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Diagnosed with fibromyalgia

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Posted 10/14/2014 7:44 PM (GMT 0)
Hello everyone,
This is my second post here. My first post was awhile back before I was diagnosed and was researching finromyalgia symptoms. Today I saw a rheumatologist and was diagnosed with hypermobility syndrome and finromyalgia. I am now so overwhelmed, and even cried in the car! I know very little about fibro, and the first thing I thought was, "this is all in my head, this is self inflicted." While I know I should be relieved to have an answer, I still find myself overwhelmed, upset and very embarrassed about this diagnosis. I am afraid to tell anyone because of the stigma, and I'm worried people will think I don't have a real illness or that I'm just weak, crazy, etc. Whle writing this, I'm crying. I'm 20 years old and have failed the last two quarters of college and quit my job because of this. I'm exhausted, and my mental ability to handle this has been depleted by dealing with this pain, fatigue and brain fog for so long.

How did you handle your diagnosis? Are my feelings abnormal?

On a side note...does anyone find that their pain is magnified by the cold and rain? The seasons are changing here in the pacific northwest and my pain has gotten much worse as the rain and cold comes!
Posted 10/14/2014 8:21 PM (GMT 0)
(((((((((Gentle hugs))))))))))

Hang in there, honey. First off this is not a deadly disease. It's just a pain in the butt disease. ;-)
There will be times you will feel like death warmed over, but if you can find that sweet spot of balance in your life it's tolarable.
First makes sure to find your limits and pace yourself. Then work with your doctor on finding the right medicine for you. Everyone is different in what helps them. It's a trial and error thing.
I love using heat wraps and topicals. Others try other things and I'm sure they will follow me with advice.

Life's not over, it's just slowed downed and changed some.
Posted 10/14/2014 10:18 PM (GMT 0)
Everyone does not understand how real this disease is...but more do all the time...and do we really care about those who do not, because that would sound like someone lacking in compassion and we should not care what they think..

Most of us have been there with friends or family members, their pain is real, yours is not...duh..

Did your dr make treatment recommendations?

Yes, most of us feel rain and cold like crazy!!

Just take one step at a time , be sure to stretch and light yoga if you can, we tend to tense up and it makes our muscles shorten in. We need to keep ourselves as flexible as possible.

There are many self help things you can try over time to feel better.

But what did the dr suggest?
Posted 10/14/2014 10:24 PM (GMT 0)
Hi, Dancer. I think I remember you...so someone must have referred you to Fibro 101, our first thread. If not, you really should read it.

I was relieved, just because I'd been dealing with the condition for so long before my diagnosis.

I'm stubborn, and I refuse to be quiet about the way I feel...I'm sure some people who know me wish that weren't the case ;)

But yes, it is hard at first. You have a reason and a right to grieve. But you can feel better - not like you used to, probably, but better.

I hope you'll keep posting. We are always here for you.

Debbie
Posted 10/15/2014 12:58 AM (GMT 0)
Dancer,
So sorry you are facing this at such a young age. You will learn to cope and you will get some meds and practices that will put you back on a path toward all the ambitions you have. Keep checking in to the forum and know that you have friends who understand here.
Heart
Posted 10/15/2014 1:34 AM (GMT 0)
Hi Dancer:

Welcome. Many illnesses have no age barriers. You are quite young to be challenged with Fibromyalgia. This is a wonderful forum that provides explanations, encouragement and a shoulder to lean on when the pain is very bad.

Yes, weather impacts me. I hate cold, snow and wind. It only leaves me with a handful of not so bad days a year. When the pain comes down some you feel almost human again.

People can't see your pain so it is hard for them to comprehend what you are living with. Yes, it is real pain.

You may find benefit from medications and alternative treatments.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...
Posted 10/15/2014 2:43 AM (GMT 0)
Hi Dancer ,
Wow. .. you've received some really good advice. These folks here are amazing. With time and finding what works for you , you will feel Better. You may never be pain free, but you will learn to manage it so it nags at you in the background and not constantly screams in your face.

This condition is nothing to be ashamed of , in fact it is like the common cold to a rheumatologist. They see it more than any other conditions they treat.

I work 50 plus hrs a week and still do things I like to do. I'm either stupid or stubborn but I don't take any crap from this condition. I keep moving and you will too. Be open to different treatment suggestions and give them a fair chance to help you. And YES YES YES the rain and the cold will cause it to be a roller coaster of a mess. But. .. hang in there. You can do this and we're all here to help you.

Take care my friend and keep posting.
Michael
Posted 10/15/2014 2:48 AM (GMT 0)
Hello everyone, and thank you all for such kind words.

I have been doing a lot of reading, and the more I read, the better I feel. This community is also amazing, and I am so thankful to not have to deal with this alone!! In the end, this is only going to make me STRONGER!

As far as treatment goes, my doctor recommended to start pilates (for my hypermobolity syndrome), work towards regular exercise again beginning with walking (I used to be a runner and rhythmic gymnast before this nasty disease took over my life!). She mentioned that a lot of the treatment will be done on my end: making lifestyle choices, focusing on my eating disorder recovery to maintain good nutrition, and most importantly, learning my limits. As an active athlete my entire life, realizing I now have "limits" is especially tough (what do you meaaannnn I can't just start running marathons again!? LOL!)

Another big thing she mentioned was my isolation...I don't know if this is common, but when I first started experiencing symptoms, I isolate quite a bit, lost most all my friends. I didn't want to get out and do things, I wanted to just stay home, study and keep to myself. I suddenly felt like I didn't fit in with the people my age, and I become very envious of people my age being full of life while I was not. She made a huge point that I need to start mingling with people again, and "get myself out of my apartment."

She also prescribed me flexeril, 5mg to take at night. She said with my weight currently being very low due to an anorexia relapse, she wanted to start me off on a "babydose." In the past, I have tried hydrocodone for my pain, which just left me nauseous. I then was prescribed Tramadol pre-diagnosis, which works well, but it is not something I want to be on long term. I also am on meloxicam which helps with joint pain from hypdermobility syndrome I am really hoping that this flexeril helps!
Posted 10/15/2014 3:09 AM (GMT 0)
The muscle relaxers seem to help a lot of the forum members.

Do you maybe have malabsorbtion from the eating issue? When we are low in certain vitamins , the fibro is intensified...so making sure you are getting all those nutrients, can help you long term..

My daughter has early fibro and the hypermobility also. She danced all her life and now enjoys pilates, and very intense yoga. When she started the higher level yoga..she thought she could not do it, but the instructor told her they would build that strength week by week and she is getting so much stronger!!!
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