Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
I have a problem, and it's really not enjoyable.. before I landed in the hospital 2 years ago and started getting IVIG, when I was sick, I had wt loss with the muscle weakness and some GI issues too... Everyone thought I had post partum Hyperthyroid, as I had tachycardia and wt loss, etc..
anyhow I had Extreme hunger!! I mean, I would eat six or 7 meals a day, eat at midnight, wake up at 4am to have another meal and wake up at 7am starving.. I mean starving to the point of awful nausea.. (like the beginning of pregnancy, but worse).
I am late on my IVIG, and am STARVING again! I've been doing nothing but eating all day.. I'll feel full and then 10-15 minutes later I am starving.. I loose weight too... anyone else have this?? It's miserable!
I get IVIG tomorrow, so should be better soon - but I just keep thinking - they are missing something to this whole puzzle!
anyhow I had Extreme hunger!! I mean, I would eat six or 7 meals a day, eat at midnight, wake up at 4am to have another meal and wake up at 7am starving.. I mean starving to the point of awful nausea.. (like the beginning of pregnancy, but worse).
I am late on my IVIG, and am STARVING again! I've been doing nothing but eating all day.. I'll feel full and then 10-15 minutes later I am starving.. I loose weight too... anyone else have this?? It's miserable!
I get IVIG tomorrow, so should be better soon - but I just keep thinking - they are missing something to this whole puzzle!
Listen to your body for a bit and ask the doctor to check labs again to see if there is something else to this...
My best to you, Shawna
I eat several small gluten-free meals daily. I get very hungry too. I have gained weight in my trunk area due to muscle weakness. I have found that I am dehydrated a lot, so I drink gatoraid and V8 juice. I do not think my intestines absorb nutrients very well. I do take vitamins.
I do think doctors are missing many things to the DM/PM puzzle. GI issues are part of the puzzle too. I look forward to the day when someone figures out what causes a flare. There is a lot of work that needs to be done on our disease.
I think Shawna is correct in asking the doctor to check labs. The bloodwork will point to the next direction on who you could see to help.
Keep us posted.
I recently joined the Lupus forum, where one poster claimed that many autoimmune diseases are a result of poor digestion and our bodies starving for nutrition. She posted links to several medical studies verifying her comments. So recently I have been working on my digestion, and feel some signs of improvement.
Bny806, thanks for posting this.
When I first got sick people coudln't believe how much I was eating.. especially since I looked awfully thin.. I didn't make the most intelligent choice- as I kept breastfeeding my son (he was 6 weeks old when I started getting sick).. I wanted the best for him.. so, one day I pumped out water (sorry tmi).. 16 oz.. and realized i was severely malnourished (I think i have malabsorption)
I do fine when the IVIG is kicked in.. but when it wears off, its pretty miserable.. I have had endoscopy/colonoscopy etc (my sibling has crohns)..
I have been very strictly gluten free for over 2 years now.. when I get even a little it seems to affect me big time..
I also feel like my belly is big - due to weak muscles ( i used to have a six pack and now I can't even suck in my gut, the muscles are too weak).. blah!
It's all better thanks to IVIG.. but I do wish they could figure out exactly what all this is from!