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Posted 3/22/2011 6:49 PM (GMT 0)
After months of lurking on this forum, I have finally decided to break down and join in posting. I have already learned so much from everyone here and would like to thank you all for being supportive even if you didn't know it. :-)

I am 49 years old and although my GP says I have fibro, I have not been "officially" diagnosed by rheumy. Over the years I have had so many crazy things happen to my body that at one point I was totally convinced that I was dying.

Some of the current issues:

Painful scalp

Bridge of my nose is sore

Headaches almost daily...kind of feels like my skin is pulled too tight, making the tissue underneath sore.

Neck tension (mostly right side)

Shoulder pain (mostly right side)

Dense, painful breast tissue

Painful around both elbows

Stiff fingers and hands

IBS symptoms

Bladder issues

Gallstones

Sore lower back

Very sore in connective tissue between groin and legs

Sore knees

Persistent sore throat

Used to suffer terribly from dizziness but has been resolved

Involuntary muscle tension (especially in the legs)

Pain on top of right foot

Although I have muscle pain, a lot of the pain seems to be in tendons and where there is connective tissue.

I have had MRI of the brain that showed 6 white spots (head of neurology states not disease related, just sometimes happens without cause), scans, spinal tap, etc. Ruled out lyme, MS, etc. Biopsy of a swollen lymph node area (negative). Even ended up having a heart cath after two "glitches" in stress tests.

I also have small nodules under my skin that get quite sore at times. Sometimes shooting pain in areas, sometimes nagging pain.

I've always had problems believing that you could be in pain without an underlying definitive cause, so I still get very scared when something hurts out of whack or if I don't feel well and no one can figure out why.

I don't have debilitating pain like some, but have bouts of pain for days that just make me miserable.

I find it very hard to just "shrug off" the pain and find myself constantly searching for other reasons that I could be having pain or other symptoms. Of course, I always fear the worst, which ends up making me very anxious. For instance, if I'm having pain in my groin, I'm constantly touching it, feeling for lumps, swollen lymph nodes or some other scary explanation. I will then go back to Fibro 101 and see if what I'm going through is on the list. A never ending circle!

I am usually a very positive thinker, but unfortuntely very negative about my health. I am only 49 years old and worried about what the future will bring as far as pain, other symptoms, frequent trips to the doctor, etc.

How does everyone else know when something is truly wrong, or should be checked when there's always soooo much wrong??

I'm very sorry for the long post, but as I said...I've been lurking a long time! Thanks so much for letting me vent. It helps a lot. smilewinkgrin

 

Posted 3/22/2011 7:40 PM (GMT 0)
Hi HereinPA, welcome to the forum! Getting a diagnosis is not always easy. So many other conditions have many of the same symptom as fibro. The first step is doing bloodwork to rule out other possibilities. It took years before I recieved my diagnosis.

We know our bodies better than anyone one else, so it is important to make a list of symptoms and let your doctor know everything. I've taken pictures of rashes, swelling and lesions to take to the doc...any new symptom should always be reported. I'm one who does have

autoimmune issues along with fibro, making my diagnosis difficult.

Worrying doesn't help and anxiety can cause us more pain because of the added adrenaline and cortisol being pumped into our blood stream, makes our musles tighten. I know, it is easier said than done. Exercise helps me with stress issues along with relaxation therapy...deep breathing exercise and meditation. For me, controling stress is a must...the mind can create many scenarios when worry and anxiety sets in. Prevention is key!!!

Every appointment with the doctor make sure all your questions get asked. Make sure you are prepared with a list including any new symptoms you may have.

I'm so glad that you have joined our fibro family. The people here are great and really do understand. Wishing you the best...post often, we care!

Hugs, Robin

Posted 3/22/2011 8:29 PM (GMT 0)
Hi, I joined a few weeks ago and everyone seems so caring. Its a nice place to be where everyone understands when we have a bad day and rant or a good day and others rejoice with you.

I don't think anyone has all the answers but I like to think of this forum as the place where everyone shares a little and what works or not for them so we know we are not alone in the suffering.

Take care
Rose
Posted 3/22/2011 8:38 PM (GMT 0)
Rose and Robin....

Thank you so much for the support. I guess I just have days that I can't help but think "If there wasn't anything really bad wrong, it wouldn't hurt so much"...

I've had blood work done many times over the years, along with so many tests that even though I dread the results, I also hope for something that they can pinpoint and say "ok, here's what's wrong and here's how we're going to fix it".

Most days, I can accept that I may just hurt. Period. Unfortunately, today is not one of them. It does help however to have you all listening. Thank you so much.
Posted 3/22/2011 9:28 PM (GMT 0)
I used to have health anxiety and like you, every new thing sent me running to the computer. So my advice is.....STOP! :) It can only make you get even more anxious and it's a vicious cycle.

I have had the yo yo diagnosis for a very long time and I find out in a couple weeks for sure (if that's even possible) if I have Fibro or not. I was in the mindset that I actually HOPED something would show up in the blood work just so I can say see!? It's not all in my mind. But Fibro is an invisible condition that can not be proven concrete by tests alone.

I have a lot of things wrong with me as well and I find it hard to know where one condition begins and another ends. That is what I have my doctors for. However, I do know my own body so if something happens out of the norm and persists, then I contact my doctor.

We can definitely understand your pain. I have pain every single day and it makes living life rough. But I try not to let it stop me from enjoying things such as my family, pets and hobbies.
Posted 3/22/2011 10:31 PM (GMT 0)
Hi, Here, and welcome!  I'm glad you decided to join our family.  I do think you will like it here, Here.  tongue

It sounds like you do have your diagnosis.  You've been through the bazillion tests and your GP says it's fibro.  My Internist diagnosed me.  I have never been to a rheumy.  So now you need to accept it and keep moving.

 

Sherry is right about health anxiety.  I did that at first.  I had a home medical book and would run to it.  I thought every lump was a tumor and I even thought I had jaundice!  Finally, I tossed the book in the garbage and have been a whole lot better! 

 

Because fibro has so many weird things, it can be frightening.  But I'm so used to it now and it's a part of my life.  I don't like it but I have found that I can live a full and enjoyable life in spite of this illness.  You will too.  Just relax and hang out with us.  We'll show you the ropes!

 

The way you describe what is happening to you sounds very much like what I have.  Fibro waxes and wanes so that's why you have better periods and periods of misery.  When you are having a flare, just remember it will pass so find something to focus on that you can do and be as comfortable as possible.

 

It's hard to determine when something is "truly wrong".  You have to use your good judgement.  If it is muscle, tendon, and ligament pain, that's most likely fibro because that's what fibro affects.  If you are having a sharp pain in your side or abdomen where you can't catch  your breath...see your doctor.  When my heart palpitations started, I knew you could get them with fibro but I still got myself totally checked out.  That gives you peace of mind.  So, remain calm but use good judgement, too.

 

Pull out that positive thinking again!  Don't worry about the future because no one knows what the future will hold anyway.  Why worry about something you can't do anything about?  That's a waste of energy and will only make you stressful and your pain worse.  Now, I've had this illness for 24 years.  I'll be 64 years old next month and am going strong like the Energizer Bunny.  Yes, I poop out in the afternoons but I still do quite a lot of things.  I pace myself, too.  I see my doctor every three months, mainly for diabetes, but we talk about fibro too.  I've stayed about the same for quite some time.  When I get the muscle pains, I know where that comes from.  I don't run to the doctor with every ache, pain, and fear.  I've pretty much kicked anxiety to the curb.  It was more dibilitating than the fibromyalgia!  So, I just look forward to each new day with anticipation and enjoy my life.  I have too many blessings to let fibro stand in the way of my happiness!

 

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 3/23/2011 1:55 AM (GMT 0)
Hi hereinpa and welcome to the forum!!  I believe we have to be proactive in our healthcare but it can be over done.  I usually read up after I get the doctors comments.  It is sometimes hard to know when things are serious for me, at least it used to be.

I have a few issues and would blow things off till I ended up in the ER pretty sick so that made me a little gun shy.

You have gotten some great advice already but I wanted to welcome you!!

There are a few of us from PA on here..

Posted 3/23/2011 12:45 PM (GMT 0)
Thank you everyone for such a warm welcome and terrific advice. It's wonderful to have a place where people "get it". Hope everyone has a terrific day!
Woke up to snow on the ground and trying to shake off the cold here!
Posted 3/23/2011 3:31 PM (GMT 0)
Oh, I hate that! Nothing like cold to make your muscles tense up :( I hope it warms up quickly over there..

Debbie
Posted 3/25/2011 3:16 AM (GMT 0)
HereinPa...I feel your pain too! Sometimes it truely does get so over whelming! When you think about hurting almost from head to toe its amazing anyone could cope! Thank God for Good people who understand and Good medicines! Keep hanging in there until you find relief! I just found this forum tonight and I am so thankful I did. So much good advice and careing people! Keep us posted and God bless you.
Posted 3/25/2011 6:38 AM (GMT 0)
Is our state unlucky hereinpa? i'm also from pa southwestern pa to be exact i have alot of the same problems, diagnosed fibro, and i also suffer from anxiety as well and i must say geez it almost seems like alot of us anxiety sufferers have fibro also, i love taking hot baths especially for my leg pain, i hope you get better lots of great people in this forum, you can try vitamin d atleast 1000 units seemed to work a bit with me kind of, i really hope you feel better and everyone else with fibro this is really tough and extremely depressing.
Posted 3/25/2011 9:41 PM (GMT 0)
Hi there! I'm in Hagerstown, MD, just a hop skip and a jump to PA! tongue

I know with me, if I stretch (easily while breathing into it) first thing in the morning, it helps to get me through the morning. Vicodin helps me get through the evening! smilewinkgrin

I also take warm baths with Epsom salts, use a heating pad, TENS unit, and arm/hand warmers while typing on the computer as my hands tend to freeze.

Nice meeting you!!

{Hugs}
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