Any other bees suffering with autoimmune issues?

posted 2 years ago in Wellness
Post # 2
Member
166 posts
Blushing bee

I have a few autoimune diseases: autoimmune hepatitis, endometriosis, primary sclerosis colongitis, graves disease. 

I’ve had to take pills since I was 12. It’s a lot to take in, but you’ll get the hang of it eventually. One thing that I’ve learned is that if you have one autoimmune disease, you are susceptible to more.

I’m so sorry you have to deal with this. Your fiance and family will help you through it!

Post # 3
Member
4253 posts
Honey bee
  • Wedding: August 2015

I have Crohn’s disease which is an autoimmune disease in the digestive tract.  I was diagnosed when I was 17, no major health issues up until that point.  It causes inflammation in my colon and causes abdominal pain, diarrhea, and gas on a pretty much daily basis.  I “came out” with Crohn’s to my family and friends in January 2016.  Many had no idea I was dealing with it until I came out because I would hide it.  I would find the lesser used bathrooms and I would say things like “oh I had a lot of water, going right through me!”.  Even some of my closest friends had no idea.

The support of family and friends with an autoimmune disease is critical.  My famliy has been there with me every step of the way, and now that the majority of my friends know too, they understand when I have to cancel social plans last minute, or when I just can’t leave my house.

I also live a very normal life.  I work at a job I love.  I am able to do the majority of things healthy people can do, I just watch my diet and make sure to take my medications on time.  I still have good days and bad days, and days where I am faking my way through it, but I make it work.  The more years I’ve had it the easier it is to cope.

You will learn to cope.  It definitely comes in time.  Good luck!

Post # 4
Member
34 posts
Newbee
  • Wedding: October 2017

I have lupus. I have been struggling to get diagnosed for a few years and have been to multiple rheumatologist and family doctors. I was misdiagnosed a few times too. I recently switched to a new rheumatologist and was quickly diagnosed with lupus and am on new medications to help try to get me back on track. I always thought that’s what I had but, couldn’t get a doctor who would actually sit down and listen to everything that was going on. 

Post # 5
Member
34 posts
Newbee
  • Wedding: October 2017

ljm308 :  eating right and taking your medication on are key. I couldn’t have said it better.

Post # 6
Member
498 posts
Helper bee

Sorry you’re going through this, but with the right mess you’ll feel so much better! 

I developed crazy pain and carpel tunnel like symptoms in my wrists at the age of 24. Was diagnosed with Rheumatiod Arthritis, and have been taking immuno-suppressant mess ever since. I feel a lot better now tho on them, and even better, my disease hasn’t progressed any further or done any more damage to my joints 🙂

Post # 7
Member
1607 posts
Bumble bee
  • Wedding: October 2016

“I guess I just want someone else going through this to tell me it gets better and I won’t have to keep pushing these chemicals and medications into my body forever”

It will get better. You will figure out the right medications and your triggers and self care and be able to manage your arthritis better. But it will take time so patience is key. I can completely understand. I write this from bed because I’ve felt too horrible to get up for the last several hours. 

But as for the second part of the question above….no, no one can tell you you won’t have to keep taking medication. RA (among other autoimmune diseases) is not curable. Only manageable. Your body may decide to go into remission. That does happen and would mean you won’t have to take medication. But it’s not common. Most likely you will have to take medication of some sort for the rest of your life. But the alternative is that the disease will progress and result in permanent and potentially severe damage. Trust me, medications are better than that. I know mtx kinda sucks. Make sure you are taking folate supplements and the injections are easier on your stomach than the pills. Humira seems to be really great for many people, so the fact that you are starting that could be really good for you. If it doesn’t work, there are other biologics out there to try. 

What you said about being healthy one day and sick the next, that’s pretty common. Autoimmune diseases have a tendency to suddenly appear like that. I am part of several support groups on Facebook. I suggest you find something similar because it can be very helpful hearing other people in the same boat as you. Also, they might be better able to answer your specific RA questions than weddingbee which is more general. 

Post # 8
Member
870 posts
Busy bee
  • Wedding: June 2017

Look into the Autoimmune Protocol. Basically, it’s dietary changes to remove inflammatory foods from your diet. Yes, it may seem drastic, but if it works, and helps you feel better, then it may be completely worth it.

Post # 9
Member
4253 posts
Honey bee
  • Wedding: August 2015

chocochai :  +1

I actually didn’t manage my Crohn’s for about 3-4 years.  I didn’t go see my GI doctor and I didn’t take my medication routinely.  And you know what?  I felt the worst I have ever felt.  My inflammation got to the worst it has ever been.  That was spring of 2015, just a couple months before my wedding.  It had steadily gotten worse and worse and worse when I wasn’t consistently taking my medications.  I went to have a colonoscopy 12 days before my wedding, and they couldn’t get the scope where they needed to go because of all the inflammation and I had to have a gastro MRI that same day.  If I had waited any longer I would have had a bowel obstruction.  I am currently on Humira and a pill which suppresses my immune system.  I don’t like that I have to take medications every day and I don’t like that it beats down my immune system…BUT I feel better than I have in a long long time.  Your health and feeling better is more important than anything else.

Post # 10
Member
97 posts
Worker bee

I suggest looking into “The AutoImmunie Solution”by Dr. Amy Myers. Dr, Myers is an MD, a functional medicine who has an autoimmune illness herself. I have been following her protocol while working with a naturopathic Dr. It has improved my symptoms by 90% over the past five months, enough to be able to feel like exercising and being physically active again, which I had not been able to do for a long time. People may have different results, depending on their illness and other factors. Wishing you well.

Post # 11
Member
1607 posts
Bumble bee
  • Wedding: October 2016

OP, the autoimmune protocol diet that MsArt :   letsdothisthing :  both mention is pretty good. You can google The Paleo Mom for more information. I’ve tried it and found some help but definitely not enough. Some people definitely do get some relief from following it, and it seems like trying to find natural ways to deal with your illness is a common reaction for people newly diagnosed. Every body is different. I know others with RA who find that a vegan diet works well for them.

Regardless, as I mentioned above, it is unlikely your body will go into full remission. Medications are required to slow/stop the progression of permanent joint damage. Do not stop medications without a full discussion with your doctor about the potential risks. Discuss it with people who have had RA for years, and see what people say about delaying medication and the permanent damage they have suffered.  

If you are able to manage it naturally, that’s fantastic. But that seems to be the exception not the rule so use caution. 

Post # 12
Member
870 posts
Busy bee
  • Wedding: June 2017

chocochai :  Agreed! Diet may help some, but most likely meds and other therapies will most likely have to be utilized as well. It’s one of those things that YMMV, rather than a rule.

Post # 14
Member
1607 posts
Bumble bee
  • Wedding: October 2016

MrsCoffeeSnob :  feel free to pm me if you have any questions or want follow up to what I wrote. 

Post # 15
Member
210 posts
Helper bee
  • Wedding: January 2015

mrsteacherlady :  Hi fellow Lupie! 

MrsCoffeeSnob :  I have Lupus and lemme tell you, it sucks! I also have Hashimoto’s Thyroiditis and Fibromyalgia as well, so that’s like the triple treat from hell. Some days I feel like the walking dead and can barely move, and it caused me to give up my career a bit sooner than anticipated. I still try to volunteer regularly and will freelance on occasion when my body permits. 

The best thing you can do is make self-care a PRIORITY! 🙂

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