Discussions By Condition: I cannot get a diagnosis.

Fibro? Lupus? Want feedback on my suspicions

Posted In: I cannot get a diagnosis. 17 Replies
  • Posted By: curiouskitty
  • May 11, 2012
  • 03:37 PM

I am sorry to post a laundry list of things, but I have a hard time conveying myself to doctors and, due to lack of insurance and concern from the medical professions at my school's health center, I want to see if anyone out there can confirm this is probably fibromyalgia (which is the diagnosis based on blood tests and the fact I have trigger points (I have more than those listed on the info sites though). The malar makes me think lupus. Is it possible to have lupus and test negative? Tremors, really bad headaches and brainshock sensations make me think possible MS. I just know I want to find answers, be it I give up and deal with possibly having fibromyalgia, or perhaps I finally get a diagnosis that can allow me to treat these things accordingly. I basically can say that I'm overall more sensitive to any sort of stimuli than most of my peers. I had something (which at the time I considered a spiritual awakening) a weird point where I started feeling energy fluxes, started seeing things (colors, static), and my symptoms began to progress and wane (less frequent, more severe). I originally believed I experienced a Kundalini awakening, but now I just think I started getting sicker.


Bad rash/hives (no known cause, migratory - intensly itchy and on my hands/arms mostly) (2004/2005)
Malar Rash (2004) - typical butterfly pattern on face. Blush-like. Permanent.
Folliculitis like rash on 2 separate occasions (surrounding a pregnancy scare) (2004)
It's possible that the prednisone from the hives may have helped this some? (2004)
Trigger points everywhere. Extremely sensitive. (2004/2005)
Extreme fatigue. (2004 to present)
Further: Brain goes to sleep while i'm awake. Almost like narcolepsy at times. Hard to shake the fatigue when active
Burning pain in muscles. (2007 to present)
Headaches (forever)
Restless legs (2005 to present)
IBS/Constipation (since high school)
Hair Loss (gotten really bad during season changes last two years)
Dry skin (always)
Thyroid testing comes back normal (full panel normal last year.)
2 Negative ANA tests? (retest)
1 possible lyme positive (retest)
Brain shocks. Zap sensations in head at random points Since 2006
Full body twitch (since I don't know... present)
Tremors (2010-pres)
Hypoglycemia (since HS)
Anxiety/Depression
Arm/wrist pain
Shoulder tightness (since 2005)
vaginal itching (last 6 months - treated for BV, but not obvious signs. No yeast. BAD ITCHING)
Always tired/never fully rested (since 2004)
Weird rash in 2002 (torso, no pain or itch, never officially diagnosed)
Poor memory/cognition (lose keys in plain view, forget what I'm doing)
Hard to remain focused on tasks (especially when the above is in play - gotten very bad since 2010)
Lower back/hip tired/painful doing household tasks, like washing dishes or cleaning (2011-pres)
Joint pain (especially knees) has increased in last year. Hurts to walk some days.
2 SEVERE burning headaches that have woken me in the night (since 2011) - 8-9 pain scale
2 weird "flu-like" attacks. Fever, chills, PAIN ALL OVER, then fine a few hours later, albeit shellshocked (since 2009)
Weight gain ;) (Fatigue and pain kind of deter my wanting to get too active)
Muscle weakness since 2010. I struggle to open jars and carry things (used to be very strong)
Eyes are light-sensitive
Always can see things (colors, snow, CEV type stuff)
Increased sweating in last few years
Dry mouth
Cyclic eye irritation (around period) redness/pain
Thirsty
Bladder doesn't feel like it fully empties every time
Random diarrhea without obvious cause
gassy all the time (especially bad the last few years)
dizziness
random "room spinning" feeling
lightheaded a lot
TMJ (hurts to chew sometimes, brush teeth (jaws get tired)
tachycardia


Also to note: Some EDS type signs: touch tongue to tip of nose, very flat feet, hyperflexive in several joints (though they are stiff and painful most of the time), stretchy skin in some places. There are lots of other random things that happen, but things seem to be progressively worse. I am not on any medication for the symptoms other than Synthroid for hypothyroidism (had since I was 3/4 years old), and Wellbutrin and Celexa for severe anxiety and moderate depression. Major symptoms typically come in flares, usually in relation to my period or if I'm under a lot of stress. I was given a diagnosis of Fibromyalgia in 2005 when my knees started bothering and I began experiencing fatigue. I already had the butterfly pattern, but ANA was negative at the time. Normal CBC. HIV negative. Normal thyroid panel. I hurt a lot, but I've learned to deal with it. Take Advil if I have a bad headache and that's about it. I think my doctors think I'm making things up, but my medical history can prove otherwise. The main thing that really bothers me is the fatigue and the way my mind is affected (terrible memory, reasoning diminished, tired, attention span diminished). I could hid my own Easter eggs on a bad day. I'm 29 years old and feel like I'm nearing 70. I've been having trouble since I was 21 years old. If this is really fibromyalgia, I'll just give it up and continue living with it. However, due to the progressive nature and the fact I don't necessarily have the same type of pain as fibro patients seem to have (based on what I've read online), I want to rule out any other cause so that I don't get worse to a point of no return.

Thanks

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17 Replies:

  • As I sit here reading your story I am crying. I'm crying because you sound just like me. I too am 29 and your story is almost identical to mine. This is somehow inspiring me to keep fighting. I have been through so much (at such a young age too) until I started questioning my own sanity. The things that you have going on are so so so familiar. I don't have a dx yet either, but I just wanted to let you know that at least 1 person out there can relate. Here are the (similar) symptoms I have: Malar Rash (only once that I actually went to the dr. with. because it was so bad) Trigger points everywhere. Extremely sensitive.Extreme fatigue.I have those moments of zoning out too. Like my brain went on auto pilot Burning pain in muscles, weakness, and fatigued feeling muscles. HeadachesRestless legs (has since spread to a restless body. lol. I laugh now but it is misery. I didn't sleep at all last night because of it)IBS/Constipation (when I went to the dr. for this years ago they ruled out everything including parasites, yet no diagnosis) Hair Loss (only recently)Thyroid testing comes back normal Negative ANA testsFull body twitch Tremors (YOU ARE THE ONLY OTHER PERSON I HAVE SEEN TO DESCRIBE THE PHENOMENON THIS WAY. MY DR. LOOKS AT ME LIKE I AM CRAZY WHEN I DESCRIBE IT TO HER.) Arm/wrist painShoulder tightness Always tired/never fully rested Poor memory/cognition Hard to remain focused on tasks ( This is a real challenge since I am a mother and a college student. )Lower back/hip tired/painful doing household tasks, like washing dishes or cleaning (too much sitting, too much moving, doesn't matter. It still just hurts)I too have flu like attacks. Mine have progressed to lasting all day at times. No viral illness or anything evident.Muscle weakness Eyes are light-sensitive (this is a recent onset for me. last 6 months or so) I now own at least 7 pairs of sunglasses. I make sure I have some within reach at all times.) Bladder ( I have been diagnosed with a bladder disease that accompanies endometriosis) TMJ ( my dentist says I grind my teeth at night. Not surprising since I am usually in pain while trying to sleep) I also have a pretty aggressive case of endometriosis. Which only adds to my discomfort and lower back pain. So you see, it is shocking to me that we have so many symptoms that are so similar yet neither of us can get a dx. I have been going to a neuro for over two years now, I have yet to get any answers. Just symptomatic treatment. I am so frustrated and exhausted. I can't help but believe that there has to be some disease or disorder that carries all these symptoms. I just don't know why it is so hard to get a diagnosis for it. I think it could be lupus but I don't think it explains ALL the symptoms. Since we have so many that are similar (which do not fit lupus) I am at a loss. I sure hope you get a dx soon and hopefully some treatment that helps. For me it is trial and error for the time being. I feel like a human experiment and each symptom is treated as it comes.
    dixiegrl 2 Replies Flag this Response
  • I am sorry to post a laundry list of things, but I have a hard time conveying myself to doctors and, due to lack of insurance and concern from the medical professions at my school's health center, I want to see if anyone out there can confirm this is probably fibromyalgia (which is the diagnosis based on blood tests and the fact I have trigger points (I have more than those listed on the info sites though). The malar makes me think lupus. Is it possible to have lupus and test negative? Tremors, really bad headaches and brainshock sensations make me think possible MS. I just know I want to find answers, be it I give up and deal with possibly having fibromyalgia, or perhaps I finally get a diagnosis that can allow me to treat these things accordingly. I basically can say that I'm overall more sensitive to any sort of stimuli than most of my peers. I had something (which at the time I considered a spiritual awakening) a weird point where I started feeling energy fluxes, started seeing things (colors, static), and my symptoms began to progress and wane (less frequent, more severe). I originally believed I experienced a Kundalini awakening, but now I just think I started getting sicker.Bad rash/hives (no known cause, migratory - intensly itchy and on my hands/arms mostly) (2004/2005)Malar Rash (2004) - typical butterfly pattern on face. Blush-like. Permanent.Folliculitis like rash on 2 separate occasions (surrounding a pregnancy scare) (2004)It's possible that the prednisone from the hives may have helped this some? (2004)Trigger points everywhere. Extremely sensitive. (2004/2005)Extreme fatigue. (2004 to present)Further: Brain goes to sleep while i'm awake. Almost like narcolepsy at times. Hard to shake the fatigue when activeBurning pain in muscles. (2007 to present)Headaches (forever)Restless legs (2005 to present)IBS/Constipation (since high school)Hair Loss (gotten really bad during season changes last two years)Dry skin (always)Thyroid testing comes back normal (full panel normal last year.)2 Negative ANA tests? (retest)1 possible lyme positive (retest)Brain shocks. Zap sensations in head at random points Since 2006Full body twitch (since I don't know... present)Tremors (2010-pres)Hypoglycemia (since HS)Anxiety/DepressionArm/wrist painShoulder tightness (since 2005)vaginal itching (last 6 months - treated for BV, but not obvious signs. No yeast. BAD ITCHING)Always tired/never fully rested (since 2004)Weird rash in 2002 (torso, no pain or itch, never officially diagnosed)Poor memory/cognition (lose keys in plain view, forget what I'm doing)Hard to remain focused on tasks (especially when the above is in play - gotten very bad since 2010)Lower back/hip tired/painful doing household tasks, like washing dishes or cleaning (2011-pres)Joint pain (especially knees) has increased in last year. Hurts to walk some days.2 SEVERE burning headaches that have woken me in the night (since 2011) - 8-9 pain scale2 weird "flu-like" attacks. Fever, chills, PAIN ALL OVER, then fine a few hours later, albeit shellshocked (since 2009)Weight gain ;) (Fatigue and pain kind of deter my wanting to get too active)Muscle weakness since 2010. I struggle to open jars and carry things (used to be very strong)Eyes are light-sensitiveAlways can see things (colors, snow, CEV type stuff)Increased sweating in last few yearsDry mouthCyclic eye irritation (around period) redness/painThirstyBladder doesn't feel like it fully empties every timeRandom diarrhea without obvious causegassy all the time (especially bad the last few years)dizzinessrandom "room spinning" feelinglightheaded a lotTMJ (hurts to chew sometimes, brush teeth (jaws get tired)tachycardia Also to note: Some EDS type signs: touch tongue to tip of nose, very flat feet, hyperflexive in several joints (though they are stiff and painful most of the time), stretchy skin in some places. There are lots of other random things that happen, but things seem to be progressively worse. I am not on any medication for the symptoms other than Synthroid for hypothyroidism (had since I was 3/4 years old), and Wellbutrin and Celexa for severe anxiety and moderate depression. Major symptoms typically come in flares, usually in relation to my period or if I'm under a lot of stress. I was given a diagnosis of Fibromyalgia in 2005 when my knees started bothering and I began experiencing fatigue. I already had the butterfly pattern, but ANA was negative at the time. Normal CBC. HIV negative. Normal thyroid panel. I hurt a lot, but I've learned to deal with it. Take Advil if I have a bad headache and that's about it. I think my doctors think I'm making things up, but my medical history can prove otherwise. The main thing that really bothers me is the fatigue and the way my mind is affected (terrible memory, reasoning diminished, tired, attention span diminished). I could hid my own Easter eggs on a bad day. I'm 29 years old and feel like I'm nearing 70. I've been having trouble since I was 21 years old. If this is really fibromyalgia, I'll just give it up and continue living with it. However, due to the progressive nature and the fact I don't necessarily have the same type of pain as fibro patients seem to have (based on what I've read online), I want to rule out any other cause so that I don't get worse to a point of no return. ThanksHoly f*cking ****! you and me are so similar, i am 22 and i get nearly all of these symptoms. My mum has been battling doctors for 16 years and she gets this as well! The doctors discovered ANA in my blood in 2010 and do believe i have Lupus. I have also suspected i have fibromyalgia as well. The doctors also suggested raynaud's syndrome. I can talk to my mum and see if she'd like to email you as she has suffered with this for much longer? Its up to you? I would say lupus and fibro but im not a doctor, im basing this on what i get and how similar it is to your situation.I just find this odd, just how similar it is,will post to my mum tonight, im sure she can reply or pm you about this :) ps. ive starred what i get below:Bad rash/hives (no known cause, migratory - intensly itchy and on my hands/arms mostly) (2004/2005)Malar Rash (2004) - typical butterfly pattern on face. Blush-like. Permanent.**********Folliculitis like rash on 2 separate occasions (surrounding a pregnancy scare) (2004)It's possible that the prednisone from the hives may have helped this some? (2004)Trigger points everywhere. Extremely sensitive. (2004/2005) *****************Extreme fatigue. (2004 to present) *********Further: Brain goes to sleep while i'm awake. Almost like narcolepsy at times. Hard to shake the fatigue when activeBurning pain in muscles. (2007 to present) **************** get this alot, its ******* annoyingHeadaches (forever)Restless legs (2005 to present) ******IBS/Constipation (since high school) ******Hair Loss (gotten really bad during season changes last two years)******Dry skin (always)******Thyroid testing comes back normal (full panel normal last year.)*****2 Negative ANA tests? (retest) *** POSITIVE FOR ME1 possible lyme positive (retest)Brain shocks. Zap sensations in head at random points Since 2006 ****Full body twitch (since I don't know... present)Tremors (2010-pres)Hypoglycemia (since HS) *****Anxiety/Depression ****Arm/wrist pain ******Shoulder tightness (since 2005)vaginal itching (last 6 months - treated for BV, but not obvious signs. No yeast. BAD ITCHING)Always tired/never fully rested (since 2004) *****Weird rash in 2002 (torso, no pain or itch, never officially diagnosed) *** i have a rash on my chest that wont go awayPoor memory/cognition (lose keys in plain view, forget what I'm doing)Hard to remain focused on tasks (especially when the above is in play - gotten very bad since 2010)Lower back/hip tired/painful doing household tasks, like washing dishes or cleaning (2011-pres) ****Joint pain (especially knees) has increased in last year. Hurts to walk some days.****2 SEVERE burning headaches that have woken me in the night (since 2011) - 8-9 pain scale2 weird "flu-like" attacks. Fever, chills, PAIN ALL OVER, then fine a few hours later, albeit shellshocked (since 2009)Weight gain http://f1.hgimg.com/http://f1.hgimg.com/images/smilies/wink.png (Fatigue and pain kind of deter my wanting to get too active) *****Muscle weakness since 2010. I struggle to open jars and carry things (used to be very strong) *****Eyes are light-sensitive **** VERY FOR ME, HATE THE SUN!Always can see things (colors, snow, CEV type stuff)Increased sweating in last few years **********Dry mouth **********Cyclic eye irritation (around period) redness/painThirstyBladder doesn't feel like it fully empties every time ********Random diarrhea without obvious cause **********gassy all the time (especially bad the last few years) ***********dizzinessrandom "room spinning" feelinglightheaded a lot *************TMJ (hurts to chew sometimes, brush teeth (jaws get tired) *********tachycardia ********** AFTER EATING.Do you get excruciating pain after slightly bumping your upper arms or shoulders? the pain is terrible and lasts for a few minutes???
    emma90 1 Replies Flag this Response
  • As I sit here reading your story I am crying. I'm crying because you sound just like me. I too am 29 and your story is almost identical to mine. This is somehow inspiring me to keep fighting. I have been through so much (at such a young age too) until I started questioning my own sanity. The things that you have going on are so so so familiar. I don't have a dx yet either, but I just wanted to let you know that at least 1 person out there can relate. Here are the (similar) symptoms I have: Malar Rash (only once that I actually went to the dr. with. because it was so bad) Trigger points everywhere. Extremely sensitive.Extreme fatigue.I have those moments of zoning out too. Like my brain went on auto pilot Burning pain in muscles, weakness, and fatigued feeling muscles. HeadachesRestless legs (has since spread to a restless body. lol. I laugh now but it is misery. I didn't sleep at all last night because of it)IBS/Constipation (when I went to the dr. for this years ago they ruled out everything including parasites, yet no diagnosis) Hair Loss (only recently)Thyroid testing comes back normal Negative ANA testsFull body twitch Tremors (YOU ARE THE ONLY OTHER PERSON I HAVE SEEN TO DESCRIBE THE PHENOMENON THIS WAY. MY DR. LOOKS AT ME LIKE I AM CRAZY WHEN I DESCRIBE IT TO HER.) Arm/wrist painShoulder tightness Always tired/never fully rested Poor memory/cognition Hard to remain focused on tasks ( This is a real challenge since I am a mother and a college student. )Lower back/hip tired/painful doing household tasks, like washing dishes or cleaning (too much sitting, too much moving, doesn't matter. It still just hurts)I too have flu like attacks. Mine have progressed to lasting all day at times. No viral illness or anything evident.Muscle weakness Eyes are light-sensitive (this is a recent onset for me. last 6 months or so) I now own at least 7 pairs of sunglasses. I make sure I have some within reach at all times.) Bladder ( I have been diagnosed with a bladder disease that accompanies endometriosis) TMJ ( my dentist says I grind my teeth at night. Not surprising since I am usually in pain while trying to sleep) I also have a pretty aggressive case of endometriosis. Which only adds to my discomfort and lower back pain. So you see, it is shocking to me that we have so many symptoms that are so similar yet neither of us can get a dx. I have been going to a neuro for over two years now, I have yet to get any answers. Just symptomatic treatment. I am so frustrated and exhausted. I can't help but believe that there has to be some disease or disorder that carries all these symptoms. I just don't know why it is so hard to get a diagnosis for it. I think it could be lupus but I don't think it explains ALL the symptoms. Since we have so many that are similar (which do not fit lupus) I am at a loss. I sure hope you get a dx soon and hopefully some treatment that helps. For me it is trial and error for the time being. I feel like a human experiment and each symptom is treated as it comes.I was sent your link by my daughter who came across this. We have both had similar symptoms. I have had mine for many years and never been able to get a diagnosis that fitted. It was suggested to me that it could be neurosymptoms http://www.neurosymptoms.org/. However in the first instance I would be looking at prediabetes especially for some of the symptoms that you are mentioning.
    Lilybee 2 Replies Flag this Response
  • Yea, bumping into anything hurts like a mutha. This is especially convenient as I'm very clumsy. I didn't use to be so bad, but it's awful now. Feel uneasy going down stairs sometimes, like I'm going to fall face-first. Haven't had that happen, but I get that sensation in my head, which is off-putting to say the least. I had a "Health" bloodtest last week and everything came back normal on their findings... didn't get the exact numbers, except for the TSH, which was a 2.8. Based on what everyone is saying is the new range, I'm running a little high. My tremors were very scarce until I had my meds upped a couple of years ago. However, I was also under a severe amount of stress then, so not sure if hyper or not at the time. I just know I have them a lot now, little muscle twitches throughout my body (not sure is these are fasciculations or not. Just annoying when you're trying to relax. Tremors are annoying when you need a stead hand for things, like art or anything that requires precision. The last ANA I had was in 2009, I believe, and it came back normal. I had a Lyme test that was kind of positive. I think the doctor said 2/3 antibodies, but I never really followed up with it. He gave me a month's 'script for doxycyclin, but if it could be Lyme, I've had it for so long that I imagine I'd need the heavy hitting stuff. I had the diabetes stuff checked with my health test last week and my glucose is fine. I'm not morbidly obese, so I'm sure that helps. Family has a long line of diabetes (all grandparents) so it's certainly in my future. I just want to compare and contrast things and see if I can finally get an amenable doctor that will work with my suspicions rather than question me. Most of them just don't seem to have the experience with neurological stuff, which I don't expect them to... would just be nice if doctors would try to exhaust more effort into finding a possible diagnosis before throwing out fibromyalgia as the results. It's an easy diagnosis, but it's also a crappy one, in that where do you go from there? At least some of the more serious stuff has possible leads for better symptom relief that doesn't involve a large dose of something physically addicting. Thanks for the feedback though and I'll be sure to express my concerns with a proper physician once I have my insurance restored.
    curiouskitty 1 Replies Flag this Response
  • I thought that when I was diagnosed as having diabetes I would feel better but that isn't the case. I have spent sixteen years going back and forth to doctors and they don't seem to know what it is. I am given one diagnosis. then another by another doctor. In the beginning I had a lot of emotional stuff going on and at the same time I wasn't very well physically. The problem is is that it seems it is easier to blame it on your mental health..
    Lilybee 2 Replies Flag this Response
  • I just wanted to respond to the writers that have very similar symptoms briefly. I had very strange symptoms, the worst being extreme fatigue...to the point where I would fall asleep sitting up. My husband feared I would fall over say when sitting at the table. Now I have other dx's and won't get into those right now. The thing is my primary doc referred me to a Rheumatologist because of the achy joints,ect... The Rheumy did many many tests and at first my ANA came back negative too. But after months of testing he finally told me I have Lupus, the SLE form. I get a rash occasionally but only on one side of my face, not the typical "butterfly" rash. I just wanted to tell you this becuz Lupus is very tricky to dx and the symptoms can vary.Anyway, I don't want to go on and on, but I just wanted to add this and I don't recall(brain fog):confused: what type of doctors you have seen. If you haven't seen a Rheumy, it certainly sounds like you might benefit from making an appt. Couldn't hurt. If you have already seen one, maybe see another...until you find some answers.... Good luck to you both.
    Angel312 2 Replies Flag this Response
  • I am sorry to post a laundry list of things, but I have a hard time conveying myself to doctors and, due to lack of insurance and concern from the medical professions at my school's health center, I want to see if anyone out there can confirm this is probably fibromyalgia (which is the diagnosis based on blood tests and the fact I have trigger points (I have more than those listed on the info sites though). The malar makes me think lupus. Is it possible to have lupus and test negative? Tremors, really bad headaches and brainshock sensations make me think possible MS. I just know I want to find answers, be it I give up and deal with possibly having fibromyalgia, or perhaps I finally get a diagnosis that can allow me to treat these things accordingly. I basically can say that I'm overall more sensitive to any sort of stimuli than most of my peers. I had something (which at the time I considered a spiritual awakening) a weird point where I started feeling energy fluxes, started seeing things (colors, static), and my symptoms began to progress and wane (less frequent, more severe). I originally believed I experienced a Kundalini awakening, but now I just think I started getting sicker.Bad rash/hives (no known cause, migratory - intensly itchy and on my hands/arms mostly) (2004/2005)Malar Rash (2004) - typical butterfly pattern on face. Blush-like. Permanent.Folliculitis like rash on 2 separate occasions (surrounding a pregnancy scare) (2004)It's possible that the prednisone from the hives may have helped this some? (2004)Trigger points everywhere. Extremely sensitive. (2004/2005)Extreme fatigue. (2004 to present)Further: Brain goes to sleep while i'm awake. Almost like narcolepsy at times. Hard to shake the fatigue when activeBurning pain in muscles. (2007 to present)Headaches (forever)Restless legs (2005 to present)IBS/Constipation (since high school)Hair Loss (gotten really bad during season changes last two years)Dry skin (always)Thyroid testing comes back normal (full panel normal last year.)2 Negative ANA tests? (retest)1 possible lyme positive (retest)Brain shocks. Zap sensations in head at random points Since 2006Full body twitch (since I don't know... present)Tremors (2010-pres)Hypoglycemia (since HS)Anxiety/DepressionArm/wrist painShoulder tightness (since 2005)vaginal itching (last 6 months - treated for BV, but not obvious signs. No yeast. BAD ITCHING)Always tired/never fully rested (since 2004)Weird rash in 2002 (torso, no pain or itch, never officially diagnosed)Poor memory/cognition (lose keys in plain view, forget what I'm doing)Hard to remain focused on tasks (especially when the above is in play - gotten very bad since 2010)Lower back/hip tired/painful doing household tasks, like washing dishes or cleaning (2011-pres)Joint pain (especially knees) has increased in last year. Hurts to walk some days.2 SEVERE burning headaches that have woken me in the night (since 2011) - 8-9 pain scale2 weird "flu-like" attacks. Fever, chills, PAIN ALL OVER, then fine a few hours later, albeit shellshocked (since 2009)Weight gain ;) (Fatigue and pain kind of deter my wanting to get too active)Muscle weakness since 2010. I struggle to open jars and carry things (used to be very strong)Eyes are light-sensitiveAlways can see things (colors, snow, CEV type stuff)Increased sweating in last few yearsDry mouthCyclic eye irritation (around period) redness/painThirstyBladder doesn't feel like it fully empties every timeRandom diarrhea without obvious causegassy all the time (especially bad the last few years)dizzinessrandom "room spinning" feelinglightheaded a lotTMJ (hurts to chew sometimes, brush teeth (jaws get tired)tachycardia Also to note: Some EDS type signs: touch tongue to tip of nose, very flat feet, hyperflexive in several joints (though they are stiff and painful most of the time), stretchy skin in some places. There are lots of other random things that happen, but things seem to be progressively worse. I am not on any medication for the symptoms other than Synthroid for hypothyroidism (had since I was 3/4 years old), and Wellbutrin and Celexa for severe anxiety and moderate depression. Major symptoms typically come in flares, usually in relation to my period or if I'm under a lot of stress. I was given a diagnosis of Fibromyalgia in 2005 when my knees started bothering and I began experiencing fatigue. I already had the butterfly pattern, but ANA was negative at the time. Normal CBC. HIV negative. Normal thyroid panel. I hurt a lot, but I've learned to deal with it. Take Advil if I have a bad headache and that's about it. I think my doctors think I'm making things up, but my medical history can prove otherwise. The main thing that really bothers me is the fatigue and the way my mind is affected (terrible memory, reasoning diminished, tired, attention span diminished). I could hid my own Easter eggs on a bad day. I'm 29 years old and feel like I'm nearing 70. I've been having trouble since I was 21 years old. If this is really fibromyalgia, I'll just give it up and continue living with it. However, due to the progressive nature and the fact I don't necessarily have the same type of pain as fibro patients seem to have (based on what I've read online), I want to rule out any other cause so that I don't get worse to a point of no return. ThanksJust a quick reply to the weight gain. Prednisone will cause extreme weight gain...
    Angel312 2 Replies Flag this Response
  • Hello I am having very similar issues as well and struggling with getting a diagnosis. I am 30 year old woman and a mother and have had odd symptoms since my late teens. They seem to get worse during times of stress and have changed slightly throughout the years but all in all have gotten more severe and life disrupting. I am recently laid off but when I was working I was working 60+ hours a week and with a 5 year old didn't have time to go to the Dr. regardless of how much pain I was in. So the first thing I did was make a long appointment with my PC so I could finally address some of these issues. They have gotten substantially worse since I had my son but I feel like a hypochondriac going to the Dr. with 10 complaints and no obvious problems. Over the past 3 months I have been to my PC, OB, Derm., Rume and a vascular specialist and no one has given me any answers some ideas but there have been no positive test results to back it up. 3 of these Drs. have mentioned Lupus, RA and Hashimotos but my tests game back within normal range. I am so frustrated it seems like none of the Drs. will even make a probable diagnosis and treat my symptoms because they are all afraid of making the wrong one and many treatments that help with one condition can make another worse so no one wants to treat anything they just refer me to the next specialist. Well i am out of specialists now and I don't know what to do. Symptoms with approximate datesMigraines since I was 13 a few times a month now a few times a week, headaches dailyJoint pain especially knees and back and hands. Knees since 14, back since 22, and hands since 22Swelling in legs and feet over past year and a half with severe discoloration and now varicose veins going from my ankles to my hips- Vascular specialist said I have leaky valves in my legs most likely inherited although not present in mother and father or grandparents? Hair loss over last 8 months becoming very noticeable Derm said could be from vitamin deficiencies iron, vitamin D and B12 started taking prescription strength vitamins 6 months ago with no improvement. Itchy scalp just dryness. Malar type rash Rume said didn't look like Lupus rash maybe rosacea, derm said it looked like malar rash but negative ANA made her say since ANA was negative must be rosacea but unwilling to treat me with antibiotic until the "arthritis is resolved" been using metro cream for rosacea it has no effect redness seems to come and go not progressively get worse like rosacea.Insomnia due to severe carpal tunnel pain at night since I was 22Hand weakness throughout day since 24Morning stiffness for 3+ hours cant bend over or stand out of sitting without shocking pain until 800-1200 mg of advil kicks inSevere stomach pain that would last for a few hours or a couple days had surgery 4 years ago for endometriosis pain is now goneConstipation and diarrhea and gas seemingly randomDry skin and eyes veins in eyes sometime enlarge and gives the sensation of a hair in my eye. I am also very light sensitive if its at all sunny I have to wear sunglasses or I will get a migraine.Cold sensitivity I used to run hot never turned on the heat wore a short sleeved short in winter etc. now if it is 50 degrees or colder out my hands and feet start numbing within 5 min of exposure and my breasts start aching this is all the time now but started randomly in my early 20s. The Drs. look at me like I am crazy when I tell them about my breast pain it starts as an aching when I start getting cold then I get stabbing pains after a few minutes it progressively gets worse the longer I am cold until I am in tears and running inside. It doesn't matter how many layers of clothes I am wearing it still happens when I start to warm up the pain increases kinda like warming numb hand only in my breasts it is the worst pain I have ever experienced and remember I have a child. When I am cold I get a lace like rash all over body it is my small veins I guess they turn reddish and become noticeable. My periods have been very irregular since my late teens sometimes nothing for 1-2 years. sometimes light sometimes heavy. I have had 2miscarriages and one healthy baby boy but have not been able to conceive again. I have random feelings of a bug crawling over my skin in different areas like as if an ant just ran over my toe this is recent over the last yearI have noticed brain fog like I cant remember what I was saying or a word and cant even describe what i was talking about. I also notice I zone out and even start falling asleep while looking things up on the computer no matter how interested i am or when I play video games with my son I fall asleep a lot.I have had depression and anxiety since I was a young child but have been maintaining for a long time with medicationI am overweight but not obese and have been working out and eating healthier for 9 months I lost 35lbs but have not had any improvement with joint pain, muscle aches, swelling or morning stiffness in fact I think my knees are worse than ever. When i stand up I feel like my knee caps are going to pop off. I have had all the tests for arthritis including ex-rays of my hands and hips and they came back normal although my Rume thought I may still be developing arthritis and to come back if pain persists in specific jointsI have had a negative ANA negative Sjögren'snegative SclerodermaTSH was 3.8 asked Rume to run T3 and T4 after reading up on thyroid she said thyroid was within normal range no need. I will ask my PC to run them as I have seen that is out of the new range. So I think that covers them but when I go through my symptoms the only ones the Drs seem to listen to are the hair loss, vascular issues in my legs, facial rash and joints the rest they seem to discount right away. I am hoping someone has answers or gets them soon its making me crazy. I have read countless forums and articles online and used the symptom checks and the only things that come up are ill fitting extremely rare disorders. Or SLE and hashimotos possibly both combined. I feel like a whiner and I am able to function through life but I want answers and I want to start treating my symptoms at least I am scared of what will happen in the future. I also want to get back to skiing and softball ASAP. Thanks for posting the thread I to feel less alone and hopeless.
    kadensmom 6 Replies Flag this Response
  • Looks to me like you have dermatomyotosis . I had a muscle biopsy to prove my illness . You can see info on it at the MUSCULAR DYSTROPHY WEB PAGE Rare disease can be caused by a virus you caught years ago . or certain medications you;ve taken . Some depression meds can cause it . The rash can vary greatly between cases . I have big red spots around knees and joints and non on my fingers Lots of info coming in slowly . Emory University in Atlanta has some answers Don't give up
    answermethis 2 Replies Flag this Response
  • Good day,Reading your forum message, your story sounds classic for a lady with anxiety, depression, and fibromyalgia. All of your symptoms (IBS, fatigue, trigger points, anxiety, headaches, concentration difficulties etc) are pathognonomic for this cluster of disorders (depression, fibro...).You may continue to search for a disease (i.e. lupus which you do not have) to explain your symptoms, but this will likely only increase your "dys-ease". At the end of the day, what would you do differently for treatment from what you are currently doing? Rest, moderate exercise, CBT, decreasing focusing on symptoms would be beneficial. Most of this is cognitive, and unfortunately people with depression and fibromyalgia suffer. I hope you can focus on living well, and minimizing the illness experience.Take care,Chris
    Anonymous 42789 Replies Flag this Response
  • I had all those symptoms and many more. In my case it turned out to be Lyme disease and seven co-infections. I've been disabled for over four years due to a delayed diagnoses. Please remember if it is Lyme, prednisone is the worst thing. It makes the infection spread fasted because it suppresses the immune system. Lyme is notoriously difficult to test for. Perhaps you can find a Lyme Literate MD and get tested. I was first diagnosed by a cardiologist and he sent me to a Lyme specialist to be tested and then treated.
    Anonymous 42789 Replies Flag this Response
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  • Thank you all for your suggestions and ideas. I will look into the Lyme and the vascular/ muscular diseases. Lyme is something that matches many of my symptoms as they vary a lot. When you said you had these symptoms and more I am curious if you had the cold intolerance and breast pain in particular as that seems to be a less common issue? I should have mentioned before that my depression and anxiety did cause symptoms when I was a teenager prior to medication. Such as muscle pains and weight gain and fatigue. With counseling and medication I have not had many flare ups Inoccent know the signs of depression and anxiety and can recognize when treatment is no longer effective. My Dr. Checked me for FM and is fairly certain that I don't have it. Since my original post I found out I do have arthritis in my knees which are also swelling consistently. I started physical therapy for my hands and my knees but so far nothing has improved it will take a while. I am going to have cortisone shots in a couple weeks for my knees. I may have anther vein study done to rule out vasculitis as I already have the vein issues in my legs it may be that I have more extensive vein issues which would explain most of my symptoms. There are many kinds of vasculitis and the suggestion of dermatomyotosis could be it as it appears to be in the same family and also causes many symptoms. I wonder if I have more than 1 autoimmune disease going on that are giving me different symptoms making it difficult to diagnose. Of course then there is the problem of some of my syptoms could just be normal or at least unrelated. Its just frustrating it seems like once my Drs. Rule out the obvious conditions they put easy labels on some of the symptoms and tell you to come back in a few months if the persist. It wasn't until I explained that my knees feel worse after loosing weight and exercising that my PC exrayed my knees and found out they were in bad shape for my age. So I am finding I have to basically bring them the diagnosis then they test for it ? OK just venting now. My hair is getting thinner still and my vitamin levels are still low even with very high doses of vitamin D, iron. I also wonder if it is a thyroid issue my TSH levels tested at 4 last time they were 3.8 but again the Dr.. Said that's normal and we could retest in a few months as they fluctuate. However the 4.0 is in the high range right? How high does it have to be to be considered hypothyroidism? If anyone else has suggestions or similar symptoms I am all ears I am hoping to get some answers before I start back to work next month. Thank you again for your help and concern.Tricia
    kadensmom 6 Replies Flag this Response
  • fibromyalgia doesn't exist, getting a diagnosis is the same as the doctor calling you a hypochondriac.... look at the medication the prescribe for it... all it is is anti depressants, a doctor asking you if you think you have fibromyalgia is just a way to test how gullible you are... it's for when you keep telling someone you are sick but theirs either nothing wrong or they don't know whats wrong. so it's not thatlupus it could be especially if you have the butterfly rash, the problem with lupus is that it's incredibly hard to test for... in fact their are no tests that you can take that say 100% you either have or don't have lupus. how it is diagnosed is by taking a combination of blood and skin tests and if the majority of them come out saying you have lupus than you are diagnosed. if you haven't been already get a thyroid test, that is one of the easiest ways to find out if lupus is a possibility.
    Anonymous 42789 Replies Flag this Response
  • Like many of you, I too have my own wacky set of unexplainable symptoms, many similar to the ones you have listed. As you know, it's often a long, painful road to getting a diagnosis. Turns out there are many, many people going through the same thing. There is a website I wish I had come across earlier in my journey to find out what was wrong. It's a forum called LymeNet.org. It was like a light bulb finally went off. Hundreds of people all talking about their similar symptoms, treatments, doctor visits, what works, what doesn't, how to connect the dots, etc. Great info is available.Take a look, it might help.Good luck to all of you.
    Anonymous 2 Replies Flag this Response
  • Thank you again for your feedback. I honestly believe its my thyroid and very possibly lupus. They just fit and often go together but I also dont know how persistent to be? My PC seems concerned and seems to be taking my complaints fairly seriously but seems hesitant to work on the diagnosis herself I go to a very large clinic with several locations and every specialist on staff so she constantly wants to refer me to someone else. The specialists take a very long time to get into and seem to look for a couple very common signs and only half listen to what Im saying. They run labs and look over the results and have a nurse call me to tell me the Dr. Says everything is normal and come back if symptoms persist. Im wondering if large clinics just operate this way or if this is just standard procedure everywhere you go? I to have noticed many people are dealing with this type of situation and the average diagnosis period of 7 years for many diseases seems insane to me especially if the patient is following advice and being persistent and reporting everything. I do have insurance so it seems silly to me that they don't recheck labs and other tests if there is a possibility of them being incorrect or results varying. I also don't want to be diagnosed with CFS or FM just so I will leave them alone. I had missed a couple of symptoms before that may make it easier to identify for someone I run a low body temp its always 96-97 degrees it almost never reaches 98. I get a falling asleep feeling in my face a lot and it starts to feel numb and tingles but doesn't hurt it lasts for 1-3 days I thought it was related to iron levels but now I don't think so as my iron levels are much higher but its still happening. I also have some odd bladder issues like feeling like I have to go right after I went and having to go repeatedly before bed so I don't wake up several times at night. Again I thought this was explained already and happened from having a baby but apperantly I was wrong. I don't have an infection and this has been ongoing since I was pregnant. I also have very lumpy breasts fibrostic I believe its called. Thanks again for any tips or pointers you may have.
    kadensmom 6 Replies Flag this Response
  • fibromyalgia doesn't exist, getting a diagnosis is the same as the doctor calling you a hypochondriac.... look at the medication the prescribe for it... all it is is anti depressants, a doctor asking you if you think you have fibromyalgia is just a way to test how gullible you are... it's for when you keep telling someone you are sick but theirs either nothing wrong or they don't know whats wrong. so it's not thatlupus it could be especially if you have the butterfly rash, the problem with lupus is that it's incredibly hard to test for... in fact their are no tests that you can take that say 100% you either have or don't have lupus. how it is diagnosed is by taking a combination of blood and skin tests and if the majority of them come out saying you have lupus than you are diagnosed. if you haven't been already get a thyroid test, that is one of the easiest ways to find out if lupus is a possibility.That is Not until You get Fibro, then you would believe in the illness! Fibro is very real. Both Fibro and Lupus need to be dx by Rhemuatologist not a just MD. Both are considered to Rhem Illness and listed as such on National Rhem Websities. Only one percent of patients have malar rash, that urban myth really needs to be corrected, so more people can be dx. Also, ANA can be neg and still have Immunology postivite. Be informed and go to National Website for that Illness that you think you might have, that will give you more proper information.Even if you feel like a Hypochondriac, if you're sick you are sick.Stay Positive
    as3692 2 Replies
    • January 27, 2013
    • 03:50 AM
    • 0
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  • Maybe u can ask them to check for SJORGENS Disease it has muscle
    and joint pain and u r always thirsty. I also have fibromyalsia and I was diagnosed by a very reputable doctor. She is on The Medical Board øf Directors. I Also have RA, bursitis, and osteprosis. I al treated well by My doctors and they keep a Close eye on on me. I Also have mental issues but all my pain came first. I am not trying to get sympathy but I do want to say that although i am being treated i am in pain every day.
    Anonymous 0 Replies
    • September 24, 2014
    • 05:48 PM
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