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Old 03-14-2009, 12:32 AM   #1
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Can Fibro get worse in years to come?

Can Fibro get any worse? Last year I was miserable it just seems this year last past months I have gotten worse. I feel worse then I did last year. And I felt pretty bad last year. I just don't want to wake up one day and not be able to get out of bed.

 
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Old 03-14-2009, 08:40 AM   #2
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Re: Can Fibro get worse in years to come?

Studies show that most people stay the same or improve slightly after diagnosis, though if you have other serious illnesses or injuries, it can get worse.

My symptoms started suddenly, got a little better, then after a couple years got worse than ever and stayed that way for a couple years, then with some more treatment experiments, got better again. Until a recent flare, I was doing very well, and I think the flare is subsiding again.

It varies.

 
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Old 03-14-2009, 09:39 AM   #3
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Re: Can Fibro get worse in years to come?

i am better now than i was in the beginning. it took alot of life changes and time. i was in a wheelchair. while other health issues have come to live with me, fibro has chosen to lighten up. i still have pain, fog, all of it. does it get better? or do we simply learn how to live it? i think both.
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Old 03-14-2009, 08:25 PM   #4
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Re: Can Fibro get worse in years to come?

Quote:
Originally Posted by SnowBunny89 View Post
Can Fibro get any worse? Last year I was miserable it just seems this year last past months I have gotten worse. I feel worse then I did last year. And I felt pretty bad last year. I just don't want to wake up one day and not be able to get out of bed.
I was just diagnosed with Fibro although I think I've had it about 15 years. I thought it was just pain from injuries I have had to my legs and back which is where it seems like it began. I was in my early 40's so it was about it I paid for all those falls and stupid things. Getting out of a chair became harder. I felt sick a lot. Physically sick and in pain but I had no choice but to keep on plugging along. In 2000 I sought treatment for what I guessed was Fibro or Lupus or something along those lines but the doctor didn't believe in Fibro since there is no test for it and she said I didn't have Lupus. I was treated for depression, anxiety and panic attacks. The pain went on.

In the last 8 years or so it has gotten so bad that I have lost most of the quality to my life. I can no longer do the things I enjoy. I can't go shopping or walking the mall, I can't go out and work with my camera 'cause I have to walk to get my shots. I can barely walk from the front door to the car! I'm always in severe pain and I just couldn't stand it anymore. I went to see an Internist. I have NO insurance so I had to "wing" it. She sent me for tons of blood work and advised me to apply for charity care at the local hospital. I got it and got my blood work done. Nothing was wrong. If I hadn't felt so horrible...that would have been great news. There are two markers that prove I had problems though...my SED rate and my CRP and both were/are high. They put me on Prednisone first and I did begin to feel better. I applied for a job and was hired but then came my step down in my Pred and by the time the job began...I was barely able to handle it. I lasted 3 weeks. I was told to see a Rheumatologist. She told me I can't work. She said maybe with treatment I might be able to hold a part time job but maybe not. Time will tell. In November I got a lawyer and they filed my disability claim on December 22nd.

I don't think I've had flares in years. I don't remember feeling ok or good. I have the pain and the fog and all the goodies every single day and have for years. It's funny. People talk about flares and it's almost like when someone says they got their period. I haven't had one of those in a number of years either and I have to think back to remember what it was like.

My Rheumy has me on Lyrica and Cymbalta and Ativan and Hydrocodone and my Internist put me on Prednisone for a second time. As you know you don't get inflammation with Fibro so I have something else at work. At this point they're calling it Non specific Inflammatory Polyarthritis. If Pred doesn't do the trick I might have to go on Embrel if I can get it on a program.

So, do I think Fibro gets worse? Absolutely I do. Maybe if it's treated soon enough it doesn't. Mine wasn't and this is what I have now. In the last year since I have been seeing doctors and getting treatment I do feel somewhat better but no enough. I'm still very limited and still in a lot of pain. So that's my story.
Take care,
Sharon

 
Old 03-14-2009, 09:01 PM   #5
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Re: Can Fibro get worse in years to come?

Yes, in my opinion fibro can get worse. Mine has, but there are the good days and the bad days. The object is to never give in and fight it all the way.

Glojer

 
Old 03-15-2009, 12:04 AM   #6
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Re: Can Fibro get worse in years to come?

I too think fibro can get worse. Mine has over the years. Flare-ups used to last only 3 -4 days, occurring between "remission" times of 3 -4 years.... right now it's 3 - 4 days between flares, if I'm lucky. Though there are sometimes a month or two without all the pain - that too comes less often. Still these times are getting more rare. So... Can Fibro get worse in years to come? Yes, definitely.
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Old 03-16-2009, 07:49 AM   #7
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Re: Can Fibro get worse in years to come?

I first complained about the pain I was suffering back in 1966; that was 43 years ago. But as a child I suffered what was referred to back then as 'growing pains' in my legs.

I found that the pain did increase as the years passed. I also notice that there are flare-ups whenever I'm going through some emotional trauma or something (which life does tend to throw at us). Also, added to the Fibo was the CFS which hit me with a vengeance about ten years ago.

So my answer to your question would be . . . in my case, yes Fibro does get worse with time.
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Old 03-16-2009, 07:50 AM   #8
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Re: Can Fibro get worse in years to come?

Quote:
Originally Posted by Snowbird View Post
I first complained about the pain I was suffering back in 1966; that was 43 years ago. But as a child I suffered what was referred to back then as 'growing pains' in my legs.

I found that the pain did increase as the years passed. I also notice that there are flare-ups whenever I'm going through some emotional trauma or something (which life does tend to throw at us). Also, added to the Fibo was the CFS which hit me with a vengeance about ten years ago.

So my answer to your question would be . . . in my case, yes Fibro does get worse with time.
Yes stress can really mess you up and Anxiety when Ever I have to go to the doctors i have such anxiety and pain. ugh.

 
Old 03-16-2009, 07:58 AM   #9
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Re: Can Fibro get worse in years to come?

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I too think fibro can get worse. Mine has over the years. Flare-ups used to last only 3 -4 days, occurring between "remission" times of 3 -4 years.... right now it's 3 - 4 days between flares, if I'm lucky. Though there are sometimes a month or two without all the pain - that too comes less often. Still these times are getting more rare. So... Can Fibro get worse in years to come? Yes, definitely.
I would love a month or two without pain....a week would be wonderful!!! A day even!!!! How long have you had Fibro? I don't get flares anymore. I did many years ago. It's just all the time now. No "remissions" at all. It's totally exhausting. I don't sleep well at night 'cause I'm in pain and all day I'm usually a zombie 'cause I'm tired. Oh yeah, and I'm in pain then too. I just do the best I can.
Take care,
Sharon

 
Old 03-17-2009, 12:21 AM   #10
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Re: Can Fibro get worse in years to come?

Hi I think it does get worse, my flares seemed to be rolling into one another and wiping me out more and more. I have trouble with my weight. The steroid tapers do not help. I love when they ask are you depressed? Who me? Why cause I do not know if I'll even be able to make it to the mailbox tomorrow? I was doing well enough a few years ago to be managing a gym. I am a professional patient now. All i do is go to doctors, physical therapy , pain clinic.... Then answering the phone calls from the loved ones who have no idea what fibro is grrrrr. The wonderful "Oh, are you sick AGAIN!"

Sorry didn't realize I was this angry heh I am also playing that game with my rheummy: lupus/fibro more blood another battery of tests .

 
Old 03-17-2009, 07:14 AM   #11
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Re: Can Fibro get worse in years to come?

Quote:
I would love a month or two without pain....a week would be wonderful!!! A day even!!!! How long have you had Fibro? I don't get flares anymore. I did many years ago. It's just all the time now. No "remissions" at all. It's totally exhausting. I don't sleep well at night 'cause I'm in pain and all day I'm usually a zombie 'cause I'm tired. Oh yeah, and I'm in pain then too. I just do the best I can.
Take care,
Sharon
Hi, All, especially Sharon and MizSpentYouth2! Let me just put my disclaimer right here up front... I have a terrible case of brain fog today, so if I'm incoherent or offend anyone, I apologize right now. Okay?

Fibrobugsme/Sharon: Gosh, Sharon honey. I really grieve for all your pain and how terribly it has affected your life. I also have trouble with my weight (hypoT), though I am SLOWLY losing it (I only seriously got started last Oct, so I’ve got a looooong WAY to go yet! ) Do the docs really ask you if you’re depressed? Geez, I must just look it or something, ‘cause they just slap one of those tests down in front of me and say “Here, fill this out and let me know when you’re done”. Then, even though it’s a self-test and I am honest about my answers and I add it up myself, the test says I’m NOT depressed, but the docs always tell me I am and want to put me on an AD… What gives with that?

Anyway, Sharon, I have to admit yours in only the second story of unrelenting "pure fibro" symptoms that I’ve heard. My memory is not the best, but, to answer your question, I’ve been officially diagnosed around 12 years, maybe a little longer. And had to do the “doctor dance” for 4 – 6 years before that. Mine does come in waves… did I mention that? Well, those waves used to last a lot less time than they do now. And the breaks between would last months to years. Now, it just ain’t so!! The breaks are a mere few hours or maybe a day or even two… depending on if I’m really lucky and the weather’s nice (and stays that way) and I mimic an ostrich with my head in the sand and keep all problems at bay (ignore them) for a day and don’t overdo and I’ve managed to get the absolute necessities done, etc…. you get the picture… if all stressors are gone or “managed” for several days, THEN I’m likely to have a good day - two if I'm very, very lucky. And the weather really has to cooperate and there be no family crisis (sp?), etc. So, as I said, as I get older these “golden” times become fewer. I wish I had more of them too! I’d certainly like to send one to you right now, but I don’t have one in stock. When/if I do, I’ll certainly send it to ya, honey!

I do not sleep well either. It’s after 5 am while I'm writing this, even after taking an Ambien CR, a pain med, and a muscle relaxer, I’m still up. And I hurt still as well. (I drove about 420 miles today and that way over does it for this girl!) This whole symptomatic/disease process is exhausting and frustrating and it always makes me feel like an idiot. I know how maddening it is and I’m proud of you for keepin’ on keepin’ on. It takes work, determination, and dedication to try to keep living “a real life” with this disease and you do it, by golly!! Go, girl!


MizSpentyouth2: Hi, MizSpentYouth2 (love the name, but wouldn’t THINK of asking where it came from… well… yes I would, but I WOULDN’T be rude enough to ask… yet? )

Hang in there, sweetie! I know my fibro - or maybe it’s the Hashimoto’s… I’m still in that part of the “guessing game” – has gotten worse over the years. I have more bad days than good and the bad days are worse than they were in past years. Like I told Sharon… I must just have a sign on my forehead that says “DEPRESSED” or something… I don’t even get asked, it is just assumed. So then I get to explain to yet another doc that I don’t want to try AD drugs right now, thanks anyway. They (the drugs) change me/my personality too much for it to be an easy decision to take them. So, in general, I try to stay away from ADs... and, uhhhh, exactly what ARE “steroid tapers” anyway? What are they for? I thought steroids made you gain weight, not lose it?

Quote:
The wonderful "Oh, are you sick AGAIN!"
Man, can I relate to THAT one. Though I have seven wonderful siblings, I think they’ve now, mostly, given up on calling me - 'cept for my faithful li'l sis. And I think they don't call for this very reason – I got to a point where I decided that I'm not going to try to hide the havoc fibro was wrecking on my life and let them in on the secret. I can’t tell you how many times I’ve heard this quote you said above either said, or paraphrased, over the last decade. It didn’t matter so much when I lived too far away from them to even try to go to family stuff, but now… well… that involves a WHOLE bunch of pain – heart-hurt pain – all by itself, doesn’t it? I hurt for you, my dear. I think the effect on family relationships is what rounds out the top 3 things I absolutely HATE about this condition.

However, unlike you and Sharon, I’m not yet playing the “lupus vs fibro game”… but, then again, I’m not going to a rheumy right now either. I figure first things first works for me, and I KNOW I’m having hypoT issues. My NP agreed to let me give Armour Thyroid a try, so we’ll see if that works better for me than what I was taking. As I mentioned, I go for a follow-up to see the results of the old blood work next week and to get it redone (after 2 weeks on A), then. I’m also supposed to get my adrenal function tested, so I feel like we’re FINALLY progressing on trying to get my life back. I too cannot work right now… but feel I should and I'm not on any kind of disability. I spend a great deal of time in my house because, frankly, what little energy I have must be spent taking care of my hubby and my responsibilities – cleaning, taking care of our 3 dogs, shopping, and etc… the lovely joys of being a housewife!! LOL I think I worked less hard when I was working an “outside” job! KWIM?

Well... that probably was way more than you wanted to hear. Sorry for babbling. Here’s wishing all a great, pain-free (or at least minimum pain) day!!
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Old 03-18-2009, 12:53 AM   #12
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Re: Can Fibro get worse in years to come?

Hi there ngtstrm,

The steroids were given to me for the swelling during the last flare, and yes they sure do make me gain weight! The name comes from just that a miss spent youth heh I was the girl your Mama warned you about . Wild and crazy.Now wild and crazy is a totally different thing, shopping and going to the bank in the same day whoo hoo party. This fm took allot of things but I am grateful to still have my sense of humor. Hope you defog soon and get some sleep and have a pain free day or 2 or 3

Miz

 
Old 03-18-2009, 01:30 PM   #13
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Re: Can Fibro get worse in years to come?

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Hi there ngtstrm,

The steroids were given to me for the swelling during the last flare, and yes they sure do make me gain weight! The name comes from just that a miss spent youth heh I was the girl your Mama warned you about . Wild and crazy.Now wild and crazy is a totally different thing, shopping and going to the bank in the same day whoo hoo party. This fm took allot of things but I am grateful to still have my sense of humor. Hope you defog soon and get some sleep and have a pain free day or 2 or 3

Miz
Hi, MizSpent. You crack me up! Being one of the really boring (mostly) "good girls" myself, it makes me wonder just how you mis-spent your youth! Ummm... can't wait to hear it! (PM me the "juicy" stuff.. 'kay? ) And I love your sense of humor!

A few weeks ago the doc gave me hefty steroids - 40mg/day... big dose for me! - to bring down inflamation in my wrist from the fall. I admit it... I'm trying SO hard to lose weight that, after gaining 7 pounds in two days, I tapered off and quit taking it. (He told me it was only to help "jump start" the healing when he gave me the five days worth and that I could quit as I saw fit, as an "intelligent woman"... ha! Who has an "intelligent" reaction when that stupid scale starts climbing?! LOL)

Thanks for the good wishes!! I'm having a better day today because - thankfully! - I did finally manage to get some sleep last night! YEAH! I feel like a new woman today, so I'm going to spend it wandering around St. Pete, FL, before we leave (on Fri)... or I get worse again... Gotta take advantage of the ability to "party" (still chuckling over that one!) while I can. 'Course... "wandering around" used to mean spending hours and hours going here and there... now I'm just trying to go "here"... "there" will have to wait until tomorrow... kwim? And, alas, the "hours and hours" have now become...oh... maybe 30 minutes (yet something else stolen by the fibro... my stamina.) Still, ya do what ya can! Here's hoping you have a great day, sweetie!
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