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  • Fibromyalgia??

    I know there is a fibromyalgia thread already, but I am soooo confused.

    I've been having chronic pain for a while. Regular dr's think I am nuts. I finally go see a rhuematologist and have been for about 6 months now.

    Diagnosis is fibromyalgia with some sort of soft tissue disease. My ANA test come back positive. But specific tests for lupus, rhuematoid arth. come back negative. What would my ANA test mean?

    Now I can't remember the name, but he thought I had a condition that causes dry eyes and mouth. But I don't think I have that. My eyes and mouth are fine. I told him I am always thristy.

    I have been on lyrica 50mg 2 x day and nuerontin 300mg 3 x day. This takes away the every day pain, but I still can't do anything without suffering afterwards. If I go to work for the day I am crippled when I come home after just 5-7 hrs of work. I am starting a new job at the hospital next week and I am worried b/c it is 12 hr shifts. The lyrica and nuerontin make me spaced out. He gave me tramadol (sp?) for pain but this makes my heart race and keeps me up ALL night. Only took it twice and told him what it did. He gave me a new drug to try, hydroxychloroquin.

    I've switched family physicians and don't like the new one now. I hate to switch to a different rhuematologist.

    I am confused mostly about the ANA test. Any thoughts on it? Any questions I should be asking when I go back to see him?
    Derby Lyn Farms Website

    Derby Lyn Farms on Facebook!

  • #2
    I have no clue what an ANA test is but I just wanted to mention that a friend has been diagnosed with Fibro and treated by several doctors. Formerly she had a doctor who diagnosed her with hormonal issues , and treated them, which got rid of the Fibro symptomes. Unfortunately this doctor died and no other doctor would listen to her when she told them what the problem was and how it was treated. She moved to a new state, found a new doc, and he is treating the hormonal issues, which is making a big difference in the way she feels. She had problems similar to yours. She'd overdo and be down for a couple of days afterward. It might not be your problem but it is worth checking out if you are not getting relief.


    • #3
      Sorry you got diagnosed with fibro. Welcome to the club. It sucks.

      The condition that comes to mind regarding dry eyes usually is Sjögren’s Syndrome. The key to managing fibro is managing stress and finding the right combo of treatments that work for YOU. This syndrome never seems to work or respond the same way for any two people.

      Be sure to check out www.butyoudontlooksick.com too. Lots of great info on that board too. I'm PalominoMorgan there too. I was directed there on an OT day and have found it to be a great resource.

      Oh, fibro fog... almost forgot about the ANA. ANA is an indication of inflammation in the body. You can have a positive ANA for a variety of reasons. I had a postive ANA for years before I finally got diagnosed with fibro and now the wheels are really coming off my wagon, but that's a whole nother story. Sometimes it's as simple as an infection and sometimes it does indicate something more is going on.
      "You are a child of the universe, no less than the trees and the stars;
      you have a right to be here." ~ Desiderata by Max Ehrmann


      • #4
        AVOIDING STRESS really is the key, although I haven't managed how to do that yet! I have had fibro for over 20 years, for some reason it has gotten much better lately, but the changes in seasons always bring flare ups.I was on Neurotin for years as well as several other meds and honestly I eventually prefered the pain over the numbness(both mental and physical) that the drugs produced...Op is correct that you have to figure out what works best for you,as it is a clever illness and effects people differently. I would look to a nutritionist as well,I have found that reducing sulfites and gluten have helped.I also take extra vitamin B,Vit D, Vit E with my meds.Currently I take trazodone for sleep, lexapro and clonazapam....interesting about the hormones,I do feel better now that I have been going thru menopause....Good Luck and know you are not alone and it IS NOT in your head! oh if I had a penny for everytime I heard that!


        • Original Poster

          Thanks for the thoughts. Sometimes other people make me think I am going crazy. I think maybe I am overreacting about the pain. But I realize that I am not even 30 yet and I can't do half of what people in their 30's do. I know I need to exercise more. Being inside all winter does not help. And I think my job had a lot to do with it. It was very stressful! Otherwise I don't stress about much else. I start a new job next week. I too think I would prefer the pain over the fogginess.
          Derby Lyn Farms Website

          Derby Lyn Farms on Facebook!


          • #6
            You know that fibro is a syndrome (constellation of symptoms), not a disease? Have you been checked for anything infectious like a tick borne disease or mycoplasma infection?


            • #7
              As LauraKY mentioned above, what about a test for Lyme Disease? It can produce symptons very similar to other things that you may have it and not even know it. I had it for about 6 months before it was diagnosed and it is still kicking my ass sometimes. My fingers, wrists, elbows, shoulders hurt and I am achy and cranky. It all started with a pain in my foot, numbness in the hands and a rotator cuff problem. Since I work around horses, I could explain away most of the symptons. It was not until I had a rotator cuff problem in the other shouder out of nowhere that I finally had a Lyme test done and I was very positive for old and new Lymes. I was lucky enough to have a good friend who also has Lymes and she recommened a Lyme specialist. I have just started having symptoms again and am back on medication. It would certainly be worth your while to have the test or see a doctor who specializes in Lyme. It can really suck the life out of you..


              • Original Poster

                Already had the lymes test, with 2 different doctors.

                I realize fibromyalgia is what it is, and I know there is something underlying. Just have to figure out what that is.
                Derby Lyn Farms Website

                Derby Lyn Farms on Facebook!


                • #9
                  If you have any hypermobile joints, elastic skin, or widening scars you may want to look in to Ehlers Danlos Syndrome. It is grossly under diagnosed in most EDS specialists opinions and most EDSers do get diagnosed with fibro first. I have an appointment with one of the top specialist in Baltimore in August.

                  Here is some information about it in case any of it sounds like it might be something you want to look in to further.

                  "You are a child of the universe, no less than the trees and the stars;
                  you have a right to be here." ~ Desiderata by Max Ehrmann


                  • #10
                    ANA stands for "anti-nuclear antibody". A positive test suggests some degree of autoimmune response, which of course can then trigger inflammation.

                    Ditto on the comment about many causes, many manifestations. Recently there has been some support for a viral cause. But those results are controversial. I think there are many examples where stress alone has been correlated with fibromyalgia-like symptoms, so in my mind that's a good place to work on addressing any possible issues... since reducing stress will never hurt you in any way!! :-)

                    But if you look into the biochemical pathways, it makes a lot of sense how an overproduction of stress hormones depletes the metabolic precursors needed in other pathways, and how that ultimately triggers certain pain-response pathways. You can google things about the hypothalmic-pituitary-adrenal (HPA) axis and get more specific information about the connections.

                    One book that may seem quite "crazy" in its premise but I actually have heard from a lot of friends who swear that it has helped them (including one esteemed scientist who sits on an NIH panel... so he probably knows something!!) is by John Sarno: Healing Back Pain: The Mind-Body Connection. Although this book is oriented towards back pain, it really deals with the whole "mind-body" concept and will explain how the HPA axis depletion and general oxygen depletion result in joint, muscle, and back pains. And in the case of my friends and myself, the principles he discusses do seem to apply. So again.... this is an approach that certainly can't hurt (meditating and recognizing any underlying emotional issues you might be dealing with is never a bad thing, no matter what!) So you might try reading this book and see if it helps you.

                    Good luck!!!!


                    • #11
                      I have fibro too, pretty bad. I am sorry to hear of your diagnosis. PM me if you want to talk more.


                      • #12
                        Derby Lyn, I think we may be partially in the same boat. Sjogren's is one of the conditions with which I've been diagnosed. (Fibro and Hashimoto's are the others. It's all a balancing game.) Like you, I never really had any "dryness" issues, but I was constantly thirsty, and hurt all over-- badly. I don't know how much your rheumatologist discussed with you, but you want to take Sj seriously. Sj is technically a connective tissue disease that can progress into rheumatoid arthritis. I'm guessing you've been put on Hydroxychloroquine sulfate, or Plaquenil. This is an antimalarial, and is considered a high-risk med, particularly for vision changes; however, as I understand, it can slow the progression of Sjogren's into RA. Discuss potential vision changes with your rheumatologist and optometrist-- there is a specific test that they will want to do with you annually or bi-annually.

                        Regarding stress, I agree with everyone-- minimize every emotional and physical stressor that you are able to erase in order to find a bit more comfort. You'll likely find a balance of what you can and cannot emotionally/physically handle, when you can and cannot push through the symptoms, which specific triggers will affect you, but it will take some time. (A year into this bloody adventure, and I'm finally starting to understand my transient symptoms, where I can keep pushing through, and my "warning" symptoms, where things are about to compound and I must change plans.)

                        Having a psychotherapist (or even a sports psychologist) can help with the emotional ebb and flow of coping. Today is the first time I've posted here, but reading through others' accounts and experiences on this board and other internet sites has really helped me over the year. (There is very little research out there regarding fibro and athletics... when I first read that stretching and yoga were to be my fate, I was devastated. Seeing that other people are coping with identical or similar issues while still riding/working/training made it much easier in the beginning to keep going. ) While having a plethora of meds in my system daily, I've decided that I'm going to keep pushing until I literally am no longer able. To some extent, this truly is mind over matter.

                        Please feel free to PM me if you'd like. I have some semi-humorous stories about this past year's pandemonium that you might find entertaining. Some people cope by drinking, some people by crying, I just write quasi-self-deprecating monologues. It's all good.


                        • Original Poster

                          Just checking back here. Yes it is hydroxychloroquin and I was told I need to see an opthomologist for eye changes.

                          It is a mind over matter game. I am a very athletic person, so I push through the pain to do things and just deal with it the next few days. I started a new job and work 3 -12 hr days which is really rough. And started back at school 2 days a week. Getting up in the morning is slow and painful. My stomach has a mind of its own and I never know what is going to upset it. I just bought a book I saw at the grocery store today. Its called the complete guid to healing fibromyalgia. I read the first page and the whole 1st 2 paragraphs sounded like my life story. It is pretty bad, but I have always had a high tolerance for pain.
                          Derby Lyn Farms Website

                          Derby Lyn Farms on Facebook!


                          • #14
                            FWIW I just got an email from UVA asking for volunteers for a study on fibromyalgia. If anyone is interested PM me for contact info
                            I wasn't always a Smurf
                            Penmerryl Sophie RIDSH
                            "I ain't as good as I once was but I'm as good once as I ever was"
                            The ignore list is my friend. It takes 2 to argue.


                            • #15
                              Often people don't realize they have dry eyes or dry mouth and therefore think that Sjogren's syndrome is not the right diagnosis. Dry eyes can often manafest itself as feeling gritty or having "allergy eyes". Dry mouth can also feel like you need to sip water a lot or just dry lips.

                              I was diagnosed with Sjogren's syndrome just over a year ago with a positive ANA test and SS-a and SS-b antibodies along with a few other things. Before that I have had the diagnosis of chronig fatigue syndrome(for about 10 years) which often goes hand in hand with fibromyalgia. I do thing these are all related somehow! I have chronic pain which is quite debilitating and suffer greatly from fatigue and brain fog. I wouldn't be surprised if I ended up with a diagnosis of fibromyalgia in the near future. But plz get your teeth checked regularly if they suspect Sjogren's syndrome because even a slight drop in the quality or quantity of saliva will lead to major dental problems down the track!

                              My dr has me on tramadol sr 100mg twice a day and I find that it is ok for a lot of the everyday pain but in a flair up it does nothing I want to try the plaquanill but have to wait for my ruhmatoligist appointment next month grrr... It's a slow process of balancing medication but we will get there


                              • #16
                                What test did you have for Lyme? The ELISA test has a pretty terrible diagnostic rate and that's the first line test most doctors use. See a Lyme specialist for testing. At the very least, check out the Lyme checklist.


                                • #17
                                  As you can see i'm new here. I just found this thread and had to reply.

                                  I was diagnosed with Fibro in 2004 but i know i'd been dealing with it for years before that. I will be 50 in September and i'm staying VERY active. I can't take Lyrica, tried it and it freaked me out pretty bad. Horrible vertigo and paranoia. The only pharmaceutical i take is Flexeril and then only when i really need it. I raise bird dogs, do most of our yard work, clean the barn, and have a huge garden that i take care of myself. Last two yrs have been torture, but this year i'm doing really well with all of it.

                                  After reading this i'm beginning to wonder about Sjogren's Syndrome now. Most of the listed symptoms fit me to a t, which is a bit scary. So i'll contact my rheumatologist and see what he says.

                                  I also have Raynauds so winters are particularly tough for me. AND the kicker is that i'm going through menopause...oh joy...and have all the hormonal issues. I get menstrual migraines, whenever my period decides to actually happen. I will be SO glad when that's all over!!

                                  The biggest thing i did was start a nutritional supplement program called Reliv. I am a born skeptic and would never have even tried it except that i trusted the two ladies who encouraged me to start. I've been using their products since january and the changes in my energy levels and recovery process are nothing short of amazing. I went from a daily pain level that ranged from 5-8 on the pain scale to a daily pain level of 2-4. Only when i seriously over do it am i in trouble.
                                  People take different roads seeking fulfillment and happiness. Just because they're not on your road doesn't mean they're lost.---Dalai Lama


                                  • #18
                                    Originally posted by PalominoMorgan View Post
                                    If you have any hypermobile joints, elastic skin, or widening scars you may want to look in to Ehlers Danlos Syndrome. It is grossly under diagnosed in most EDS specialists opinions and most EDSers do get diagnosed with fibro first.
                                    That's how it went in my case, I got the Fibro diagnosis first, then the EDS diagnosis later.

                                    Fibro goes hand-in-hand with a lot of other disorders, though it's certainly possible to have it as a primary.

                                    I don't take a lot of medication. Savella worked wonders for my symptoms, but it ended up raising my blood pressure dramatically. Pretty much everything else makes me sleepy, which isn't really all that helpful. I want to have less pain so I can go out and DO things, not so I can sleep on the couch :P
                                    "In order to really enjoy a dog, one doesn’t merely train him to be semi-human. The point of it is to open oneself to the possibility of becoming part dog."
                                    -Edward Hoagland


                                    • #19
                                      Fibromyalgia is a syndrome not a disease, you need to get to the bottom of the cause. In my case I was mold/biotoxins toxic, check into Dr. Richard Shoemaker's protocol. I was nearly totally disabled last year from this and now I am not.

                                      I also use a salt therapy with Himalayan salt called sole, take curcumin, magnesium supplements from Thorne, and also regular salt baths for detox. I have to watch my diet but I am much much better and would have been most certainly diagnosed with fibromyalgia if I had stuck to the conservative doctors route.

                                      I tested positive for Lyme but since my doctor is a member of ILADS (International Lyme and Associated Diseases Society) he reads the results differently in terms of different bands and levels. I am not suffering from Lyme disease, I was suffering from high levels of exposure to mold in two houses, and I am gentically predisposed to mold toxicity. Many people are of course, but I was tested through this doctor. I cannot say enough about Dr. Shoemaker's protocol. He is from Pocomoke City, Maryland and is nationally reknowned for his sick building fights. Look into Contrast Visual Screening and you can find out what you need to know as long as you find a doctor (MD with holistic training) who is open to utilizing this protocol. My doctor had just been to a conference (I am in Seattle), where Shoemaker spoke and was very impressed. Of course we are mold central here but most MDs just are not interested, it is incredible.

                                      Good luck.
                                      "We, too, will be remembered not for victories or defeats in battle or in politics, but for our contribution to the human spirit." JFK


                                      • #20
                                        Calamber, you nailed it. Fibro is not a disease by itself. It's a constellation of symptoms that may be caused by various different infection and allergies. Oddly, I've found that many people with a fibro diagnosis refuse to investigate further. I don't know why. Maybe it's doctor resistance (easy to diagnose, and then throw pain meds and anti-depressants at them), maybe some people identify with that particular disease, I assume some have investigated other causes as far as their insurance and pocketbooks would allow.

                                        My Lyme doctor recommended Dr. Shoemaker for people who couldn't get their Lyme under control.