Invisible Illness struggles - looking for others like me

Options
arsenaultmom
arsenaultmom Posts: 3 Member
in Introduce Yourself
Hey there everyone!

I am a 30 something mom to two beautiful daughters. I currently struggling with a condition called Postural Orthostatic Tachycardia Syndrome or POTS or dysautonomia in general. Plus an unknown condition holding up my recovery back into remission for my POTS. My last relapse is almost hitting the 850 day mark and has taken a toll on my body and my weight. I gained close to 30 lbs with trying different medications and diets without being able to move beyond a sitting/laying position. Now 2 1/2 years later I have learned what I can eat and not eat and what medications work and I have lost my first 40lbs last year but I know the next 40 + lbs will be a struggle as I am limited to what I can do for exercise and unable to get to a local gym for daily training.

I may look healthy (besides being overweight) from the outside but inside me is it is a struggle with pain and fatigue each day. I am looking for other to help support myself and them in our struggle to do this together. I am willing to support others too as everyone needs that extra push but I understand that getting 30 minutes of actual workouts a day can be a struggle most days.

Lets see what this year brings.

Replies

  • NikkiWalt
    NikkiWalt Posts: 1,326 Member
    Options
    Hi!

    I know how difficult it can be to deal with an "invisible illness". My hubs has MS and so many days he looks fine, but has so many things wrong. It's a difficult road to say the least. He has to be very careful about exerting too much energy, as it could cause a relapse.

    I know you can do this - you're strength shines from your words. Add me if you like, I can always lend a supportive hand.
  • crystalmshultz
    crystalmshultz Posts: 5
    Options
    My mom has fibromyalga, and it is a constant struggle. Best of luck to you in your journey.
  • alerica1
    alerica1 Posts: 310 Member
    Options
    My heart aches for you. Both of my daughters have illnesses that only we and their doctors know about. My oldest (she's 24) has Wegener's Granulomatosis and my youngest (she's 18) has Sjogren's Syndrome, Lupus, and Juvenile Rheumatoid Arthritis. It tears me up inside knowing in so many ways they have limitations and their diseases can't be seen. Support can also be limited. I will keep you in my prayers.
  • hopefuldoll
    hopefuldoll Posts: 2 Member
    Options
    Hi arsenaultmom,

    I have medical conditions too that make it difficult to lose weight as I am on injections and medication that don't make it easy to lose weight so I really understand where you're coming from. I just joined here and would love to give you support so you can add me if you like. Can I add you too?
  • tidesong
    tidesong Posts: 451 Member
    Options
    I understand completely. I have MS (without mobility problems yet, knock on wood), fibro, pelvic floor dysfunction, IBS, and several other things that you can't tell by looking at me but affect me greatly. Feel free to add me. (You, or anyone else.)
  • lizsmith1976
    lizsmith1976 Posts: 497 Member
    Options
    I don't know how much advice I can give, but I can certainly be supportive. I have an autoimmune disorder that causes my immune system to attack any mucous membrane tissues. It also causes me to occasionally lose weight rapidly, get fatigue, exhaustion, etc. The symptons are all internal or hidden by clothes, so like you, it is not obvious that I am "sick". Plus, physical activity is fine as long as I am not overdoing it and getting enough sleep. I'm a crazy active runner & triathlete so most people think I am "never sick" and completely healthy. It's frustrating sometimes when I know how great the pain is that I'm feeling and can't share with anyone.

    My biggest outlet is riding in the MS 150 bike rides and raising money for that autoimmune disorder. Mine is fairly rare and not well-known.

    Good luck this year with the next 40 pounds. Feel free to add me for support :flowerforyou:
  • angmarie28
    angmarie28 Posts: 2,814 Member
    Options
    First off sorry to hear about that
    second, I get vertigo attacks, they sdtarted during my 3rd pregnancy, out of no where everything starts spinning and they have lated anywhere from 10 minutes to 5 days. i used to get them every week, then they went away for 1 1/2 years then came back and I was having them twice a week for 2 months, then they stopped again for another 1 1/2 years, then i got one at my sons Dr. appt about 3 months ago and havent had one since so they come and go, but I am dizzy alot, I cant do fair rides, even the marry go round makes me want to puke. i cand spin more then one circle around without getting sick and I get light headed very easily, I cant even turn around quickly. I have been to many doctors and had many tests and no one can figure out whats wrong.
    then back in november, everything i ate or drank made me bloat and look 9 months pregnant then id get diarrhea, i lost 12 lbs in 3 weeks and looked like a pregnant anarexic person, went to the doctor and they couldnt tell what it was except i possably have crohns, but it seems to be clearing up now, 2 months later.
    add me if you like
  • arsenaultmom
    arsenaultmom Posts: 3 Member
    Options
    I have a daughter too with general dysautonomia and Ehler-Danlos- Hypermobility. It is a struggle as she looks normal from the outside but is in so much pain in the inside. She struggles just like I do get out of bed each day but does it with a smile. Thank you for sharing!
  • 3foldchord
    3foldchord Posts: 2,918 Member
    Options
    Feel free to add me. I struggle with Chronic Fatigue, a latent virus, chronic migraines, and hypoglycemia. Some days are good. Somedays I barely leave my bed.
    I have been having slightly less CFS and hypoglycemic episodes since getting regular exercise and eating better.

    Good luck in your journey! Ypu can do this!
  • arsenaultmom
    arsenaultmom Posts: 3 Member
    Options
    Thanks everyone! I am glad I am not here alone with the struggle of unknown or rare conditions. POTS may not be rare anymore (just got off the rare list a year ago). I will be adding friends as I go. Thank you for sharing your health struggles with me. Lets see what this year brings us.
  • NinaSymone
    NinaSymone Posts: 4 Member
    Options
    I have Sjogren's and Fibromyalgia! I recommend this book for those of you who are struggling with invisible illnesses! It has been a god send! It is called Stopping Inflammation: Relieving the Cause of Degenerative Diseases by Nancy Appleton,PhD. It is available on Amazon.com.
  • NinaSymone
    NinaSymone Posts: 4 Member
    Options
    I stopped eating processed foods and staying away from foods that are GMOs. 90%'of the foods sold.in regular grocery stores are Genetically Modified Organisms! Try to buy organic as possible and cook your own food. For those of you struggling with autoimmune diseases like lupus,MS,Sjogren's,Fibromyalgia, etc watch out for shade vegetables, including white potatoes, pimiento, Cayenne, eggplant, and tobacco. These plants contain solanine, which can be toxic if not destroyed in the intestine.Milk,wheat,eggs,meat, and coffee have been to cause Fibromyalgia symptoms! If you have OA symptoms stay away from wheat, nuts spices, corn, syring beans, chocolate,fish,citrus fruits, cheese,milk,yams, peaches, iodine containing foods (onions,turnips,sea weed), pears, and artichokes, all caused OA symptoms!

Categories