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About three years ago when I was first diagnosed with RA, I met a variety of people who told me that going gluten-free might “cure” RA. I didn’t put a lot of credence in their theory. It just didn’t seem possible to me, and in fact it made me kind of mad. How on earth would that be possible? RA is autoimmune, not food-based, right? It’s not a disease that begins because of our habits. And add to that my genetic connection to a parent with RA. The whole suggestion just kind of pissed me off.
But I guess I never completely wrote off the possibility of going gluten-free. Every time someone brought it up, my response was the same. “Maybe someday but I’m not ready right now.” Honestly that’s just a nice way of saying … give me a good enough reason and I’ll consider if it would be worth it to me. I love bread and all things wheat, so being gluten-free sounded like a small bit of hell right here on earth. But just in case, I eliminated processed breakfast cereals and limited my bread consumption … okay but not pizza or subs or cookies or cakes … at least not THAT much. I definitely found that the more healthy, clean, unprocessed choices I made, the better I felt. But gluten-free … nope, not yet.
Well, about 3 months ago things started to shift. I read a great book hoping to gain some insight for a newly diabetic family member. What? A book about diabetes talked about gluten? Yup – and autoimmunity … and the connection between the two. And I found an article that seemed credible covering the connection between the two topics. Both sources essentially said that eliminating gluten may lessen or remove the possibility of getting another autoimmune disease. And I read another book about the connection between thyroid issues, autoimmunity and gluten too. Hmmm … don’t want any more diseases … so maybe … Here’s where my “switch” or motivation was beginning to flip. More reading and more connections ensued. And I decided to give gluten-free living a try.
Know what really flipped the final switch? Well I just happened to stand on the scale one morning. The previous evening I’d had two small pieces of pizza and a few baked, breaded shrimps. Shocker – the scale showed I had gained four pounds overnight. Nothing else in my food the day before was inflammatory. But four pounds of water/inflammation packed on just from a “moderate” serving of wheat-based stuff. You should know that I’m not super worried about my weight – it’s healthy and I’m fitting in my clothes. That’s another reason why four pounds overnight seemed crazy.
So I figured maybe there is some truth to the connection between gluten and inflammation. Although I don’t suppose I’ll ever know for sure if gluten really would cause another autoimmune disease … or not. If I can hedge my bets, maybe it’s worth a try. And I thought to myself, “let’s give it 4 to 6 weeks and see how I feel. If there’s no change, I’ll just go back to gluten.”
I talked it all over with my husband, showed him the articles, and decided to go for it. And how long did it take to see and feel a difference? Not 4 to 6 weeks but 4 to 6 DAYS! Truthfully, I am still finding things that have changed … and it has been about 4 weeks now. Here’s what I noticed:
- Flexibility (what I noticed first … and as a massage therapist this change is very helpful … plus it’s easier to get on the floor and play with the grandkids)
- Major reduction in morning stiffness, especially in my hands (again, so helpful when I have early morning clients)
- Strength or more muscle soreness (I think keeping my muscles strong will ultimately benefit my joints, so this is important to me too)
- Major changes in how clothing waistlines fit (no weight change, just every single piece of clothing is looser & all muffin tops are gone)
- Less swollen feet at night (I stand for up to 8 hours each day, so this comfort level change is huge)
- Less wildly uncontrollable hunger (I used to say my stomach was really a headless monster but not anymore …)
- Less irritability, especially around hunger (this is huge because I have been attributing irritability to hormone changes … maybe not so much)
- Calmer emotions even in times of great stress (so I’m in the sandwich generation and a small business owner … need to be calmer every day)
- Less brain fog – not “losing words” or my train of thought at all (super helpful and makes me feel a lot less crazy and perimenopausal)
- Changes in muscle definition and general tissue quality (now you can see my muscles, plus they feel looser and less tense to both me and my massage therapist)
I can’t say for sure that going gluten-free will help you with these issues. (But I would wish good changes of any type for you!) I can’t say for sure that I will always experience being gluten-free as a positive force in my life. But I am hopeful … and that makes all the difference each morning when my feet hit the floor.
This week marks three years since my RA diagnosis, and I’ve been tossing around some thoughts lately. 2012 has been a rough year in so many ways, and as time progresses and the stressors don’t change, I can see how much that stress affects me. I also have had a couple of people ask me lately to share what keeps me going … strategies that help me stay feeling well.
Challenges: My main challenges are pacing myself and managing stress. I am a busy, doing, going and never stopping kind of person. This can be a little too much for my body sometimes. And my main stress relievers are exercise and my work (more on that later) … not exactly still activities. So I have to force myself to slow down and relax a LOT.
Strategies: I switched last year to a more gentle form of exercise – water exercise. I love it and find it to be the perfect pace. Plus I can ramp up or down depending on how I feel – and no one in the pool is judging me because it’a all underwater! (same goes for swimsuit-related self-consciousness …)
Strategies: I have a much lower stress career now than I did 10 years ago. That’s massage therapy versus advertising. Although I believe in good customer service and meeting my clients’ needs, I also have a wonderful group of clients who encourage me to take care of myself first so I can take care of them more effectively. I don’t have a boss telling me I must perform. I judge my schedule based on how I feel at the time. Even though I book people ahead (sometimes several weeks out are full), I can skip filling in the spot when someone cancels and give myself a break when needed. Little things like that make a big difference for me. I also work in a beautiful space that I completely designed. I play peaceful music that I love. I talk with chatty clients, or I have long breaks of silence where I can focus on breathing and the meditative nature of giving a massage.
Challenge: After a 10-year massage therapy career, I think I’ll probably taper off over the next 5-7 years. I’m nearly 50 now and ready to shift into another career – health coaching! I am passionate about this field, and especially about helping people who have chronic pain and inflammation like me.
Strategies: Still working on how to do this … but I just know that if I plan that will help. I have a few expert friends that I’ll reach out to for ideas. This is a big part of my strategies – don’t try to “go it alone!” Asking for help always offers better solutions.
Challenge: Managing medications
Strategies: Get a smart-phone enabled medication reminder app. It’s my savior and reminds me to take my meds twice a day. Plus once a week. Plus every other week. Ayyyiiiyii … I have enough in my brain without stressing about compliance. And consistent medication is a big help to my overall wellness. The meds reminder also helps me remember any non-standard meds I have taken, like antibiotics for example.
Challenge: I’d love to say that I can eat anything I want and never be affected … in my waistline or otherwise. But that would be a big, fat LIE. I have had to revise my perception of “comfort food.” If I eat a bundle of junk food, sugar or even too many carbs … my body gets angry. If I gain weight, my clothes hurt (literally … tight waistlines are yucky!) and more significantly my knees ache. My hands will also swell with too much “discomfort food.”
Strategies: Well, as a health coach, I know a lot of great information. I even know how to take baby steps and put it into action. And starting about 20 years ago, I began this journey toward making better health choices. 20 years?? That’s long journey … why so long?? Well, because I believe the journey never ends. There are always changes in our bodies and in nutritional theories. For example, three years ago I would never have truly considered going gluten free. Now I’m considering it pretty seriously. I work every day to eat clean – whole foods that are primarily home cooked with love. I read food labels and know what ingredients make my body hurt. I know how much I can “goof off” before I get the diet smack down. My morning starts with a nutrient dense smoothie, and my afternoon snack is often a fantastic green drink I found recently. I avoid “discomfort foods” but I also don’t allow stress about those foods to overwhelm me … that would produce the same result as eating a bite or two of the food.
Challenge: SLEEP! Some nights I have perimenopausal symptoms (extra uncomfortable heat), and others my husband snores louder than usual. Often I get achy in the middle of the night and can’t find a comfy position.
Strategies: Keeping a standard sleep schedule all seven days of the week helps me a lot. Same time to sleep and same waking time means my body isn’t surprised every night – less change equals less stress. I also found a cool thing a few weeks ago called a Spoonk. It’s an acupressure mat that I lie on for 10-15 minutes before sleeping every night. It seems to calm my nervous system down and deepen my sleep. I also think that better sleep is helping my digestion – an unexpected bonus!
Well, now these aren’t secrets anymore … you know them too! Hope they help you make your RA easier to manage.
I haven’t posted since May – mostly because life has been good and I’ve been busy. I did have an experience with the evil skin infection cellulitis, which thankfully resolved itself pretty quickly. But mostly the last few months have been full of big business decisions and happy family times.
Until this morning … I was returning home after a lovely yoga class and was in a car accident. On a scale of 1-10 with 10 being the worst, it was about a 3 to 4. NOT what I was hoping for from my day. My car is really a mess thanks to the winch on the other guy’s truck. It’s safe in the towing company’s storage lot for now while I wait for the adjuster to assess the situation. And I am sitting in bed … waiting to hear if I broke any ribs. Or really to find out if my seatbelt broke any of my ribs!
The accident happened in the middle of a string of rainy days, which were already making more achey than normal. Now I am having trouble moving in some directions with this rib pain. Strangely, there’s no bruising on the outside. It’s the perfect example of “But You Don’t Look Sick.”
Interestingly, this accident reminds me how closely connected my core muscles are to my ribs. The hardest part of this pain is what happens when I try to lie down or rise back up from horizontal. I just can’t access my core muscles to help me. But I’m grateful for strong legs and arms to help support what my core can’t. Now I have to be careful not to strain those joints and muscles.
As I said to the x-ray tech, “I feel like a feeble old lady.” And as my spoonie peeps know, we all have been there and we don’t like it at all!
And here’s the rest of the challenge. Much of my ability to see massage therapy clients depends on my ability to move freely. For the last eight years I’ve been able to work pretty darn consistently even with RA, but I cancelled all of my clients today. It’s been quite some time since I’ve had to do that. And as a small business person, I don’t have paid vacation or sick time. So I’m pulling out all the stops to get better soon!
One of the things I always tell my clients is that the MOST important time to eat healthy food is when your body is trying to heal. Your body needs all the fuel for its building blocks to rebuild the injured tissue … and this doesn’t come from cheeseburgers and french fries. It comes from fresh veggies, whole fruits and some lean protein. So although my mom suggested hot cocoa (and I may do that!), I am also making sure I eat super healthy. In fact once I made it back home, I made myself a green smoothie right away. Some part of the reason was to have food in my stomach to calm my nerves. Another part was to get food in my stomach to take my meds. And then the general need to feed myself the healing food!
Send me some prayers and healing thoughts if you would … and I’ll really really try to get back here and update you on my progress. Thanks friends!
It’s been nearly a year since my RA diagnosis, and that timeline has been on my mind so much lately. There have been many ups and downs, but generally my sense of the prognosis is a positive one.
I take many more medicines than this time last year. And yet they are making a tremendous difference in my life.
I take many fewer naps, and have been able to be more active in my life. While naps are kind of fun, it’s better when they are a choice and not a necessity.
I hope that (for now) I’ve learned a lot more about where my limits are. I work less, I rest actively more. I have enjoyed and treasured slowing down because that’s brought me time spent with family.
I spend some time on Twitter with a terrific group of folks – most of whom are also living with RA or another chronic / autoimmune illness. This makes me feel empowered and part of a tribe that genuinely cares about each other.
I’ve learned that asking for help is good. And that toughing it out can lead to some serious downsides – typically not worth refusing to ask for help.
Despite healthcare reform, I am more concerned about my husband’s ability to retire since it is his job that provides my health insurance. It makes me want to find time to be politically active … although we’ll see how that fits in my life’s priorities.
I am so grateful for the good things in life – both those I can do easily, and those which take more effort. It’s all luscious!
Sometimes I tell someone I have RA and it doesn’t even register on their face. Like I just told them I have a cold or silver/gray hair. Colds go away in 10 days (if we’re not immune suppressed), but RA is forever.
It’s just frustrating … so I thought I’d share with you. Even though you didn’t ask.
I wish I could tell the person that the easiest response is, “So what does that mean for you?” They don’t have to know anything about RA to ask me that. And I can choose how much I tell them … which depends on mood and the “need to know” factors.
Phew. Got that of my chest. Thanks for listening.
When I turned 40 my aunt told me that my body would never be the same again. That it would change unexpectedly and often. That everything I thought I had figured out would become wrong. That these adjustments would keep happening every year or so for the rest of my life. None of that information was easy to absorb or adjust to! And that was before the RA symptoms started!
Here’s an example of my “new body.” This morning my pain alarm woke me up. Truthfully, it woke me twice (at least) last night and then once after it was light outside. I’d just like to know who installed this alarm. How do I control it and could I even disable it? It’s bad enough to use an alarm clock to wake up every day, but having one inside my body stinks!
Another example is that lately my relationship to food has changed. I love delicious food. But I’ve been wondering why I find most food a lot less interesting. Maybe it comes from meds or maybe just from dealing with so many annoying issues related to RA all day. Sometimes I just don’t have the energy left to get excited about meals. Except possibly ice cream … LOL.
I have always been a bit ADD, hyper and not very good at sitting still. Now I treasure those days when I can fit a nap in during the day. I know that I have to take a break to sit down or lie down during many of my former “normal” tasks. I am grateful that I can still accomplish a lot, since I know a lot of RA patients aren’t able to do their everyday stuff. But it all just takes so much longer now.
Does anyone know where my body went … because I’d really like to trade this one for the other one. Okay? Thanks. Bye.
This week it will be 5 months since I started taking methotrexate. I’m grateful to say that my overwhelming experience has been positive. The anticipated post-medication nausea, headaches, and exhaustion have been minimal. And my body’s overall response to the medication has been positive. I find myself with almsot “normal” energy on many days, which has been fabulous for my spirits, my life and my business.
But … and you know there’s always a “but” … I do have one side effect that is a bit troublesome. I think MTX is affecting my menstrual cycle. Now I’ve discussed this with both my GYN and my Rheumy, and they both say this cycle distruption is “normal” for a 45-year-old. But I didn’t have the slightest cycle disruption until 3 months ago. Nothing had changed in the last 8 years! So why, all of a “sudden,” am I experiencing complete menstrual chaos?
Everything I find about MTX and menstrual cycles says there is the possibility of disturbance or spotting. What I don’t know is whether it can induce complete menopause or if the effect is amenorrhea with hormones still present in some level. And again, it is frustrating to have the docs both saying … don’t worry, you’re 45 anyway. That seems like a lame excuse!
I know … I know … it IS a minor side effect in the big scheme of things. And it certainly isn’t significant enough for me to stop taking methotrexate. Plus I think of friends who have had emergency hysterectomies for a variety of dramatic reasons when they were younger than I am now. And it was all bound to happen eventually. But I kinda like estrogen … it helps with a lot of vital functions in my body. And I just wasn’t mentally prepared for this … thought I had about five years to wrap my brain around “the change.”
Just when I thought I was going to sleep … a rant took over my brain … because this afternoon for the third time this week someone told me that I probably have celiac disease & that it’s probably the source of my RA. And that going gluten-free will make me well. Oooooh-kaaaaay …
I have been told about this connection (usually preceded by “I don’t know if you’ve ever heard this before, but ….”) more times than I can count. And nearly as many times as someone has suggested that dark cherry juice will also be the “solution I need.” At this point I have already had 2 blood tests with negative results. I have absolutely no celiac or early celiac symptoms. And truthfully, my c-reactive protein and ESR numbers are quite low!
Even so, I am now seriously considering spending $300+ on DNA testing and attaching results for that plus the two blood tests to my chest with a safety pin. Just to get people to shut the heck up about “solving” my “problem” when they aren’t qualified or knowledgable.
I just don’t buy celiac disease as a cause for RA. But I do know one person with RA whose inflammation has improved from being gluten-free.
Maybe I will spend 2-3 weeks gluten-free because it certainly can’t hurt. I have been 80-90% gluten-free for a month before – but this was before my symptoms became active. I lost weight and felt terrific, but who knows whether that means it would influence my symptoms.
Or maybe I will just keep doing what I’m doing. It’s working so far and I’m happy. Now all I have to do is fall back to sleep …
This weekend I’ll be traveling to another state to visit with my mom. While I’m looking forward to seeing her & spending time together, it brings up three significant stress points as well.
1. The travel process itself
2. Her RA situation
3. My RA – especially relevant to the tasks she needs my help with
I’ll be traveling alone as I typically do for visits to see Mom. Keeping luggage light and easy to manage should help. Even so, I always check my bag so I have less to wrangle during layovers and airport navigation. And it turns out my first day of travel will be a 11-12 hour process. It’s mostly a very long layover, but airports just aren’t very comfortable after a couple of hours. Honestly, just the length of the day is daunting. Thankfully the trip home is more direct and shorter in duration – because by then I am sure to be tired!
I am quite comfortable in my own yummy memory-foam bed. Yet this trip will include two separate guest room beds of undetermined comfort/discomfort. Hoping there will be lots of pillows available so I can prop myself into a comfy position on my back. Side sleeping is still problematic due to shoulder flare issues. But hey, at least I don’t have to factor sharing the bed with hubby into the equation! ;->
My mom has RA that has gone virtually untreated medically due to her religious beliefs. She’s had some type of RA-related symptoms for nearly 10 years, but likely has had the disease for much longer. Her hips, feet and knees are so damaged that she’s now wheelchair bound. Other joints are so damaged that at 69 she’s dependent on nursing care for most of her daily functions.
I can’t begin to describe how difficult it is to see Mom like this. I just don’t know what the next RA-related issues will be for her, but they are bound to be uncomfortable and scary. And that’s probably a massive understatement.
I have chosen not to tell her about my RA diagnosis. I’m not sure how much longer I will keep her in the dark, but for now the choice makes sense to me. I am doing well with my various medications, and perhaps she won’t notice for a long time.
On the other hand, the list of tasks grows longer and longer as we approach the visit. I don’t really slow down or stop and rest enough. And on my last visit the pain levels skyrocketed and I hardly slept at the end of the trip. Since then I have learned to take better care of myself, so I just need to stay strong enough to make sure I slow down to rest during the day. I am still struggling with this at home … so who knows how it will go when I’m with Mom.
Maybe I’m just a big whiner … because in the big scheme of things I’m still doing a lot and mostly pain-free. But every day I still only get so many spoons, and traveling sure changes how they get used. Thanks for listening!