mom's living and coping with lupus and fibromyalgia

Erika - posted on 04/12/2009 ( 19 moms have responded )

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This is a new group that i started and it need support. If you or someone you know or love has either diseaese this group is for you. It is a place to vent and tell your story. It is also a place to get advice on either or both ailments. Please help me get the awareness out there, and give people somewhere to go when they need someone just like them.

MOST HELPFUL POSTS

Asia - posted on 08/06/2013

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My name is Asia and I am blessed to live in San Francisco because there is so much research that goes on. I also go to a good hospital UCSF. I've had Lupus since 2008, spent two weeks in the ICU with a 105 fever for 4 days on the 5th day as they were givin my husband the do not wake up paperwork for me, they figured out to give me 2000 cc's of predisone, which worked. So, I have lupus, rheumatoid arthritis, and Fibromyalgia at the age of 33 and I'm blessed to have doctors that dont think this all is in my head. I have a husband and a 13 month old daughter that makes me smile and push on even on my worse days. I'm not going to lie my conditions has put stress into my marriage and makes it difficult at times because the superwoman he's known is not as super as I use to be but I'm super like whoever reads this because we get up everyday and fight even when we hurt like hell, when we can barely move because every joint feels like its popping out, when our energy is low, when we feel like crying but we still wear a brave face. Living like this is not easy but hopefully it will get better. I wish all these other ladies had emails because I would email them saying you have another luppy mom that understands you. So, if anyone sees my post email me so we can keep in touch amd stay encouraged. Dont know you but I love you because I know your struggle =) dasialee1980@gmail.com. ears and eyes always open =)

Merritt - posted on 04/11/2011

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Ive hadfms since 18 and recently found out ive got lupus..I have 6 kids 14 ..8...6.5..3...and 6 months im struggling everyday ..my husband is a huge help...everyday I need him to help med from bed but once im up I force my self to stay up or i get depressed I feel like a bad mom...I try and rest but sometimes its hard I am also starting my papers for ssi

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Joanna - posted on 03/20/2014

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Hi my name is Joanna and I have lupus and fibromyalgia. Its very hard to cope and the pain is something else.I have three children 11-3-5 and its a lot of work especially since I can't move around like I use to. I'm so lost for words and wish I could talk to someone who understands. Having not one but two chronic diseases and three children is very hard. Along with stress, depression and anxiety just trying to do it one day at a time. Have to learn to pace myself which is the hardest thing for me to do.

Amber - posted on 08/23/2013

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Am I alone? Im a 26yr old ex military mom of a soon to be 3yr old son I got told I had antiphoslipid syndrome when I was pregnant at age 23 had to do lovenox blood thinner shots in belly every day for 9mths. Then I got told my RA level is 389 I have lupus ,fibormyalgia and arthritis my head is foggy alot and I don't understand why none of this showed up until I got pregnant and after I had my son. I just started going to an RA specialist and had a full body bone scan to see what its done to my joints etc. Ive been on pain pills since last November I cant function mobility wise without them its awful. I also have a hiatial hernia and im anemic because of a severe vitamin B12 deficiency im on injections for.. mixed auto immune desiease is what im told I have do all these things I have go hand in hand has one disorder caused the other's etc ? Will it ever go away am I the only one so young with all this

Dana N Drew - posted on 12/15/2012

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I'm 26 years old, I've always pushed myself to make myself proud, and now i don't know how with fibromyalgia. My children are 7 4 & 2, and I have been married since 05. I have been miserable for years but sense my last pregnancy its hard to hold my arms up. I went to so many Drs hoping to just get fixed and go back to work.no body understands, even the drs, because I'm so young. I've been to the point where I can't believe that I only have fibromyalgia,i have so many other horrible symptoms.and yesterday my sister was diagnosed with lupus:( I have been tested for it plenty of times, but I'm wondering if i could still have it? I have looked online and it seems there is a lot of families where they have it in common. I just worry that i will only test positive when it is too late, and i worry for my children! i don't want them to have to live like this.

Joy - posted on 12/06/2012

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Hi! I do have fibro and other stuffy crappy diseases. My comment here is in hopes someone can point me in the right direction in Ks, my friend is 50, she has been battling cancer since 14. two years ago after her last surgery for cancer, (stage 3 and 4) she was diagnosed with fibro and lupus. She has also been denied any help from the state, and denied 3 times for disability. My heart hurts for her, and I cannot with my fogs research at times...we are in the end of the state of KS that has no groups, no advocates, nothing that we can find. if you have advice, I would love to hear. thanks and bless you all. *gentle hugs* Joy

Coralie Avery - posted on 11/03/2012

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Hi,

I've had fibromyalgia for 8 years and have just gotten diagnosed with lupus this year although its been running rampant for over a year.



I have 4 kids- 13,11,10,18months. I'm hoping that the treatments will work and I can get back to work a couple of days a week. I'm on disability and in Australia :)



Coralie :)

Mary - posted on 09/11/2012

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Hi brytany!! I can totally relate. Since I was young like you I have battled with my fair share of health problems. From polycystic ovaries, bunions, 2 complicated pregnancies ( one of which I bled through the entire time), cancerous fibroid tumor in my uterus which led to a hysterectomy at the age of 34. Now I am currently in stage 3 kidney failure, have lupus, and also fibromyalgia. Life has become very difficult and exhausting. I too keep going because I have two beautiful boys, ages 12 and 15, and got remarried to a wonderful man. My husband is on disability and suffers from cluster migraines. He's been I'll since high school. So I have been the bread winner the whole time and carrier of our insurance. Work is becoming more and more impossible. I'm in so much pain at work and then when I get home I'm literally crippled. It's very depressing. I've been on many different meds and have had so many tests. So far cymbalta is helping a little but they all seem to stop working after a few months. I've been reading that diet is very important and staying flexible. I stretch as much as possible, even at work. My coworkers are used to it. Lol! My husband does so much for me. I don't know what I'd do without him. I'm going to research the proper diet thing out and give that a try. Anything at this point is worth a try. I will let u know if it helps out!! Hugs yo u! Hang n there!

Mary

Brytany - posted on 02/24/2012

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I was diagnosed with Fibromyalsia with lupus positive at age 12, shortly after my mother was diagnosed. I have had many struggling years in and out of every school district there was around me and now have been forced to drop out of school to get a G.E.D, witch i have never expected... =( I am currently a first time mommy for four months now and am struggling everyday to even get dressed. Trying to work a normal job and cannot be dependable AT ALL!! The only thing to keep me going is my little angels smile. I have suffered for years and still havent found the correct medication to regulate the pain and anxiety and depression that comes along with these debilitating diseases. When I got pregnant i thought it would be a perfect labor&delivery but of course not, i have to deal with everything the hard way.... So once i had delivered my daughter everything was wonderful i held her for a few moments until they diagnosed me with placenta accreta , and i almost died, could have hemorrhaged at anytime, had a heart attack without even knowing. So 2 d&c's 6 blood transfusions later and 2 weeks of placenta dying off inside of me i lived to survive another day, to see my beautiful daughter grow, i am so grateful for that! I just ask that anyone who can relate to my problems please contact me i am in need of someone who understands...... ~Brytany

Amanda - posted on 05/06/2011

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I have Arthritis I was diagnosed when I was three and when I was 8 or 9 I was diagnosed with Lupus. I've also been diagnosed with Graves Disease. I do believe I will be diagnosed with Fibromyalgia. I live in pain everyday and I don't know how to cope with it, I'm on meds (Pain) and Suffer from Major Depression and Anxiety and on meds for that too and all those anti-inflammatory. I'm only 32 and it effects my sexual health in relationships and the activities I can do. I'd like to have some pain management tips or hear your stories and how you do it. Not to mention I have a son with disabilities a complex case with dual diagnosis. I just want to live as positive as I can I work on that lots as well as healing thy self and live for each new day weather bad or great I accept whats been layed out for me. Thy will be done, Look forward to hearing from you all. Thank You and have a wonderful day. (:

Michelle - posted on 04/15/2010

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I have Both also. I have had Fibro since late 98 and I have been sick with all the Lupus since at least 2004, but only went to the doctor symptomatically. So my diagnosis came in 2008. I have 5 children, 18, 14, 12, 5, 3 (just about). Life is difficult for me and I just started the paperwork for S.S. For my kids I try and I make sure to get out of the house every week. I hope more people post, I would love to know what works for ppl.

Angela - posted on 11/17/2009

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Hi Erika,

My sister was diagnosed with Lupus about 9 yrs ago. I would love to share with you something that she has found that has helped her and many others.

For more information email me at amanzi5@yahoo.com

Looking forward to sharing my information with you.

Warmly,
Angela

Laura - posted on 06/12/2009

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My mom has lupus - she has had it for about 8 years now - she is 59 - she cannot get it inot remission - shes too old - she has a weight problem (has had for most her life) she swells even more from the cortisones - and now shes been diagnosed with hardening of the lung walls. she can hardly breath somedays - the problem is that she is soooo stubborn - she doesnt stay on the meds - she doesnt do a single bit of exercise - she doesnt always eat well (she tries to stay away from the wrong things for lupus) she has permanent lung infections - her heart is taking strain - she wont exercise, diet, drink more water or stay on the right meds - I dont know what to do other than keep telling her she is going to die and maybe that will shock her into reality and she will do something about it - a bit of advice from anybody please????????????

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Kelly, I can relate so much to you...I have been diagnosed with MCTD, Lupus, UC and Fibromyalgia. The symptoms have made me completely unreliable...I don't know when I'll be able to shower each day much less DO anything! I try to work from home, (Avon) but the delivery end of the work is hard for me. Again, don't know when/if I will leave the house. I finally have a great deal with internet shopping so most items come to me...that has really saved me! I have been on canes since I was 14 and recently had to get a wheelchair for longer distances as my hands swell and hurt too much to use my canes for long. As for meds...I quit. I'm doing this as naturally as possible, the meds made everything worse, and the Drs. kept pushing them. I finally found a naturalpath (?) homeopathic dr that has shown me alternatives. They work as well as the meds could but without the horrible side effects of the meds! I hope you can find someone to naturally help you too...I understand how tiring the meds get!! God Bless you and keep you!

Alisa - posted on 04/25/2009

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Quoting Erika:

mom's living and coping with lupus and fibromyalgia

This is a new group that i started and it need support. If you or someone you know or love has either diseaese this group is for you. It is a place to vent and tell your story. It is also a place to get advice on either or both ailments. Please help me get the awareness out there, and give people somewhere to go when they need someone just like them.


 I have had SLE since 1994. I was 25 when diagnosed with a 3 year old. I had kidney involvement and severe joint inflammation and swelling. I have had just one other flare up in 2005 and have been good since then. My only problem is that I get tired easily. I work full time and go to college part time.  I get check ups every 3-4 months.

Kelly - posted on 04/25/2009

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I was curious on how you are able to work? I havent been able to, cause I have become unreliable due to all of the different symptoms...I wish I could go back to work, or at least do something with myself!!

Kelly - posted on 04/25/2009

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Well, i have both! I was diagnosed about 3 years ago with Lupus and just recently with Fibro....its so hard to deal with..depression has gotten the better of me, and i spend a lot of time in bed. I have 2 girls, 8 and 11 and they are very understanding...I have spent so much time reading about all different things, and I actually dont feel confident about it. I use a cane to walk(keep my balance) and on really bad days, I use a wheelchair,,I dont walk long distances and i pretty much stay at home...

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I have had fibromyalgia since my youngest son was born 11 years ago. My symptoms started when he was 4 days old. Yesterday I go the Lupus news. I just thought it would be "another Rheumatology visit". I was by myself and spent my 45 minute drive home sobbing. My other children are 16 and 13. My husband is supportive, but gets strained with all of the "extra" stuff that I used to do. Our kids help out tremendously as well. I've been having a pretty bad flare up for the last couple of weeks, and I'm really tired of being tired, achy and weak. I'm still working full time as an RN, and I'm trying to get the energy to get ready for work, without a lot of success.

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