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Can anyone tell me more, I was just diagnosed yesterday...

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Posted 9/23/2011 4:12 PM (GMT 0)
Hi, after dealing with several muscle and joint pain for over a year now I finally got into a rheumy and they said I have fibromyalgia.  I am only 26, I've been put on hydroxychloroquine 300 mg.  I have a few questions for those of you that have more experience with this illness. 

1) Have you tried this med before and did it work?  And how long before you could notice a change (I know it can take months)?

2) When I am having a lot of body pain I feel weird mentally, like forgetful, trouble concentrating, grumpy, basically dazed and confused.  I actually remember feeling mental changes prior to the physical ones.  I have read some about fibro fog, is that what this is?  Does anyone else get like this?  What helps and will the new med I'm on help with the mental portion too?  Right now I am to take 5 mgs of adderall twice a day to combat these symptoms...

3) I keep having a positive ANA with a titer around 320 and speckled cells, but am testing negative for autoimmune disorders.  I am suppose to get more bloodwork but the doc seemed kinda stumped on the ANA thing.  He led me to believe that this could possible develop into something worse.  Did anyone else have a positive ANA and if you did, did your fibro turn into something worse?  Does fibro get worse with time?

Any info you have would be great, I don't know anyone else with this personally and no one seems to understand how much pain I am in...I'm very bummed out today...

Posted 9/23/2011 4:35 PM (GMT 0)
Hi Fluffer,

It is a bummer to find out you have fibro. It's not a small thing.

Things will start to sort themselves out, the more you deal with it and read about it. I've had it for at least 25 years, since I was not much older than you, and some things are worse now (but how much is just aging? Nobody knows.) But the pain is better controlled. My doctor assures me that, underneath it all, I'm a healthy person - I just don't feel like one!

I can't help you with the test stuff you mentioned. Someone else will come along shortly who can, though, I'm sure. We are a very friendly group so you landed in a good place for support!

If you click on the first thread on this forum, "Fibro 101," you'll find all kinds of useful information.

Debbie
Posted 9/23/2011 4:47 PM (GMT 0)
Hi Fluff, welcome to the forum...the fibro family. You will meet alot of caring and understanding people here.

First off, fibro does not progress to other diseases. Fibro is a condition by itself. It is possible to have an autoimmune disease with fibro...many of us do, myself included.

I have been on hydroxychlooquine (plaquenil). It is not used for fibro and mainly used for autoimmune conditions. It took almost 3 months before I noticed any differance. I no longer use it,,,I'm on methotrexate now for my MCTD. It took awhile before I recieved my diagnosis.

The fog is common in both fibro and connective tissue diseases. It is very common, and I think we all have it to a certain degree.

Please check fibro 101 on the top of the page. Sherrine has put together an excellant resource for fibromites.

Heat is our friend, it soothes our muscles...the microwave moist heating pads are great. Exercise is wonderful too and a daily routine helps with allieviating stress and preventing muscles getting stiff.

You will also get some great info from the Lupus forum in regards to possible autoimmunee involement.

I take Savella for my fibro and use a muscle relaxer as needed.

I'm glad you have joined us...keep posting, we care :)

Hugs, Robin
Posted 9/23/2011 4:57 PM (GMT 0)
I've never taken that medication, sorry.

For me, it has been hard to say when this really started. The pain seems to have started approximately a year ago, but the more I learn about Fibro, the more I recognize symptoms I had 20+ years ago. It probably just reached a point of severe flare pain that could not be ignored any longer. I can relate about the brain fog. I wasted 2 hours yesterday just sitting on the couch, knowing I needed to get going and do something (anything!) but it was like an uphill battle.

I use the wrong words quite often and have always been an excellent speller and good with words (I write a lot) and now I have trouble finding the right word -- it's like I know the word I want, but I just cannot find it in my rolodex of a brain. I have been like this when I've run into people I know, too...and it's very embarrassing if I'm in a situation where I need to introduce someone. It's like that part of my brain is just busy -- and I guess it is busy, holding down the pain and just getting the body to work, it's working very hard, that's why stuff that our brains consider unnecessary kind of shut down (that's my theory anyway)

But that part comes and goes and as time goes by, I'm better able to kind of laugh it away -- someone here referred to it as a "gift from the fibro fairy!" So I try to think of it that way and not stress about it much, because stress is just going to make everything worse.

I've learned to cut back on things myself, to take less pressure/stress off, and not to go looking to take on other peoples' jobs or problems...at the same time, don't feel guilty about that. We all must do this (seems like a lot of fibromites are busy overachievers until fibro slams on the brakes and says "hey now, slow down")

Glad to have you here but sorry you have a need to be -- anyway, arm yourself with knowledge, and this site is a good start to that.
Posted 9/23/2011 5:47 PM (GMT 0)
Oh I forgot I got a dx of UCTD also. That's what the hydroxy blah blah blah is for. The med is suppose to hopefully treat the ANA issue which might make me feel better he said.

Yea I am definitely a overachiever. Right now I work full time monday-friday and a part-time job sat & sun, plus working on grad school. I have accepted that I need to drop the PT job.

Just a sidenote I never felt this way until after I had mono! I've been sick ever since.

Thanks guys, I plan on posting a lot more. It is nice to have people who literally feel my pain. I coulda punched my boss the last time I got really sick when she said "Are you sure it's not just a cold?"
Posted 9/23/2011 5:56 PM (GMT 0)
Fluff, that explains alot. The UCTD is undifferentiated connective tissue disease...that is an autoimmune disease...that was my first diagnosis. Many times a person will stay in that category....meaning we know you have an autioimmune condition going on, we just don't know what connective tissue disease it is.

Hugs, Robin
Posted 9/23/2011 9:48 PM (GMT 0)
Hi, FlufferNutter, and welcome!  I'm glad you found us and joined the family.  You have gotten great info from members already.  My husband used to have rheumatoid arthritis and was on that medication along with about four more.  He didn't have problems with it but he never told me how he was feeling, either. 

 

From what I understand, the ANA can fluctuate.  It can be elevated one time and fine the next.  It's just one test of many that help doctors diagnose you.

 

Fibro Fog.  I was so frightened when it started because I thought I was getting Alzheimer's.  I find that laughing about it and relaxing help me.  If I stress out, I can't remember my own name.  Here is a site to show you are not alone. 

 http://webspace.webring.com/people/fc/cfsdays/follies.htm

 

Be sure to check out Fibro 101...the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are calles Symptoms and A Thorough Explanation of Fibromyalgia.  You will learn a lot there and understand your illness better.  Knowledge is power.  You don't let your mind conjure up things to frighten you that way.

 

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 9/24/2011 1:49 AM (GMT 0)
Firbro Fog.

To me it feels like I am swimming around inside of my own head. Other times I feel like a rag doll, watching myself from outside of my body.

It isn't like ADD "Oooh shiny!". It is more like Charlie Brown's teachers "wahhh wahhh WAHHH WAHH" mixed with a whole lot of "where are my keys and why are both of my socks wet?"

I dunno any other way to describe it.
Posted 9/28/2011 8:15 PM (GMT 0)
There are days that this Ptmama forgets where she is and where she is going and why she is even there....it scares me sometimes....unfortunately, we have not found any drugs or combination of drugs that will help me so far...I l actually loss the use of my legs a year ago sept 1, 2011 and was in the hospital for 10 days and in a nursing home for 30 days trying to get the use back...my legs still do not function the way they did before all of this happened....i lost my job and i am so limited in what i can do, the pain is constant, and now, i have started to have severe head aches, every test they do comes back ok, my sed rate is running moderatly high 44 and up......I hate my life most days, because i can not do anything without pain...i do go to water aerobics 2 days a week, some of its hard, but its nice to get out and do something i enjoy....
Posted 10/3/2011 2:37 PM (GMT 0)
Hi Fluffernutter,

I too have the positive ANA, speckled. It baffles my drs.. I have also tested positive for anti ds/DNA, p-ANCA and Rheumatoid Factor. My mom has RA and I'm scared I might get it too. Hers started with a major injury, she also has FMS.

The fibro fog is the worst... hard to explain to kids that I already forgot what you were just telling me...

My mom took hydroxychloroquine but developed double vision. I know it helps for many people though. You need to have regular eye exams while on it.

At least having a diagnosis made me feel like I wasn't crazy... though I hate how fibro kicks my butt after stress...

Welcome.
Posted 10/4/2011 11:08 PM (GMT 0)
I was diagnosed last year after about 2 1/2 years of pain. I had been seeing a chiropractor, but seemed to be getting worse. I then got tortecollis (sp...means turtle neck) one winter (worse pain ever), so I just kept thinking something with that. They (docs) would send me to Orthos, PT, MRI, Xrays...nothing! So got this diagnosis only to find a few Rheum. wouldn't see me. My Int. Med. works with me and knows I am not a big Med. taker...although when it gets bad enough I have taken steroids or muscle relaxers. The fog comes and goes, generally if I am not sleeping well. I will say the more I move (and not aerobics) such as yoga or pilates, I feel better...too much physical back fire--too little---awful. Try to limit computer time or holding neck in one position for very long. Hang in there!
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