Hoping my joints do not get gnarly from the swelling and pain associated with auto immune diseases
I have never written about my journey with Hashimoto’s (thyroid disease) or Rheumatoid Arthritis and Lupus. Of all the topics I cover regularly, it hasn’t fit into my editorial calendar. However, it’s on my mind a lot. I have been drafting a post about trying to follow the Hypothyroid Diet and how my joints are really aching. I hope a change in diet will change that.
However, I haven’t had the time to try the diet or write the post.
And now the pain has moved into my feet and is becoming worse. I am scared.
Chronic pain tends to over run your life.
But let me back up a little.
When I was 16 weeks pregnant with my second child, Jelly Bean, I began having a strange swelling in my hands. I know it was exactly at that point, because my co-workers convinced me to go see a doctor and they were unable to do any x-rays because I was 16 weeks pregnant!
A week or so later, I began having horrible pain in my knees and feet. Such terrible pain that sometimes when I stood up, I thought I might collapse. Climbing stairs was excruciating on my knees. And my legs started swelling.
I brought all of this up to my OB/GYN who laughed it off and just told me “You’re pregnant! Of course your knees are going to hurt and your legs are swelling!” I felt like an idiot for even bringing it up!
However, it did bother me that the pain was so extreme and that my legs and feet were swelling. I had not had any swelling during my first pregnancy, and I had not gained much weight by this point so I was confused as to why my knees would feel this way.
Fast forward the next 36 weeks. The pregnancy went fine (thankfully) and I delivered at 40 weeks. No issues with the baby, but the pain and swelling persisted.
Three months later, my knees were still swelling and the pain was so bad, I was terrified that I would drop my infant in the bath tub each time I stood up to take her out of the bath.
I could not squat down and play with my two young children on the floor.
I could not run after my almost 3 year old toddler.
I was miserable and only just turned 33! But I felt 83.
When I mentioned it to my mom, she encouraged me to go see my Endocrinologist as soon as possible. Yes, I see an Endo. Because I have had Thyroid Disease (Hashimotos to be precise) diagnosed at the age of 20. This is also an auto immune disease. No one told me they often “run in packs” until I began showing signs and symptoms of other auto immune diseases.
He immediately told me he believed I had Rheumatoid Arthritis and sent me to a specialist.
Looking back, I am still surprised that my OB did not ask any further questions, especially given the fact that when you google “joint pain” “swollen knees” and “pregnancy” – LUPUS jumps right out at you.
Turns out that I had the magic combination.
- A pre-existing auto immune disease.
- A very stressful job and life (I was also going to school full time to complete my Masters and I was chasing a toddler around in my free time!) and
- I was pregnant. Pregnancy matched with these other factors can trigger lupus and other issues.
So, I went through an extensive battery of blood work, physical exams, and questioning before it was determined that I definitely had more than one auto-immune disease. Trouble is, with crossover symptoms, it was difficult to diagnose RA or Lupus or other secondaries.
Therefore, my official diagnosis is: “non differentiated tissue disease.” I am being treated for Lupus and my thyroid disease but being monitored every six months in case more RA symptoms or (others) decide to add to the fun.
Recently the RA symptoms began resurfacing. The joints in my feet hurt and are swelling. My fingers are swelling. My body feels like I got hit by a truck for about the first 30-45 minutes of each day.
This does not make me happy.
Monday I will tell you about a resource I am using to help and why I chose now to bring up the topic!
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Victoria at Busy House Big Heart says
June 23, 2013 at 2:08 amI have Hasimoto too! I’m looking forward to your diet post. I might have to check my drug dose too, doesn’t seem to be helping any more. Or like you said, maybe another one of the auto immune disease pack member wants to play.
When I was pregnant with Alexander I experienced cholestasis (spelling?), the biggest text book symptoms are intense itching of the palms and the bottom of your feet.
My doctor at first just told me “well overweight pregnant patients…” I’m glad I told her I wanted the test anyway. Always follow your gut, you know your body better than anyone else.
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katbiggie says
June 23, 2013 at 3:00 pmSO TRUE. In fact, I just said that to someone else. Follow your INSTINCTS! As you said, you know your body better than anyone else. And if your doctor isn’t listening, it’s not like you can’t go find another one! I’d rather them think I was a hypochondriac rather than getting to the bottom of the issue!
Maribel says
June 23, 2013 at 7:33 amYou are so brave to tell your story about chronic pain and to share your experiences with honesty and sincerity in your blog. It’s amazing how we can go through so much pain and just push through it without finding out what’s really going on. Thank goodness your mother urged you to go to a specialist to get to the bottom of what was happening to you. I imagine someone out there will read this and be urged to do the same! I have a special interest in diets and how they help with illnesses, so if you try the Hypothyroid Diet, I’d love to hear how it works for you.
Fantastic read! Looking forward to following your story. Thanks to Ilene from Fierce Diva Guide for introducing us! I hope you have a beautiful Sunday and best of luck with your treatment! 🙂
katbiggie says
June 23, 2013 at 2:58 pmThank you Maribel. I wanted to talk about this long ago, but I have been dedicated to other things! If you only knew my mother, you would know if she thought I should see a doctor, Iwas definitely going! She is in the medical profession and when we were kids, we practically had to be on our death bed for her to think we needed to go to the doc! 😉 Plus, what she didn’t tell me was that a few months earlier, her sister was diagnosed with RA, and auto immune diseases are definitely hereditary.
I am glad Ilene connected us as well, and I hope I live up to your expectations! 😉 I will definitely keep you updated on the diet and any changes I notice!
Janine Huldie says
June 23, 2013 at 8:17 amOh Alexa, I had no idea and seriously so sorry that your doctor dropped the ball during your pregnancy with JellyBean. But just so glad you got diagnosed and hoping that you can get some treatments to make you feel a bit better now. Thinking of you and sending good thoughts your way.
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katbiggie says
June 23, 2013 at 2:54 pmRight?? Should have been a hint to me when they ignored that that I should have gone somewhere else during a high risk pregnancy the next time with the twins! Always, ALWAYS trust your gut instincts! Thanks for your thoughts!
Ilene says
June 23, 2013 at 8:45 amMy ex has RA so I saw first hand how it wrecks havoc on a life. The swelling and pain and fatigue were horrible for him. I can’t wait to read about the resource you are using to help – I hope it is giving you relief!
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katbiggie says
June 23, 2013 at 2:52 pmIt’s so hard to know how much fatigue is from the RA/Lupus and how much is because I haven’t had good sleep in so long due to little ones, but even when I do get good sleep I am still just so lethargic. I really dislike that element!
another jennifer says
June 23, 2013 at 8:54 amI am interested in hearing about how you are dealing with the pain. One of my clients has a therapy group called Living With Chronic Pain. They focus on the emotional aspects and alternatives to narcotics. I know how painful it was just to have regular swelling with pregnancy. I can only imagine what you are going through!
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katbiggie says
June 23, 2013 at 2:51 pmI had never even thought about being a group for chronic pain. So far to be honest I have just lived with it. Luckily when they got me on the Plaquenil, a lot of the swelling and pain went away, but I have had a lot of other issues, such as eczema all over and continued pain in my fingers. It’s been in the last three to six months that my feet have started having the pain. So i’m just starting this journey to see if weight loss, diet change, and maybe yoga or pilates or something like that (both a stress reliever and good for your body) will help.
Chris Carter says
June 23, 2013 at 2:32 pmOh Alexa!!!! I can’t believe you have to battle such physical suffering too!!! Oh hun, I am so so sorry!!! Praying for relief and hoping that your resources are providing treatment that helps!!! You are a walking testimony of strength, courage and faith.
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katbiggie says
June 23, 2013 at 2:48 pmYou are sweet Chris! it’ssomething that I have grown used to over the last 3 years, but it has changed my life and it is somewhat of a downer some days!
The Dose of Reality says
June 23, 2013 at 4:41 pmThat must be so hard, especially with having to do computer work a lot. 🙁 I am so sorry, but I am interested to read what you have learned tomorrow.-Ashley
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Marie Oliveira says
June 24, 2013 at 12:46 amI have a friend who had lupus and her doctor didn’t think it was lupus so wouldn’t order the test. She marked the box on her lab work herself (can’t remember what test it was). So sad that she had to do that but I’m proud of her for taking charge.
I’m so sorry you have to go through all this. My step mom has RA. Her hands are badly disfigured and she has had so many surgeries to replace joints. It’s such a horrible disease.
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katbiggie says
June 24, 2013 at 7:55 amWow, your friend is bold. I’m not sure I would have thought to do that, but good for her! It is sad we have to go to those measures sometimes! I hope she got a new doctor. I really hope that mine never progresses to disfiguration and surgeries. I was lucky that we caught it at early onset, and mostly put it into remission, but it always scares me when I have bad flare ups.
Tracy@CrazyAsNormal says
June 25, 2013 at 7:52 pmI have still not been diagnosed. RA? Lupus? Fibromyalgia? Ugh. I have another rheumatology appointment next month. Auto-immune diseases are stupid and flare-ups are stupid. But I know diet has a HUGE affect on it. And luckily I work someplace they are totally okay with me coming in a couple of hours late if it’s one of those days that I moving in slow motion. 🙂
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katbiggie says
June 25, 2013 at 9:11 pmIt’s just straight up annoying, isn’t it? Our bodies are crazy, for sure! I hate flare ups, but at least they usually calm back down when I modify whatever is contributing. Yes, I definitely see a correlation in how I feel with what I eat! You are lucky your work is so flexible!
Lady Jennie says
June 29, 2013 at 4:56 amOh, you have lupus on top of everything else? That is so hard! I’m sending you big hugs. I have friends who have it, and I know how careful they have to be about their diet. Courage.
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