New here - unsure of things

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luvskermit
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 1/15/2010 12:58 PM (GMT -7)   
Hi everyone. I was advised at my last rheumy appointment (in December) that she believes I'm suffering from fibro.  I have looked around a bit, and my symptoms are VERY mild compared to what I am seeing.  I was originally referred to the rheumy for a positive ANA, muscle/joint pain and exhaustion a year ago.   I do not want to go on any prescription drugs at this time, but I am taking aleve regularly.  I have always been very active, and lately it seems I become more limited every day. 
 
I have joint pain that comes and goes on a whim.  The joint pain is mostly in my fingers, toes and hips.  It is not unbearable, most of the time. I went in to her office in December for difficulty in walking due to hip pain.
 
When I am exhausted, rather than just tired, the muscles of my thighs, upper arm and forearms all ache and feel like I have weights attached to them.  Sometimes my back muscles are included, but not always, and when my back is involved it tends to be a day I have to struggle to stay awake.   It's almost feels like I do not have a choice but to sleep.
 
My newest symptom is lower back pain, which seems to get worse each day, no matter what I do or what I take. I've never had issues with my back, although I noticed over the fall that I would sometimes have to stretch during my nightly walks because I would feel tight. It has now been constant pain for a week and its interrupting my every day activities including sleep.  I do feel a bit of relief on my walks, though, like the ache dulls a bit, then goes back to "normal" again.  
 
Is all of this normal? Does anyone have any suggestions for the back pain? Is there anything I should be watching for?
 
Are there any websites you recommend? Trying to weed through the information out there is exhaustive.   Don't mean to ramble too much. lol.
 
Thanks in advance for any feedback or suggestions!!
 
 
 

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/15/2010 1:20 PM (GMT -7)   
Hi luvskermit,

Wow, I read your post thinking that I could have written the exact same thing two years ago!

Yes, my BIG symptom (that I assume is due to fibromyalgia) is lower back pain. Mine can be excruciating. The difference between your lower back pain and mine is that mine gets worse when I walk (you said yours get better when you walk?)....to the point that I'm forced to stop walking and sit after a very short time.

This isn't necessarily going to happen to you, but my back pain became bad enough that I had to get a wheelchair in order to be able to continue to go to work. I couldn't even walk from my office to my car anymore. I have to use the wheelchair in the kitchen too, because I can't stand long enough to cook much of anything before the pain becomes unbearable.

In any case, yes, everything you describe....the fatigue, feeling like you just have to sleep sometimes, back pain, muscles aching and feeling heavy....they all sound like typical fibro symptoms.

HOWEVER, I should sound a cautionary note here: a positive ANA is NOT a sign of fibromyalgia.....it's an indicator of an active autoimmune disease process. Your joint pain and fatigue, etc., could also be due to lupus, or even a combination of rheumatoid arthritis (RA) and lupus, known as rhupus.

We are not doctors here and cannot diagnose anything....we can only share our own experiences. I can tell you that I ultimately ended up being diagnosed with fibro, RA, AND lupus, along with many other disorders. Fibro tends to accompany autoimmune diseases even though it is not classified as autoimmune.

Please talk to your doctor about the positive ANA and the possibility that you have an autoimmune disease as soon as possible.....good luck! Keep us posted!

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 1/15/2010 1:50 PM (GMT -7)   
Hi, and welcome!  Many of the things you mentioned do happen with fibromyalgia.  Your doctor will run a lot of tests to rule out other illnesses first and then comes the fibro diagnosis. 
 
The thing about fibro is it is different with everyone.  We all don't have the same aches and pains.  But, we usually all have back pain, shoulder and neck pain, too. 
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia including a list of symptoms and a link to What Else Could It Be.  You will learn a lot there.  We have tried to put the important stuff there for easy reference and you don't have to hunt all over the Internet, either.
 
I'm so glad you found us and joined in and 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


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 1/15/2010 1:56 PM (GMT -7)   
Hi luvskermit, welcome to our fibro family. On the top of page one you will find Fibro 101,
it contains alot of great information. Make sure to check it out.

Fatigue and muscle pain are two main complaints of having fibromyalgia. Your rheumy can do
a tenderpoint exam to help with the diagnosis.

You said you have a positive ANA. Bloodwork is one of the first thing a rheumy should check
to rule out any of the connective tissue diseases. I'm guessing that you have had more
bloodwork to do antibody testing. Getting a dx sometimes takes a long time because anti-
bodies wax and wane. Fibro and some of the connective tissue diseases have overlap symptoms and it is possible to have fibromyalgia along with a CTD. Fibro cannot be dx
through blood work, but the CTD's can be. I have MCTD along with fibro.

I have degenerative disc disease, and have had back surgery. Discuss your back pain with
your doctor. Sometimes the pain is due to inflamation and NSAIDS are prescibed. You should
be careful when lifting and avoid bending over, stoop down to pick things up. If you start
to feel pain in your buttocks that runs down your leg, it could be sciatica. Don't ignore it,
it can get worse and cause permanent nerve damage.

Keep a list of your symptoms and questions and bring them with you to each doctor's visits.
Request copies of your bloodwork and ask you doc to review them with you. It really
helps to be proactive in your healthcare.

Glad you have joined us, come back often, there are lots friendly fibromites here who
are always willing to help.

Hugs, Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


luvskermit
Regular Member


Date Joined Jan 2010
Total Posts : 166
   Posted 1/15/2010 2:03 PM (GMT -7)   
Thanks, Nasalady! The positive ANA was the reason my primary doctor sent me to a rheumatologist. All tests since the positive have been normal. She did tell me that the ANA test has nothing to do with the fibro diagnosis. I apparently hurt at all the right places, and I wouldn't even have known if she hadn't poked at me. As for the back pain - the pain would cause me to stop during a walk, almost like a cramp, and I would stretch a little bit and it would ease. This past week, with the constant hip and back pain, the walking seems to ease it but then I stiffen up worse after I'm done. I'm becoming a big fan of hot baths!

Sherrine ~ Thanks to you, also. I have had a lot of blood work done, and the only thing that is consistent is the vitamin d deficienty. I have checked out a bit of that thread, and plan to go back. I do have neck and shoulder pain, but I have always attributed that to a neck injury from the 90s...but who really knows? I am trying to put everything in its place, yet maybe they have multiple places?

Does anyone else get 'stuck' in a position if they stay in one too long? I have learned to be very very careful in that regard. Lol. Comfy chair? Suuuuuure, until I try to get out of it. I have aged so much in one year that it scares me.

Thanks again for all your help. Finding this sight makes me hopeful!

confused Okie
Regular Member


Date Joined Apr 2009
Total Posts : 164
   Posted 1/15/2010 3:02 PM (GMT -7)   
Autoimmune? Have you been tested for HLA-B27 gene? I have spondy with fibro, sounds all too familiar. Google it.
If you think you can, you can. If you think you can't, you won't.
I may not do things like other people, but I get things done in my own way, in my own time.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 1/15/2010 3:08 PM (GMT -7)   
If you sit or lay too long, you will be stiff as a board with fibro.  When I get up in the morning, I need to use a cane to get going.  Then I loosen up and don't need the cane. 
 
There are good stretching exercises in Fibro 101 that really do help.  Also, find a gentle exercise that you can do daily.  For me it's walking and sometimes swimming.  Both of these are very good for fibro.
 
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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