Just diagnosed

General
1

Hello everyone! Thank you for all the welcome messages so far- it was a nice and welcome surprise. I'm still trying to navigate myself around on this site, but have read some of the discussion posts. I wanted to share a bit of my history and would love any feedback you guys have.

I am 34 years old, and I just received the Fibro diagnosis when I was investigating other health issues- mainly B12 deficiency, low Vit D, low Free T3 (thyroid), and Chronic Fatigue Syndrome. I am a bit surprised by all of this- as I eat a very B12 rich diet, I have been gluten free for nearly 3 years- as well as off of all sweeteners since that time. I follow a Paleo diet, although now (since my diagnosis 1 week ago) I am eliminating Fodmap's and nightshades and focusing on eating mostly hearty veggie/meat soups. I don't eat any dairy either.

I have a feeling that I have had Fibro, and probably CFS since my first child was born 9 years ago. I never regained my energy and have been persistently tired, and w/constant brain fog since then. I attributed it to having babies (I have 3 children now). Although, now my youngest is 5 and I still walk around in a daze. I remember feeling stiff in the mornings and sore/tired at the end of the day at least since my babies were born- again, attributed it to a bad mattress and sleepless nights b/c of nursing babies.

I am a bit overwhelmed by the diagnosis, but it does make a lot of sense- and I am glad that it isn't "all in my head"! I have felt lazy for the longest time, and now I know why. Thank G-d, my husband is understanding- I encouraged him to read up on Fibro so he can know where I am coming from.

I was practicing hot yoga (vinyasa flow mostly) 2-3 times a week (with great difficulty) until my diagnosis. My Dr wants me to cut back to once a week, and focus on restorative and gentle yoga's and walking. I'm wondering what else I can do to improve my symptoms- besides medication. I focus on getting 8 hours of sleep a night- but that is often interrupted and it is hard to sleep comfortably- I often fidget and need to switch positions often during the night (i guess common w/fibro?). My diet is about as good as it can get. My kids have been off of school on vacation all week, so I look forward to delving more into gentle yoga's starting next week, as well as walking when it warms up around here.

I feel that my symptoms now are the worse that they have ever been, which aren't that severe- thank G-d. I mostly suffer from fogginess, fatigue, stiffness, soreness (particularly in my back in the mornings and calves and feet in the p.m.), I also have fairly knee pain (partly structural and partly fibro I imagine). I can't stay in the same position for longer than a few minutes either.

My Dr. recommended a book called "From Fatigued to Fantastic" by Dr. Teitlebaum, I think it is about Fibro (maybe CFS?). Has anyone on here heard of it/read it? Thoughts?

I appreciate this site and the support that you guys offer- definitely something I need right now as I don't feel comfortable telling a lot of my friends about my diagnosis. I look forward to getting to know you guys!

-Sophie

2

Thanks for posting this discussion, I'm going to check that book out. You're right about sleep, for most of us it's difficult getting a good night sleep. Amytriptilene and melatonin help me, for the most part. I don't know what to suggest except what I do. I sleep in the lazy-boy, it's the only way to keep pressure off my hips, knees, and shoulders. I also sit on a heating pad, and cover my legs with a heated throw. I find the heat soothing. I hope you can get relief soon, good luck, Charlie :)

3

Hi sassonnier,

Welcome to the group! So nice to have you with us. Though I do not have CFS, I do have autoimmune diseases that make me extreemly tired and rather useless, so I do understand how you are feeling and what you are fighting.

My only child is raised, and he is now a grandfather. This hit me late, though I can look back and see it in my life, it was a third time being rear ended in a car accident that kicked all of this off. I just couldn't get over it... My grandkids still like to come and the younger ones like to stay, so there are kids running about here, and I love it. Though I am not as active or full of energy as I once was, I'm still a grandmother, and love it! Nothing like the little ones to make you push through your aches and pains. They always bring happiness!

Many here have Thyroid issues, many of us are still being constantly tested with suspicions. Vitamin deficiencies of D3 and B's seem common as well. Then there are those of us who also have autoimmune, neurological, or something like OA, which is Osteoarthritis, though highly destructive, is not autoimmune in nature, like the other arthritises.

There are many sub-groups, you can find them under groups at the top of the page, just click, Fibro and CFS is one you may be interested in.

Though we have a PA (physicians asst.), many nurses, few of us are medical professionals, just patients, burning up computers doing research and offering understanding and information.

Please feel at home here, we are all in this together! Wishing you well!

Love and hugs,

SK

4

Hi Sass,

I can't help but marvel at how well you are mentally handling your fibro. And you've done all kinds of healthy living changes to your life and diet, which is really admirable.

Thank God that your fibro symptoms aren't that severe. The brain fog, well, that's understandable, given the pain. I guess it's just our bodies' natural way of dealing with too much pain.

I'm going to look for the book you mention. You know, it's quite encouraging that your doc has read up on fibro and can even recommend a book for it. It's nice to know you have a doc who believes in it, is interested in it and has knowledge about it.

Yes, sleeping is a challenge, even for the best of us. I snuck an Ibuprofin into my meds yesterday and had the best night's sleep I had in a long time! But I can't take the Ibuprofin anymore so back to bad sleepland I go. It's frustrating that some of us hurt so much all day and then can't sleep well due to the pain at night. Can't win.

Did you find any issues with your thyroid or B or D Vitamins? i'm curious to know. Sure seems like most of us have something going on with those areas of our health. Obviously something more than too many pain signals going through the central nervous system must be affecting our bodies enough to mess up the thyroid or give us low vitamin counts.

The fibro daze is frustrating. Do you take naps in the afternoon? Probably can't due to your kids but I find that they help with fibro fog.

Please do come back so you can talk about your fibro and not feel so alone. It's good to connect with others who truly understand your pain.

Warmly,

Petunia