lynn41
04-13-2008, 07:45 PM
After 17 months of health issues, and a weakly positive ANA with speckled pattern, my GP said she thought my diagnosis was Lupus. She sent me to a rheumatologist that said that lab test meant nothing to him, that I had fibromyalgia and then he dismissed me with no f/up. He said nothing over the counter or from a health store is going to help and offered nothing for this living hell my life has become.
So, I'm turning to others to get some guidance - please!
Is a positive ANA common with fibromyalgia?
Who treats you for the symptoms of fibromylgia?
Do you go to a rheumatologist or a GP?
HOW is this treated? I've read alot of information about it, but want feedback from people living with it as to what works for you.
How do you manage this and work when you have an employer who doesn't recognize fibromyalgia as a real health problem?
I have so many questions, but I'll just stop there for now. Thanks for any responses!
So, I'm turning to others to get some guidance - please!
Is a positive ANA common with fibromyalgia?
Who treats you for the symptoms of fibromylgia?
Do you go to a rheumatologist or a GP?
HOW is this treated? I've read alot of information about it, but want feedback from people living with it as to what works for you.
How do you manage this and work when you have an employer who doesn't recognize fibromyalgia as a real health problem?
I have so many questions, but I'll just stop there for now. Thanks for any responses!
Sponsor
ctheri
04-13-2008, 08:28 PM
My mom has Lupus, and the ANA test (being positive) is Lupus.
A lot of symptoms are common between the two... and a lot of people with one have the other (from what I've read).
I'd go to another Doctor... there IS treatment for Lupus, there IS treatment for Fibro.... ! A doctor who says otherwise is whack!
Who treats me? *I* do.. I lost my faith in Doctors along the wild journey for a diagnoses... However, I'm sure some of the others will tell you a better option. :D My GP has said I'm managing my Fibro really well (while I'm bawling my eyes out because my son is turning 6 and I can't remember any of him being a baby...)
I treat my Fibro with diet (I've learned what foods trigger it and avoid those foods)... and natural supplments... as well as exercise and positive thinking. It doesn't always work and sometimes I have to take a pain med. that I hold off for my really bad days (doctor prescribed).
Good luck and be persistent in finding an answer! Doctors don't always know everything.
A lot of symptoms are common between the two... and a lot of people with one have the other (from what I've read).
I'd go to another Doctor... there IS treatment for Lupus, there IS treatment for Fibro.... ! A doctor who says otherwise is whack!
Who treats me? *I* do.. I lost my faith in Doctors along the wild journey for a diagnoses... However, I'm sure some of the others will tell you a better option. :D My GP has said I'm managing my Fibro really well (while I'm bawling my eyes out because my son is turning 6 and I can't remember any of him being a baby...)
I treat my Fibro with diet (I've learned what foods trigger it and avoid those foods)... and natural supplments... as well as exercise and positive thinking. It doesn't always work and sometimes I have to take a pain med. that I hold off for my really bad days (doctor prescribed).
Good luck and be persistent in finding an answer! Doctors don't always know everything.
Glojer
04-13-2008, 10:15 PM
Ok a difference in information here. I have had a positive ANA that was high titers for lupus It was the homogeneous pattern, the double stranded and single stranded DNA. I also had speckled pattern positive for SLE, MCTD, Scleroderma, Sjorgens. The ANA test continues on with more of the antigens etc. That said.....I don't have lupus. I do have a condition called Connective Tissue Disease and Myofascial Pain. My Rheumatologist says I almost have lupus but I haven't crossed the line and at this point he doesn't think I will. Good news for me and my health insurance. I have seen more than one Rheumatologist and both told me the same thing. You have to have more than just a positive ANA to be diagnosed with lupus. My ANA by the way has gone to normal with treatment for my fibro and with treatment for my thyroid problems. Which one rheumy speculated caused my positive ANA count anyway. For more info on lupus check the lupus board sticky at the top. It has symptoms and some good info.
As for the so called doctor you saw, chalk him up as an ignorant JERK! He may have finished medical school and has a license to practice medicine but he is not a doctor. He could have explained to you reasons why you have a positive ANA. I have been told it could be genetic, in other words if you have or had a family member with an autoimmune problem you could possible test positive but not have the disease. For instance, my grandmother had and died from Scleroderma so I have some autoimmune issues and test positive for that one and others. I don't however have them, not yet anyway and I'm hoping I never do. You could have an inflammatory condition with your joint or connective tissue, I'm sorry I'm drawing a blank on some of the others.
Don't let that jerk get you off track. Find another doctor, you don't have to be treated by a rheumatologist. A lot of people are treated by their PCP, I am. She is a osteopath and I like her very much. There are lots of medications out there that can help.....geez hasn't the jerk seen the lyrica commercials. And don't tell me the drug reps haven't been beating down his door and offering him lots of goodies to prescribe lyrica for his patients.
It could be a long journey to find the right meds and vitamin and diet combinations. Ctheri has the right idea with diet and supplements and exercise. Exercise is a very big thing and of course she hit it right on the head with Positive Thinking. Don't give up, advocate for yourself and get the best health care you can. Doctors aren't the know all to be all, they work for you if you don't like them fire them and move on to another until you find one that you can communicate with. There is a very good article in the Fibromyalgia Aware magazine from the NFA about communication between the doctor and patient.
Sorry I went on and on, I hope this helps.
Glojer
As for the so called doctor you saw, chalk him up as an ignorant JERK! He may have finished medical school and has a license to practice medicine but he is not a doctor. He could have explained to you reasons why you have a positive ANA. I have been told it could be genetic, in other words if you have or had a family member with an autoimmune problem you could possible test positive but not have the disease. For instance, my grandmother had and died from Scleroderma so I have some autoimmune issues and test positive for that one and others. I don't however have them, not yet anyway and I'm hoping I never do. You could have an inflammatory condition with your joint or connective tissue, I'm sorry I'm drawing a blank on some of the others.
Don't let that jerk get you off track. Find another doctor, you don't have to be treated by a rheumatologist. A lot of people are treated by their PCP, I am. She is a osteopath and I like her very much. There are lots of medications out there that can help.....geez hasn't the jerk seen the lyrica commercials. And don't tell me the drug reps haven't been beating down his door and offering him lots of goodies to prescribe lyrica for his patients.
It could be a long journey to find the right meds and vitamin and diet combinations. Ctheri has the right idea with diet and supplements and exercise. Exercise is a very big thing and of course she hit it right on the head with Positive Thinking. Don't give up, advocate for yourself and get the best health care you can. Doctors aren't the know all to be all, they work for you if you don't like them fire them and move on to another until you find one that you can communicate with. There is a very good article in the Fibromyalgia Aware magazine from the NFA about communication between the doctor and patient.
Sorry I went on and on, I hope this helps.
Glojer
bluelakelady
04-14-2008, 11:13 AM
i also have the same as glojer. and i was told to behave like i have lupus. i have cmp as well. there are many doctors to choose from. keep searching. and don't allow yourself to worry. it feeds fibro and fibro loves to turn that worry into pain.
peace and welcome,
bluelakelady
peace and welcome,
bluelakelady
lynn41
04-14-2008, 06:22 PM
Thank you ALL for your replies. Even though I've been battling these symptoms for 17 months, I'm new to all these issues. This is so difficult - trying to fight something that you can't see looking at me from the outside.
I never knew how inconsiderate people could be until now. Somehow, I've got to get tough and deal with these people in my life who don't understand these health issues and are dismissive. I just don't understand why they don't even try to understand!
I never knew how inconsiderate people could be until now. Somehow, I've got to get tough and deal with these people in my life who don't understand these health issues and are dismissive. I just don't understand why they don't even try to understand!
bluelakelady
04-15-2008, 10:55 AM
don't bother getting tough. waste of energy. instead, quit caring what anyone thinks. this is your health and only you live it. there are good people and there are afraid people who manifest their fears thru poor behavior. best to avoid them.
they don't try to understand because they don't have to. simple as that.
when it comes to personal health it is a journey we all walk alone. it's just life.
i don't want or expect anyone to understand me or my body. i do have a right to be treated with compassion. i get rid of the people who cannot do that. even family if need be.
peace,
bluelakelady
they don't try to understand because they don't have to. simple as that.
when it comes to personal health it is a journey we all walk alone. it's just life.
i don't want or expect anyone to understand me or my body. i do have a right to be treated with compassion. i get rid of the people who cannot do that. even family if need be.
peace,
bluelakelady
lynn41
04-15-2008, 12:50 PM
don't bother getting tough. waste of energy. instead, quit caring what anyone thinks. this is your health and only you live it. there are good people and there are afraid people who manifest their fears thru poor behavior. best to avoid them.
they don't try to understand because they don't have to. simple as that.
when it comes to personal health it is a journey we all walk alone. it's just life.
i don't want or expect anyone to understand me or my body. i do have a right to be treated with compassion. i get rid of the people who cannot do that. even family if need be.
peace,
bluelakelady
Wow ... words of wisdom. But what do you do about people that you are forced to interact with at work, or through your husband's family, who think the same way that person thinks that started the thread here about her sister-in-law being a fake? I just want to tell them to BITE ME since they don't have a clue what it's like to deal with this crap for one day.
they don't try to understand because they don't have to. simple as that.
when it comes to personal health it is a journey we all walk alone. it's just life.
i don't want or expect anyone to understand me or my body. i do have a right to be treated with compassion. i get rid of the people who cannot do that. even family if need be.
peace,
bluelakelady
Wow ... words of wisdom. But what do you do about people that you are forced to interact with at work, or through your husband's family, who think the same way that person thinks that started the thread here about her sister-in-law being a fake? I just want to tell them to BITE ME since they don't have a clue what it's like to deal with this crap for one day.
goldyfm
04-15-2008, 03:41 PM
I also had a positive ANA with speckled pattern. I was Not told that I had Lupus but rather Sjogrens' but I am doubtful of that as well. I also had a positive C Reactive Protein and IGG and IGM Immune studies. I am currently on Rheumatologist # 3 and am being treated with a different approach now. I am medication and treatment resistant that makes me a challenge to treat. Just don't give in to the misinformation of others. There are knowledgeable doctors out there that are well versed in the treatment of FMS. Some may use non-traditional treatments; but any action to alleviate pain, to me, is a plus. Don't get caught up in the game of FMS not being treatable. There are many of us that have found some remedies to help with the pain and rest issues. Keep reading and search for a docotr that specializes in FMS. I know that knowledge is power and we need all the ammo we can muster to conquer this evil.
Glojer
04-15-2008, 11:27 PM
lynn for the people who doubt you, ask them if they would like to take the National Fibromyalgia Association challenge to see what fibromyalgia really feels like and see how long they can take the pain. You can look it up on their site, but it is to put a clip or spring loaded clothespin on the tip of your finger from side to side (not on the fingernail) and see how long they can take the pain and the way it feels. Then tell them that's how you feel 24/7. And for the ones who have been especially not nice to you, call them a wussy and walk away.
I know I agree with blue, ignore those people and don't let them stress you cause fibro loves our stress. I do however think it is a great way to 'clue people in' about how we can feel.
Glojer
I know I agree with blue, ignore those people and don't let them stress you cause fibro loves our stress. I do however think it is a great way to 'clue people in' about how we can feel.
Glojer
lynn41
04-15-2008, 11:35 PM
lynn for the people who doubt you, ask them if they would like to take the National Fibromyalgia Association challenge to see what fibromyalgia really feels like and see how long they can take the pain. You can look it up on their site, but it is to put a clip or spring loaded clothespin on the tip of your finger from side to side (not on the fingernail) and see how long they can take the pain and the way it feels. Then tell them that's how you feel 24/7. And for the ones who have been especially not nice to you, call them a wussy and walk away.
I know I agree with blue, ignore those people and don't let them stress you cause fibro loves our stress. I do however think it is a great way to 'clue people in' about how we can feel.
Glojer
Now that sounds like a suggestion that I would love to have SEVERAL people take that test. I'm going to look that up and pass around a few "challenges" to those who so quickly say I'm exagerating, making it up, etc. COOL!! Thanks!!
I know I agree with blue, ignore those people and don't let them stress you cause fibro loves our stress. I do however think it is a great way to 'clue people in' about how we can feel.
Glojer
Now that sounds like a suggestion that I would love to have SEVERAL people take that test. I'm going to look that up and pass around a few "challenges" to those who so quickly say I'm exagerating, making it up, etc. COOL!! Thanks!!
bluelakelady
04-16-2008, 10:26 AM
hi lynne,
in answer to your question, you be polite and nothing more. i think it was my grandma who told me to be polite to mindless thinking people. she said when i am polite to those who are not it serves me in the journey to be a strong woman. she was right.
there will always be someone you have to interact with that you would rather never have met. there is a level of courtesy, with a tone of polite distance that i use.
thankfully i seldom have to drag it out.
you cracked me up. my favorite, and i do say it, is bite me, too!! i also say pick and inch and kiss it as i walk away. this is done in humor among friends. giggle.
peace,
bluelakelady
in answer to your question, you be polite and nothing more. i think it was my grandma who told me to be polite to mindless thinking people. she said when i am polite to those who are not it serves me in the journey to be a strong woman. she was right.
there will always be someone you have to interact with that you would rather never have met. there is a level of courtesy, with a tone of polite distance that i use.
thankfully i seldom have to drag it out.
you cracked me up. my favorite, and i do say it, is bite me, too!! i also say pick and inch and kiss it as i walk away. this is done in humor among friends. giggle.
peace,
bluelakelady
bluelakelady
04-16-2008, 10:33 AM
hey glojer,
i just told my brother about the clothspin thing. he got a very pensive look and said i am going to think about that today. he will too. very good way to express it. funny i never think about it, i just live it. the clothspin thing got me remembering. yup, the pain is still there. giggle.
peace,
blue
i just told my brother about the clothspin thing. he got a very pensive look and said i am going to think about that today. he will too. very good way to express it. funny i never think about it, i just live it. the clothspin thing got me remembering. yup, the pain is still there. giggle.
peace,
blue
lynn41
04-16-2008, 10:53 AM
Bluelakelady and Glojer:
I'm going to try just killing the mean ones with kindness, weed out the idiots who don't bother to take the time to understand ... and then for a chosen few who won't leave me alone, I'm buying a bag of clothes pins, passing them out and asking them to see just how tough they really think THEY are. :D
My biggest problem right now is a lack of patience, which turns into anger. I'm a pretty laid back person, and I've always tried not to be judgmental since I really believe that each of our journeys in life is personal to us and no one else can know what it's like to walk a mile in another person's shoes. I don't always do this successfully - 'cause some people just bug the crap out of me and I can't let them slide.
This judgmental crap is wearing thin on me now and I'm running out of patience. Maybe I should carry around a clothes pin to pinch myself with for control the next time I want to smack someone for their stupidity, lack of sensitivity and coldness. :)
I'm going to try just killing the mean ones with kindness, weed out the idiots who don't bother to take the time to understand ... and then for a chosen few who won't leave me alone, I'm buying a bag of clothes pins, passing them out and asking them to see just how tough they really think THEY are. :D
My biggest problem right now is a lack of patience, which turns into anger. I'm a pretty laid back person, and I've always tried not to be judgmental since I really believe that each of our journeys in life is personal to us and no one else can know what it's like to walk a mile in another person's shoes. I don't always do this successfully - 'cause some people just bug the crap out of me and I can't let them slide.
This judgmental crap is wearing thin on me now and I'm running out of patience. Maybe I should carry around a clothes pin to pinch myself with for control the next time I want to smack someone for their stupidity, lack of sensitivity and coldness. :)
bluelakelady
04-16-2008, 11:01 AM
no matter how you are treated by others it is what you choose to do in response that determines if you stay on the sidewalk or get down in the gutter with them. your anger and impatience are not healthy for you. so stop it. instead give thanks that you are not them and move on. no one is worth it. your energy is precious and must be used wisely.
fibro feeds on anger and spits out pain. if you get angry they and fibro win. see?
compassion in the face of intolerance. love in the face of anger. these are my tools.
peace,
blue
fibro feeds on anger and spits out pain. if you get angry they and fibro win. see?
compassion in the face of intolerance. love in the face of anger. these are my tools.
peace,
blue
CDS75
04-16-2008, 06:06 PM
Welcome to Fibromyalgia. Sadly, he will probably not be the last doctor you encounter with that attitude.
ANA screens for any autoimmune disorders. However, a positive result does not necessarily mean you have one. Most autoimmune disorders have a gradual onset. Many times you can feel symptoms well before your blood will show anything.
Keep your chin up, blow the jerk off, and find yourself another Rheumatologist to investigate your ANA results. Many docs treat fibromyalgia, but it can take quite a bit of research to find a good one. I always ask other people who their doctors are, if they like them, and if they listen. You never know when you or a family member may need a specific type of doc.
I have had a positive Rheumatoid factor for 4 years. I went to a Rheumy in 05 and they did xrays and more blood work but didn't see anything. My fingers and toe joints started hurting really bad in Sept 07. I went back to the Rheumy - blood work - Rheumatiod Factor nomal, ANA- normal, ESR - normal, Xrays-normal, but MRI shows synovial inflammation with early erosive disease. Blood tests are not always accurate. You know how you feel...don't stop until you find someone who will listen.
ANA screens for any autoimmune disorders. However, a positive result does not necessarily mean you have one. Most autoimmune disorders have a gradual onset. Many times you can feel symptoms well before your blood will show anything.
Keep your chin up, blow the jerk off, and find yourself another Rheumatologist to investigate your ANA results. Many docs treat fibromyalgia, but it can take quite a bit of research to find a good one. I always ask other people who their doctors are, if they like them, and if they listen. You never know when you or a family member may need a specific type of doc.
I have had a positive Rheumatoid factor for 4 years. I went to a Rheumy in 05 and they did xrays and more blood work but didn't see anything. My fingers and toe joints started hurting really bad in Sept 07. I went back to the Rheumy - blood work - Rheumatiod Factor nomal, ANA- normal, ESR - normal, Xrays-normal, but MRI shows synovial inflammation with early erosive disease. Blood tests are not always accurate. You know how you feel...don't stop until you find someone who will listen.
lynn41
04-16-2008, 10:22 PM
no matter how you are treated by others it is what you choose to do in response that determines if you stay on the sidewalk or get down in the gutter with them. your anger and impatience are not healthy for you. so stop it. instead give thanks that you are not them and move on. no one is worth it. your energy is precious and must be used wisely.
fibro feeds on anger and spits out pain. if you get angry they and fibro win. see?
compassion in the face of intolerance. love in the face of anger. these are my tools.
peace,
blue
I know you're right. I keep telling myself ... deep breaths ... deep breaths ... be the bigger person.
fibro feeds on anger and spits out pain. if you get angry they and fibro win. see?
compassion in the face of intolerance. love in the face of anger. these are my tools.
peace,
blue
I know you're right. I keep telling myself ... deep breaths ... deep breaths ... be the bigger person.
lynn41
04-16-2008, 10:26 PM
Welcome to Fibromyalgia. Sadly, he will probably not be the last doctor you encounter with that attitude.
ANA screens for any autoimmune disorders. However, a positive result does not necessarily mean you have one. Most autoimmune disorders have a gradual onset. Many times you can feel symptoms well before your blood will show anything.
Keep your chin up, blow the jerk off, and find yourself another Rheumatologist to investigate your ANA results. Many docs treat fibromyalgia, but it can take quite a bit of research to find a good one. I always ask other people who their doctors are, if they like them, and if they listen. You never know when you or a family member may need a specific type of doc.
I have had a positive Rheumatoid factor for 4 years. I went to a Rheumy in 05 and they did xrays and more blood work but didn't see anything. My fingers and toe joints started hurting really bad in Sept 07. I went back to the Rheumy - blood work - Rheumatiod Factor nomal, ANA- normal, ESR - normal, Xrays-normal, but MRI shows synovial inflammation with early erosive disease. Blood tests are not always accurate. You know how you feel...don't stop until you find someone who will listen.
Thanks for the information. It's all so frustrating!:mad:
ANA screens for any autoimmune disorders. However, a positive result does not necessarily mean you have one. Most autoimmune disorders have a gradual onset. Many times you can feel symptoms well before your blood will show anything.
Keep your chin up, blow the jerk off, and find yourself another Rheumatologist to investigate your ANA results. Many docs treat fibromyalgia, but it can take quite a bit of research to find a good one. I always ask other people who their doctors are, if they like them, and if they listen. You never know when you or a family member may need a specific type of doc.
I have had a positive Rheumatoid factor for 4 years. I went to a Rheumy in 05 and they did xrays and more blood work but didn't see anything. My fingers and toe joints started hurting really bad in Sept 07. I went back to the Rheumy - blood work - Rheumatiod Factor nomal, ANA- normal, ESR - normal, Xrays-normal, but MRI shows synovial inflammation with early erosive disease. Blood tests are not always accurate. You know how you feel...don't stop until you find someone who will listen.
Thanks for the information. It's all so frustrating!:mad:
mmee
05-08-2008, 08:54 PM
I wanted to let you know that I also have a very high positive ANA titer 1:640. I have had it for over a year now. I was diagnosed with myofascial pain disorder, so I don't know if it comes from that or where it comes from. Sometimes knowing that I have this high titer bothers me, because I am worried what it is, but then other times I don't really even think about it. I also have intermittent high calcium now, has anyone had that with an elevated ANA?
I have read though that it is common to have positive ANA with fibro and myofascial pain disorder.
mmee
I have read though that it is common to have positive ANA with fibro and myofascial pain disorder.
mmee