Got a questionable fibro diagnosis...

[insania2016]

I recently had doctor's appointment that resulted in him saying that I had fibromyalgia.  His other guesses were somataform disorder, small fiber neuropathy, and chronic fatigue syndrome.

I didn't actually get to go the Hopkins university hospital like I mentioned in another post.  They send me to some community doctor's office attached to Hopkins.

The diagnosis was based on my symptom journal and a physical examination, i.e. movement was checked, balance...

To date I haven't had a brain MRI and my last spinal MRI was done last year when the symptoms first appeared.

So far here's what has been said:

Not MS
Not Lyme disease
Could be Fabry's
Could be Fibro
Could be Larsen's
Could be Somataform
Could be Chronic pain syndrome
Could be Chronic fatigue syndrome

I was given Savella under the assumption it is Fibromyalgia.  The Savella has helped with the dull ache and fatigue but the following is still happening:

1 - Facial numbness
2 - Buzzing sensations in arms, legs, and abdomen
3 - Needle feelings when I use my muscles (these friggn' hurt)
4 - General weak feeling
5 - Neck muscles ache
6 - Muscle twitching everywhere I feel everything else
7 - Big toe and side of foot is noticeably numb - where it's numb it will twitch and feel 'buzzy'
8 - Bicep aches still, like it's going to cramp.  Same deal with the legs.

I can move everything OK.

I have another appointment with my regular doctor.  I'm kind of at my wit's end with this stuff.  What should I say to my doctor?

Should I limit the symptoms to the main things?  Maybe I'm rattling off too much?

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Please refer to my earlier post to you this month. I would limit your complaints to your physician. For example, I would suggest that you present the most disabling complaint first and proceed from there. Many times these diagnoses take time to make and time to treat. Also, underlying psychological issues, such as depression and anxiety, will need to be addressed in order to make recovery.

I would suggest that you continue working with your physician regarding this. By the way, have you seen any specialists in fibromyalgia such as a rheumatologist?

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[ewford]

The Lymes tests you got were virtually worthless as labcorp and Quest look for the Lymes spirochete in ONE form of Borellia.  There are over 200+.  Also, this bacteria seriously lowers your immune systems response, so your body will not produce antibodies to it.  Do a google search about false Lyme test results. You will be shocked to see they miss 90% of the actual pos infections.  

This is an intracellular mycoplasmal chronic bacterial infection.  Search ILADS and look at what is being found in MS, ALS, Lupus, Fibro and other autoimmune illnesses.  They are finding the Borellia bacteria in most missdiagnosed patients.

I cant believe they actually wanted to diag you with Somataforms. OMG.  Do you know what that is? It's a "we think you are a hypochondriac" disease.  Research it.  I know you are ill because I went through it, but I'm getting better.  But I wasted 14 + months getting 8 diff diagnosis.  When in reality, I have Lymes.

[hooloovoo]

Whenever I do anything, those muscles or tendons also hurt way more than they should. It is like my body is hyper-sensitive to doing anything. When I do not exercise vigorously or do any hard work, my muscles and tendons feel pretty normal. When I tried taking an SSRI, it actually made me feel much worse in a lot of ways so I stopped taking it. Plus it made me feel like a completely different person. I didn't like that either. That Savella might not be working for you. It seems like people with fibromyalgia have unexplained widespread pain which is often worst in the morning. It doesn't sound like you have that exactly. I am noticing my problems are much worse after eating. I'll get the neuropathy (pins and needles) feelings specifically after eating. Do you notice any differences with what you eat? Do you feel okay in the morning until you have eaten?

[ewford]

Like how you were diaged with Somataform disorder.  They just said you were making it up.  Much like the Munchausen and Munchausen by proxy diagnosis.  These doctors have no clue.  they run tests, and dont see anything, so it's in your head.  It has to be.  They are never wrong.  They know more than you.   And yet you get worse...

  Think stealth pathogen bacterial infection.  

[ewford]

Also, I forgot to mention that the muscle ache or cramping is indicative of a Mycoplasma Fermentens Incognitus strain infection.  This may or not be tick borne as they are finding this bacteria in Gulf War soldiers and even soldiers returning home now from the gulf.  To top that off, they believe now that this and Lymes can be passed sexually causing chronic bacterial infections in spouses and even infecting children through the placental blood barrier.  Do some research on both and get tested ASAP.

[insania2016]

I've felt really bad the past couple of days.  I feel pretty weak.  I'm headed to the doctor just in case it's a reaction to the Savella.

[insania2016]

The muscles only hurt when I use them.  They feel like I've actually been working out for awhile, not the after ache but kind of the burn.

The only other pain is the needle feeling.  My muscles are numb in those same areas and they get that buzzing feeling.  So it's not all of them but certain ones.

My sleep is touch and go.  I have to use a CPAP due to hypopnea.  It's not obstructive, I just breathe too shallow.

[hooloovoo]

Do the muscles only hurt when they are used? Do you get any other pains that move around? Do the muscles hurt a lot in the morning? Do you have any trouble sleeping or feeling refreshed after sleeping?

[insania2016]

Update...

So the Savella is working as it is handling the fatigue and overall ill feeling that I've had.

I seem to be left with just certain muscles that hurt when used.  By hurt I mean there's an ache and the feeling of some needles being jabbed in there.

Also the areas that hurt have the "buzzing" feeling, twitching and numbness.  The left side is a lot worse than the right.

I get the feeling that this may just be something that takes time to figure out.  I read that fibro often is present with something else.

I wonder if fibro is a product of depression over the whole thing?