My Story: Living with Fibro

My Story: Living with Fibro

I was a healthy 22-year-old, I worked 50 hours a week on night shifts at a heavy job that I enjoyed because it kept me in shape. On the weekends I walked pretty much everywhere. I wasn’t a fitness fanatic but I had the energy to look after myself, now I am the opposite.

I remember my symptoms. At first, I had this pain in my left arm up to my chest, like a burning sensation and it was so painful I went to bed to rest.

I couldn’t take it I didn’t understand why I felt the way I did I couldn’t explain it and I was sending myself into overdrive worrying. I went to hospital the next day, I apparently had tennis elbow but I felt so weak.

That same night I went to a different hospital who said I may have pulled a muscle at work. I didn’t believe them either, I knew something wasn’t right.

Beth Walder

Over the weekend it got worse the pain moved all through my body, when one part of body felt better, another part began to feel on fire.

Later on, that week I went to my doctors. My doctor never faults me on anything he thought I had a trapped nerve. I took his advice on board then I ended up going back to see him.

I had constant pins and needles in my feet, my eyes were a little blurry, my legs and back ached, my chest was shooting, and my jaw hurt so I would sit with cream on my body and a hot water bottle under my chin.

After two weeks my doctor printed me off some information on fibromyalgia. I’d never heard it but considering there was over 20 symptoms I matched every one of them.

I then had to go to see a nerve specialist. I have a nerve in my elbow that occasionally will play up.

Living with Fibro since my diagnosis –

I now listen to my body instead of fighting against it. If I need to rest, I do. I don’t over work myself; I have nothing to prove to anybody. What needs to get done, will get done, in my own time.

My doctor advised me to be careful about having a child as my body was weak, I wanted a baby, I was 24 and ready for the challenge.

I now have a 10-month old healthy daughter, a true blessing. So, I need to look after myself for her.

I’m soon to be 26. Since diagnosis nothing has changed, I still get bad days–sometimes those days lead to weeks. Mornings are the hardest especially throughout winter.

My concentration isn’t the best and my memory well, what can I say? Why am I so forgetful?! This for me is the worst most frustrating symptom of them all. I forget everything.

I have to put all my appointments, shopping lists and dates of outgoing bills into my calendar.

I don’t talk to people about my condition unless I am asked, for two reasons.

  1. They’ve never heard of it
  2. I don’t look sick when I have a flare up so they don’t take much of an interest

I wanted to share my story with you.

I hope it helps you all and remember you are not alone!

Authored by: Beth Walder

Beth Walder is a 25-year-old resident of Birmingham in the United Kingdom.

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Linda

I’m HIV + for over 30 years. I conquered it. I’m in constant pain from side effects of the medicine. In 2010 I was sent to a rheumatologist because they thought I had fibro. Sure enough I was diagnosed.
At 71 many days are a challenge. Especially when you are mentally 38 yrs old. I have pain medication that dont really like but when you can’t get the natural like medical marijuana and kratom.
Good luck with your little girl. May she be that ray of healing hope that keeps your pain at bay.

Beth

In reply to Denise..

Hi Denise where i have written i went to a specialist.. it was a neurotologist, i just couldnt think of the name for it!

My appointment was around 2 weeks after diagnosis.
They put all the wires onto me and tested my muscles etc and thats when they told me about the nerve in my elbow.

What I have written is only a brief description of my experience since diagnosis as its been 3 years i couldnt remember all the ins and outs but ive done a decent bit of research into fibro and i strongly believe i have it, but i know theres always others worse off, i bare that in mind

Thanks everyone for all your comments
x

Taun P.

I can relate to your experience & symptoms. Having an invisible illness and hearing comments of encouragement that are really doubt can make you doubt yourself. Getting to the point where you no longer pay attention or give weight to the skeptical remarks is major in relieving some stress. Enjoy your baby & continue to live your life by doing what’s best for you first, so you can be there for family experiences. I really enjoyed reading your experience. Fibro is an individualistic illness but we all can relate to one another in some way. Thanks for sharing.

By the way Beth, you’re not only absolutely beautiful inside as well as out but you are very brave and most courageous! I pray that you can find relief somehow someway! May God bless you in your years to come…

I too have fybromyalsia. I got it after a car accident.I feel your pain.It hurts all over and in some of the strangest places.Hang in there for yourself and your baby.
Donna

I am 66 and have been dealing with chronic pain for the last 29 years. I know how helpless and frustrated you are. I feel like I have all been labeled as just another addicted , pathetic opioid seeking individual. I have severe osteoarthritis through out my body. I have been through ablations , steroid injections , physical therapy , massage , meditation….you name it and the only thing that has allowed me to have some quality of life is my opioid pain medication. I have been cut back to below the recommended MME OF 90 and my life is not worth living anymore. I feel useless and a burden. I have never asked for more meds or abused or sold it. My pain and my life was manageable before all this craziness I can’t imagine trying to live this way until I die ! Please someone help us !!!!

Denise

Beth I would see a neurologists, it sounds like neuropathy, I have CMT and fibro and Marfan Syndrome it doesnt really sound like Fibro to me..I would have Neurologist do some nerve and muscle tests. Keep us posted!!!

Lenore Arbaugh

Such a good story-good in the sense that you really got it across. I get you and I pray that you find relief. I was in my 40’s when mine started, so I have compassion for someone so young. Prayers for you.

Tera C Crayne

Don’t give up!

Diana

God bless you girl! I am so glad you decided to have a baby as there is nothing else on earth like it. GOOD for YOU! and I really do know how much harder it makes things.

We should all have this, framed, where we can see it everyday, several times a day: “I now listen to my body instead of fighting against it. If I need to rest, I do. I don’t over work myself; I have nothing to prove to anybody. What needs to get done, will get done, in my own time.”

I am not sure I would believe in fibromyalgia if I didn’t have it myself. 🙂

Carol Hammond

I am 74 and have had fibromyalgia since I was about your age. As a child my doctors use to say I have “growing pains “! I’ve always thought I had FM as a child too. Now if anyone including myself touches my skin it hurts; does your skin hurt?

I had a total knee replacement in 2014, it has been a complete disaster and the Drs say it is because of my FM, PLEASE, most Drs don’t believe in it!

Enjoy your child and take every day as best you can.

Yes I have same symptoms only 74. Also told I have lyme disease, which is often disguised as fibro. We need pain meds/ management.
Feel 4u.
Please feel free to correspond. I live in Boston area.

Denise Bault

Beth, so sorry you developed this life altering illness at such an early age! At least you know to listen to your body. I wish I had listened to mine, much earlier in my disease. I was diagnosed at age 46, after several years of doctor visits, tests, etc. Had it much longer, of course. God bless and good luck!

susan

I forgot to mention that I have M.S. Secondary Progressive. 3major back surgeries too.

susan

I have experienced the looks and the phrase but you look so good you can’t be ill. My Neuro said to me that would happen alot. I guess it has to be visable to have a incurable disease. I learned not to take it personally. I had a great career and was very independent and active in sports, swimming and fishing, surfing etc….I have to focus on what I can do. It can be very difficult at times. Take Care and do your best…

Thank you so much for sharing I hope it has helped you. I remember when I was young and the world was mine. Then my tragic car accident along with working motorcycle swap meets, doing such hard although enjoyable labor. I also had my own cleaning and decorating business as well. No one ever told me to be careful with my back. Now it’s a mess along with my ankle, knees and hips, eat up with osteoarthritis, bulging and degenerating discs. I still feel young until I want to do something and my body simply won’t let me. Knowing there’s a plentiful amount of pain medicine out there for all of us to make life more bearable makes me sick. Sick that so many for whatever reason have decided and chosen to put all of us through a living hell on Earth. I too have a little one and I “won’t stop”. I Won’t Give Up and that’s one thing that they can’t make me do!

Rosalind Rivera

Beth, you are by no means alone. I’ve been suffering with Fibromyalgia for at least 15 years and it’s a nightmare. I also have Lupus, Rheumatoid Arthritis and a few other medical issues that go along with these insidious diseases. It is so very difficult to even get out of bed in the mornings. I have to wait until my very limited pain medications cations have been in my system for at least an hour. Of course I am exhausted as I didn’t sleep well the night before as my body was wracked with pain then also. I truly have no real words of comfort because there aren’t any however I will emphasize that you are not alone.
Rosalind Rivera
Lucerne Valley, Ca.

Cakes

I found this new information about fibromyalgia from a medical site. It might be worth checking into for those with this painful disease!

https://www.medpagetoday.com/rheumatology/fibromyalgia/79763