Discussions By Condition: Fibromyalgia

i definitely have fibro. I have been diagnosed by 3 rhuematologists. My current dr keeps saying i have additional symptoms that seems to be rhuematological such as those for ra or some for lupus. He tests and tests (blood workup) and it comes back 'normal'. From my own research i do not believe it is lupus but what else does fibro get diagnosed for and what tests distinguish the difference? I think there is something more than fibro but i do not know what. I do have symptoms that fit ra but the blood work keeps coming back negative. Could there be multiple false negatives? Any info is appreciated.iam not sure about that but ms also goes along with fibro,ra and lupus. I have fibro now iam getting test to see if i have ms or ra ,and all of these are bad

I definitely have fibro. I have been diagnosed by 3 Rhuematologists. My current dr keeps saying I have additional symptoms that seems to be rhuematological such as those for RA or some for Lupus. He tests and tests (blood workup) and it comes back 'normal'. From my own research I do not believe it is Lupus but what else does Fibro get diagnosed for and what tests distinguish the difference? I think there is something more than Fibro but I do not know what. I do have symptoms that fit RA but the blood work keeps coming back negative. COuld there be multiple false negatives? any info is appreciated.have you checked out hughes syndrome? also it can take years for bloods to show up lupus r/a. etc and sometimes they never show the illness. for every one time i test postive for lupus the next 3 times are negative.the bloods are just a guild to help the doc. nicola

Have they checker for Epstein Barr? Also you might want to look into any thyroid disorders like Hoshimotos. I pasted my story below. It is frustarting not to know the answer. I firmly beleive that Fibromyalgia is a catch all diagnosis for when the doctors get stumped. I believe my symptoms started around age 8. Over a two year span I was seen by numerous doctors for knee pain (joint pain) and headaches. The only explanation my parents were given was growing pains. At age 11 I was out of school for 5-6 weeks due to monoAll though high school I suffered from chronic fatigue, back pain, and it seemed that I was always sick. Although I have always been extremely smart, during high school I started noticing I was unable to focus on anything and often felt very ditsy. I was treated for depression and frequent UTIs. I don’t recall any other testing. At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal. Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs. I was given narcotic pain meds and anti depression medication to help with my symptoms but nothing ever helped. This continued for a couple years. I was unable to hold a job due to my daily struggles. My husband at the time was very unsupportive and told me that it was all in my head and that I needed to snap out of it and stop being lazy, which led to divorce. While pregnant with my second child, again I felt much better. Now 8 years after my diagnosis of Fibromyalgia I am taking a turn for the worse. My body is failing me more every day and I still have little answered. My ANA levels were abnormal in 2008 but now they are normal ruling out lupus, my Epstein Barr is positive, and my thyroid levels are normal. Symptoms:FatigueJoint PainHead Aches and migrainesKidney painFrequent UTIs and other infectionsMuscle WeaknessLow blood pressureSleeping 12-17 hours per dayVision issues (delayed focus, twitching sensation)Easily bruisedSinus Pressure and face and jaw painBloody mucus out of my nose dries and is very painfulOccasional rash (small scaly bumps over face and chest)Memory LossBrain FogSlow speech (sometimes even slurred) DizzyBlack out upon standingSensitivity to cold New Symptoms:Pressure and Discomfort on lower left side of my neck with some swellingWorsened headaches that never seem to go awayWorsened joint pain so severe that I have to wrap wrists and ankles with ace bandages for days at a time.Loss of urine. I have actually peed my pants two times this week! And I am 26! I just got a sudden urge to go and didn’t make it in time. I couldn’t control it at all! Yuck! I have been made to feel like I am crazy by my doctors and if it were not for my very supportive husband (married 2 years ago) I don’t know how I could even make it through a day. My husband and I are very frustrated and on top of it all unable to get insurance due to pre existing conditions. So not only do the doctors think we are crazy but now they don’t want to treat me because I am not insured. Our thoughts original following these new symptoms and the fact that i feel better during pregnancy were Thyroid disorder. But my doctor is saying that my thyroid levels are normal. When the Epstein Barr test came back positive it was a relief, hoping that it would explain all of my symptoms, but are finding that most of my symptoms don’t make sense. As bad as I want it to be something simple my heart tells me that it is not. After researching Epstein Barr, I have found that it is linked to some cancers such as nasopharyngeal cancer and other diseases. With Epstein Barr being the only thing I can go on or the only test that has some back positive I feel like this is the best place to start.

It is very common to be under diagnosed as having fibromyalga when in fact the main condition is hypermobility syndrome or Ehlers Danlos syndrome. (These are related conditions)I dismissed the throw away diagnosis of ME and fibromyalgia because I had to many symptoms that did not fit. Everything was explained once I was diagnosed with the above conditions.

Have they checker for Epstein Barr? Also you might want to look into any thyroid disorders like Hoshimotos. I pasted my story below. It is frustarting not to know the answer. I firmly beleive that Fibromyalgia is a catch all diagnosis for when the doctors get stumped. I believe my symptoms started around age 8. Over a two year span I was seen by numerous doctors for knee pain (joint pain) and headaches. The only explanation my parents were given was growing pains. At age 11 I was out of school for 5-6 weeks due to monoAll though high school I suffered from chronic fatigue, back pain, and it seemed that I was always sick. Although I have always been extremely smart, during high school I started noticing I was unable to focus on anything and often felt very ditsy. I was treated for depression and frequent UTIs. I don’t recall any other testing. At age 17 I became pregnant with my oldest child on birth control. During pregnancy, I felt somewhat more energized and I was able to stay organized and had drive and energy to live life. Aside from typical pregnancy symptoms I felt somewhat normal. Shortly after giving birth to my son, my symptoms came back tenfold. I started to experience extreme pain in my back and all over weakness and fatigue. After running some basic blood work I was diagnosed with Fibromyalgia and continued to have frequent UTIs. I was given narcotic pain meds and anti depression medication to help with my symptoms but nothing ever helped. This continued for a couple years. I was unable to hold a job due to my daily struggles. My husband at the time was very unsupportive and told me that it was all in my head and that I needed to snap out of it and stop being lazy, which led to divorce. While pregnant with my second child, again I felt much better. Now 8 years after my diagnosis of Fibromyalgia I am taking a turn for the worse. My body is failing me more every day and I still have little answered. My ANA levels were abnormal in 2008 but now they are normal ruling out lupus, my Epstein Barr is positive, and my thyroid levels are normal. Symptoms: FatigueJoint PainHead Aches and migrainesKidney painFrequent UTIs and other infectionsMuscle WeaknessLow blood pressureSleeping 12-17 hours per dayVision issues (delayed focus, twitching sensation)Easily bruisedSinus Pressure and face and jaw painBloody mucus out of my nose dries and is very painfulOccasional rash (small scaly bumps over face and chest)Memory LossBrain FogSlow speech (sometimes even slurred) DizzyBlack out upon standingSensitivity to cold New Symptoms: Pressure and Discomfort on lower left side of my neck with some swellingWorsened headaches that never seem to go awayWorsened joint pain so severe that I have to wrap wrists and ankles with ace bandages for days at a time.Loss of urine. I have actually peed my pants two times this week! And I am 26! I just got a sudden urge to go and didn’t make it in time. I couldn’t control it at all! Yuck! I have been made to feel like I am crazy by my doctors and if it were not for my very supportive husband (married 2 years ago) I don’t know how I could even make it through a day. My husband and I are very frustrated and on top of it all unable to get insurance due to pre existing conditions. So not only do the doctors think we are crazy but now they don’t want to treat me because I am not insured. Our thoughts original following these new symptoms and the fact that i feel better during pregnancy were Thyroid disorder. But my doctor is saying that my thyroid levels are normal. When the Epstein Barr test came back positive it was a relief, hoping that it would explain all of my symptoms, but are finding that most of my symptoms don’t make sense. As bad as I want it to be something simple my heart tells me that it is not. After researching Epstein Barr, I have found that it is linked to some cancers such as nasopharyngeal cancer and other diseases. With Epstein Barr being the only thing I can go on or the only test that has some back positive I feel like this is the best place to start. You have got Chronic fatigue immunity dysfunction syndrome (CFIDS). That is clear from your symptoms and the mono.. EBV reactivation. A quarter of cases of fibromyaliga develop into CFIDS and about 75% of those with CFIDS have fibromyaliga due to it. In your case looking at your history, you've had CFIDS all along but only part of your diagnoses (the fibromyaliga) was picked up. http://wwcoco.com/cfids/bernesx.html is a good list of CFIDS symptoms based on studies. What you need to do is to seek out a CFIDS specialist and gain a full diagnoses.

I definitely have fibro. I have been diagnosed by 3 Rhuematologists. My current dr keeps saying I have additional symptoms that seems to be rhuematological such as those for RA or some for Lupus. He tests and tests (blood workup) and it comes back 'normal'. From my own research I do not believe it is Lupus but what else does Fibro get diagnosed for and what tests distinguish the difference? I think there is something more than Fibro but I do not know what. I do have symptoms that fit RA but the blood work keeps coming back negative. COuld there be multiple false negatives? any info is appreciated. Pity you havent posted ALL your symptoms along with the history of how it started. quite a few different illnesses are more common with fibromyalgia and without more details I cant say what i suggest it would be in your case. Be aware that chronic fatigue immunity dysfunction sydrome has a very strong overlap with fibromyalgia. One quarter of those with fibro end up developing CFIDS... and as 75% of people with CFIDS do have fibro.. may people are diagnosed just with fibro with the CFIDS being missed. I'd have to say that this is the most common mistake when it comes to fibro (another common mistake would be missing Lyme disease and just getting a fibro diagnoses). On CFIDS symptoms http://wwcoco.com/cfids/bernesx.html (note that some of that are more common in fibro too eg headaches, irritable bowel syndrome .. are common with fibro too so one needs to have symptoms that fibro alone dont get for a CFIDS diagnoses eg fluish symptoms.. EBV link .. and there are also many other things which will help to distinguish if one has not just fibro but rather has it as part of CFIDS). CFIDS can cause far more weakness and exhaustion then fibro. Fibro is often helped by exercise.. where as in those with CFIDS, exercise may make all the symptoms worst. It takes someone very familar with the two illnesses to often distinguish!

It is very common to be under diagnosed as having fibromyalga when in fact the main condition is hypermobility syndrome or Ehlers Danlos syndrome. (These are related conditions) I dismissed the throw away diagnosis of ME and fibromyalgia because I had to many symptoms that did not fit. Everything was explained once I was diagnosed with the above conditions. EDS can be an overlapping condition with ME. There seems to be a genetic component to ME as there is with EDS.. so maybe that gene makes one with EDS more susceptable to ME. My daughter i strongly believe has EDS based on her hypermobility..and we have ME running in my family. EDS/ME subgroup. ME is currently being found to have a virus cause.. but with genetics probably playing a part. Good symptom ME list http://wwcoco.com/cfids/bernesx.html

Memory LossBrain FogSlow speech (sometimes even slurred) DizzyBlack out upon standingSensitivity to cold Those symptoms above.. are probably POTS (postural orthostatic tachycardia syndrome). POTS is in 70%+ of those who have CFIDS. or the standing blackouts could too be due to the low BP (low BP is quite normal in CFIDS). Improvement during pregnancy is common with CFIDS and then crashing after that. (the hormones seem to play a big role in CFIDS.. hence why too that it is much more common in females).

Those symptoms above.. are probably POTS (postural orthostatic tachycardia syndrome). POTS is in 70%+ of those who have CFIDS. or the standing blackouts could too be due to the low BP (low BP is quite normal in CFIDS). Improvement during pregnancy is common with CFIDS and then crashing after that. (the hormones seem to play a big role in CFIDS.. hence why too that it is much more common in females). check out my link and see if this applies to anyone in the cfs fibro diagnosis,, http://www.healthbusinessblog.com/?p=1601this link led me to my diagnosis of an ion channelopathy that has both fibro and chronic fatique along with attention deficit and some physical or dysmorphic signs included..if this could apply to you when you visit the blog leave a comment for doctor segal.. he has been tremendously helpful to me and my family,,, katts

Many or most Fibro patients will have some other disease such as Lupus, RA , or other auto-immune disease---My Rheumotologist and a Neuro-muscular specialst told me that for some people their ANA TESTS never show evidence of these diseases and a good doctor then makes a dx according to one's symptoms.