Aloha!

Hey my name is Ryan, I am 25. I started having "fibro-like" symptoms about 5 years ago that have been progressively getting worse. It began with trouble sleeping. I just stopped being able to get comfortable. After about 5 minutes of laying still the entire area of my body that is touching the bed/couch/floor/chair (I've tried sleeping everywhere) gets sore. I roll to my side and after a little while the same soreness occurs. I went through about 6 beds before I realized (bing!) it wasn't the bed. I wake up every morning having woken up multiple times throughout the night and feeling stiff, sore, and groggy. The other symptoms I started having were brain fog (trouble thinking, remembering things), eye irritation and watery eyes, stiff joints, tender muscles, and a huge loss of energy.

I have seen chiropractors, doctors, naturopaths, an acupuncturist, and a therapist. None of them have given me a diagnosis. A few had some theories about my symptoms, mainly stemming from an accident I was in when I was 13. But I have not been officially diagnosed with Fibromyalgia or anything else. I have been on this road to try and find out what exactly I have and how to deal with. Cause it really sucks when I can't even tell people why I'm too tired to go to the beach, or can't work a full day, etc. I would at least like a name to this "face" of symptoms.

I was a runner before, and a musician with hopes of touring around the Hawaiian Islands (where I live) and eventually the world. But right now getting through each day takes all my energy and focus. I do my best to keep a positive outlook on life, but lately these limitations to my life are all I can think about. Anyway, it's comforting to know that I'm not the only one going through these types of things, and I'm hoping to gain some insights into my condition through this forum. Thanks for reading my story

Ryan88,
Welcome to the forum. The sleeping problem you mentioned makes me wonder if you ever tried using a cotton fiber bed pad. These are usually 3-4 inches thick and can provide extra padding for hips and back and shoulders. This is a pad that is laid on top of your regular mattress. It is not a regular plain mattress pad. I tried all kinds of beds including water beds and they all felt to hard for me and I was in constant pain, until I found this thick pad. Some people like the feather-filled ones and others like the thicker foam pads, but all come in all bed sizes from twin through king.
I know of one little old lady that slept on a big pillow because her muscles hurt so bad.

Have you ever seen a rheumatologist or a neurologist? If you have joint or muscle pain these are the doctors that could help find out what is wrong or at least offer some relief. I am sure other members will join in and offer helpful comments in a attempt to help you. I am happy you found the forum and hope the info here can provide you some pain relief.

Hmm I've never slept on a cotton fiber mattress before. I did lay on one for a while at a mattress store and it didn't seem to make a difference, but it's tricky to know until I've actually slept on one. I've never seen a rheumatologist or neurologist either. I don't even know if there are any on The Big Island. But that's something to look into, thanks 1sweed!

From a fellow ex-musician and athlete, I completely feel your pain, Ryan. I had an incredible future ahead of me as a cellist before my symptoms began over ten years ago at the age of 17. Sometimes I struggle with a feeling of bitterness for what seems like a life taken out from under me, but I then work to remind myself that I am surrounded by people who love me, and that is truly the most valuable asset I could possibly have.

I hope you too have understanding people in your life, as Fibro is a disease that can be terribly difficult for outsiders to fully grasp.

Definitely look into finding a Rheumatologist if you can, Ryan. That's the best place to get started since they can begin testing. If there are no Rheumies where you live, contact a general practitioner about your suspicions, and hopefully then can point you in the right direction. I wish you all the best, and welcome!

I guess my next step is to find a Rhuematologist. I've also been trying some diet changes, not sure if they are helping but at least I'm eating healthier... Wow that must've been tough Whyfor, the cello is such a beautiful instrument, I can only imagine the disappointment. But it sounds like you have a great support of people to adjust to your changed life with. Thankfully I have some great support as well. Couldn't do it without them! Thanks for the comment.

Ryan88 said:

I guess my next step is to find a Rhuematologist. I've also been trying some diet changes, not sure if they are helping but at least I'm eating healthier... Wow that must've been tough Whyfor, the cello is such a beautiful instrument, I can only imagine the disappointment. But it sounds like you have a great support of people to adjust to your changed life with. Thankfully I have some great support as well. Couldn't do it without them! Thanks for the comment.

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It makes me happy to hear that you also have those in your life that support you. With this condition (or really any disease), being surrounded by good people is crucial for your well being, both physically and emotionally. I can't imagine where I would be without my wife. She's never once questioned me or belittled me in any way through this entire journey of mine.

The cello is a beautiful instrument. I actually still have mine from that time. It's actually sitting right next to me in its case. I take it out occasionally to give it a nice cleaning, and it's fun to be nostalgic. Even though I can't really play any more, it's still comforting to have around. May I ask what instrument you use to play? :smile:

Hope you enjoy your time here, Ryan!

I went through the same thing - I was constantly waking up in the middle of the night, and I would go somewhere else in the house to try to sleep, like the couch or the guest bedroom, or even the floor. I figured it was the mattress that was causing me discomfort, but even when we got a brand new mattress, I still couldn't sleep, in fact, it seemed worse. What eventually helped was getting one of those memory foam pads for the top of the bed.

I too used to be a runner, as well as biking and playing hockey, so I understand how disappointing it is to feel like you just can't do it anymore. I often am just amazed at myself anymore if I can manage to walk around the block. I do yoga now, and that does help a lot with my stamina and energy as well as just relaxing me.

Yeah, that's exactly what it's like for me. Every new mattress seems even worse than the last, so I just move from place to place until I finally fall asleep (for awhile). That's great you found something that's working for you. I'm still looking (I tried a memory foam bed & topper, neither worked for me). Hmm, I've had a few people suggest Yoga. Never thought it was my thing, but maybe I'll try it out. Stress definitely aggravates the symptoms. Thanks for the post

I play(ed) The Drums, the Ukulele, the Guitar and sing & rap. I'm working on making my uke & guitar easier to play by lowering the strings way down. As it is right now my hands/ joints get so sore I can only play certain chords for a short while and have to press down very lightly to avoid the pain & stiffness. But it's still better to me than not being able to play at all. Thanks

Ryan88 said:

I play(ed) The Drums, the Ukulele, the Guitar and sing & rap. I'm working on making my uke & guitar easier to play by lowering the strings way down. As it is right now my hands/ joints get so sore I can only play certain chords for a short while and have to press down very lightly to avoid the pain & stiffness. But it's still better to me than not being able to play at all. Thanks

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Oh, that's awesome! You're multi-talented! :-D I always wanted to learn the guitar, but just never had the free time. It's such a versatile instrument, which fascinates me to no end. And dang it, Ukeleles are phenomenally under-appreciated. Good on you for sticking with it!

What might also help you out with the pain and stiffness may be a pre-jam-session hot soak of your hands, which can aid in releasing your tight muscles and easing the inflammation (if you happen to have any) in your joints. After about 10 to 15 minutes or practice, dunk your hands in some ice, which will stay that building ache in your hands. Don't do it for too long, just for a few solid moments. Then gently re-warm your hands to room temperature, and after a few more minutes, you can repeat the process.

This was a trick I had to utilize near the end of my cello career, and it kept me going through those last few big concerts. It isn't convenient, but it worked for me!