Anyone else here have an autoinflammatory disease?

huanu
huanu Posts: 35 Member
edited November 18 in Introduce Yourself
I am back at it on here. I had lost over 75 pounds and was derailed when I began to be overwhelmed with pain and inflammation leading to bursitis. Ultimately after a while I learned I have genetic mutations causing an autoinflammatory disease called familial mediterranean fever. Now that I'm on meds and much of the inflammation is being controlled, I'd love to work on getting this weight off again. It would feel great to connect with others here who have the same obstacles! Please feel free to add me as a buddy here if you also suffer from an autoinflammatory disease!

Replies

  • Hamsibian
    Hamsibian Posts: 1,388 Member
    Hi @huanu! Sorry you're going through this, the positive thing is that you know what it is and it is being taken care of. I have Crohn's Disease - trying to gain weight, which is hard! Feel free to add me so we can motivate each other :)
  • huanu
    huanu Posts: 35 Member
    @Hamsibian thanks for the message! I will definitely add you :) I believe that the tummy symptoms with Crohn's is actually very similar to the tummy problems with FMF. Although thankfully with FMF, mine only last a few days during the flares. Ironically, I think that's what helped me keep some weight off for a while but since starting my meds and bringing the inflammation down, I'm starting to pack on the pounds much quicker because my tummy feels better. I won't complain though because I'd rather have this issue of weight gain versus the painful stomach flares! I hope you're feeling well! So glad to connect with you!
  • Hamsibian
    Hamsibian Posts: 1,388 Member
    I have never heard of FMF, but I will read up on it. Flare ups are the worst, I have been dealing with one since December 2015. Things are getting a lot better with meds and a specialized diet, but it's a slow process. I know exactly what you mean though, I worry a lot more about my energy and symptoms a lot more than my weight lol.
  • Sarc_Warrior
    Sarc_Warrior Posts: 430 Member
    I am a severe asthmatic that was recently diagnosed with sarcoidosis. Add me if you want.
  • huanu
    huanu Posts: 35 Member
    edited May 2017
    @indy_cruizer I've never heard of that! I had to Google it. It sounds pretty scary actually and also could really cause you many limitations with fitness, etc. Sorry you're going through this! I hope yours goes away! Can it disappear with time?? I hope so!!
  • LernRach
    LernRach Posts: 286 Member
    I have lupus and have been on and off chemo and predisnolone for years. I am now determined to get this weight off but with the constant health setbacks and then losing all the fitness i gain, its hard to maintain.
  • huanu
    huanu Posts: 35 Member
    @LernRach it is frustrating to battle an illness while also trying to battle the bulge! Two steps forward, one step back way too often! Feel free to add me on here! I'd love to have buddies who can relate to the ups and downs.
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    I have crohn's but currently in remission as I had a total proctocolectomy with end ileostomy 2.5 weeks ago (colon, rectum and *kitten* removal) so basically all my diseased parts. Just hoping that it doesn't attack my small intestine while I'm healing and can't be on biologics
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