Does FMS just continue to get worse?

Discussion in 'Fibromyalgia Main Forum' started by Lendy5, Jan 14, 2007.

  1. Lendy5

    Lendy5 New Member

    Since learning about FMS and being diagnosed I have always heard it will not get progressively worse but I am having serious doubts about this.

    Is it because I am getting older and I think the pain is getting worse or is it really? I hurt pretty much in the same areas every day and some days are worse than others but here lately I am having more bad days than good ones.

    I am scared when it comes to thinking about my future. I am married and we have three kids two boys ages 9 and 13 and one girl age 5. I miss being able to play with them and they don't deserve to have a mother complaining of hurting all the time. I miss me!

    I don't want to feel like this for the rest of my life!

    I would really like to hear others thoughts on Fibro and if it has gotten worse for any of you.

    Thanks for listening (((((Hugs)))))
  2. jakeg

    jakeg New Member

    The docs say no but let me tell you I think it does. I was dx in 2004 and it stated off pretty bad and has gotten progressively worse.

    I'm pretty much house bound now where as at first I was still able to get around all though not like I used to.

    I was very active before this dd struck me down and now activity really is a struggle. Getting out of bed and just daily things that you need to do to survive have become difficult doing.

    I'm thankful that I have a loving wife and 2 wonderful daughters who help make things easier for me by doing the things for me that I can no longer do.

    Hopefully you will not get this bad, some people stay at the same level as when the were dxed and others follow a line that seems to go more in the direction that I have.

    This is just my opinion though, and I hope that I have not scared you about your future because this disease affects everybody differently and what I have said is how it has affected me.

    Take Care

    JakeG
  3. California31

    California31 New Member

    Definitely...better in many areas....some, like chemical sensitivty can be awful....where as the pain definitely diminished....after pain specialist treatment in LA....energy got better....it's something of a roller coaster ride in my experience...the "FM fog" condition can be awful...This site has some good advice to sort through...and as we all know..what works for one does not work for another...I'm leaning toward getting more info on the "viral" front....that seems to hold alot of healing possibilities....Hugs to you too.
  4. cordy250

    cordy250 Member

    I'm afraid that my impression is that it, indeed, does ramp up the longer you have had it, and in addition, combines with other problems that you might develop, such as arthritis and menopause, or other hormone related problems.

    I find myself increasingly disabled by pain and fatigue and have no where to turn.

    Sorry if this isn't what you want to hear, but you asked for our experiences.
  5. Dee50

    Dee50 New Member

    In my case yes til I started the Guai Protocol.
  6. charlenef

    charlenef New Member

    MINE HAS IVE BEEN BED BOUND FOR 3 YRS I WISH THE DR WOULD GET UP ON SOME THING I DONT THINK EVERONE GETS WORSE BUT A LOT DO CHARLENE
  7. dwink

    dwink New Member

    I also believe FMS is progressive. I was diagnosed in 1988. I am 56 years old and I don't think I felt as bad as I do some days now, when I was first diagnosed. I have developed Osteoarthritis in my Cervical spine and have SI joint dysfunction on the right side. I fell down the steps in my home twice in the past five years, the last time was August of 2006. The first time I developed low back pain for which I had an MRI. It showed some mild arthritis and bulging discs in three vertebra. The second time was when I started having more neck pain and tingling on the right side of my neck and shoulder. I had an MRI of my C-spine which showed significant arthritis with osteophyte formation and some narrowing of the neural-foramen. I can tell the difference in the arthritis pain and the FMS pain, as well as the Sacroiliac joint problem which causes low back and hip pain. With a bad flare it seems that the low back, hip, neck and shoulder pain is made worse, almost like the FMS attacks those areas. Just a speculation on my part. I live in Alabama and the weather is so unpredictable especially in the fall and winter. It consistently turns cold, warms up, rains and turns cold again. This year has been crazy. We have had weeks where it would be very cold for several days and then feel like Spring for several days. The constant changing of the weather has caused me to be in a bad flare since Christmas. I have more headaches than I used to. I still work full time at a job where I sit at a desk all day and work at a computer. I try to take frequent mini breaks to stretch and move around, but some days I am so busy I sit to long and I pay for it. My concentration levels are awful some days. I have memory problems like never before. So, YES, I do believe FMS is progressive, whether it is from growing older or whatever, mine seems to be much worse than when I was first diagnosed.
  8. dani78xo

    dani78xo New Member

    I'd like to think that the majority of us get better after starting treatment, but I haven't met many people who have had that happen.

    I know that when I was diagnosed last year (I'd just turned 16), I was okay with the diagnosis at first--I was RELIEVED, because I finally had one. I didn't know how bad the pain was, though, because from the time I was diagnosed, I was put on Cymbalta, which took away nearly all of my pain.

    When I got off the Cymbalta, the pain was astounding. I was horrified that that was how I was going to have to live.


    Now, a full year afterwards, I still have a major hate/neutral relationship with my FM. Some days, I can't imagine being able to get ANYWHERE with this illness. Those days, I just break down completely. There are some days--my better days--when I feel like maybe, in several years, I might figure out how to live successfully with these illnesses, but I never get an answer.

    I can't tell you how many times I saw one of my few friends figuring out her life, or just having fun, and felt absolutely helpless because I can't choose mine just as easily.

    As I said, I've only been fully diagnosed with both FM and CFS for a year now, and the winter probably has sent me into a flare, but I haven't found any solutions to this. Nothing's worked for me, and it hasn't gotten any better.

    The absolute WORST part of it HAS to be the tempermental side of FM. The WORST let down is being so excited about walking three miles and not feeling like I'm going to collapse, and then a week later not even be able to get out of the house.

    I don't know if FM ever gets any better--i guess it's different with different people--but the only thing that keeps me going is thinking about how much closer they're getting to finding a cure--or at least a more effective treatment.
  9. onnaroll

    onnaroll New Member

    for me, It started with sickness I had cutting unthinkable arm pain, lost the funtion of my arms for a while. I had swollen lymph nodes under my arms felt like i had cancer or something had a low low grade fever! My body really just went hay wire. WHEN IT HIT MY BACK I WAS SHAKING WITH SO MUCH PAIN!

    I think something else started my fibro probably another one of the strange virusis that I GOT before all of this for me! kept getting illnesses that i never had before, one was i had to caugh just to speak another was my neck was so stiff i couldnt move it not at alllll, was in tears with a fever with that one. and the first one was headaches that had me in tears with a low grade fever.

    I was bed ridden for the first2yrs , and ive slowly gotten better with meds and exercise, but really i dont know what the future holds.

    godbless roll
    [This Message was Edited on 01/16/2007]
  10. Greenbean7

    Greenbean7 New Member

    When I was first diagnosed my doctor told me it was not progressive, as in it would not kill me as a progressive cancer would.

    However, he was also careful to make sure that I knew that it is progressive but that being progressive is different in every patient.

    He explained that the problem isn't just that it can be progressive, but the way it may progress.

    Progression with this DX can be getting better or getting worse or getting better and than worse or worse and then better, etc.

    He described this as another reason prescribing and treating and having FM is so frustrating.

    Hugzz
    Greenbean

  11. kellyann

    kellyann New Member

    YES.....
    I think it gets worse every single day that goes by. I think I hurt worse every day if that is possible. I hate living like this, I miss my old self so much. I have a 17 year old daughter that plain runs over me because she can get away with it. My other kids would have never have dared to do any of the things she does to me. She has no respect at all for me, I am too weak and sick to do anything to her, so why should she worry?I think I get worse all the time.
    Kellyann
  12. Butterfly_of_grace

    Butterfly_of_grace New Member

    it certainly feels as if the older I get the worse off I am...so IN MY OPINION, YES IT GETS WORSE...unfortunately
    ((((HUGS)))) back at ya
  13. PVLady

    PVLady New Member

    I am sorry you are suffering. I admire you for realizing your children are hurt if you verbalize about your pains.

    I wish my own mother had your insight. When growing up, my mother also had fibro and degenerative disc disease. She talked so much about her aches and pains, it eventually felt like the entire family was smothered.

    Growing up, I could never have a conversation with her about me, or anything else that did not wind up about her pain.

    We all knew she had pain, but no one was able to make it go away, so what could we do except listen. There is a enormous psychological effect on children who grow up listening to a parent constantly verbalize aches and pains.

    As a adult myself, because of my mother, I never say if I am not feeling well. I am just quiet. I refuse to do to anyone what was done to me. Sounds ridiculous...

    Anyway, I do admire you for loving your kids enough to not do the same to them.

    I wish you the best....

    (A doctor recently told me, this DD does not kill us, it tortures us).




    [This Message was Edited on 01/16/2007]
  14. street129

    street129 New Member

    CHANGE YOUR EATING HABITS.....CUT OUT ANIMMAL FOODS......AND MILK....EATS ALOT OF SALMON..AND ALOT OF VEGETABLES.....AND FRUITS....DRINKS LOTS OF WATERS AND BUT FISH OIL...AND FLAX SEED OIL....IT HELP MY PAIN SOME WHAT......I HUST STARTED 2 WEEKS AGO...
  15. Mini4Me

    Mini4Me New Member

    After reading all of the above, it looks like it is different for different people.

    I am definitely better now than I was back in July, Aug., Sept. Perhaps it's the meds I'm on and the stretching I'm doing. Not sure. Mostly it's my mental state that has improved. I'm still in a lot of chronic pain, but the meds take the edge off of it.
    Best of luck...
    Mini
  16. Hmmm I would have to say yes it does get worse. When I was diagnosed over 30 yrs ago originally I would have some bad days but alot of good days and never thought much of it. THEN about 12 yrs ago it hit really bad and I rarely see a good day and its one problem after another. Like my rheumatlogist said once fibro won't kill you but there are days you wished it would.
  17. dawn44005

    dawn44005 New Member

    i am a suffer of mns also and over the past 12months i hav e got worse at this stage i cant even tell u were i hurt as every part my body dose and it talking me long tim to get this typed and rember how to spell my words had my bone scan today have a mri scan in march its hard not be able to the things u used to do
    [This Message was Edited on 01/17/2007]
  18. Lendy5

    Lendy5 New Member

    Hi everyone and thanks so much for all of your replies and warm thoughts. It means alot to me.

    I think it gets worse too or at least for me it definitely feels this way. I have never hurt this bad in all my life and I am having extreme difficulty in processing my thoughts which makes it worse.

    Between me hurting and never being able to get a full nights sleep I feel like I'm losing my mind. My feet and legs were hurting so bad last night and my pain med (oxycodone)wouldn't ease the pain so I fell asleep hurting.

    We have had some beautiful weather these past few days in the upper 70's but tonight we are suppose to get sleet with a chance of snow.

    I have been reading alot these past few weeks here on the boards about supplements and I think I could benefit from taking but don't know where or what to start with first. If anyone has any ideas please share and thanks again.

    Love,
    Carolin
  19. roseylisa

    roseylisa New Member

    I definetely am having worse problems the last few months than four years ago! I am having to take stronger pain meds.I did go thru a short spell a year ago that I felt better but only lasted about two months I thought it was going away, I wish!
    [This Message was Edited on 01/18/2007]
  20. dwink

    dwink New Member

    In February of this year, 2007, I started to Pool Therapy with a Physical Therapist. Also, as I have said before in other e-mail, I see a Chiropractor. Mine is very good and has a very good reputation. He and the PT got together and came up with combined therapy for me that included stretching and toning exercises in the 88 drgree warm pool twice a week and seeing the Chiropractor for help with mobility twice a week. The main thing here is exercise, it is very important for us with FMS to get exercise to keep our bodies strong and mobile. Believe me, it took me a lot of years to convince myself to give it a try. I didn't believe I could do exercise of any kind. But I found out, I can. I still have bad FMS flares, but the therapy I have received from the Chiropractor and pool therapy have helped me handle them a little easier. I've got to look for an alternative way of getting my exercise since my health insurance only grants 20 vistis a year for physical theapy. But, I will find a way. Some of the exercises can be done at home. I will be doing those. It is my opinion that FMS does get worse, but, we can find ways to live with the pain and not give in to it and let it control us. I've had this dd for 20 years, but, I haven't and I will not let IT get me. I will not give in and lay down and let it take over my life. ...thanks, I feel better. Take care...

    dwink


    "If God brings you to it, He will bring you through it."