Brides with Rheumatoid Arthritis, I need your encouragement & advice!

posted 7 months ago in Emotional
Post # 2
Member
637 posts
Busy bee
  • Wedding: June 2007 - City, State

I don’t have rheumatoid arthritis, but I do have psoriatic arthritis as a side effect of celiac disease.

2 years ago I couldn’t be on my feet for any length of time, pre diagnosis. The pain in my feet and ankles was so bad! I also had pain in my hands and elbows. They tested me for RA as well.

The other day my husband was reorganizing the garage and i found the foot massager he bought me. And it flashed me back to when I had such terrible pain in my feet and ankles and used it every single day (I was asking him to rub my feet constantly as well). 

The biggest thing for an inflammatory autoimmune disease, in addition to whatever your rheumatologist prescribes, is changing your diet. I highly suggest you start researching this. I’m biased against eliminating gluten and limiting dairy and red meat because I know it works. Diet will make the biggest change in your pain and inflammation levels. I have a friend with RA who kept flaring and found significant relief after eliminating gluten and most grains. You have to connect that your immune system is in your gut, and your gut is compromised, and obviously food is going to affect that. Many autoimmune diseases also go hand in hand. It’s not something you ever truly conquer, it’s a journey not a destination, but you can make your life mostly pain free and enjoyable. I’m sorry you’re part of the autoimmune club. 

Post # 4
Member
710 posts
Busy bee
  • Wedding: September 2014 - Jacksonville Inn

I was diagnosed with RA 5 months after my wedding, but I was having symptoms throughout the wedding planning process. I second having a good hard look at your diet and learning about AIP diets, it really does help. I’ve also learned that when I am under stress or in a bad mood my pain is much worse. Realizing that has helped me to work through negative emotions or situations much quicker than I did before RA. I would recommend looking at compression devices, such as fingerless gloves. When my hands and fingers are acting up the compression is very helpful. 

Before I started seeing a rheumatologist my PCP had started me on a 3 week steroid taper because my sed rate was 100. He was very alarmed and made an urget referal to rheumatology, so I got in fairly quickly. My rheumatologist has treated my RA very aggressively these past 4 years, which has helped immensly. Just be very open and honest with your physician, there are many treatments for RA so speak up if your medications aren’t helping. 

In terms of your wedding and honeymoon I would just recommend trying to plan on taking very good care of yourself. Rest when you can, eat well and try to minimize stress. When I travel I tend to flare up. I always travel with a collapsable cane, just in case. I also give my self an exta day or two to recover after traveling, because it really is very difficut on me. 

Post # 5
Member
207 posts
Helper bee
  • Wedding: November 2018

I’m sorry you’re going through this.  I don’t have RA, but similar symptoms from the umbrella of autoimmune issues.  LIke PP mentioned, the biggest change and benefit I’ve had from pain relief is changing my diet.  I kept a meticulous food journal for a while, tracking every bite and symptom.  Eliminating foods like wheat/gluten, dairy, and soy helped me, in addition to limiting the amount of sugar and alcohol, so essentially going paleo.  You’ll also become more in tune with which foods make you feel better (for me, it’s bone broth and matcha tea, not together though, haha).  Getting plenty of rest and giving yourself time to decompress is essential.  Someone mentioned compression/support, I’d second that, also a heating pad.

Re: comfort on wedding day, I wore wedge sneakers for the majority of the day, and they were a big hit!  

Words of advice: enjoy your day!  and don’t stress the small stuff leading up to it 🙂

Post # 6
Member
637 posts
Busy bee
  • Wedding: June 2007 - City, State

jupiterbee :   gmj401 :  I second soy. It’s become so normal for me that I forgot we don’t eat it. But beware it’s in EVERYTHING and in so many different forms 😱

Post # 7
Member
637 posts
Busy bee
  • Wedding: June 2007 - City, State

gmj401 :  here’s a testament to inflammation and food: I ate cream cheese and eggs last night (I usually only eat butter and half and half in my coffee only) and I never eat eggs. I had such horrible back pain last night and this morning my hands are so swollen and my joints hurt. 

Post # 11
Member
710 posts
Busy bee
  • Wedding: September 2014 - Jacksonville Inn

gmj401 :   I don’t think it’s possible to always be pain free with RA, as it is a progressive disease. I’ve accepted that I will likely have some degree of pain everyday of my life. I do my best to minimize that pain. I’ve taken many TNF blockers (Humira, Cimzia, Enbrel) and they all worked for a little while, but eventually stopped helping. I seem to respond better to medications that do not target tumor necrosis factor (TNF). Right now I am taking weekly Actemra injections and weekly methotrexate injections along with daily anti inflammatory medication.  When I have a flare my rheumalogist will give me a steroid injection and that will usually calm my flare down. All that being said, most days I have mild pain. On that days when my pain is more intense I take hydrocodone at the end of the day (unless it’s a weekend, then I can take it whenever I need it). There is a huge stigma attached to narcotic pain medication, but many RA patients eventually need to take them). When I’m in a flare other methods I use to control pain are: hot baths with epsom salts, icy hot rub on my joints, compression gloves or socks, using a heating pad, and extra rest. In the summer I always have a cardigan with me, as air conditioning and cold is a huge trigger for me. You’ll learn over time that methods that help you control pain, along with what your triggers are. 

Post # 13
Member
207 posts
Helper bee
  • Wedding: November 2018

gmj401 :  With any health issue, there’s a wide spectrum of symptoms and progression.  I have a friend who was diagnosed with RA in her 20’s, and she’s now in her 40’s, and it’s very well controlled.  She’s super energetic and jetsetting around the world all the time.  As long as you regularly see your doctors, they’ll be able to follow your labs and signs/symptoms and make adjustments as necessary.

Re: food changes, the elimination part took a while for me to feel better, probably a few weeks.  I remember thinking, ‘gosh this is silly, the blood tests show that I’m not allergic to gluten/wheat, milk, and soy, what am I doing?’  I was willing to try it, and I’m so glad that I did, because the difference was night and day.  After the elimination part, getting rid of the inflammatory toxins and allowing your gut to heal, you can start re-introducing foods, and you’ll find what works pretty quickly.  If the item doesn’t agree with me, I can now notice it (swollen eyes, itchy skin, hands burning, joints aching) by the end of or shortly after the meal.  Another thing to keep in mind and experiment with later on is the amount of (fill in inflammatory food).  You may find that you’re totally fine with a small slice of foccacia, but that the croissant makes you feel terrible.  For me, eggs and nightshades (tomatoes, eggplant, peppers) are totally fine, so are nuts/seeds, and vinegar is helpful too.  

Take care of yourself!  You know your body best.  This stuff seems super scary, the uncertainty of things, etc. but remember that plenty of people live normal lives with this.  🙂    

Post # 15
Member
958 posts
Busy bee

gmj401 :  hope you’re feeling better and get to see a good rheumatologist.

 

I was diagnosed last September after a few months of pain. It just started suddenly to the point of bruised toe joints and swollen wrist. Physically, i am feeling better. I’m currently on sulfasalazine. Plaquenil gave me rashes and my rheumatologist is not keen to prescribe the other DMARDs as we might have children and she doesn’t want me to have the risks of birth defects should we have kids. She’s tapering down Prednisone to see if sulfasalazine is helping to reduce inflammation. So we shall see.

I agree with other bees that food seem to play a role in how I feel. We try to have as much gluten-free food as we could. AIP recipes are helpful. I can’t resist a good piece of bread and noodles, but have to do it moderately. Ginger and tumeric are good anti-inflammatory spices. There are quite a bit of recipes out there focusing on healthy eating.

I do need to start exercising regularly to be honest. According to everybody, it will help.

It put a lot of strain to my relationship as i was bogged down with what life could have been. My SO has been totally supportive but my emotions are low at most times, with everything else, we decided to postpone the matrimonial mass and celebration which was meant to be across the pond (we moved over last year for jobs). I’m still upset but I know it’s for the best.

Big hugs xx

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