How progressive is your FM

Discussion in 'Fibromyalgia Main Forum' started by place, Apr 23, 2006.

  1. place

    place New Member

    Once you were diagnosed and started getting treatment, has your pain gotten worse? Did your pain spread to other body parts or areas?
  2. jakeg

    jakeg New Member

    Yes mine has progressed from the shoulders and arms which are at a constant pain level of 9 and 10 to the rest of my body at the same levels.

    Now that spring and summer are arriving the fatigue is really starting to kick in again, which wasn't all that bad during the winter months.

    I've been up since 6:30 this morning and am ready to go back to bed for the rest of the day, and I haven't done anything physical at all today.

    If it weren't for the fatigue setting in again I could deal with this DD alot better. When I get hit with both in combination likes happening again it makes it 4 times as hard to deal with.

    Just doing anything that involves minor activities puts me into a state of exhaustion.

    Jake
  3. UnicornK

    UnicornK New Member

    The pain has definately gotten worse, and it has spread down my right leg. Every morning I wake up and ask...Ok, who's gonna hurt today? LOL
  4. tandy

    tandy New Member



    My fibro has progressed ALOT!

    Sometimes I still feel like they're missing something more serious.
    Mine started all in my upper half.
    My shoulders,neck,arms and sometimes my low back would ache.
    Nowdays literally every body part is effected to some degree. My legs ache alot,..my hips hurt,my one knee hurts,my ankles bother me some days. etc.

    My lower half never use to bother me at all in the beginning. My brain fog has progressed too.
    Oh,... and Fatigue or always being tired,...
    thats way worse too.
    I remember yrs ago reading that FM does'nt progress.
    Well,.... It does.
    alot!
    hope this helps
    Hugs
    Tandy
  5. place

    place New Member

    I am terrified now! I started having sinus problems 8 years ago but have gotten some resolution with them and only have pain once a week. ( clean out sinus daily and food modifications). now my calf's, forarms and elbows are painful only when I over do it.

    Has anyone ever gotten better? What do they attribute to their success?

    My doc says to exercise, but any type of walking or biking causes my legs to cramp up and eventually more pain. Do you all do any exercise?

  6. jakeg

    jakeg New Member

    I do walk daily weather, pain and fatigue permitting.
    It's not a very long walk ether, only about 2 hundred feet any distances farther then that and I have a hard time making it back home.

    Also don't be terrified this may not happen to you. Not every one has it as bad as I do and I'm sure there are others that have it worse then me.

    Take Care

    Jake
    [This Message was Edited on 04/23/2006]
  7. tinypillar

    tinypillar New Member

    I didn't take any Rx for FM after I was Dx (about 2 yrs ago). I had recently quit my job and was on disability. I tried to do some walking and just taking it easy. I didn't have extreme pain, it was more of a constant low grade ache and way more fatigue (than what I have now).

    I got better to the point of where I got a new job (full time) and did okay, until I had some dysfunctional uterine bleeding (for a few months), and possibly an ovarian cyst that burst (that is the dr.'s theory, they didn't find anything on the sonogram). After that I had a pretty bad flare that lasted a few months and I went on leave from my job.

    Since the flair I've been on meds daily, and I am much better now, more so than when I started working again. My fatigue level is much, much lower, however I think my pain is going up, and I might ask for something for pain on my next dr. visit. I don't need an all day pain reliever, as my pain seems to be okay in the morning, but by afternoon/evening it gets worse.

    I'm really happy with the dr. I have, he's prepared me mentally for the fact that even though I'm doing really good right now, I might rollercoaster again, and not to get too discouraged.
  8. Bambi

    Bambi New Member

    years and then took off all at once and got like it is now, bad. My daughter only took about two years from admitting she had it to being severe. It's different with all of us I guess. I often wonder if I have just FM, because I read about all the things others are able to do; work, go on long shopping trips or on vacations..things that are just NOT things I could do on my best day without paying for it.

    If I HAD to go back to the total pain I had before this doctor I probably wouldn't still be here. At least now I can live a somewhat normal life and can do some things without a problem.
    Others I can do with effort. But many I just cannot any longer do.
  9. cajunv2001

    cajunv2001 New Member

    i too had problems that started out small,my hands would hurt,like they were broken,my shoulders hurt a lot, i could no longer lift them over my head,lots of aches and pains,trouble getting up,if i was sitting on the floor,trouble sleeping, just a lot of pains and aches.
    i was only 35.
    i used to waitress,walk 4 miles a day,arobics,you name it,then wham,2000 was the year my life as i knew it ended.
    i became a fibro fog old lady,
    health problems all over,developed a meningionoma brain tumor,(removed it in 2003,non cancerous,but could not remove it all)I developed bad sleep apnea, had surgery in 2005, (had 2 tumors in left nostril,) had my tonsils removed,palate raised,and now am off the bi-pap machine.
    but now i have degenerated disc diease in my back, L5 is all dried up, and L4 is on it's way too.
    so does fibro take it;s toll on the body,yes i believe so,it throws us into a early stage of old age i believe.
    Rhumatisum like Granny used to say is hell, living with it with a family to take care of and chores to do is a diease i don't wish for anyone.
    all of us here share the same cross,and we bear it with as much grace as the Lord will allow.
  10. Fibrolady37

    Fibrolady37 New Member

    it does get worse thats very true in my case.
    I was dx with ME,CFS,FMS,RESTLESS LEG SYNDROME,MYOFACIAL PAIN SYNDROME ETC.ETC.
    Theres not enough room on the screen to list my 40 illnesses.
    I was dx in september96 i was wheelchair bound for 2 years & every single part of my body hurt like hell.
    As we get older those of us with rheumatism no our rheumatism gets worse as we get older.
    This year has been my worst ever pain year.
    My pain is every where in my whole body hopes this helps.
    May god bless you & yours.

    fibrolady37.
  11. Fibrolady37

    Fibrolady37 New Member

    it does get worse thats very true in my case.
    I was dx with ME,CFS,FMS,RESTLESS LEG SYNDROME,MYOFACIAL PAIN SYNDROME ETC.ETC.
    Theres not enough room on the screen to list my 40 illnesses.
    I was dx in september96 i was wheelchair bound for 2 years & every single part of my body hurt like hell.
    As we get older those of us with rheumatism no our rheumatism gets worse as we get older.
    This year has been my worst ever pain year.
    My pain is every where in my whole body hopes this helps.
    May god bless you & yours.

    fibrolady37.
  12. tandy

    tandy New Member


    Wow! after reading back my reply and many others,
    I just wanted to say that,....
    Not everyone gets really bad~
    I guess our replys sound kinda scarey.?? (they do to me)

    I am sorry that many report bad news~
    But thats our cases. It does'nt mean that you'll follow suit. :)
    I hope you don't~

    Sometimes I think it progresses when we abuse ourselves or overdo it.
    When we don't pace ourselves,or take it easy,eat right,etc.
    Most important is having a caring Dr. that tries everything to make you more comfortable and have less pain.
    I honestly think that without proper pain control you spiral downwards. Sleep is very important too.
    and MILD and I mean Extremely mild exersize.
    Even 5-10 minutes of stretching or swimming or walking helps everyone~ Sometimes just taking a walk around the block is enough for me. (takes me about 8 min.)
    Does'nt seem like alot to most people but I figure its something and I am trying.
    I rambled a bit here ;)
    hope this helps~
    Tandy
  13. snooker11

    snooker11 New Member

    i've just gotten better as time has gone by. It has been around 2 years and i feel probably 80% better. It has been a slow improvement - but I am definitely getting better. I hope it just lasts!!!


  14. Esperanza25

    Esperanza25 New Member

    that I definitely got worse. My PCP recommended Pain Management classes which I attended, though it wasn't right away, I have been feeling a little better these last three weeks - it doesn't mean that I haven't had any pain but the pain is not as severe.

    The bad part was that for almost 9 months I didn't have my period and last week when I had my period after so many months of not having it, it was extremely painful and I was changing my heavy pad and super absorbency tampon once an hour. I went to see a doctor because the pain was so intense I thought I was going to pass out, he thought that maybe I had a cyst that erupted. After 5 days of pain and misery I started feeling better.

    I'm also seeing a specialist in TMJ and he prescribed a mouth guard and since I been wearing my neck, shoulders, arms and back have not hurt as much. Though my elbows and knees have hurt, is not as bad as before.

    So, overall I have been feeling so much better and I'm trying not to change what I'm doing so I can keep up the not so much pain phase of my life.

    I hope this helps... by the way, I do exercise at least 3 or 4 times a week because if I don't my body feels like is going to collapse. It took several months to workout more than 10 minutes a day.


    Take care and if you exercise 2 minutes a day to start and be consistent I think it may help a little.
  15. kriket

    kriket New Member



    and has since spread all over my body. My back hurts the worst, nearly non stop. Pain has without a doubt gotten worse.
  16. dragon06

    dragon06 New Member

    progressed from childhood I believe but got very bad over the last 2 years. Definitly was progressive in my mother (not biological) too who has had it for 22 years.
  17. tinypillar

    tinypillar New Member

    I had to learn how to manage my "spoons".

    Since I was in denial for quite a while, I tried to overdo everything. My Dr. said to exercise, so I'd try to walk a few miles. Worst idea I ever had, lol. I'd be in so much pain after and not be able to get out of bed the next day(s).

    The key to me being more active now is to know when to stop. I'm not saying I'm "well" or "cured" because I'm definately not, I still have pain, I still have fatigue, I still have bad days. I am able to maximize my good days now by not over-doing it. I know to prepare myself in advance if I have something demanding to do in the next few days, or the next day.

    Learn how and when to say no to yourself and others when you know you can't do something. I'm my biggest enemy in this area, I still want to do it all, and I have to keep telling myself that it's okay that I can't.

    Another thing to keep in mind is we all have different levels of ability with this disease. Having empathy and understanding of others is really important. Hearing that some of us got progressivly "worse" and some of us got "better" or like me "rollercoster", helps to keep perspective regarding preparing yourself physically and emotionally for how your life will be.

    When I accepted that I may never be like I used to be, it helped me figure out what my limitations are, and how to not take for granted my good days. This disease requires us to sometimes use what little energy we have just to do some research and educate ourselves about something that what seems a lot of doctors don't know much about, or how to treat.
  18. juliejo

    juliejo New Member

    Mine too has got steadily worse over time.
    Mine started with a virus 3 year's ago now but i have been ill for over 20 year's prior too this and like most of you alway's being told there is nothing wrong with you and get a life etc etc. Oh i could go on and on here.

    Before i caught the viral infection ( severe headache, nerve pain's which spread throughout the body, dizzyness, feeling sick and thought i was dying for 3 months) i used to wake up with stiffness in my hand's. elbow's, hips and knees and unrelenting neck and shoulder for months and was told it was my age and live with it!!.

    Now over 3 year's on i can honestly say that my pains and fatigue have spread everywhere and i mean everywhere.
    I do however go to hydrotherapy (aqua classes), once a week and i do find that keep's me more mobile.

    I suffer daily headaches and dizzyness which never goes away.
    My pain level too is 8 or 9 most day's.

    However i can say that since contracting the virus at last i now knew i was'nt mad, depressed or dying. I say dyin as i thought i was i felt so ill at the time and no-one would listen to me.

    With pacing and listening to my body now i do have a better life believe it or not as just having a diagnosis meant the world to me.

    I have just seen a new Rheumatologist who had told me it can go. I shall wait with baited breath on that one.

    Julie jo.

  19. puggymom

    puggymom New Member

    I was diagnosed in High School, but was never that bad that I couldn't function. IN January I lost my Dad to Inclusion Body myositis and I went into a 2 month flare where I didn't work. Before that the most work I missed at one time was 3 days. Now I am back at work, but the dr. has me limited to 40 hours. It is no so much the pain, but the exhaustion. I don't see me asking the dr. to release me from that 40 max anytime soon.
  20. place

    place New Member

    Thanks you all so much for taking the time and limited energy to answer my post. It gives me hope and a reality check to brace for in the future.

    When I first got the diagnosis I was greatly relived. I remember thinking “ great, knowing what the problem is, is half the battle” and my doc said that it does not get worse. But as I read on this site, that could not be further from the truth! Pacing my over-achieving behavior is what typically gets me in flair up. I am a teacher by trade and really do well when I am not working. I will be leaving my teaching post for a new desk job come summer.


    Snooker11, what do you attribute to your recovery?


    Thanks again everyone, I don’t know what I would do without this caring community! I would love to hear more of everyone else’s history!