mom's living and coping with lupus and fibromyalgia

Erika - posted on 04/12/2009 ( 24 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

Erin - posted on 04/29/2009

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I was diagnosed with fibro 6 months ago after years of frustrating testing and negative results. Now that we have the diagnosis it all makes sense. I've had this condition for years and years. I thought knowing a name for all the things wrong would help me fight it, but in truth it's only made me more depressed. My family thinks fibromyalgia is the name doctors give hypochondriacs to get them to go away. I have 2 girls, 4 and 2. They are the only thing that gets me out of bed in the morning, otherwise I'd give up... I don't want to live the rest of my life in this agony. By the way, I also work full time, and my husband tries to be supportive, but doesn't really get it.

User - posted on 04/20/2009

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hi ive fibro had it now for quite a few years. Some days the pain is so disabling i carnt always be the proper mum i once was for my children and that makes me sad. 8-(

Christine - posted on 05/08/2009

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erin, i take a stimulant which has helped alot with the tiredness that the meds give me. i was diagnosed with ADD---but i know that fibro can cause similar symptoms, so whether or not i really am ADD doesn't matter since the meds keep me from crashing-----most of the time. one psychiatrist told me that they use stimulants with people that are on narcotics to counteract the side effects of sleepiness.

doesn't the klonopin do the same thing for you as the xanax? i take the generic klonopin (clonazepam) for anxiety. it seems like they are double dosing you by giving you both meds---which could be making you alot more tired.

i take norco, soma, pristiq, clonazepam, vyvance (when i can afford it, generic amphetamine when i can't) armour thyroid, protonix, and caffeine pills. what i usually do is take 1/2 each of the norco, soma and caffeine for the pain. i used to take darvocet, but after my hysterectomy i went into such a bad flare that i have never been able to get off of the norco since.



i don't think i could work a full day, or even part-time if it was everyday, but i haven't worked enough to be able to go on disability---and i don't think i'm quite bad enough for it yet, because on a good day, with enough meds, i can function fairly normally if i take enough meds. my youngest is 5 1/2, though, and goes to kindergarten next year. i have teenage helpers to fill in the gaps. i'm glad you're going to get the break you need with disability. i keep thinking i should try and work part time somewhere not too demanding until i have aquired enough hours to be eligible for disability should i need it in the future.

Dawna - posted on 04/24/2009

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Hi ! I was diagnosed with fibro 9yrs ago along with Chronic fatigue, this was after years and years of awful tests to which all came back negative. They are still "Watching" me for MS, my diagnosis is "probable". Who knows! I have done everything they have told me to do including losing 65lbs, because of course initially all my problems were because I was fat. I battle with this stupid condition every single day, very rarely do I have a day without pain. BUT, I have been trying this new medicine - Lyrica which is newly being prescribed for Fibro. It has been a godsend for me. I am still in pain but the yucky symptoms of burning, numbness, tingling, crawlies etc... have really settled down. It won't work for everyone, but it's worth a try!

Caren - posted on 04/22/2009

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I was just diagnosed with fibro a few months ago, but probably have had it for a couple of years. I am taking Cymbalta nd occasionally Vicodin. I am a SAHM mom with 4 living children and my husband just lost his job. Both of my parents are deceased...I am a mess!!! I was diagnosed with depression after the birth of my third child and anti-depressants really worked for me. I have read that fibro can be brought on by a traumatic event. Anyone else heard that? My 5th child was diagnosed in utero with Down syndrome and passed away unexpectedly when she was 12 days old. I told you, I'm a mess :-) There are so many variables with this disease that it's hard to get advice because everyone is so different. I recently started exercising and am hoping that eventually as I build my stamina it will lesson the pain, but right now it has made it so much worse! My 2 vicodin a week turned into 3-4 a day.
Wow, do I sound old and cranky and whiney?! But I am so glad to have a place to vent and share and learn. We are all in a painful boat but hopefully we can help one another. I look forward to that!
Caren

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LaCretia Carolyn - posted on 03/23/2013

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I was just diagnosed this week with Lupus and Fibromyalgia. I also have Raynaud's Disease, Malar Rash, Inflammatory Arthritis, and a Pontine Brain Lesion. My Rheumatologist stated that the brain lesion was the result of a Lupus Stroke that I had July 8, 2011. I have tried working part-time off and on since the stroke but I continue to have seizures or strokes, unsure at this time, every few months. My last was February 25th. Prior to the onset of the illness, I had worked for over 20 years. I have two children and I feel that I am jeopardizing their well-being by being unable to contribute financially. I have applied for disability but I don't know if I will receive benefits. I find it very difficult to accept the feeling that I can no longer be a contributor to society. The pain, medications, and fear of strokes or seizures are just too much to risk being outside of my home. Is anyone else dealing with these feelings?

Cheryl - posted on 10/09/2012

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I know several living with Lupusand Fibro! And though everyone's journey is different, many of my family and friends have found healing in this ...mangosteen juice. Join me on this call to hear from others and make your own decision...if you hear something you would like to know more about...message me. This is an anonymous dial in number! No tracking and no sales...just listen.



http://mymangosteen.com/emails/MM36.html TONIGHT at 9PM EASTERN, info in the link!

Aunie - posted on 06/22/2011

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We all know Livestrong.com right? Read what this article says about Melaleuca's vitamins as for Lupus.
I know that my mother has Lupus and was walking with a cane, I introduced her to their vitamins and three months later she was able to dance the Mother/Son dance at his wedding. It was amazing. I have her facebook site if you want to ask her questions. Here is the website....

http://www.livestrong.com/article/331067...

Message me if you want to know more.....

Erin - posted on 05/07/2009

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I was at the doctor the other day and she ordered me to start my meds again. Not as many though. I'm also going out on disability at the end of June. 6 more weeks!!!!

Erin - posted on 04/29/2009

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Working is a struggle. I was taking 20 pills a day plus pain meds as necessary. I take klonopin, darvocet, ultram, and relaxin for pain, oh and xanax for anxiety. I stopped all meds because I can't think when I'mm on them and now having a flare up that exhausts me to walk from one end of the house to another. I've thought about filing for disability, but I haven't been at my job a year yet and don't want to get laid off during my leave. I'm just beat. My husband does most of the cooking and housework, so I'm really lucky there. I'm running out of steam to keep things going though.

Marie - posted on 04/29/2009

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People can see bruises and cuts, they can't see our aches and pains all over our bodies. I really feel sorry for the peole that don't understand or want to understand, and one day-- maybe they will be in our shoes and finally understand what we go through, I would never wish this disease on anyone, but sometimes when I am in so mch pain and no one will/can help me with my 2 yr. old, t does almost make me want to wish it on someone. Let's all hang in there together, support one another, cry on each other's shoulders, whatever it takes to be strong and united against this dreaded disease.

Christine - posted on 04/29/2009

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i don't know how you can work full time and then come home to two very young children!!! that is amazing. i keep thinking i need to work when i get my youngest in first grade, but i don't think i can work a full day and then come home and take care of my house and my family, too. i can hardly take care of those things and i don't work outside the home.

my hubby's sister was diagnosed with fibro as a child---but i don't think we are really dealing with the same thing, because she can get by with only tylenol 3 when she needs it. in fact, most of the people i know with fibro can take OTC meds----they don't even touch my pain. i take norco and soma and i've just had to increase the monthly dosage a small amount.

Mary - posted on 04/28/2009

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I have been living with fibromyalgia for since 98 and now am a mom to a six year old boy and a three year old. My mother lives with us and she is 74 years old and has major health issues. If it wasnt for facebook I would definately feel alone. I am 5ft 3 and weigh close to 200 pounds. I have horrible ankles so I need help in finding a exercise routine that will not effect my ankles. I need help with getting a diet started and exercise .. please I need any suggestions ..

Thank you all,
Mary

Christine - posted on 04/27/2009

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i tried neurontin because the doc said it was the closest thing to lyrica and lyrica was too expensive for me. it didn't do anything except make me really sleepy. i live on norco and soma and caffeine pills for pain---plus a bunch of other meds for other stuff.

Caren - posted on 04/22/2009

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I forgot to say that with all of this pain I miss my Mom!!! That was the point of mentioning my parents. I am the oldest child of three kids and the only girl. Sometimes a girl just needs to cry and neither my brothers nor my husband get that :-) Thanks for listening.

Jackie - posted on 04/21/2009

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i have suffered from fibro for 9 years now and fell like people dont take it seriously they just think i get a few aches and pains but when its on a daily bases it has really changed my life some days its so bad i can bearly drive and i fell so tired all the time.i have been on pain killers and anti inflamateres for years but even with those all my muscles and joints constantly ache

Mary - posted on 04/20/2009

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I had a heart attack 7 years ago and also 2 PE's in my lungs and am on heart meds and blood thinner. I was wondering if I would be able to take any of the new fibro meds with having these other conditions. The last doctor I went to for my fibro issue (a couple of years ago) said that there wasn't any fibro medications they could give me so to just keep taking the pain pills. I know people say to not take pain pills because they are no good for you. But, I cannot live without them. Nor do I ever want to try again. Has anyone who has these problems tried the new fibro meds?

Yvonne - posted on 04/17/2009

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I felt like I was going crazy at first (all in my head). It will be good to see what I can find out about fibromyalgia and share as well. Just diagnosised and had to quit work. Wondering what medications you take to help?

Jamie - posted on 04/17/2009

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i also have the fibro, besides to go with endometrosis, ibs, virticulitsis, just finishing getting hysterectmia, ...people cant see it so yes they believe we either are faking or dont have what we say...i also have chronic fatigue, and chronic back pain...so much fun but i keep on going...i wish there was a way to show people what we go through, so they can understand and not think they we are faking....

Catherine - posted on 04/16/2009

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That I think is the hardest part. We don't LOOK sick,ergo we must be faking right? That so makes me MAD.

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