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Old 08-23-2011, 02:15 PM   #1
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Unhappy lupus myositis

hi first time on message board having suffered for over 33 years with lupus now i have got myositis having lot of pain in arms and legs ,finding everyday activitiys hard, legs feel like they weigh 10 stone each! can not take pain killers because of stomach problems feel down at moment try to remane positive but hard when just to get out of bed a stuggle.has anyone else got lupus/myositis feel only one at moment.i

 
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Old 08-13-2012, 02:01 PM   #2
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Re: lupus myositis

Hi, I just got diagnosed with PM and have had lupus for 30 years. My previous elevated CKs were totally ignored by my rheum, which really makes me mad. I am trying to figure out if I HAVE to have a muscle biopsy when my EMG shows it clearly. I don't want to go thru more pain just as an academic exercise for my Dr to prove something. Will do it if it makes a difference to my treatment. Now my kidneys are declining after having no kidney lupus involvement for 27 years. I wonder if myoglobin from the PM muscle breakdown is affecting my kidney function. Anyone else have that issue going on? Oh, my, it's just one thing after another. Gets discouraging.

 
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Old 10-22-2012, 05:40 PM   #3
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Re: lupus myositis

Ladybud, I had a muscle biopsy 2 weeks ago and it wasn't that bad. I was sore for one day and fine after that. They gave me Tramadol for pain and I never needed it. It definately was what told my doctor that I had PM.

 
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Old 10-23-2012, 08:46 AM   #4
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Re: lupus myositis

Thanks for the encouragement! Did you have biopsy from arm or leg? My Dr said the incision would be about 4 inches. That seems rather large for a little snip of muscle. Maybe I will do it, just hate to have more scars, as I have enough already!

 
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Old 10-23-2012, 10:11 AM   #5
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Re: lupus myositis

Ah, they are talking and open muscle biopsy for you. Different horse of course. Mine was done by needle biopsy, with the incision 1/2 inch. Used 2 steri strips to close and some strong clear tape like packing tape that stayed on for 10 days. But it told them what they need to know.

I understand your hesitation, dear, and I pray for your peaceful discernment. Good luck.

 
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Old 10-24-2012, 07:41 PM   #6
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Re: lupus myositis

hey, on the roller coaster, i have mctd, and on treatment muscle weakness is very defined havent had muscle biosy yet my mom had poly so, guess thats were its going keep strong, keep smiling just wanted to let you know your not alone in your fight, i have learned that mctd is becoming more prevelent then cancer, and not as much research is done, they havent learned anymore than they knew in 1972 when they had my mom on so many steriods it distroyed her, well they didnt know what they know now as they dont put people on those high doses, anyway learn all you can an be your own advocate, just posting makes me feel like i am contributing in some way. Hope this helps someone.

 
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Old 10-24-2012, 09:00 PM   #7
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Thumbs up Re: lupus myositis

glad someone is reading, thank you ladybug, hope all is well with you

 
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Old 10-25-2012, 04:53 AM   #8
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Re: lupus myositis

Please excuse my ignorance. What is MCTD?

 
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Old 10-25-2012, 08:12 AM   #9
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Re: lupus myositis

mctd is : Mixed Connective Tissue Disease

Mctd is a entity/now known to be a disease of its own, ones thought to be just a combination of symtoms, ie Lupus, Scleroderma, Raynauds, no set diagnosis hard to dx because it has so many symtons of *** these dx, If you have Mctd you have overlaps of other auto immune diseases, it is ver complicated, hense hard to dx, find a good rheumy and know that it is not in your head for example, I have Raynauds white fingers/feet very senstive to cold they get so cold i sometimes where 3 pairs of socks and gloves at *** times, my skin ankles to just above knees with terrible rash this is apprently my skin tightening and thicking around my joints I am tired and easily fatiqued now i also have lupus rash on face, forhead, I have purple eyelids and swell up for what ever, i am newly dx so they have started me on predisone and i have high blood pressure which is sineque of MCTD and Interstitul Lung disease which goes hand hand apprently.. will keep you posted hope this info helped if you want to learn more go to medscape.com just type in and read, hope you are well must try to do something today besides bed is nice out going to sit outside, keep smiling and laughing it is the best medicine. almost forgot you also have polymyositis which is weak muscles not fun!!! hard to walk, or do things like reaching into high cupboard or getting up from the sitting position hands are real stiff and swollen and curling up, very weak cant open a thing anymore ....unbelievable Have a great day!
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Old 10-25-2012, 08:29 AM   #10
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Re: lupus myositis

This is excellent information, dear, thanks. I have Raynauds, badly in my feet which turn, white, purple and red. They changed me from my beta blocker to a calcium channeler, but my heart rate went bonkers so now on both. Just keeping them covered now. My hands are just starting to turn colors when cold, like it is spreading.

I am supposed to see a pulmonologist, even though my pft came back ok. Because I can't walk, talk or do anything without getting out of breath. Even just sitting and getting excited makes me cough and breath hard. I can't sing in Church anymore, just don't have the umphf to get the words out. My mom and 4 of her siblings died of pulmonary fibrosis. My dad died of COPD. I re***y hate the thought of dying like this. I'm only 59. I'm scared.

I don't get the purple coloring on my face but I get this horrible itching and flaking that turns into lines of raw skin, especi***y on my eyelids and nose area. Rheumy says I have the malar rash, but not lupus. I'm so embarrassed by the way my face looks but I use Desonide on it to no avail.

I'm so tired sometimes - I want to lay down and not wake up. But, I have 29 grandkids, 3 greats that I love dearly, so I keep going to work, and getting up.

I hope you have a good, pain free day. It is so good to talk with someone who knows where you are coming from.

 
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Old 10-25-2012, 10:05 PM   #11
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Re: lupus myositis

thanks, glad it was informative some night when im feeling better and not so tired I will tell you more as i did shorten the information. Sounds like you have a good doc and are in control you know we are the same age,,,,i dont have that many grand babies though,,,wow,,,,they are what living is all about....have a great weekend and happy halloween,,,, ttys
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