First time poster, newly diagnosed!

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AEW0184
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/2/2010 4:00 PM (GMT -7)   
Hi everyone,
I knew I needed to find a forum with people who have been where I am and people who could give opinions and advice.
I have had what I consider deep bone pain for atleast a year but in the last 3 months, I experience it all over my body along with what I guess are tender points because it feels like I am bruised in certain areas. I feel the ache like you get with the flu and cold weather and rain is my worst enemy.
about 3 months ago, I went through alot of stress, couldnt sleep and that seemed to trigger the all over body pain. I also have no energy and this is something that has been going on for a few years but it has gotten worse. It is everything I can do to get dressed to pick my daughter up from school and I have a 4 year old at home. I still try to work one day a week but thats all I can do.
I saw my doctor finally about 3 weeks ago and she went with a diagnosis of Fibromyalgia but wanted to rule out other things so she ordered blood work and in the mean time but me on Tramadol for pain and Amitriptylyine 25 mg.
I got a copy of my labs yesterday and my ANA was positive and the ANA pattern noted was speckled and nucleolar patterns also detected. I would really like some help understanding the two patterns, I have done research but I was told she was doing this test to rule out Lupus. She also did a RA factor test which is negative and other blood work. My BUN/CREAT level and potassium were the only other flagged results, both of those being low. In the past my SED rate is usually high but it was 12 that day, anything above 20 is considered high. I have a family history of thyroid problems which I thought may explain the fatigue but it was 1.43 with a normal range 0.5-5.0. I had just finished a round of antibiotics 2 days before the blood work and my white blood count was 10,600 so it was a little high. Anyway, my doctor said it would take about 2 weeks for the Amitriptyline to work and to take the Tramadol 50 mg every 6 hours until it kicked in. Well it is week 3 and the bottle of tramadol says take one every 6 hours for pain but she only prescribed enough for one a day and so now I am back to maxed out doses of naproxen sodium and ibuprofen and feeling horrible. I ache so bad that I am in tears most nights. Heat does help and I am back to getting plenty of sleep but I literally feel like my bones hurt. I know there are no nerves in bones and that it is not possible for my bones to actually hurt but it feels like it is deep bone pain. I am guessing it is the connective tissue around my bones maybe. Anyway, I was under the impression that the ANA test would be negative if it is fibromyalgia along with the RA factor which was. She said these were to rule out anything more serious. I am 26 years old and feel 96. I would appreciate any information you may be able to offer. My doctor is a GP so I am considering seeing a specialist.
Thanks for listening!
April

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40587
   Posted 2/2/2010 4:20 PM (GMT -7)   
Hi April,
 
Welcome to the fibromyalgia forum.  I am so glad that you have joined us.  Please do check out the fibro101 thread, at the top of the page.  It has a wealth of information in it. 
 
I don't understand a lot about the blood work but I know that they have to rule everything out before they can diagnose fibromyalgia.  I know my doctor did a lot of it before I was diagnosed, also exrays and mris. 
 
I hope that you feel better soon.  It is a hard time of year all the way around.  Keep posting and let us know how you are doing.
 
Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Confused725
Regular Member


Date Joined Jan 2010
Total Posts : 27
   Posted 2/2/2010 7:58 PM (GMT -7)   
Hi Aew,
 
Im sorry for all you are going thru. I too, am going through something similar!
 
Im exaughted right now & cant type much but I'm curious what your results mean in all of this too.
 
I'd first, look for a rhematologist & look further into the blood results, as its obvious that they do the ANA for a reason. I dont think, personally, i would stop and except a fibro dx, not just yet. This is only my opinion.
 
I do know that when an ANA is positive, the Dr will usually do more Ab testing, perhaps ENA, DS DNA, Anti Ro, ect to tell more. Usually will lead to something more specific, if there is anything.   It could mean nothing BUT with symptoms like yours (And mine are almost the same) I would make CERTAIN, so you can get well!
 
Certainly, make an appmt w/ a rhematologist. They are much more used to dealing with Autoimmune diseases than a General practitioner. Bring a copy of your labs to him/her & find out what is going on.
 
I will write my story, tomorrow.........Just wanted to add my 2 cents, for what its worth!
Goodnite

AEW0184
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/3/2010 10:25 AM (GMT -7)   
Thank you both for your reply. I am just so eager to have answers and I agree the I need to make an appointment with my rhematologist. I have a few good days and put it off and then it gets really bad and I realize I need to feel confident in the diagnosis. I look forward to reading more of your post and will stick around and hopefully have an update soon.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 2/3/2010 12:33 PM (GMT -7)   
Hi April, welcome to the forum. It is frustrating dealing with pain, worrying about bloodwork.. Try to do what you can to keep your stress level down. As you have already learned stress
adds to your pain. Find something you enjoy to distract yourself. I'm sorry you are going
through this. This forum is great because we do understand, the pain, the frustration and
waiting. We have been there. Take one day at a time and don't give up hope!

I agree that you should find a specialist. I see a rheumy who I like. He lets me ask lots
of questions and is willing to spend time with me. I no longer feel like a number and I
don't feel rushed during appointments.

You recieved a fibro dx, time will tell if you also have a connective tissue disease.
Hang in there! Sending you gentle hugs.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 2/4/2010 9:11 AM (GMT -7)   
Hi, and welcome!  Well, I'm the odd one here!  I have never been to a rheumatologist.  I use a board certified Internist who is also a diplomate.  He has to keep abreast of everything new and take tests yearly, I believe, to keep the title of Diplomate.  Anyway, the bottom line is you need a doctor that believes that fibro does exist but you do also need to have other illnesses ruled out first, since other illness and fibro share the same symptoms.  There are tests for the other illnesses but not for fibro...except a pressure point test.  Make sure they rule out Lyme. 
 
I see Karen has directed you to the Fibro 101 thread.  There is a link called What Else Could It Be on there.  This is exactly why all the testing is run.  There is also a link to the symptoms of fibro and you might see yourself there.
 
I use malic acid/magnesium supplements and vitamin D3 supplements to help with pain and fatigue.  Many with fibro are deficient in these vitamins and nutrients.  There are links about this in Fibro 101.  It's worth passing by your doctor.  My doctor said he didn't think it would help but it wouldn't hurt me either.  I tried it and it DID work for me and I can control my pain using them along with ibuprofen with food and extra strength Tylenol.  This works great for me because if I'm having a better day, I don't have to take as much ibuprofen and Tylenol.  Plus, I don't have any of the side affects of some of the more powerful meds.
 
Be sure to keep moving, too!  If you sit or lay too much you will be stiff as a board.  I do gentle stretching exercises (found in Fibro 101) and I also walk and swim.  These are good gentle exercises for fibro and they do help with the pain and my overall feeling of well-being. 
 
Attitude plays a large part with this lousy illness, too.  Instead of looking at what you can't do, look at all you can do!  Look at all your blessing, etc. and you will feel a lot better.  I look forward to each new day with anticipation.  I also find things to focus on and the pain fades somewhat in the background. 
 
Be sure to pace yourself.  You can't do all that you could before fibro in the same time frame.  I still do everything I used to but it takes me more time.  Lots of times I break things down into days....like mopping.  That kills me so I only do a couple of rooms a day.  This way, it doesn't put me in a flare.
 
You know the value of heat with fibro.  Moist heat is wonderful.  Many here have Bed Buddies. You can find them at Walgreen's and other places or you could make your own by taking a tube sock, filling it 2/3's full of raw long grained rice, and tying a knot at the end.  Pop it in the microwave and it gives off moist heat due to the moisture in the rice. 
 
I'm so glad that you found us and joined in!  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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