Does anyone else have EM,Fibromalagia,and Raynauds with out any family history of these diseases?No one in my family has any of these but I have all 3 of them.My mom has Graves disease but thats the only one in my family that has any disorders.There is no MS or Lupus in my family either.Also wondering if any of this could be caused by working around alot of Chemicals?
Hello, my daughter is the only one in our family with EM. She also has PEPD. She has just a spontaneous mutation that she was born with.
Yes, my extended family is full of the combination of Fibromyalgia (w/all that entails), Raynauds and EM. There are a few who don't have the EM in their mix of disorders. We also have a lot of chemical and drug hypersensitivities, osteoarthritis, asthma-like problems and tendancy to get Bronchitis and lung collapse. And among the group there is also some Glaucoma, POTS, electrical heart defects, a structural hear defect (missing inferior vena cava) and a host of other problems.
Hi, I have exactly same as you,no family history,just come about 2 half yrs ago,I was fit,energenic,and attended the gym everyday for 90 mins-120 mins,until this where started,I got sore painful knee,and in the end had to stop,I have heard it can all stem from a injury weather this is true or not I don’t no,all I do no is I suffer bad with my knee,I have bad back,from injury wen I was teenager,and now constent pain,which as I go on it seem to get worse effecting diff areas,mine started with hands feet been cold but yet burning,then burning,itching of arms,to now it making me burn all over,feet,hands sore swollen,and can’t stand walk for long periods of times,it make u wonder what gona wake up with nxt,and u go to gps and they can’t offer advice cos they don’t no anything about it,don’t it make u depressd…
To crazygrandma, that is the loaded question as to what is causing all of these illnesses. Over the years I've heard possible chemical exposure, virus & auto immune disease not yet discovered, & now Lyrica is saying they "believe" FM is possibly incorrect nerve signals to the brain about pain. But to my knowledge it is still just a guessing game.
I have FM/CFS, Raynaud's, now EM. My dad has Raynauds just in his feet but otherwise my family is in pretty good health overall. Thank goodness since I rely on them a lot.
I have sisters (4) who have Fibromyalgia, as I do, but I am the only one with EM. I also have Bronchiectasis and Thrombocytosis.
I have em with no family history I worked around alot of chemicals when I was in my twentys but nothing showed up until
I had an nerve block in my back then it has been down hill every sense.
Dale
Dale
I am still working and I work with alot of bad chemicals,I never was sick until I took this job and it's been going down hill ever since.And with no family history I wasn't sure.Thanks for your input.
Dale said:
I have em with no family history I worked around alot of chemicals when I was in my twentys but nothing showed up until
I had an nerve block in my back then it has been down hill every sense.
Dale
Sarah
Sounds like you really understand.I had been working out at the YMCA since 2003 and gradually tapered off because of feelin so bad.But I wish I would of kept pushing because it's so hard to try to get back into it.But i'm trying I just biught a Chuck Norris total gym and i'm taking it slow and only doing what I can and hopefully I can do a little.My dr encourages to exercise to keep the blood flowing.Thanks for your input.
sarah said:
Hi, I have exactly same as you,no family history,just come about 2 half yrs ago,I was fit,energenic,and attended the gym everyday for 90 mins-120 mins,until this where started,I got sore painful knee,and in the end had to stop,I have heard it can all stem from a injury weather this is true or not I don't no,all I do no is I suffer bad with my knee,I have bad back,from injury wen I was teenager,and now constent pain,which as I go on it seem to get worse effecting diff areas,mine started with hands feet been cold but yet burning,then burning,itching of arms,to now it making me burn all over,feet,hands sore swollen,and can't stand walk for long periods of times,it make u wonder what gona wake up with nxt,and u go to gps and they can't offer advice cos they don't no anything about it,don't it make u depressd....
Trisha6797
Thanks for your input! I'm just trying to figure out how all these diseases seem to be connected in one way or another.When there is no family history.
Trisha6797 said:
Hello, my daughter is the only one in our family with EM. She also has PEPD. She has just a spontaneous mutation that she was born with.
Lisers
I know it's just not knowing so much of what causes these diseases.And the fact that I was never sick until I started this job.And it may have nothing to do with my work.Thanks for your input.
lisers said:
To crazygrandma, that is the loaded question as to what is causing all of these illnesses. Over the years I've heard possible chemical exposure, virus & auto immune disease not yet discovered, & now Lyrica is saying they "believe" FM is possibly incorrect nerve signals to the brain about pain. But to my knowledge it is still just a guessing game.
I have FM/CFS, Raynaud's, now EM. My dad has Raynauds just in his feet but otherwise my family is in pretty good health overall. Thank goodness since I rely on them a lot.
Louise
Sorry to hear about your 4 sisters having Fibromyalgia as well.At least they understand what your going thru.Thanks for your input.
Louise said:
I have sisters (4) who have Fibromyalgia, as I do, but I am the only one with EM. I also have Bronchiectasis and Thrombocytosis.
Kentuckian
Sorry to hear about alot of your family members having to deal with so many of these illnesses.On my job I have to work with chemicals some of the time so I wasn't sure if it could be causeing some of my problems.But I will be asking my dr when I go back in March.Thanks for your input.
Kentuckian said:
Yes, my extended family is full of the combination of Fibromyalgia (w/all that entails), Raynauds and EM. There are a few who don't have the EM in their mix of disorders. We also have a lot of chemical and drug hypersensitivities, osteoarthritis, asthma-like problems and tendancy to get Bronchitis and lung collapse. And among the group there is also some Glaucoma, POTS, electrical heart defects, a structural hear defect (missing inferior vena cava) and a host of other problems.
Sarah
I forgot to add to my message mine all started after I had surgery.And yes it's very depressing.I'm so grateful for this websight and for people who truely understand what we go thru like no one else can.
sarah said:
Hi, I have exactly same as you,no family history,just come about 2 half yrs ago,I was fit,energenic,and attended the gym everyday for 90 mins-120 mins,until this where started,I got sore painful knee,and in the end had to stop,I have heard it can all stem from a injury weather this is true or not I don't no,all I do no is I suffer bad with my knee,I have bad back,from injury wen I was teenager,and now constent pain,which as I go on it seem to get worse effecting diff areas,mine started with hands feet been cold but yet burning,then burning,itching of arms,to now it making me burn all over,feet,hands sore swollen,and can't stand walk for long periods of times,it make u wonder what gona wake up with nxt,and u go to gps and they can't offer advice cos they don't no anything about it,don't it make u depressd....
I worked with chemicals in college and had wondered if that was the cause since I didn't think I had any family history until I learned differently at around age 45. My 4 siblings and parents don't/didn't have it. But to prepare for a genetics appt, the doctor's office asked me to track down history on my deceased grandparents. My father was deceased and mother was non-communicative with Alzheimer's, so I tried to locate cousins who had lived near our grandparents. When I located cousins, I found I had several first cousins with EM and since then I've learned that a neice has it. The cousins didn't realize it ran in the family either.
crazygrandma said:
On my job I have to work with chemicals some of the time so I wasn't sure if it could be causeing some of my problems.
Kentuckian said:
Yes, my extended family is full of the combination of Fibromyalgia (w/all that entails), Raynauds and EM. There are a few who don't have the EM in their mix of disorders. We also have a lot of chemical and drug hypersensitivities, osteoarthritis, asthma-like problems and tendancy to get Bronchitis and lung collapse. And among the group there is also some Glaucoma, POTS, electrical heart defects, a structural hear defect (missing inferior vena cava) and a host of other problems.
I have always been the same as you two, very fit and always on the go until EM struck. I then spent the next year being told by doctors that they didn't know what was going on not to exercise, having what felt like hundreds of tests by loads of different professionals. While nobody knew what was going on I was told NOT to exercise because thet thought that that would make things worse. SO... I did as I was told, rested loads (pushed myself to work but everything else went) I sat with my feel up on footstool watching tv and gaining weight. I was in pain, getting depressed because I couldn't do anything and hating how I looked. I was EXTREMELY lucky to then have 18 months of remission, I came off the gabapentin and was pain free. I got back into the gym 6 x week, the weight fell off, I was fitter than ever and feeling great. Then out of the blue it came back with a vengenece. I am determined not to stop gymming it, although everything thing feels a millions times harder with the pain and numbness I get when exercising I want to keep my fittness as long as I can. I do some exercise classes with bare feet and nobody has made any comment as to why I am as red as a tomato from the knees down yet.
I really hope you can both get some of your fitness back, slowly but surely :)
crazygrandma said:
SarahSounds like you really understand.I had been working out at the YMCA since 2003 and gradually tapered off because of feelin so bad.But I wish I would of kept pushing because it's so hard to try to get back into it.But i'm trying I just biught a Chuck Norris total gym and i'm taking it slow and only doing what I can and hopefully I can do a little.My dr encourages to exercise to keep the blood flowing.Thanks for your input.
sarah said:Hi, I have exactly same as you,no family history,just come about 2 half yrs ago,I was fit,energenic,and attended the gym everyday for 90 mins-120 mins,until this where started,I got sore painful knee,and in the end had to stop,I have heard it can all stem from a injury weather this is true or not I don't no,all I do no is I suffer bad with my knee,I have bad back,from injury wen I was teenager,and now constent pain,which as I go on it seem to get worse effecting diff areas,mine started with hands feet been cold but yet burning,then burning,itching of arms,to now it making me burn all over,feet,hands sore swollen,and can't stand walk for long periods of times,it make u wonder what gona wake up with nxt,and u go to gps and they can't offer advice cos they don't no anything about it,don't it make u depressd....
Lauraflora1
Glad to hear your able to work out some again.I'm gonna take it slow.So far the Total gym I got I sit down for alot of the exercises.I am alittle red afterwards but I feel better.My dr has always encouraged me to continue to work out.She said it helps keep the bloodflowing and helps against depression.My job is very physical so some days are better than others.I just try to adjust to everything I do.My husband and I have a motorcycle not sure how that will work out next summer.Now that I know why my feet were red and swelling!! I just thought it was because they were by the exhaust pipes.And we like to travel on ours so we will see.
lauraflora1 said:
I have always been the same as you two, very fit and always on the go until EM struck. I then spent the next year being told by doctors that they didn't know what was going on not to exercise, having what felt like hundreds of tests by loads of different professionals. While nobody knew what was going on I was told NOT to exercise because thet thought that that would make things worse. SO... I did as I was told, rested loads (pushed myself to work but everything else went) I sat with my feel up on footstool watching tv and gaining weight. I was in pain, getting depressed because I couldn't do anything and hating how I looked. I was EXTREMELY lucky to then have 18 months of remission, I came off the gabapentin and was pain free. I got back into the gym 6 x week, the weight fell off, I was fitter than ever and feeling great. Then out of the blue it came back with a vengenece. I am determined not to stop gymming it, although everything thing feels a millions times harder with the pain and numbness I get when exercising I want to keep my fittness as long as I can. I do some exercise classes with bare feet and nobody has made any comment as to why I am as red as a tomato from the knees down yet.
I really hope you can both get some of your fitness back, slowly but surely :)
crazygrandma said:
SarahSounds like you really understand.I had been working out at the YMCA since 2003 and gradually tapered off because of feelin so bad.But I wish I would of kept pushing because it's so hard to try to get back into it.But i'm trying I just biught a Chuck Norris total gym and i'm taking it slow and only doing what I can and hopefully I can do a little.My dr encourages to exercise to keep the blood flowing.Thanks for your input.
sarah said:Hi, I have exactly same as you,no family history,just come about 2 half yrs ago,I was fit,energenic,and attended the gym everyday for 90 mins-120 mins,until this where started,I got sore painful knee,and in the end had to stop,I have heard it can all stem from a injury weather this is true or not I don't no,all I do no is I suffer bad with my knee,I have bad back,from injury wen I was teenager,and now constent pain,which as I go on it seem to get worse effecting diff areas,mine started with hands feet been cold but yet burning,then burning,itching of arms,to now it making me burn all over,feet,hands sore swollen,and can't stand walk for long periods of times,it make u wonder what gona wake up with nxt,and u go to gps and they can't offer advice cos they don't no anything about it,don't it make u depressd....
Hi, I have FMS/CFS Raynaunds and EM. My family shows variations but not dx. My mom, uncle and cousin all sometimes get cold hands or hands that are reddish but w/o pain. I suspect my mom has a mild form of FMS, as she has restless leg, sleep and stomach issues but it has never caused her to be disabled, as i am? Hope that is helpful ;)
Dizzy
Wow it looks like having one of these diseases just open the pandora box for more.Looks like they are all connected.And that alot of it runs in families.
dizzy said:
Hi, I have FMS/CFS Raynaunds and EM. My family shows variations but not dx. My mom, uncle and cousin all sometimes get cold hands or hands that are reddish but w/o pain. I suspect my mom has a mild form of FMS, as she has restless leg, sleep and stomach issues but it has never caused her to be disabled, as i am? Hope that is helpful ;)
MB
Wow that's scarry!! It's sad that alot of Dr's don't understand alot of the immune diseases.Glad the Mayo Clinic was able to diagnose and help you.
MB said:
I have em and ray nails, no family history . I was diagnosed with raynaulds first em came 6 months later after a mysterious illness that almost took my life.I was diagnosed at mayo clinic.