Hey everyone! I hope that you are all doing well and that you had a great week! Things have been interesting here on my end as you'll soon find out. I am really excited though because I took tomorrow off for my birthday so I get to enjoy a three day birthday weekend! I have a few things planned for my birthday, including some yummy vegan deliciousness and I can't wait to share that with you on Tuesday!
I don't have food to share with you today because this week has been crazy with a Jewish holiday and doctors and things like that but I do have an update to share with you. Those of you that have been reading here for a while will know that I suffer from chronic full body pain, headaches, muscle spasms, etc. I've been dealing with it probably for about 7 years now. I have been to countless doctors and have had every test done in the world and I still had no answers. Until yesterday. I finally saw someone that took every single symptom into account, examined me the way I needed to be examined and came up with my answer.
So, yesterday I was diagnosed with Fibromyalgia. My initial reaction was pure relief. The relief doesn't come from the actual diagnosis (I'll get into that in a minute) but I was so relieved to finally know what is going on so I can move forward. I have been searching for an answer for 7 years and I finally know what it is.
That said, my initial reaction to the actual diagnosis was a little bit rough. It's another invisible illness to add to my list with no cure and only hope of management. A lot of people think that it is a bullshit illness because there are no blood tests that say here it is, you have Fibromyalgia. The treatment options are not really great. The most recommended one is an antidepressant which I'm pretty sure will not be a good thing for me based on my psychiatric diagnoses. I can take anti inflammatories which are ok and take the edge off but don't really do a whole lot.
So, I've decided the best route for me to take for now would be to make some lifestyle changes to try and manage my pain. I was told that exercise is really beneficial for people with fibromyalgia and it just so happens that I've been looking to join a pool so I can swim as my exercise. I tried going back to the gym but even no impact workouts are really hard and cause muscle spasms. I noticed that after I went in the pool a few weeks ago I was pain free for 2 days. I asked the doctor and he said that water exercises are one of the best things I can do so I will be looking into that.
Finally, there are a few diet changes that I'm thinking about making. I decided to look up what foods trigger fibromyalgia pain and luckily I don't eat most of them. However, there are two groups that are big triggers and those are gluten and nightshade veggies (tomatoes, potatoes, eggplant and peppers). I'm thinking about trying an elimination diet with these foods and I'm really not excited about it. Nightshade veggies make up a big part of my diet and you know I love my gluten. I'm a little overwhelmed by it but I decided that I will start to look into it more seriously next week (birthday weekend plans are still going on as is dammit, ha!).
In the meantime, I would love to hear from you guys about what tips you have for going gluten free and maybe some substitutes for nightshade veggies that you know of. This is definitely a daunting challenge for me but I feel like I need to at least give it a try if it means less pain on a daily basis. Any advice or tips would be greatly appreciated. Links to your favorite gluten free recipes would also be so appreciated!
I know this is a bummer of a post but I thank you guys for always listening to what I have to say. I really appreciate it. I know that a Fibromyalgia diagnosis is not the end of the world and is not fatal but I'm working on accepting that this pain is with my for life and that there will be people that doubt it. I am going to do everything I can to manage my pain and move forward and thrive.
I hope you all have a wonderful weekend and I'm so excited to share birthday weekend festivities and FOOD with you next week! 💜
16 comments:
Hi Sarah. I don't know that I've ever commented on your blog before, but I'm a regular lurker. Since you're trying to avoid nightshades, you might consider investing in a macrobiotic cookbook since that diet excludes those veggies.
Believe it or not, The Kind Diet by Alicia Silverstone adheres fairly closely to macrobiotic principals. And the photography is appealing, her writing style is very approachable and the recipes are all delicious. It's not strictly macrobiotic, so if you want something more stringent, do some research, there are plenty of macrobiotic cookbooks out there.
Good luck with your pain management journey and hope whatever you decide to do, it makes you feel better.
Hi Blake!
That's so funny, I see your comments over on Hillary's blog, I had no idea that you were reading here as well <3
Thank you so much for your comment! I actually have Alicia's book at home! I purchased it when it first came out and sadly haven't looked at it in years. That is such a great idea, I'm going to read through it again this weekend and start bookmarking recipes to try out.
Thank you so much again for taking the time to comment and for the well wishes <3
I agree with Blake about The Kind Diet. I don't know much about subs for nightshades(yikes) but giving up gluten is a challenge I still struggle with! I love Trader Joe's gluten free pasta because it's got a nice texture an it's a great price. B Free bread is the best gluten free brea I've had so far but it's pricey.
I know this must bring on a lot of feelings, but I'm glad you at least know what's going on.
Happy Birthday!!! Have the BEST weekend!!!!
Hillary - if you had to give up nightshades, I think you'd be sunk. Where would you be without all those luscious oven roasted spuds?
I'm glad you were able to get a diagnosis after all that time and all those tests; that's encouraging that the water exercise has already proven helpful, and best of luck with the dietary changes you plan to make, too! I'm sending you lots of hugs, and I hope you have a great birthday and enjoy your time off! ! <3
Sarah, I'm so sorry this has been happening to you. I know well that feeling of relief followed by grieving. But I am glad you have an answer and a doctor who is willing to listen. I'm sending you a fellow-spoonie's good will. There are still some mysteries to sort out on my end, too. We'll look out for each other as best we can, here on the internet.
The question of how to substitute gluten has a lot to do with what kinds of gluten-heavy things you like. If we're talking faux meats, the Beyond Burger is gluten free and SO GOOD and you don't have to just put it in a bun; you can make hamburger steak and such with it, too. If you like crackers, rice crackers are pretty good. For pasta, I've been meaning to try lentil pasta. Rice pasta isn't my absolute favorite, but it isn't bad. The Daiya pre-packaged macaroni and cheese is gluten free. And this shouldn't be considered an ad, because you've been reading my blog for a bit now, I think, but a reminder that I tag my gluten free lunches as such, just in case it's helpful for people. A lot of my gluten free food involves rice, but there are a lot of other options.
Nightshades would be tough for me, too. But mashed carrots can go in a lot of the places mashed potatoes would be and onions and celery can do a lot of the things peppers can do. found this website with a lot of tips for substitutions for nightshades: http://www.fodderandplonk.com/new-blog-1/2015/6/1/my-nightshade-alternatives
Lifestyle changes like these are a one step at a time kind of thing. Too much can be overwhelming, so I try not to bite off too many things at once. Just for today, I'll try X. Tomorrow, maybe Y. And slowly I get to where I need to be. I hope it all becomes less overwhelming for you, too, soon.
Is there any Aldi's on Long Island yet? They have a gluten-free bread line, but I haven't tried it. I am TOTALLY not savy about night shades, I forget which vegetables and fruits are categorized, except eggplant and tomatoes. But I think it might help to look up some international recipes, it might expand you knowledge of different grains, like recipes for masa, teff, or whatever.
If your library has it I would suggest checking out the Great Vegan Grains book. It can help with ideas, and checkout Bob's Red Mill site. They have TONS of recipes to use their various gluten-free grains.
Hillary - I already took it out and dusted it off and found a few recipes that I definitely want to try! I am so bummed out about the nightshades and gluten, but for some reason I kind of feel like gluten is going to be easier than nightshades. There is just no substitute for tomato and I eat tomatoes SO MUCH. Thanks for the tip on the B Free Bread! Do you know where they happen to sell it? They didn't really have a store locator function on their website.
Thank you so much! Despite all the feels I'm having a really great weekend :) I hope you are doing well!
Blake - I am SO SAD about the potatoes and that I won't be able to make Hillary's amazing potato recipes!
Thanks Julie <3 I know, I feel really happy to finally have an answer and to know that swimming will be really great for me. I am currently looking for an aquatic center to join so I can swim during the upcoming winter months.
Thank you so much, my birthday was wonderful and I'm having a great weekend so far!
Thank you so much for this comment <3 It really means a lot to me. I am sorry that you are struggling as well but I am so with you, we can support each other as best as we can.
Thank you so much for these great ideas and most importantly for reminding me that these changes need to be taken one step at a time. I think in my head I decided that I needed to cut gluten, cut nightshades, cut all processed foods, etc. I think that starting with gluten and nightshades is a good first step and the cutting down on processed will follow. I think that will help me get used to it as I work to try and figure out good staple meals with the new limitations to my diet. Thank you so much for sharing that link as well, it is so helpful! I will have to check out your archives with the gluten free tag for meal ideas as well!
Thank you again so much for this <3 I really appreciate it and feel a lot of comfort knowing that I have so much support.
I *think* we have an Aldi's here on Long Island? I think it is a little bit of a ride but not too bad. I know they have a lot of new vegan products and it's good to know that they have a gluten free bread! I may have to take a trip out there and check it out!
Thanks for the tip! I'll have to see if they have the book and I will definitely check out Bob's Red Mill for recipes. I have a feeling I'll be buying a lot of their products from now on ;)
Belatedly, Happy birthday!!! I hope you have been having a wonderful one, despite the diagnosis, and that all of your birthday wishes come true!
What a bummer having symptoms associated with Fibromyalgia. As soon as I read that I looked up Fibromyalgia on Wikipedia. I hadn't realised how poorly understood it is.
I have had a lot of doctors tell me swimming is very good for muscle tone and health.
I did visit the links in the footnotes but didn't find a proven link between gluten and symptoms - just a suspected one and the words "it seems reasonable to eliminate some foods...similar manifestations...recently becoming a potential dietary intervention..." etc. at https://www.ncbi.nlm.nih.gov/pubmed/25786053
I hope that somehow it turns out nightshade veggies are okay for you to eat after all, and that you find some tasty vegan alternatives too.
I am not at all impressed with doctors' dietary recommendations. I tell doctors repeatedly that I am a vegetarian and they repeatedly give me recommended dietary print-outs recommending large portions meat. WTF??? Eeeewww. Obviously their dietary recommendations have been going directly into my paper recycling bin.
Best belated birthday wishes again.
The yummy vegan birthday treats you plan to write about on Tuesday are a happy thought.
Thank you so much! I did have a really great birthday :)
Yeah, I'm coming to find out firsthand that it is very misunderstood and a lot of people don't even believe that it is a real illness. I wish there was a way for me to communicate what it is like so that they understand and believe the pain that I've been in for years. That's so great that swimming seems to be a good option, I'm definitely going to see if I can find a place where I'll be able to swim a few days a week.
I'm sorry that your drs are not supportive of your dietary choices. I think it's ridiculous when they try to give nutrition advice when, from my understanding, they have like a total of 8 hours of nutrition training. I hope that you'll find someone that is supportive of your choices.
My doctor actually didn't recommend the dietary changes to me. Since the medications that are used to treat fibromyalgia (antidepressants) likely won't work for me I decided to try and research and see what I can do to manage my pain and symptoms. The dietary changes I found were not necessarily a cure, they basically just said these foods can promote inflammation in the body so I decided to try and cut them to see what happened. I'll try adding them back in and if I feel ok, then great! If I don't feel great then I'll avoid them. I don't really know of any other options sadly so I'm going to give this a shot and see if it works.
Thank you so much, I'm so excited to share them with you! Spoiler alert: they are neither gluten free or nightshade free, ha!!
I found the Bfree bread at Smith's. Any chance you have a Kroger near you?
This sounds like an overwhelming amount of information for you to face all at once- although certainly a relief at the same time.
I’m sure it will be a long process to adapt and figure out what lifestyle changes are beneficial and manageable. Swimming is excellent low impact exercise- it can also be very meditative and calming once you hit your pace.
Living in nyc there must be specialists, support groups, and additional resources that i hope you can benefit from.
This sounds crazy but apparently CBT oil has been beneficial for a lot of people who live with chronic pain and are looking for natural options. Potentially worth looking into and further research.
Ttrockwood
Sorry I'm seeing this comment so late! I appreciate your kindness. It has definitely been a process to accept the information and move forward to managing my symptoms. I am still looking into swimming, memberships are just so expensive!!
I definitely agree that I'm lucky to live in NY where we have really great doctors. I have an amazing team that I am following up with.
I've been looking into CBD oil for pain management. I'm just trying to figure out dosage and details. It's expensive too so I'm trying to figure out the best options and what form I would want to take. I'm also looking into trigger point injections in my shoulder to stop the pain in that area and potentially help with my headaches.
Thanks again for your comment <3
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