Living With Fibromyalgia - Online Support Group

Hi there everyone! I'm Jen

My name is Jen. I am a 44 year old female who was diagnosed with Fibromyalgia about 10 months ago after a good year or so of working with my doctors to find the right diagnosis. I am trying to adjust, we are working on meds, but my life is completely different than it was 2.5-3 years ago and I am really struggling to keep moving forward. Every symptom that is attributed to this disease is making me feel a little like a stranger in my own body. And I am just exhausted and tired of hurting all of the time.
I was very happy to find this website, because I was really feeling alone in this disease. My family and friends are kind and supportive and try to understand, but I know it is just as confusing for them as it is for me to have this now be my baseline, which is very different from what they are familiar with as well. I would love to know if anyone else had a similar feeling or experience when they were in their first year or so of diagnosis.

Hey Jen,
Welcome to Ben’s Friends
I have to say for many of us with rare conditions having that understanding from others is a must. It’s an understanding that many people don’t seem to have. The theory is you become sick, you heal and become well and life goes on. The problem is that for us it doesn’t seem to work that way. We have high’s, we have low’s but we don’t seem to heal. For some people this can a be difficult for them to grasp.
My personal situation is not fibro related but rather a brain condition and I too have those high’s and low’s but never have a ‘normal’ (what ever ‘normal’ actually is). That ‘trying to adjust’ can often be very difficult because as soon as you think you’ve found a level of normal things seem to need to be adjusted again.
You are amongst friends here, we know cos we live with rare conditions ourselves.

Merl from the Moderator Support Team

Thanks you Merl. I appreciate your validation and kind words. It does help. Many thanks! :slight_smile:

Hello Jen…I think we all can identify with your frustration and confusion. I was diagnosed with fibro in 1988. Condition worsened and set itself as my life after I lost my home in a fire 2 years later. Most people don’t understand the ups and downs of fibromyalgia…and I don’t blame them. Most of us LOOK fine, etc. People often say to me :Gee, you don’t look sick" How can that be answered? I too was very active, involved in many things and exercised, etc. Now just the thought of going for a walk tires me out, but I force myself, most of the time.
Hang in there, get as much information on this condition as you can and keep trying to educate the people you love. There are also some good books out there you can read and pass on to others. You will find a way to adjust.
AND BTW, if there is a Fibro Support group in your area, check it out. It helps to learn you are not crazy!

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Thanks you Spunky1257! I really appreciate the kind words and feedback. And, if you have an specific book titles that you would suggest, please feel free to send them. That would be wonderful!

I completely agree with what Spunky said, above. I’ve told lots of people that I have fibromyalgia, and the responses have ranged from, “Oh, isn’t that one of those made-up diseases?”, or “there is no such disease” (that was from an acupuncturist); or just ignoring what I said (my doctor). Some people acknowledge the diagnosis but do not ‘get it’ at all when I say I’m too tired to do something; some recommend a complicated regimen to cure me; and one doctor said exercise is the cure-all.
Lots of people say, "Oh, my (niece, cousin) has that, and she…(is in bed all day, still works full -time) (meaning: you must not have it if you’re not in bed, or, you should still work full-time).
Even the friends who care and believe, often seem to forget completely, when I have to say ‘no’ to something. It is important to me now to consider who I’m telling, and why, and how. Some days I don’t have the energy to cope with an unkind response.
Best wishes with your journey.

Thanks olddognewtricks! I can totally relate to being careful who you tell and what you say. I also want to be an advocate for people like us and decrease the stigma surrounding this disease, because there are plenty of people who can attest to it’s impact on their daily lives. I feel fairly certain that nobody would chose to feel this way if given the choice.
Love and Light to you!

Hi Jen & Welcome!
I have to tell you it does take trial & error to find what works for each of us. I hope you have a doctor that understands fibro. One thing that helped me & my family in the beginning is the book: Fibromyalgia & Chronic Myofascial Pain Syndrome. I think it’s a must read as you’ll find ways to talk w/you family & they can read it as well so they fully understand. I was diagnosed almost 20 years ago & have learned to take it one day at a time. I’m 46 now & still have some bad days but I’ve learned how to control my symptoms more. I know starting out is the worst part but have faith it does get better. Romans 5:3-5 is words I live by.

Thank you so much CDFRANCE26. I am a big reader and find that it is one of the things that can help me decrease my anxiety even on bad days. I will definitely get the recommended book. And, my pcp and rheumatologist have worked together well so far and have been very understanding and supportive. My rheumatologist actually told me that barring ALS, the disease she would absolutely not want to be diagnosed with is Fibromyalgia because there is no cure and she often feels as similar frustration to her patients because it is a process to figure out what works for each person but she can see and feel their pain and desperation for something that works.

I am so grateful for your suggestions and your story. Love and light to you!

Hi Jen,
I am a 57 year old male. I was diagnosed in 2013 with fibromyalgia, I am self employed.
The first years were the worst. Doctors had me so medicated I was a zombie, and it still felt like it wasn’t touching the pain.
I had 2nd and 3rd opinions. They mostly said it was all in my head. I went through a bad split with my business partner, had a fire in my home. All the while I was trying to function like nothing was wrong.
No one understands, more so for a man, nothing against you woman, just is more rare in men.
I took to drinking to self medicate, almost lost my family.
It’s a rough road. Keep a journal, over time you see what causes more triggers, through work, activities, even food.
Best of luck. I find meditation helps me some.

Thanks DT2451. I have actually started keeping a journal and meditating is very helpful. I hope you are in a better place in your journey now. Wishing you love and light. :slight_smile:

I was diagnosed in Feb 2019. For the first 3-4 months, I was like a rabid animal trying to figure this all out. I read until I was exhausted, I went from dr to dr to dr. Slowly, I’ve started figuring out some things that work for me, and what doesn’t. I slowly came to accept my new limitations, which has been really hard. But, it feels good not to try to act like everything’s ok on days when it’s not. I’ve had to be real with my friends that sometimes I will make a date to do something with you and have to cancel at the last minute because of how quickly my symptoms change. Some friends have stayed around, others not so much. For me, taking 625 mg of magnesium malate daily and eliminating as much sugar and processed foods as possible, seems to have made a real difference. I’m 28 days without pain. The longest I went prior to these changes was 4 days! I try to keep my stress to a minimum (not always possible.). I did have my magnesium checked prior to adding the malate and mine came back low. For my chronic fatigue, I take Adderall 30 mg ER, but only 2-3 times a week because I don’t want to build up a tolerance. This has been a HUGE help! Having a few days a week where I know I’m going to have good energy is a huge boost. Gentle hugs to you on your journey! :heart:

I heard a saying one time - “Normal is a setting on your dryer.” I modified it to say “Normal is a setting on your dryer and since I don’t have one normal doesn’t exist.” :smile:

Hi Jen -

Don’t know that I have many ideas to offer right now, but wanted to welcome you!