Does this get worse?!

Discussion in 'Fibromyalgia Main Forum' started by SwatWife525, Oct 15, 2009.

  1. SwatWife525

    SwatWife525 New Member

    So I've noticed over the last year or so that my Fibro has taken a sharp turn downhill. In fact, I knew deep down inside what I had before a doctor diagnosed it.

    Does this get worse over time?
  2. jasminetee

    jasminetee Member

    FMS has been getting progressively worse for me every year. I'm now 95% bedridden from it and the combo of my CFS getting worse.

    I was wondering about your name. Is your husband part of the SWAT force?
  3. SwatWife525

    SwatWife525 New Member

    Yes :)

    He is a SWAT cop.

    I hate to hear that you are 95% bedridden :(
  4. jasminetee

    jasminetee Member

    That's cool he's a SWAT cop. My prayers that he stays safe.
    Thank you for your support.

    Jamin-- I didn't "plan" on being bedridden either. Consider yourself lucky. I also ate right and used all natural health products. You've said yourself that you don't even think you have FMS and you don't have CFS.

    I do have to say, Jamin that I used to be similar to you 10 years ago when I was doing a lot better. I thought if everyone would just do all the natural stuff and eat right and exercise they could fight this and basically win. Reality taught me differently but I don't expect you to believe it since it's not happening to you. Just try to be supportive on our Support Forum, okay?


    [This Message was Edited on 10/15/2009]
  5. wendysj

    wendysj New Member

    Hi Swat Wife!

    I've had ups and downs. I even went into remission the first 4 months of 2008 (approximately).

    I was diagnosed with CFS in 2004 and FM in late 2008. I can definitely say that I am in MUCH more pain now than I was then. The severe fatigue that hits me and the wide spread pain is much more intense.

    I think we all get used to it and learn to tolerate it... It gradually gets worse though. Those are my thoughts anyway.

    Your hubby has a dangerous job.... It's a cool job though! I dated an undercover cop for a while... Dangerous, but very cool. I will keep your hubby in my thoughts to stay safe.

  6. AllWXRider

    AllWXRider New Member

    We are both following Dr. Teitelbaum SHINE protocol and are both recovering.

    A friend of ours was Comatose, and the docs finally hit on the problem: LYME. She had FM. No one thought of Lyme.

    I found out that I have Lyme too. I may indeed have the XMRV too. The key to getting well is a good immune system. My wife is, of course, exposed to everything I have, but she is fine. She has a great immune system.

    If 70-80% of the immune system is in the gut, then I would concentrate on nutrition and probiotics.
  7. loto

    loto Member


  8. loto

    loto Member

    Mine gets worse. I've only been diagnosed with FM for a year and a half, and it seems there's always a new issue going on with me. For me it's not just pain, but lately more fatigue, brain fog, stomach issues (have acid reflux that I never had before i got FM), and it just seems to go on and on.
    But, the support I get here, and staying in contact with a doctor that pretty much agrees to tests I request (it seems we're both learning about this condition) -- I can't find a local doctor who knows a lot about FM and all it's related conditions, helps me keep going and striving to find the treatments that will work the best for me.

    So, all we can do is support each other and work with our health care providers to keep ourselves up!!!!

  9. karynwolfe

    karynwolfe New Member

    For what it's worth, my fibromyalgia has been in remission two years, even in the face of other problems getting worse =)

    I'm not claiming it to be a cure but finding a good magnesium supplement (one that makes you notice a difference when you've been on it for two weeks; otherwise switch to a different variety) is a necessity. Many people also take calcium (1:1 ratio) with magnesium, and then Vitamin D to help the calcium absorb. But magnesium is a must.
  10. Spacey

    Spacey Member

    FM is a neurological, arthritic condition, . It is hard to live with and for me it has definately gotten worse the older I get. Some people seem to have mild cases while others have more serious cases. It is hard to treat. I wish you luck. It's not just a disease of the joints, that's a small part of it. It affects your whole body and brain., It has multiple symptoms. Iv'e been to a nature path and did a protocol for a long time, with diet change. It did nothing for me. Hopefully one day they will know more about it. Thanks Spacey
  11. SwatWife525

    SwatWife525 New Member

    Thank you all so much.

    A very special thank you to those who will pray for my husband's safety. Its hard work being a "SwatWife" :)
  12. FibroFay

    FibroFay New Member

    God Bless your hubby for the work he's doing!

    My Fibro has been up and down over the years also. There were times when I couldn't even go to the grocery store because of my severe pain and total exhaustion. Nowadays I can go to the store and even push the cart up and down the aisles and bring the groceries home and put them away. I feel pretty strong.

    Having said that, I must also say my pain is more widespread than it used to be. I remember when I first was diagnosed, my pain was only in my shoulders and neck. Now it's bodywide. And it's definitely more severe. I've gone from Amitryptiline (sp) to Vicodin.

    I belive almost everything gets worse as we get older.

    And, Tee, you are right. NOBODY PLANS on becoming bedridden. And one cannot willpower their way out of an illness. Anyone who thinks they are tough enough to fight it off might indeed find themselves flat on their back one day. They just haven't been very sick yet. Good for you in speaking up for yourself and others.

    Best wishes,
  13. FibroFay

    FibroFay New Member

    Hi there. My magnesium supplement wasn't doing a thing for me. Can you tell me a really good one and how much of it to take? I stopped taking mine months ago.


  14. misskoji

    misskoji Member

    I hate to say it, but yes, it seems the majority of us do get worse. We are all very strong to live with these nasty illnesses to say the least. We do learn to cope (as best we can) more as time goes on. I hope you will find a wonderful doctor that will listen to you and work with your ideas.

    Jammin, I'm sorry but your remark about not planning on becoming bedridden was snyde and without compassion it seems. You are very lucky to not be severely affected like others are. Good for you with taking care of yourself. But you almost placed blame here for something out of Tee's own control. It is how she has been affected by her illness. She is ALWAYS nice and courtious to many others here even though she is deeply affected. This place is for us to support one another so please place compassion and empathy in your posts.

    I'm sure your hubbys job is stressful for both of you. Thank him for us for the work he does.


    [This Message was Edited on 10/15/2009]
  15. Janalynn

    Janalynn New Member

    Well, technically FM is not supposed to be progressive, but I feel like I've gotten worse as well. I suspect I've had this for over 25 years, but only diagnosed about 3 years ago when the pain told me something more than "this is just the way I am" is not normal.

    I have had many good years in between. Yep, the "normal" aching that I've always experienced etc., but not this debilitating kind that I have now.

    Jamin- I respect what you do/take to keep yourself healthy etc. I still do not know if you take these things for FM or your general health. That's why it's sometimes hard for us to compare or understand I guess. Taking an aspirin a day is not something any of us can relate to. Take GFE can't ward off true Fibro as far as I know.

    Anyway- I am always hopeful that there are good days yet to come. I have had them before so I never lose hope. Right now, it's a matter of getting through each day. Trying to listen to my body - resting as it tells me I need to etc. - That's a challenge in itself!
    Many days are spent in tears, but I am TRYING to find joy in simple things.
  16. karynwolfe

    karynwolfe New Member

    I wish I could say "this kind is easily absorbed by everyone" but it depends on the body taking it =(

    I was on magneisum for months without it doing anything. Then I switched brands, which had a different variety in it, and immediately felt the effects. That was by accident, by the way! I was young, I had no idea the type of magneisum mattered. When magnesium is helping you, from my experience, you feel it, because you get worse for about two weeks. But after that it can be of great help in stamina and a reducer of muscle pain. That site has some good information, research articles, and a section on which kinds to take under "Magnesium Supplement Suggestions" I think it'll help you figure out what kind to try =)

    Good luck and I hope you find one that helps you; any level of respite would be good. Again, I don't claim it to be a cure, but it really, really helps

    (By the way, i've never been magnesium deficient, so i'm thinking whatever way these supplements help, must be beyond just a simple "deficiency.")
  17. FibroFay

    FibroFay New Member

    I'll check it out. I think I should be taking some magnesium. When I stopped, I just sort of gave up on magnesium, period. But, with Fibro everything I read says take it. I believe we should take it around bedtime to help with nighttime pain. I'll try again. Thanks!

  18. lvjesus

    lvjesus Member

    between "degenerative" and "progressive". It is not degenerative, as in it does not harm you body like arthiritis that eats up your joints, but it DEFINITELY is progressing in one fashion or another. Otherwise many would never know that they had it or have it progress to the point of recognition and diagnosis.

    Here is what I mean. YEARS before I ever had any other symptoms I had tender points. My husband would gently squeeze my knee playing around and it would HURT! I would say, that HURTS, and he would say, "no it doesn't". Other times I would notice spots on my lower back down towards my hips where I would be touching them when I would have my hands on my hips and notice a sore place like a bruise.

    So why do I now have fatigue and wide spread pain instead of just a few sore spots? PROGRESSION. Blah!
  19. jole

    jole Member

    At the beginning, mine was beyond horrible, with the worst depression ever. But after a couple years I finally reconciled myself to the fact that my life as I knew it was over, and as some have said, I basically "died" and grieved for the old me. I then went on living in the new, accepted me, and it was a turning point of sorts.

    I suppose that got rid of some of the self-pity. But I have to say, even with the clearing of the mind, and the mental fog being less, the pain has gotten worse. Some days I can't sit, stand or lay...I just wander aimlessly through the house totally miserable, and even the pain meds don't touch it. I leave home 1-2 times a month..fatigue doesn't allow more than that.

    So far I'm on prescription meds and many supplements, but none seem to help. I will try switching my mag...the reason I liked what I'm taking is because it's liquid and I have a lot of trouble swallowing....but I can see no difference, even though I've been on it for several months now. Also take calcium, D, amino acids, and Coq10.

    I agree, there's a big difference between arthritis and Fibro......constant aching of muscles that feels like it's deep into the bone is a lot different than a few joints. Not saying that arthritis is not painful...but the cognitive difficulties, balance issues, insomnia, etc. that goes with the fibro is much more than just some aches and pains...................Jole
  20. hannahfaid

    hannahfaid New Member

    I was told it cant get worse just better when I was first dxed.... well, let me tell ya... I was ok with a hydrocodone here and there..2 years ago.... now I am on ms contin and percocet for breakthrough pain... I feel like hell 85% of the time.. all the things I used to do, even the easy sedentary crap, I cant do... A great big catch 22... people are mean, they dont understand.. they think u r whistlin dixie out ur butt.. why the hell would I make this up??
    I have gradually gotten worse then again my life has been way more stressful, which just exacerbates it all