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Newly Diagnosed. What To Do?

Newly Diagnosed. What To Do?

I had my first rheumatology appointment yesterday which confirmed the diagnosis of Fibromyalgia. I sat in the car and cried for 20 minutes as I'm only 18 and this wasn't the answer I wanted. I have no clue of how to deal with this. Are there any tips or tricks out there to help deal? What is good for flare ups? Is there anything that can help improve your life? I'm at such a loss and I don't know what to do.

A MyFibroTeam Member said:

Im sorry to hear you have fibro!!! Remember to allow yourself to grieve and let the feelings out. Did the rheumatologist give you meds?
The bigest and hardest thing ive had to learn is to pace myself and not do too much. Break everday activities into smaller tasks. Eg. Vacuuming, take a break after 10 mins, then go back and do more.
Also learn to be gentle on yourself!
If you work and still feel like you can manage keep working, if you are exhausted (and are able to) try and take some time off.
Heat packs are my best friend in a flare, or a hot shower. Rest when you can.
Try and find a good dr who is helpful...i went threw about 6 of them in a year before i got a good dr.
Hydrotherapy (excercises in a warm pool) or swimming in a heated pool is good for exercise and gentle on the body. It helped me heaps.
Do some reasearch to better understand fibro and then try to explain (or print material online off and give it) to family and friends. Hopefully you can get a good support network around you as you journey through this. On here is also a great support network. Search questions you have on here and you will probably find others have asked the same questions, and if not ask it, cos someone else is probably wondering the same thing.
Take one day at a time and be gentle on yourself.

posted over 4 years ago
A MyFibroTeam Member said:

First off, I'm very sorry you got this terrible news that you have Fibro!! I can't imagine getting it this early in life because I got it in my forties and was still pissed at how my life was taken away, so getting it this young must be devastating! You always keep hope that either one day they will find a cure or my doctor has told me they have seen the odd case where Fibro ran its course then was over! Now finding how to cope or live with it is another story! I am from Ontario, Canada and our weather is brutal which I find has a lot to do with flare ups! The winter is the worst and an electric blanket is my best friend! Lol. However, now that I've had Fibro for so long, I find the really hot days of summer also bother me and although I don't want you to get even more depressed but I've found fibro gets worse the longer you have it! You will be told exercise will help and sometimes it does. You will be told eating healthier helps and again, it may or may not. You will be told this helps or that helps or this person leads a normal life with it or some people are bed ridden! All I can say is everyone is different and everyone has different degrees of Fibro! Do what you can and if you think something will be worth the pain afterwards, do it!! Whatever works for you is worth doing and don't let anyone tell you it's all in your head!! I honestly found getting a dog was the best thing in the world for me! He made me get up and out each day for a walk in the beginning when I wasn't too bad and was there beside me in bed when I was having my bad days! He was always there to listen to me complain and never said anything hurtful back, lol, so that really helped as well. Anyway, I always ramble on so to cut it short, do what works for you!!! Everyone and every situation is different so put yourself first and go from there!! Oh yes and this is the best place to come for questions or just to bitch, we all get it!!!

posted over 4 years ago
A MyFibroTeam Member said:

Listen to your body and know your bodies limitations. Delegate duties in your house and don’t let people put u down. This is real and none of us asked for this. We have to stick together and deal with this

posted over 4 years ago
A MyFibroTeam Member said:

I was dx in my early 20's and im now 55. Agree with Lisa, they didnt know much back then. I figured out things that helped by trial and error. All good suggestions above. Pool exercise, stretching, yoga, watch posture, use back supports/pillows, move around often, moist heat pad, keep working if you can. Get a good dr that wilI work with you. I worked fulltime until last year and miss it and the money terribly. A physiatrist finally helped me back then and said "Good news is it won't kill you. Bad news is we don't have a cure. Just manage the symptoms." 30+ years later this is still true! I think of this often and am grateful that at least it wasn't fatal. I try to think of it as any chronic illness to be managed such as diabetes.

posted over 4 years ago
A MyFibroTeam Member said:

I agree. Read everything you can. But don't think you will respond to all the suggestions. You have to find what works for you. But by reading, you can understand the disease a little better. I'm not sure anyone really knows much. Still researching and trying to understand. What I wrote and how I wrote is systematic of fibro. Disconnecting, not flowing. Inability to communicate well. Not always. Sometimes unable to concentrate. Think I will stop before I get more confused. Frustrating. Don't give up. "Keep on swimming."

posted over 4 years ago
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