I'm very frustrated

[katiedidit]

i have been dx with fibro, but I feel there may be somethng more going on but I don't even know where to begin researching.  I am constantly exhaused, brain fog (which I know is fibro)  but this is so extreme, I can't even function from day to day.  My exhaustion is constant and I never feel good.  I believe fibro is definately progressive.  Could it be cfs or something else.  All of my fibro stuff is amplified and I just have no energy and haven't had relief from pain in months no matter what I do or what meds I take.  I know this is probally not making any sense.  I just have a feeling something more is going on but no clue what is could be.  any suggestions?

[lvfrogs]

I am finding out that there is so much related to Fibro/CFS. I have only been diagnosed with CFS but wow, it can cause so many other symptoms beyond fatigue only.  I too, have brain fog and just originally put that down to getting older.  I also believe that your hormones get out of whack in perimenopause/menopause and that certainly contributes. You didn't say what kind of doctor you are seeing.  You need one that understands and accepts a diagnosis of Fibro and especially CFS. Good luck!

[shells17]

Hi to all of you,

I know how you feel! I, too, have had cases of major "flare ups" or periods where I just get really weird symptoms that don't seem to coincide with what I have been diagnosed with. This sends me back to the ER/Specialists for more rounds of tests, and usually everything comes back negative. I think that I am just beginning to understand how severe Fibro and CFS are.

I think something that is important to realize is how many other diseases/disorders are often linked with fibro and CFS. I have both, but also have Hashimoto's Disease (which is a thyroid condition that causes similar symptoms to CFS plus others) and have dormant Ebstein-Barr and HHV-6. These dormant viruses can become active again if you wear yourself down too much. I had mono when I was 12 and had major health problems since then including a a period in college where I was out of commission (it sounds similar to how you feel now) for 11 months. Then I was ok for 4 months and then I was in the hospital again with pancreatitis and had to get my gallbladder removed and was out of commission again. It wasn't until a year later that I was finally diagnosed with fibro, CFS, and my other disorders.

My point is that all of these diseases/disorders take a huge toll on your system and when they work together they can really knock you out. You might want to see an infectious disease specialist to make sure that you don't have an active virus in your system. This would make your fibro and CFS that much worse. Also, if you haven't checked your thyroid and adrenal levels I would definitely do so as soon as possible. These hormone difficiencies are also common with fibro and CFS and increase the severity of your symptoms.

I still struggle with the fear that there is something underneath it all, but these diseases alone are enough to knock someone out. The key is to try to stay positive (I know it's hard!) and follow your gut instinct! If you think that there is something that they are not catching or that they are not treating then fight for them to do so!

Good luck and hang in there!

Hugs,
Michelle

[Caroline565]

Hi katiedidit,

There are so many possible causes for fibrofog. How is your sleep? Are you taking anything to promote deeper sleep? You didn't mention how you are managing your pain. Through medication, exercise, or other? I find that exercise helps to clear my brain and manage pain by releasing endorphins.

I was wondering also if you have a good understanding of another often co-existing condition called Myofascial Pain Syndrome (MPS)? Until I understood the two and how different they are, it was hard to even explain or understand what was going on with me. Some doctors consider them to be one in the same, but they are not.

You may have a treatment plan, but it doesn't seem to be working for you. I would discuss other options with your doctor. If he is unable to help you, I would be looking around for a doctor experienced in treating FMS.

[katiedidit]

thank you all for your suggestions and your kind words.  I am 39.  I have been dealing with this for a couple of years but dx a yr ago.  I will ask my dr. about your suggestions. maybe I'm just having a major flare, I don't know.  I did turn in my notice at work.  I just can't do it anymore.  Of course, finances are always a worry, but my husband reassures me we'll be ok.  I really don't have any other option.  It is just too exhausting, which makes one feel like their not able to "suck it up" and "deal with it".

[pdljmpr]

It might be perimenopause also.  I started with peri when I was 39.  Peri is the 5-15 yrs before menopause is truly there.  Also there is no way to test that it is peri.  The lab tests on hormones are not accurate because of the fluxuations.

I have both fibro fog and peri fog, when they both act up the same day it is very hard to think.

[strut526]

Can i ask how old you are?
After watching an episode on Oprah a few weeks ago..about women and hormones..some of the things we have, re: FMS, has same symptoms when the hormone levels are out of whack. lack of energy, memory issues..that most people think as associated with getting older..

or just the fibro..the pain we feel can be confusing too..we think it is just the fibro..and we live with it, and yet, something else can be wrong..clear as mud?! lol

today i had blood drawn to check my hormone levels, scheduled a bone density taste. i am going to take better care of my self this year...

[kiddthekatt]

Hi;
  I have also been dxed with fibro and cfs. Right now I'm being double teamed by both diseases and it's taking it's toll on me. I have been suffering with severe exhaustion for several weeks now, and severe fibro pain for several months. It seems to want to settle down some and then pow!! It's right back. I've been tested for Lupus, Lyme, and several other nasty things and they are all negative. And this is after 5 different blood works.

   I had to go to the hospital the other night because once again the pain was out of control. I also have been dealing with fibro fog, and it is not letting up. I force myself to get up, take a shower and move around some, I'm in agony regardless so I might as well try and do something. My skin is so sensitive that it feels like it's being peeled away when my cat runs against me.

   To think, I was actually happy this morning because I thought that it was Friday..:( Hang in there kiddo, I'm praying for the both of us.

gentle hugs
Angel