HELP! Can Flares suddenly turn real severe in Fibro?

Discussion in 'Fibromyalgia Main Forum' started by nightngale, Jul 24, 2009.

  1. nightngale

    nightngale New Member

    I am scared. I have been struggling along with fibro for 14 years, last 5 being the worst. This spring I got even more fatigued, and woke up one day with multiple joint pains, ankles, wrists, back, knees, aches, all over....lasted about a month with the pains. Then gone. Except still have morning finger stiffness. All RA tests negative, though my PCP said Ra can happen before it shows in blood. Also few different areas of tendon rupture, popping, tendonits, frozen shoulder.....Then keep having "episodes" of sudden weakness and inablility to walk or stand, lasting a day, hours or more, usually in an episode of time. Last "flare" being 2 weeks with severe leg pain and disability. My rhemy put me on celebrex and I finally got over that one. He thinks it is still just fibro. I am also on Tramadol around the clock and have percocet prn. I felt like going to hospital. I just feel like something else is going on on top of it. I went to see my great new neuro and he didn't even do a basic exam or test, just asked my why I couldn't accept it. Said one patient of his was in wheelchair on morphine. I just can't believe all of a sudden I am going downhill so fast. Can fibro really keep getting worse and worse? Last summer I was having some good times where I actually went to beach and got in ocean! I have not been on the board for quite a while due to my big new addiction of beading, which is sooo much fun. Thanks for any advice. I feel like I need to be reevaluated.
  2. nightngale

    nightngale New Member

    Just wondering if anyone's FM has gotten worse and worse or suddenly worse over time. Thank you!
  3. Nanie46

    Nanie46 Moderator


    I had a FM diagnosis for 21 years. About 17 months ago I had a real setback with excrutiating neck pain and headaches.

    In October I started researching what could be causing the FMS and other symptoms besides viruses which I already treated for.

    I discovered through persistence and research....and not listening to what 3 doctors told me...that I have a chronic borrelia burgdorferi infection (lyme) and bartonella. I probably have babesiosis too.

    I never properly considered Lyme and coinfections because my symptoms were exactly that of FMS. When I first got sick in 1987, my Dr told me it was a viral infection.

    I always knew that FMS has a cause but Dr's just say it has "no known cause". That just means they haven't found it and you will suffer for the rest of your life.

    You have alot of symptoms of Lyme and coinfections. You may have even had a "lyme test" which was negative, so you were told it wasn't lyme.

    99% of Dr's no nothing about how to diagnose or treat chronic lyme and coinfections. Lyme is never, never ruled out by just a negative lab test.

    Most Dr's use tests that are very inaccurate. They also do not know that lyme is a clinical diagnosis, based on history and symptoms.

    I do not remember a tick bite or a rash, but about 50% of people don't.

    Remember that Lyme is a very complex bacterial infection. That is why it can cause a FMS or a CFS.

    Here is a great paper by a lyme expert. Please read the symptom list on p 9-11. There is coinfection info on p 22-27. The entire paper is filled with excellent info that 99% of Dr's do not know...........

    Lyme is a very complex illness. People have presentations that look just like FMS, CFS, Rheumatoid Arthritis, MS, Lupus, Parkinson's, Alzheimer's, bipolar disorder, autism, ADHD and others.

    Depending on which tick borne coinfections a person also has, can depend on their set of symptoms and how sick they are.

    Lyme got it's name when a group of children in Lyme, CT all presented with what they thought was Rheumatoid arthritis. It was Lyme arthritis.

    If you ask any of your Dr's about Lyme they will probably just tell you that you don't have it.

    I'm glad I did my own research and got a Western blot IgG and IgM from Igenex lab in

    My result was CDC negative and Igenex negative, but I have lyme. I learned that certain bands on the western blot are specific to the lyme bacteria (see p 7 of the above link). I had some of those bands present.

    2 other sites with great info..... (see symptom list at the end, and diagnoses that people are often given when it is really a chronic borrelia burgdorferi infection)

    You can post for me on the Lyme board anytime if I can help you in anyway.
  4. nixon

    nixon New Member

    In Feb of this year after suffering a terrible sinus infection I was put on 2 weeks of Augmentin, which did nothing for me. Was then put on Levaquin.......Boy oh boy....I had the WORST flare of my life ! I had 5-7 days where I could barely walk, it was truly unbelievable.

    It took me quite a while to get back to my " normal".....Which isn't all that great, but at least when taking my regular meds that I take on a daily basis, I was able to function again .

    I had NO IDEA what was happening to me, but after much research & great help from members here on this board I realized that the Levaquin had caused this horror flare that I dealt with for at least a month, maybe longer !!

    I'm sorry that your Neuro didn't even do an exam. I feel as though you probably DO NEED another evaluation by a GOOD Dr.......Some one who WILL listen to your concerns.
    My doc would never admit that the Levaquin could cause the HORROR that I was experiencing, but she did at least flag my file as being Allergic to that class of drugs.
    Through my research I learned ALOT about fluoroquinlones, and the damage they can do to us, Especially FMS/CFS/ME patients.

    I'll be praying that you get some answers ! ( and relief)
  5. AuntTammie

    AuntTammie New Member

    For me, both the CFS and Fibro have progressively worsened; however, that has overall been fairly slow.....when I crash badly, it is always bc I somehow managed to overdo it....when this happens, I typically improve afterwords, but generally not quite back to my previous level of functioning.

    So, say I started (b4 being sick) functioning at a 100 (on a scale from 1 - 100), then got sick and dropped to 75, improved some to 80, overdid it and crashed down to a 40, improved back to a 70, etc. In that vein I have gradually decreased in functioning down to say about 25.

    There have been a few times, though, where I have for no obvious reason suddenly crashed down to about a 5. When that has happened, it has always been something else going on that is exacerbating my symptoms, so not actually a "normal" flare (crash) for me. One time this happened due to starting to take MSM (which helps a lot of people, but which I found I absolutely could not tolerate). Another time it was due to taking probiotics (again many find them helpful, but I cannot take them). Both times, I knew that there was something making me worse, and it was not only the ME/CFS FM stuff, and I also knew that I had not overdone it physically, emotionally, or cognitively (more common triggers). I was positive that it was not the "normal" course of my illness, even though others seemed to believe that that was the case, and the same others kept insisting that the MSM and probiotics could not possibly be to blame. (I'm not referring to people on here, btw). There have been other similar occurrences, too, with other reasons behind the flares. (They were all somewhat related to having these illnesses, but they were not due to the "normal" progression of said illnesses.)

    Anyway, I am saying all this to try to explain that though these illnesses are capable of causing all sorts of different weird things in our bodies and though they can get better and/or worse in a seemingly random manner, they are not always the cause of everything that goes wrong in our bodies, and most of us tend to know our bodies pretty well. (And we often do not react according to conventional medical wisdom.) Actually, I think that many of us are very in touch with our bodies, and quite aware when something is off and not necessarily a part of our illnesses. So, if something gets a lot worse with no obvious cause, or a new symptom arises, and it is bad enough to cause alarm, then it is worth checking into further and not just dismissing it as part of the ME/CFS or FM. Of course, like everything else ME/CFS and FM related, this is just my experience. Yours may be different.

    Basically, what I have been trying to say is that you should trust your instincts. You know your body best.
  6. hermitlady

    hermitlady Member

    I have become much more fatigued and weak in the last 2-3 yrs, I've been diagnosed w FM for about 12 yrs. As the fatigue became more of a problem, the CFS diag was added to my chart.

    I do know that my stress level has increased, therefore causing more frequent flares. I always ache, but sometimes a flare will lay me out flat for days on end. My sensory sensitivities are MUCH worse on a daily basis, sound and light somehow HURT me!

    I also have frequent crashes where I HAVE TO lie down. It's like a complete system failure...I get so weak, my breathing even gets shallow and irregular. Can't hold my head up, can't chew and swallow food easily, it is so scary! Usually if I rest and get some food and fluids in me, I feel sort of "better" in 2-4 hrs. I just never know when the crash will hit because I've never been able to track a pattern of causes etc. I have passed out cold from these episodes, so I have to be careful and very aware when the weakness creeps up on me.

    I am pre-menopausal at 48, and often wonder if my hormones are also affecting my existing problems. No regular MD will ever agree to hormone testing when I've asked. Some day when I have the money, I plan on going to a Holistic type Dr that my friend goes to for her female problems. She uses a compounding pharm and gets things specifically formulated for her body.

    My Dr recently found that I have a genetic Mitochondrial disorder. This causes problems w energy production in each cell. I have a few supps I take and give myself B12 shots, but haven't noticed a difference.

    I feel that these dds have rapidly aged my body.....I feel 20 yrs older physically than I am. Sometimes my mental clarity is so fogged that I have trouble concentrating and/or remembering things. It's all just one big mess, I keep hoping for some miracle drug/cure to be discovered... I want my life back!!!!!!
  7. Nanie46

    Nanie46 Moderator


    Please read the symptom lists in these 2 wonderful resources.......they include light and sound sensitivity along with many other possible symptoms.....

    pages 9-11 of this one....

    near the back of this one...
  8. Janalynn

    Janalynn New Member

    I can say that I have absolutely gone through periods (most recently) that I have felt MUCH worse than ever before.
    I think it's the nature of the beast. It's very unpredictable and has no real pattern - certainly not the same for any two people - not exactly any way.

    You definitely can have something else going on (besides Lyme by the way). When the mentioned tendons rupturing, the first thing I thought of is if you'd been taking Levoquin. Ironic that Nixon had posted right below. That can be a horrible drug for many people.

    I can see a positive correlation between my stress and my pain. I mean I've always known it played a part but it's been so clear to me lately. The problem is, sometimes just having FM causes stress because of what it does to our lives.

    If you feel that something more than FM is really going on - don't accept "it's just FM" from your Dr's. Listen to your gut. certainly can be Fibro. My life has changed DRASTICALLY in a short amount of time. Feeling even worse in the last week - now getting me down even more emotionally.


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