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TOPIC: is anyone out here with lupus and fibromyalgia?

is anyone out here with lupus and fibromyalgia? 2 years 7 months ago #55965

  • bjjazzy
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that is me, i have fibromyalgia, mild lupus, osteoperosis, OA, and hypothyroidism. anyone with these can hit me up or reply to this post, if they want to talk about these, or have questions or concerns about these diseases...fibro, raynaud's, lupus, sjogren's, hypothyroidism, endometriosis, they all go hand in hand( actually all part of the same disease/disease package)

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is anyone out here with lupus and fibromyalgia? 2 years 6 months ago #55974

Hi bjjazzy, I have Fibro & Osteoporosis and have had them a very long time and know and understand quite a lot about them. I have also had endometriosis a long time ago (when I was 21yrs old) and had to have a full hysterectomy due to the severity of it. I wouldn't put Endometriosis under the same umbrella as the others as that is a gynaecological problem.

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is anyone out here with lupus and fibromyalgia? 2 years 6 months ago #56121

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yes, i too had endometriosis and had to have a hysterectomy. i read online that a lot of people that had endo later get fibromyalgia, lupus, allergies, hypothyroisism, of course the osteoperosis comes from having it removed so early and not getting enough calcium and replacement drugs. i was starved of replacemnt drugs for 12 years before i finnally found a decent doc to give them to me, and then when they did they found undiagnosed hypothyroid, so they put me on those drugs and then my hormone replacemnt therapy drugs. then they get all the symptoms that dcome with fibro, the irritable bowel, sleeplessness, and some, but not all get Raynaud's , i ended up with that so i have to leep my hands and feet covered good when it is cold. i double my socks, otherwise we could lose toes and fingers. then 3 years ago i got Sjogren's the dry mouth and eyes, and throat. my tongue gets cracks, and my teeth constantly get cavities so i have all my teeth crowned from it, wear shaded galsses for the light sensitivity, and this year they cauterized burning both my tear ducts totally closed, the plugs kept falling out. you have to watch out the eys don't dry too much or the cornea can become scratched after a while and you can go blind, so a lot of drops have to be added alll through the day, along with the burning shut, the burning keeps the tears from leaving the surface of your eye so they don't go into the ducts. then my feet collapsed and i have to wear splints in my shoes and buy the expensive orthopedic kind. and now the last 3 years i been getting repeated infections in my lungs and catch everything that goes around. i am sick most the year off and on with those, had to have pnemonia and flu shots a lot. i can only walk sit, or stand in 15 to 20 minute increments, shifting all the time. if i go to places like the zoo and museum, then i rent the wheel chairs there. i still can drive but i don't travel very far for it hurts to sit in a car long or i get cramps. then when i was younger in college my sister was in an accident where i got whiplash and hit the windshield and now i have herniated disks, numbness goes down my arm and i need surgery but because i am allergic to the anesthesia and all pain meds, i can't get it. then this winter, i slid on the ice, and whiplashed agian, my same neck again...so now the pain started up worse than i had it already. i am now so so carelful about my every move and how i move so as to try to avoid parylis happening. everyday i have to do excesises to rotate my arms, neck, fingers. and when i am on the computer when the cramping happens, then i have to stop a while till everything comes back agian and go back to it later. some days i do my art and music, but when i have the pain and the cramping, i don't even want to look at my pencils, sax, or computer. it is hit and miss with my days. and i know you probably are like that now too. now my rhumy is keeping an eye out for me on more connective tissue diseases evolving, and my internist is keeping an eye on my high glucose levels because my whole family had diabetes too. my sister has hypothyroid like me but not all the diseases, but she had breast cancer and is close to becoming diabetic now too, and my mom had breast cancer and already is a diabetic. my dad has diabetes and is now an amputee and already had two heart attacks and a minor stroke, and my aunta ncousin bothe had to breast cancer....so now...my entire family is serverely sick, all of us ecxept my other sister.

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is anyone out here with lupus and fibromyalgia? 2 years 6 months ago #56125

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here are some fibromyalgia posts i posted today












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is anyone out here with lupus and fibromyalgia? 2 years 6 months ago #56126

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here are some fibromyalgia posts i posted today












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is anyone out here with lupus and fibromyalgia? 1 year 4 months ago #60789

I also have fibromyalgia and i just got diagnosed with Hypothyroidism.I have been reading that some people actually don't have fibromyalgia and the achy joints etc is from the thyroid issue.how long have you had the thyroid issue? did you feel any better after taking the medicine for it?

thanks
katherine

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is anyone out here with lupus and fibromyalgia? 2 months 1 week ago #64657

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I've had fibro for about 27 years. I do not at this point have a dx of lupus, but there is something autoimmune going on. My labs for my ANA and for thyroid are always "borderline". I have a lot more pain symptoms than fibro should account for. I've heard it can take months or years for a final dx of lupus to happen. There is a possibility of autoimmune hepatitis as well. May be looking at a liver biopsy later this spring. I had a bone scan earlier this year and I have some areas of arthritis as one would expect at the age of 59, but my spine was the worst. The whole thing lit up like Christmas on the scan and I have lost 1/2 inch of stature in the last year.

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is anyone out here with lupus and fibromyalgia? 2 months 1 week ago #64660

Hi Jana, I have Fibro on top of all my other problems and it's causing me to have extreme aneima at the moment that is making me feel totally washed out and feel very tied all the time. But after talking to my G.P yesterday she said I've been aneimic for the last 12 months and it fluctuates between mild to extreme. So I'm feeling for you.

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is anyone out here with lupus and fibromyalgia? 1 week 1 day ago #65260

I have fibro and CFS and POTS... also been told i have raynaud's, but I dont think so since I dont have the classic symptoms

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is anyone out here with lupus and fibromyalgia? 1 week 18 hours ago #65270

Yes I suffer with Fibromyalgia as you can see from the post above yours!! :)
The following user(s) said Thank You: racheymarie

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