May but it took me two months to believe the doctor. I had a long illness with bronchitis after that my pain stayed. It was like taking a steroid and still having symptoms. I am already have an attitude but this just makes it worst sometimes. I fake it around others I just want to scream. I am on Effexsor and Neouritin. I take Flexoril now and then. I took I Loritabs for awhile but not since last year.

Remember liquor can make it worst but if you drink enough after awhile you will not care. I am joking nono   I understand how you feel and how others do not believe me. (even the ones you love) I exercise but it does not always feel good later. Just take your time.

 I have my good and bad days at the age of 34. Something has to give. I am think of uping my Neouritin to 1200 mg. I tested it a little and it helps. Good or bad idea?

Veteran Member

Date Joined May 2008
Total Posts : 1081
   Posted 3/18/2009 6:29 AM (GMT -7)   
I just wrote the most eloquent, compassionate reply to Jules. Vista ate it. I am going out to enjoy the sunshine and try later. Did I ever tell you how i feel about Vista? The words would have to be bleeped out anyway, so why bother. There are "days to be gotten through", and days to be celebrated. here it is above zero. that calls for a celebration. Jules; send your relatives the "open letter to normals", from Fibro 101. Tell them you have both good and bad days. Sometimes the bad days last a week or more. Find a doc who is compassionate, understands and listens, also about your financial issues. When I was living in USA, my doc knew I had no insurance so he always tried to find a cheaper alternative. Guess he didn't get the free golf club membership from the big drug companies. There are inexpensive drugs that work really well. Older drugs. Guarenteed side effects. Tried and true, and cheap.
Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.

Veteran Member

Date Joined Jan 2009
Total Posts : 1014
   Posted 3/18/2009 7:06 AM (GMT -7)   

Hi there Jules,

Seems like you've gotten some great advice so far and forgive me if I repeat what the others have said.

I know how you feel when it comes to the "forever" thing.  I've had fibro for at least 11 years and at most.. just about all of my life.  I've never really been able to pinpoint when this rotten syndrome started.  I was dx'd with CFS after my last bout of Lyme (11 yrs ago) but the doctor dx'd me with Fibro back in Jan.  after my last barrash (sp?) of tests.  Anyway, in my mind I've known that this is forever, but when you have a year or so when you're feeling pretty good it's easy to think, Hey, I'm ok, this isn't so bad, maybe it went away, maybe I was misdiagnosed, maybe maybe maybe.. and then Fibro rears its ugly head again and you have to go back to the realitization that this is forever.  This horrible syndrome really messes with your head with it's comings and goings.

Last night was horrible for me.  My family was celebrating St "Patti's" Day and I had overdone it.  I could barely move by dinner time.  My mom was so worried about me and I hate for her to see me when I'm hurting, because I know it hurts her to see it.  No mother wants to see their child hurt.. even if their child is 51 years old. Fortunately my family understands better than most.  If you're having a problem with your family expecting too much, I agree that you should read the "letter to normals"  and the "Spoon Theory" and decide if making your family aware of them.

I sure do hope you feel better, but remember, we're always here for you and hope you'll continue to keep in touch!

Hugs for now,

Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 3/18/2009 8:10 AM (GMT -7)   
Welcome Jules, Mammaw and Painntheneck. It is hard being told you have this DD and there is no cure for it. I went through a lot of emotions when I was dxd. I knew there was something wrong with me but figured when they got to the bottom of it I would take a few pills and be back to my old self, didn't happen that way. It takes time to get to the acceptance stage and figure out your game plan on how your going to live with it and control it as much as you can. I looked at my life as a whole and started weeding out the unnecessary energy zappers, got my priorities straight and simplified as much as I could. I was a perfectionist before fibro and I found so much of what I was spending time and energy on wasn't necessary anyway.
This is a great goup of people and you will learn a lot on how to make yourself more comfortable with the pain, we use many different methods. Heat is my best friend, I'm not on narcotics. We have a good time on here and we cover about all of lifes problems since fibro affects every aspect of our lives.
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

Forum Moderator

Date Joined Apr 2005
Total Posts : 17524
   Posted 3/18/2009 9:21 AM (GMT -7)   
Welcome, newbies!  I'm so glad you found us.  You have gotten good advice from the other people.  Don't project yourself in the future because no one knows what the future will hold.  Who knows?  They might find a cure in a year or two!  Doctors are taking note now and many realize this is a true illness and not in your head.  I went to my doctor this week and when I got the paperwork back for my files I noticed that "fibromyalgia" was listed along with all the other illnesses so my doctor definitely believes this is an illness so I get help from him.
You will have good times along with the more painful times too.  We are here to help you learn how to control your pain.  Your doctor can help with the meds and we can help with the "tricks of the trade"!  I exercise every day but it is gentle exercise.  I do stretches and I walk.  At first I could barely do that but I kept it up and have been able to increase the distance I walk not.  I am feeling better because I do this. 
You do need to pace yourself.  You can't do, in one day, what you used to be able to do without paying a price with pain.  Just chip away at the things that need to be done.  They will be there tomorrow so don't worry about all of it today.  Just get done what you are able to do.  Your body will let you know what you can and cannot do.  Plus, as you keep moving, you will find that you are able to do a little more than you could when  you first started trying.  At least that's what has happened to me.
So, stick with us.  We will help you live a full and enjoyable life with fibro.  It is possible because I have!  Be sure to read the Fibro 101 thread...the second thread on the forum, read back posts, and ask questions.  We are here to help you.  Hope to hear more from all of you soon!

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

Post Edited (Sherrine) : 3/19/2009 12:38:24 PM (GMT-6)

Veteran Member

Date Joined Jun 2008
Total Posts : 726
   Posted 3/18/2009 12:46 PM (GMT -7)   
Jules, Mammaw & Pain, Welcome, welcome!!!   It is so hard to get dx'd & find out is is a chronic illness.  You can't just take a pill as Marlee said.  We wait & wait for the dx, go to Doctor after Doctor, Specialist after Specialist & what do we get?  A lifelong illness & tons of bills.   shocked   The bills?  All I can say is whittle away at them & do not let them overwhelm or stress you out because that is a flare in the making.  The illness?  Well, you will go through mourning & if you come here & talk & learn & cry & vent & console, help & care for others, you will get through it healthily.  You don't want to get stuck in the anger phase or sadness phase.  Like Sherrine said,who knows we may have a cure soon or a pill to help us.  So, live for today, pace yourselves & find things that help you.  Vitamins, minerals, etc can help alot.  I lead a very simple life, I gave up a lot of things I used to "have" to do.  I have kept those things I truely love.  I hope you all find you way through this illness.  It isn't a death sentence it is a life sentence, in that you still have a life to live & it can be a good one, just different.  Hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety  Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

Veteran Member

Date Joined Jun 2006
Total Posts : 1156
   Posted 3/18/2009 5:48 PM (GMT -7)   
Welcome our two new members.

It is hard to live with fibromyalgia; at least for me it is.

I too live a pretty simple life. I swim daily, unless ill, work from home, care for an ill teenager (she really is not that much work now), eat, read sleep and write.

I have always avoided conflict so I am very careful of who I let into my life. However, I do no how to negotiate if problems arise.

I have been divorced for about 12 years and reared three great children. Two are self supporting and live away from home. I miss them a lot but it is far less strenuous that when I had to cart everyone to their extra curricular activities.

I use a wheelchair because walking is very painful. However, since I swim for two hours per day I get lots of exercise. I t took me about 6 months to get to the point where I could take water exercise classes for two hours per day. Once I added swimming, I just spent the same amount of time moving in the water.

In a way, fibro has forced me to spend more time doing what I make a pretty good living at. By taking care of myself, and working at reducing pain and stiffness, I get a couple of hours here and there to write.

The entire family will have to adjust to fibro. You cannot do this alone. It will take a while but if you communicate your bodily changes and let them know that this is how it is, it should help.

My children were young when the fibro took over so they just grew up with my pain. HOwever, our home was a mess because I was too tired to make them clean it. I used to feel guilty about this but I am letting that go.

I am chatting too much.

Welcome and take care,


Regular Member

Date Joined Jan 2009
Total Posts : 43
   Posted 3/18/2009 6:47 PM (GMT -7)   
Thank you to everyone. It is nice to know I am not alone, and it makes me feel good to know there are days when I won't feel this bad, I just need to get through the hard ones.

It is so much to think about, one day at a time is about all I should do, that way I won't get overwhelmed and stay depressed. (Which I have a problem with anyway.)

Thanks again to all of you.


New Member

Date Joined Mar 2009
Total Posts : 6
   Posted 3/19/2009 11:35 AM (GMT -7)   
Thanks for all the information. I will probably get my meds adjusted. I need help with this.
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