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Fibromyalgia
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Posted 8/27/2013 1:18 AM (GMT 0)
I'm usually not super comfortable putting myself out there and posting on these types of threads, but I feel like I need to put myself out there in search of support from other people who might understand what I'm going through.

I'm 20 years old and was diagnosed with fibromyalgia in May. After reoccurring back/neck/head pain, I was sent to a rheumatologist to rule out lupus. Saw him only once. My regular doctor diagnosed me with fibro a couple weeks later. I was on medication but broke out in a rash likely due to sun exposure so I had to stop taking it. Lately, everything just feels so off. I'm exhausted but I can't always sleep, I have muscle twitches, headaches (migraine ones behind my eyes and tension), I feel like I'm in that "fibro fog" where I can't focus or remember anything. Some days are better than others. I feel like I'm never without at least once symptom because if something improves it's replaced by a new ailment. My doctor wants me to resume medication because the job I was working that led to the sun rash has ended, but even so that left me tired in the morning where I had difficulty waking up.

I know that everyone experiences different symptoms, but is there anyone out there who can tell me I'm not alone? That this is a normal feeling? I'm constantly terrified that I've been misdiagnosed and that I have some awful fatal disease just waiting to kill me. It's not a rational fear, but it's one I can't let go of. I don't know anyone in my life with fibromyalgia and though I'm always trying to read up on it, I feel like getting other people's perspectives would really help.
Posted 8/27/2013 2:38 AM (GMT 0)
You're not alone. I have so many problems sleeping, it's crazy. I get the headaches that are a cross between tension and sinus headaches. I get back pain, leg pain, chest pain. I get these bee sting sensations all over. My feet hurt so much that I do a sort of shuffle. There's the ear ringing, and I feel like I have a fever but I don't when checked with a thermometer.

I think at the beginning of fibro (and sometimes longer) you spend a long time cataloging the symptoms. Fibro is such an all encompassing disorder that its easy to package something that isn't fibro with it. So asking those questions can be important. If the fibro feels like its worsening, for example, then you need to tell your dr because fibro isn't a progressive disorder. There's a great thread at the top of the forum called fibro 101. It has great information and sources that will help you figure out what symptoms are fibro related.
Posted 8/27/2013 2:47 AM (GMT 0)
Hi, Chimericaldreams, and welcome! Nope, you are not alone and what you feel is very real. These are some things that fibromites deal with. We have the fibro fog...especially when tired, we have pain in all four quandrants of our bodies, we have difficulty sleeping, etc. so you definitely are not alone.

I use over the counter pain medication, vitamin D3, malic acid/magnesium supplements, and a prescription muscle relaxer to help me be in control of the pain and fatigue. I keep myself on a sleep schedule, too, and that helps me.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links for you would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. You just might see yourself there. There are links about the supplements I use and how they work in your body also.

By the way, did your doctor rule out Lyme disease? That has many of the same symptoms as fibro, too. You most likely have fibro but you do want to rule out all the other things to make sure, since there is. O good test for fibro.

But, try not to worry. I've had fibro for decades and have had a full and enjoyable life in spite of this illness.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 8/27/2013 4:41 AM (GMT 0)
Hi, Chimericaldreams,

It is hard when everything seems to be going downhill, and no one understands...I felt that way in the beginning, that I must have something fatal. So many weird, unexplainable symptoms that don't make any sense! And you're so young...that's hard, too. I was about 28 when I really started being affected by it. That was 30 years ago.

We do understand....this forum, and the wonderful people here, have helped me a lot. There's great support. It's so nice to find people who actually know what you're talking about! Fibro affects us all a bit differently, and we're helped by different treatments. But there's enough commonality for good discussions, and sharing of ideas.

Venting, and laughing at ourselves, is healthy, too! ;)

It's important to avoid stress whenever you can. Of course, there are times when it's unavoidable (I've been under a lot of it lately, and that has taken my brain fog through the roof) but - well - we just do the best we can!

I'm glad you've joined, and hope to get to know you better.

Debbie
Posted 8/27/2013 4:59 AM (GMT 0)
Did the rhuemy rule out lupus?

What medicine were you taking that caused the sun reaction?

I have lupus also and I'm very photosensitive. Check out lupus.org or lupus.com to compare your symptoms there too.
Posted 8/27/2013 8:20 PM (GMT 0)
I have been tested for lymes twice, both came back negative. It was the lyme blood test that pointed them in the direction of lupus because of the positive ANA (I don't know much about this only that all people with lupus have a positive ANA but not all positive ANAs have lupus). I visited the rheumatologist before I was officially diagnosed in May. At the time, my symptoms had waned again so he decided that it wasn't lupus, but this was based just on opinion, not bloodwork or any other medical test. He would not told me the symptoms for lupus (and I used all my will power not to look them up) because he didn't want me to suddenly start psychosomatically developing symptoms if that makes sense. It was only when the pain got bad a couple weeks later that my primary physician looked at fibro as the answer.

I was (and will resume) taking amitriptyline/elavil. I also take vitamin D due to a deficiency I've had for a few years. During the summer I work at a day camp and I was out in the sun all day long. The reaction happened probably about a month after I was on the medication and a week or so into my job starting.

Thank you for your kind responses. My parents have been wonderful in response to my diagnosis but it's not something they understand. I am away at college and my friends don't even know what fibromyalgia is let alone understand it. It's hard to avoid stress as the semester begins, but I do my best.

Megan
Posted 8/28/2013 12:21 AM (GMT 0)
Lupus waxes and wanes. You're not always feeling rotten, but sometimes things will swell up for no reason.

If I was you I'd go to the lupus.org site and read up on it.
Posted 8/28/2013 12:50 AM (GMT 0)
I did, most of those symptoms don't match mine. Aside from the fatigue and headaches, which overlap with fibro symptoms, there's almost nothing. I appreciate the comment though.
Posted 8/28/2013 1:31 AM (GMT 0)
I'm glad you don't have this. :)
Posted 8/30/2013 4:15 AM (GMT 0)
Welcome chimericaldreams to the forum! I know going through so many symptoms that fibro produces can be scary. It makes you feel like your falling apart at a young age. I found out the better you can educate yourself on fibro the better you learn to manage it. So if you have some time order a good book on fibro. It really helped me undertand all these symptoms I was going through. It was like a puzzle starting off and after completing the book I felt wow I can see the whole picture.

If you can learn how to manage your fibro it makes life so much easier. Sometimes you might have to adjust some hours in school and work to keep your fibro better manage. If it takes you a little longer in school, it will be worth being healthier. I had to learn that a very hard way. I wish I knew all the stuff about fibro when I was young. Years ago you didn't have all this valuable info about fibro. People just look at you like you were crazy and you complained all the time.

I hope we can help you. I have really enjoyed this forum and hope you will too. Hope to see you around again.
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