Gluten-free diet

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GUEST Blogger Julia Wisnieski: Life With Fibromyalgia

Hi everyone and happy Wednesday! I was contacted by Julia a couple of weeks ago about guest blogging. I think it’s cool to share other perspectives so here she is sharing her experiences and life with FMS. Please give her a warm welcome and I hope you enjoy her posting. Please send in comments and as always… stay cool! Relax and enjoy a pain-free day.

Hugz,

Tamiko

My name is Julia Wisniewski. I live with Fibromyalgia and I blog for Bready, the gluten-free bread machine so I can share my experience with managing my pain with a less gluten-y diet.

Although I have been living with the pain of fibromyalgia for as much of my life as I can remember, I have never noticed a link between the pain and my eating habits. When I was younger, my parents thought that the fibro pain was growing pains. They told me to eat bananas because the potassium is known to aid muscle function. Unfortunately, I never noticed the bananas relieving my pain.

After the diagnosis of FM about a year ago, I emailed a friend of a friend who I knew lived with fibromyalgia. I felt really awkward because she was the older sister of one of my high school friends, but she was the only person close to my age who I knew could share her experience with me. She gave me a lot of spiritual advice as well as recommended cutting down on my gluten and dairy intake. I thought that decreasing the dairy in my diet would be impossible, what with my love affairs with chocolate and cheese and butter.

I have never really been one to sit around and mull over the possibilities, so I decided that I was going to start a less gluten-y diet. I made a list of foods that I was to avoid and posted them on the fridge in my house. My roommates made fun of me for a little bit, but when they realized how serious I was about this diet, they even helped me cut out some foods that are bad for me.

I wanted to manage my pain better. I began eating more rice instead of pasta and used gluten-free flour in my baking endeavors. I felt okay, but I wasn’t convinced that it was due to my new diet. I eventually abandoned my gluten-free efforts because I simply got busier.

I was fine until recently I have been noticing stomach pain. I would feel a brick in my stomach after eating any bread or products I knew were rich in gluten. So I’ve gone back to reducing gluten in my diet. I am hoping that it will help with my stomach issues.

It is so funny to me how out of touch I can be with my body sometimes. I even went back to eating gluten for a while and ignored my body long enough to think that I was okay. It is still a day-to-day struggle. I don’t exactly have time to be worrying about my body, but I know how important my health is.

Besides just trying to replace my pasta carbs with rice and potatoes, I have found that I can use a gluten-free bread maker and make myself breads instead of buying the bland gluten-free breads from the supermarket. It helps a lot to know that even though I have to cut down on some of my favorite foods, I at least don’t have to give up on my bread.

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How clear is your head? My fibro life post-detox.

It’s been exactly one month since I last posted to my blog. I haven’t been here. I haven’t checked my blog, I haven’t been on Twitter, I haven’t been social networking much at all. I have just been trying to live and take every day as a new day. My new life without meds. This is very new and uncharted (honestly I thought the word was “unchartered”, but it’s apparently not a word) territory for me. I have been on some type of medication for as long as I can remember. Meds for depression, meds for pain, meds for insomnia, meds for migraines… Lordy! There is definitely a prescription for every ailment. It’s super crazy when you think about it. The pharmaceutical companies definitely make money off us chronic pain / depressed folk!

Since going off my daily meds, I take Flexeril for muscle pain every 2-3 days. I like it because I don’t have to take it everyday and there’s no side effects if I DON’t take it, and the big benefit for me is it knocks me out at night. Not having that requirement to take a pill every day and multiple times throughout the day is incredibly important to me. I have had so much crap in my body for so long, it’s nice to only take pills when things get really really bad.

My head is so much more clear since going off the meds. There’s the good and the bad with this. I have reality in my face at all times. Who wants that? LOL! Honestly, my reality NOW, is so different than it was on those meds. I am doing a hell of a lot of self-talk, let me tell you! It takes a lot more to maintain a stress-free life in this new world.

… and did I tell you? Oh my gosh!! Stress is the daily devil I fight. Now, when I get stressed, my body retaliates like nobody’s business. Instant pain or instant headache or instant upset stomach… or my very favorite – instant emotional breakdown (ya gotta love those), etc. This stress stuff is no joke. Living and thinking like those professional “be happy” people is not easy. “Don’t sweat the small stuff!”, really? Live my life and let’s see YOU not sweat the small stuff. Sometimes the small stuff just gets me flippin’ frustrated and yes, I stress (I am human y’know). I am not saying it happens everyday, but it only takes ONE TIME and my body is like, “eff you! I’m retaliating!”. Don’t even get me started about what I would define as the “big stuff”. I think we can all agree, stress sucks.

Where was I… oh yeah, my head is clear – let’s not go crazy, I’m not ummmmm, “normal” like I once was pre-FMS (as is evident by my ADD writing you are reading right now). This is my new “normal”. I can do my job and feel pretty good about it vs. doing my job and wondering if I was making any sense a lot of the times. Towards the end, the drugs seriously, and I mean SERIOUSLY (in caps and super duper bold) fucked. me. up. (excuse my language but I need to be aggressive with this)! It still scares the crap out of me to look back on those last couple of months. I know I have harped on this, but I cannot imagine how many people are on drugs and the side effects are doing more damage than the actual illness they are trying to treat. That was definitely the case for me (can ya tell?).

I am ready to start with a different regimen. Exercise, good healthy food and targeted vitamins and supplements. I know this is not some crazy new idea – but for me those first two have always been challenging for me. It’s time I stop screwing around and really make a go of this.

I have noticed lately sugar definitely effects me nowadays. This is not cool. I mean seriously, I have the world’s craziest sweet tooth these days and every time I try to eat something sweet – BANG! upset stomach and a headache. Really, really, REALLY uncool. Fibromyalgia, depression, ADD and now sugar is a problem. Awesome.

I also tried the gluten-free diet… annnnndddd as my God-daughter says, “I think Godmommy needs the gluten back”. I actually was feeling worse… weird, right? I never said my stuff made any sense. It’s damn confusing to me all these different diets, vitamins, supplements, approaches, eat this-not that… ARGH!

Well, I would love to hear what you are going through and please share your experiences. It always makes me feel better to know I’m not the only one.

Thanks for stopping by! Stay cool!

Tamiko

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From the depths of Hell, I am coming back to life.

Wow, time flies by when you aren’t blogging! I was doing good for a while and then I hit a real low with my pain and depression and life just seemed to stop. Of course there’s not much one can do when feeling like shit… except of course, obsess about how you are feeling like shit.

Meds can be the best thing ever OR they can just fuck with you, excuse my language. I was on the same med cocktail for years. I knew and know that it’s the integrative approach to managing Fibromyalgia that makes life… well, manageable. BUT, I gotta tell you, my meds were seriously making my life Hell. I didn’t realize how truly fucked up my crisis was until I started really contemplating suicide on a daily, almost hourly basis. I lived through about six weeks of the darkest time I have ever experienced. It has taken me a couple weeks just to really realize how close to the edge I was.

Thank God, and I do mean the big guy above, I had the sense of mind to call for help. I talked to my psychiatrist, I talked to my primary care doctor, I talked to the Pain doctor and nurses and I talked to my OB-GYN. Kaiser was awesome, they helped to save my life. Everyone was persistent in making sure I did something. It was frustrating trying to convey what I was going through, but I spent hours, literally four and five hours scouring the internet for information every day. I was obsessed about the latest news and information on Fibromyalgia, depression and the approaches to manage. I finally concluded I needed to change my meds and thankfully, working with my doctors I pushed hard until I got everyone on the same page with the approach I wanted to take.

You know, I am not sure if it was the pain that aggravated the depression or the depression that aggravated the pain during this crisis. I do know I have been under a ton of stress; the weather was constantly changing, it was raining and then sunny every other day; and Lord knows (as all of you do), that sleep was non-existent. All of this added up to not seeing any light at the end of the tunnel. I felt like I was a huge burden on my husband, family and friends and just couldn’t see how I could live out the rest of my life in that hell.

How could I communicate to anyone that I was feeling like I just needed to get out of my misery? It’s weak, it’s unfair, it’s hurtful… but most of all it’s SELFISH. I know all of this and I didn’t want to hurt anyone, most importantly my kids. This was the only thing that kept me going. I didn’t know how to talk to anyone, I am a very private person – and the thought of showing, what I felt was weakness, was unfathomable. I couldn’t bring myself to say it out loud. After days turned into weeks and the weeks just kept passing and things weren’t getting better – I finally talked to my husband. To be honest, it made me feel even worse. He was so devastated (and rightfully so), I just felt like an even bigger loser with a capital “L”. What the fuck was wrong with me? I know it’s not a weakness to commit suicide, you must have commitment and the strength to follow through with the act – but it is quitting, quitting on life, which is a weakness to me.

Well, I am happy to say, now that I am on the other side of that nightmare. This was not a case of suicidal depression. This was, in my mind, for the most part due to the meds (like 99.99%). I read a lot of reviews from people taking Topamax that they experienced the same thing I did. I felt so thankful to know I wasn’t the only one. Topamax was my savior drug when I first started taking it, and it worked for a long time. I was very confused as to why it betrayed me so suddenly without any indication. This drug has been used a lot for fibromites to help with the nerve pain. If you read up on it, it has all the side effects that are symptomatic of Fibromyalgia. I asked all my doctors how I would know if my issues were due to the medication or my FMS. Each doctor said, it was a great question, and that they didn’t know. What the hell? I wanted answers, instead I got confirmation that my concern and confusion was a “great question”. In the end, the mystery of whether or not the drug was making me worse, the many reviews and the way I was feeling were the basis for my decision to get off that drug.

I decided to take a different approach and manage my depression and my pain separately from a drug perspective. I was on Cymbalta for both and I chose to stop. Again, not sure whether or not that drug was an issue for me as well. Oh my Lord, have you seen all the issues people have with getting themselves off that drug? There is a website just dedicated to all the issues with going off Cymbalta. Thousands of people have provided their nightmares out there on the internet, I was extremely nervous about stopping the drug. But I know that after literally spending hundreds of hours researching options, the one that I have chosen is what I want for myself. The options I reviewed: going all natural and off prescription drugs, I looked at diets, I looked at medical marijuana, I read everything I could possibly find. At the end of the day I decided to go with new meds and a gluten-free diet.

I am now on my last few days of Cymbalta and I am feeling markedly better than at my lowest point. I am off Topamax and I went through one cycle of PMS without feeling like I was in the pit of Hell (for the first time in at least a year). I have taken five weeks to cycle off Cymbalta, I decided to take it much slower than the doctor advised based on everything I read. I went down 20mg a week and I don’t think I felt any major side affects. At the same time I slowly started and increased my new anti-depressant. I am also on my third week of being almost 100% gluten-free. (I am still learning what it means to live a gluten-free life.)

Due to the interactions, I have had to wait to start taking my new pain medication until I am off the Cymbalta. It hasn’t been easy but, trust me, I would much rather have pain than the depression I was experiencing. It’s been a worthwhile process. I am starting to see friends again, which is a sign for me that life is becoming bearable. After months of living in greys and black, I am starting to see shades of color.

The lesson I learned is that I should never feel suicidal. No matter how bad things feel or seem in my mind – suicide is not an option. I need to review my meds on a regular basis and make sure that they are working. I know that I have clinical depression and that I need to manage it. I am responsible for my own health, I need to take it seriously and continue to make it a priority.

I’ve been reading FibroWHYalgia, (an excellent book, if you haven’t picked it up I highly recommend it), the author Sue Ingebretson says that making “I am” statements is not good for your psyche. I have really thought about that lately and I notice that I say “I am in pain” almost every day. If I am going to manage my thoughts, understanding that what you think is what you are, saying “I am in pain” dooms me to be in pain. It’s a great point! Changing the mindset is another new challenge for me.

This is a long blog, but it’s so important for me to share with you that you need to monitor and manage your health as diligently as your highest priority. You need to watch for signs that something is wrong and not assume it’s “you”, that it may, in fact be due to your medication. I urge you to journal your daily pain and mood levels, in addition to your exercise and what you are eating as well as the medications and supplements you are putting in your body. Keep in touch with your doctors (don’t let them forget who you are!), make them listen to you or get a new one. YOU are responsible for your health and no one but you can determine if what you are experiencing is “normal” to you.

I am a very private person, but I feel strongly that if this can help someone, it’s important to share. Thank you for reading. Take some time to relax, meditate and breathe.

Stay cool!

Tamiko

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