No inflammation?

Discussion in 'Fibromyalgia Main Forum' started by Misfit101, May 22, 2010.

  1. Misfit101

    Misfit101 New Member

    I read someone post that this dd doesnt cause inflammation. For the last two months my knees have been giving me fits. One or the other would hurt so bad and i couldnt bend them without suffering terribly. Tender to the touch. I even noticed like a knot around one area. And they were swollen. The only saving grace is that it usually only lasts about 3 days then jumps to the other knee. I did have it in both knees at the same time a few days ago. I just figured it was just another flare. But if there was swelling then that couldnt be it right? Almost everything ive learned about FMS ive learned from here. Im so hoping someone here has an idea. I sure dont.
  2. HeavenlyRN

    HeavenlyRN New Member

    Hey girlfriend! While I don't have an official answer for you I can tell you what it's like for me.

    My knees hurt alot! Some mornings I walk like I'm made of glass and I'll break if I walk too quickly. Last night we were over at our friend's house and I just happened to look at my knees (WHY, you ask? Who knows...probably just 'cause they were there!!!) and I noticed a swelling on both of them that I hadn't noticed before. I know that I have osteoarthritis and that's one of the places I have it.

    So, I'm wondering if you have arthritis?
  3. Misfit101

    Misfit101 New Member

    Omg...the dreaded "A" word. At 52. I know it can strike at almost any age...but Im not ready to add that to the list of whats wrong with me. *sigh* In all honesty I try to stay away from my doctor. Shes treating me primarily for chronic pain unrelated to FMS, and other issues like perimenopause. I only have to see her every 6months. I avoid her because she always wants to send me for tests i dont want or treatments (like those awful shots in my shoulder) that id like to avoid. I know shes just doing her job. I suppose im going to have to put my big girl panties on and make an appointment. I was hoping to not have to add yet another drug to the cocktail i already take. And shes quick with that rx pad. I just wish she wasnt always in such a rush. I dont get the answers i need. Oh well I have to start somewhere. I just didnt want it to be there. Thanks yall. I do appreciate the responses.
  4. Nanie46

    Nanie46 Moderator

    FM pain, arthritis, should consider that the CAUSE of your symptoms could be the bacterial infection Borrelia burgdorferi (Lyme).

    Please read this info and symptom list....
  5. Misfit101

    Misfit101 New Member

    Thanks to all the info here, that HAS crossed my mind. More than once. Ive had MANY tick bites tho I dont remember the tell-tale bulls eye rash. But I have had them swell and theres a definite possibility I was bitten in an area I couldnt see. Lots of ticks here in okla. I can almost guarantee theres not a LLD around here. I need to have a serious talk with my doctor. Dh works with a man who has Lymes. Hes very sick. I need to see who his doctor is. Thanks for the reminder...I needed it!
  6. SnooZQ

    SnooZQ New Member

    FWIW, I disagree with those who say there is no swelling with fibro.

    While most of us relate to our own experience, and assume it is similar to that of other folks with the same DX, not all of the experts agree.

    Quite a range of symptoms that can occur with fibro.

    One of the most educational articles I've found on the PH site is by Mark Pellegrino, M.D. He describes the total spectrum of suffering related to fibro --

    In this article Dr. Pellegrino describes among other subtypes, pre-fibro, regional fibro, fibro secondary to other diseases, and fibro "with" other diseases. Inflammation may occur in some of these subsets, but does not occur in all of them.

    Many people will argue about "pure" fibro -- but I haven't found any studies defining the "pure fibro" entity. We don't have a lot of tests. The DX is based on a few symptoms along with numerous rule-outs, & we know that many who get the DX don't have all the relevant rule out testing done.

    Perhaps in future we will have more definitive tests for something like "pure fibro."

    However, IMO the discussion about whether or not it's part of the fibro is somewhat academic. You have pain & swelling, which typically indicate an inflammatory process. The simplest & most economical place to start for treatment is OTC NSAIDs, if you tolerate them. NSAIDs would be things like Motrin, Advil, aspirin, Aleve, Orudis.

    If the OTCs don't touch your pain, or if your swelling is more than occasional, you will probably want to discuss the situation with your PHCP.

    Best wishes.

  7. Misfit101

    Misfit101 New Member

    I push the max dosage for NSAIDS when this flares. I dont like taking them but I have to do something. It helps a LITTLE. And I will discuss supps with my doctor. I dont want to get ahold of something that might react badly with my meds. Hope shes got time for a heart to heart. Jam...dont blame you for not wanting the 60yo sister is taking the injections hoping to hold off surgery herself. I dont like those injections but the mere thought of surgery makes me ill. I almost have a phobia of it.
  8. Nanie46

    Nanie46 Moderator


    If you have had many tick bites the chances are probably 99.99% that you have tick borne infections...a combo usually.

    Many people with tick borne infections never had a rash...including me.

    Don't expect much from your Dr...that's why so many people are undiagnosed...they do not know how to recognize, diagnose or treat lyme and coinfections.

    He would probably run a "lyme test", see the typical negative result, and assure you that you don't have it.........which is soooooo wrong.

    Get him to order a western blot IgG and IgM from Igenex lab in CA. call or email customer service for a free test kit. prepay for test (about $200)and send into insurance later to see if they will pay, or if you have medicare they will pay.

    have blood drawn on a Mon or Tues morning and have the lab prepare the blood and fedex it to Igenex the same day.

    Even this test is not 100% accurate but it is the best chance of finding the antibodies to the lyme bacteria.

    My test was officially CDC and Igenex negative but I had some Lyme specific bands show up which I recognized since I had done my homework.

    It is very important to remember that MANY people with lyme have ONLY HAD NEGATIVE TESTS.

    Lyme is a diagnosis made based on history, symptoms and exam.....NOT a LAB TEST.

    I can guide you to lots of must educate yourself because 99% of Dr's really know nothing at all about Lyme, Babesia, Bartonella, Ehrlichia, etc.

    I advise you to go to on flash discussion.....sign up for on the Medical Questions Board.....go there and read posts and post your questions. You will learn lots! also has other boards such as "Seeking a Doctor".

    Here is some more info too...

  9. karynwolfe

    karynwolfe New Member

    Going to have to go with Nanie on this one.

    The rash means nothing, the exposure means everything.

    Knee pain is a MAJOR MAJOR MAJOR clue for Lyme disease, especially migratory pain like you're having!

    No, FM does not cause inflammation in and of itself. The diseases that it comes with are almost always inflammatory, however. I personally think Fibromyalgia NEEDS something inflammatory to happen in order to be triggered, whether it's acute immune reaction via an infection, or physical trauma, or an autoimmune disease, whathaveyou. For example, when my FM was triggered by an inflammatory illness, but then the inflammatory illness went into remission and I only had to deal the Fibromyalgia, there was no inflammation. That's not the case for me now, as I'm out of that remission and all the inflammation is back.

    Whatever you do, do NOT let the doctors give you ANY steroidal medications (prednisone, methylprednisolone, etc) for your swollen joints, until you have seen a doctor to check about Lyme disease; he must at least do a Western Blot. If you even have one or two bands pop up on your test, you need to see an LLMD; I too suggest going to Lymenet and finding a doctor, as these are life-changing steps. If you do have this infection and you take steroids, you may feel temporarily better but will gradually get worse.
  10. Misfit101

    Misfit101 New Member

    Im just now getting an education about these DDs. Now this. Dont misunderstand I GREATLY appreciate this info and Lyme did cross my mind. Ive been running a low grade fever as well. I did not know knee pain was one of the major signs of lymes. This is what i meant way back when, when i wondered how much of this was the DDs and what might just be aging. I can only do so much with this phone but i can access the web sites. I have a doctors appt this wed...theyre working me in...and ive made notes from what you all have posted here. Ill ck out the sites recommended and take more notes. Thank you so much!
  11. karynwolfe

    karynwolfe New Member

    I'm not looking to start a dispute and everyone is entitled to their opinion, but I am moved by your post (not necessarily in a good way) and need to express why. You know, jamminhealth, it's such a mistake to just blame the conditions you already have for your symptoms.

    For example, every single person with M.E. gets extreme fatigue and weakness, but that doesn't mean they're immune to other illnesses that can cause the same symptoms. If ONLY it were that easy!

    I had very few signs that I had Lyme: Only one tick bite in an area where Lyme disease is rare, with migratory knee pain in the very beginning (severe, couldn't walk on it, then it would go away; jump to the other knee and back again), then fever patterns (three to five day low grade fevers, repeats every four weeks), and then all the other stuff only popped up when it spread to my brain and started to do nerve damage.

    If it weren't for Nanie preaching about this, I would have never continued to look into my symptom patterns. She was the final instrument in the direction God was trying to push me, toward knowledge. I feel I can safely assume you do not have experience with Lyme disease. Please leave the advocating to the people who have lived it first hand and want to help others; I do not see what there is to be gained from telling people NOT to worry about any condition when they're having symptoms of it.

    Just because you have one thing, doesn't mean there is no other cause. Life is not so simple, and you've lived a grand time enough to know that, I'm sure.

    If there's a chance someone could have AIDS or Parkinson's, you'd want them to take all measures to get throughly checked. It's the same for Lyme disease, especially when you've had exposure. It's not our fault if the tests are so bad that they can't pick it up half the time, and therefore people think we Lymies over-react. People do the same thing when it concerns M.E./CFIDS. If it weren't for us being our own advocates, none of us would be better. Tons of lucky people have the immune systems to fight off such infections and keep it at bay, but not everyone does, especially after REPEAT exposure.

    I do not understand at all why someone would imply not to worry about it, when the cost could be so dear, and the prize could be so amazing, to find out that you could have something treatable. I hope you have found my reply to be respectful and sincere.

    I'm glad you're looking into it Misfit, especially since you mentioend the fevers, my goodness. Congrats to you being your own advocate, it will take you far. Keep copies of every test result!
  12. Misfit101

    Misfit101 New Member

    Part of my problem is im my own worst advocate. I tend to avoid physicians. I think its safe to say that i dont panic about much. Im just now starting to educate myself and to advocate for myself. Im not getting any better and i dont want to leave any stone unturned. Imagine my surprise to see that im positive for most of the symptoms. Not so much for any of the coinfections tg. I live in okla and certainly dont have to hike in the woods to come into contact with ticks mosquitoes etc. Both are prevalent. All i know is today im feverish and cant walk. The pain at the top of the back leg has effectively crippled me. And it radiates to the front.I cant tell you what going to the bathroom does.No joke. Whatever this is I want to know bc I cant take it anymore. I appreciate all peoples responses. To me...this is brainstorming.
    [This Message was Edited on 05/24/2010]
  13. Nanie46

    Nanie46 Moderator


    Your reply moved me. I did not know (or my lymie brain did not that I had any impact on your diagnosis.

    Thank you for being open to the possibility of a complex bacterial infection. Hopefully that knowledge will change your life.

    God has guided me also and he continues to do so.

    You will help others by relating your experiences here, so thank you.

    That is all I really want to do, is help others.
  14. Nanie46

    Nanie46 Moderator


    Thank you for being open to the idea of Lyme.

    It is actually an unrecognized epidemic.

    The mix of tick borne infections can be hard to separate.

    Some people have distinct symptoms of babesia or bartonella,etc and others don't, but have the infections.

    It is more common for people to have more than one of tick borne infection, than to have lyme alone.

    I avoided Dr's for many years too. I think it actually saved me because therefore I was never given steroids that would have made me worse.

    The hardest part from here on in is realizing that Dr's do not know how to recognize, diagnose or treat lyme and related coinfections, so you MUST read, read, read.

    You must be your own BEST advocate. If you leave it up to any non-LLMD you can forget it.

    I'll be glad to help you in any way.
  15. Misfit101

    Misfit101 New Member

    I try to not close my mind to anything. I have several jumping off points. Somehow i doubt the knee pain is arthritis. Its too severe. I have arthritis in my hands and the pains are polar opposites. Hard to explain...just different kind of pain cos arthritis hurts too. I would have to rule oa out as well.What another poster said about her knee pain (plz forgive my lack of a memory) is EXACTLY what mine do. Is it lyme? Maybe. Maybe not. I have to rule out all possibilities. DH works with a man who has Lyme. Missed 3mos of work recently. If Im not satisfied that my dr did all she could to rule it out, ill visit his dr. What i dont understand is after pain being at a 10 ALL day and most of the mysteriously eased up. Now im at a 5. Im praying i dont have to go to the bathroom. It seems it comes on w no warning and leaves the same way. Darned if i understand it. Thank you for offering to help.
    [This Message was Edited on 05/25/2010]
    [This Message was Edited on 05/25/2010]
  16. karynwolfe

    karynwolfe New Member

    Hi Misfit,

    Mine did that to an annoying degree, because I'd make an appointment with my doctor when they hurt, but by the time I got there the next day it would be "gone." And then it'd repeat and I'd go back to the doctor, then not have pain again... If she didn't know me so well she'd have probably thought I was nuts!

    My hypothesis about this is, when the pain flares is when the bacteria are replicating. I have no idea why it's the knee, but maybe because it's such a weak area in our bodies? The knee is the most complicated joint on the body. I remember one horrendous incident where I went to bed fine and then woke up in the middle of the night, just about crying because my knee was in unimaginable pain, for some "unknown" reason. I could. not. move it. Then it went away later that day!!!

    This only lasted a few months before it stopped...Unfortunately that was only because the bacteria had moved on to other places. :(

    Keep us updated on whatever you find.
  17. karynwolfe

    karynwolfe New Member

    It did change my life, nanie, thank you very much.

    For a long time I had this idea in my mind--like a lot people--that if I ended up with a Lyme diagnosis people would never take the fact that I had M.E. seriously. I'd just go in the "misdiagnosed" category and I KNEW I hadn't been misdiagnosed: I'm about as classic-M.E. as it gets! But I didn't understand, and if people asked me what was the difference between them, I wouldn't have been able to answer! Then after noticing the certain symptom patterns that I mentioned above, I realized THAT was the difference, and that WOW, it really is possible to have them both even though they're so similar.

    Just because someone has one systemic disease doesn't mean another one can't come along--and me, with my already weakened immune system that can barely even fight off a cold, I should have known that!

    But thankfully God continually pushed me in that direction until the dots connected, and after I realized the strong possibility I had Lyme, I asked my doctor for a regular Western Blot. One band popped up, and I ran with it, using every resource available to me and ounce of strength i had left to get myself to a doctor--even though he was a five hour drive away. But I had to, it was like I was slowly dying...turns out I had Lyme disease and bartonella on top of everything else.

    Thank you for not being afraid of what people will think, and continuing to share the fact that sometimes "FM pain" isn't just FM. Ironically, my FM had already gone into remission by the time all this other stuff started happening, so it was just the fact that you started mentioning Lyme symptoms that made me take notice...

    He definitely uses people. :)
  18. Misfit101

    Misfit101 New Member

    Even tho Im better today (still having difficulties) ...if I woke up tomorrow feeling like a million bucks (like THAT ever happens right?) Im keeping that appt. I know this will happen again. Its happened before. So I was trying to think my timelines thru so I can give her an accurate account of all of this...and I shocked myself to remember that the 2 previous times it was THIS bad, I ran fevers then as well. Ive run fevers before for no apparent reason...but these episodes of this horrible pain are coming more frequently. I always have pain...but not like this. And even the sciatic pain is lessenf. I was afraid it was my back problems bc ive sure dealt with that too. It wouldnt have eased up this fast if it were my back. I know that from experience. Plz dont thank me...its in my best interest to pursue ALL avenues to try to get to the bottom of this...whatever the outcome is. I thank everyone for their suggestions!
  19. Misfit101

    Misfit101 New Member

    Its been at least a year since my last tick bite...but from what i read the symptoms can pop up even years later? I still have so much to learn about everything. It was easier when i just had a disabling back problem to deal with. Never thought id say those words.
  20. karynwolfe

    karynwolfe New Member

    My doctor unknowingly gave me steroids for my knee (thank God I only took a few pills!), after the X-ray revealed nothing was physically wrong with it. And, I know what you mean. Never thought there'd come a day when I'd think, "It was easier having -just- M.E.!"

    But I was indeed, at the very least, glad that FINALLY I had something I could DO SOMETHING about. :) I know this is very overwhelming but just take it one day at a time, you don't have to become an expert overnight, and know that you can face whatever happens.

    This is a good reference if you're able to view it:

    Lyme is usually a gradual onset illness. My symptoms started three months after the tick bite, but the more other infections I got, the easier it was for it to show itself.