Fibromyalgia Community
fibro or thoracic outlet syndrome?
About This Community:

This patient support community is for discussions relating to fibromyalgia and related pain management.

Font Size:
Blank Blank

fibro or thoracic outlet syndrome?

i'm a 33 year old female and i was dx with fibro a few years ago.  i've never been able to get it fully under control and have tried several different medications, aquatic therapy, physical therapy, etc.  i've actually ended up being allergic to many medications (muscle relaxers and ppi) that i had taken for quite some time.  now my dx is in question.  should i listen?  could i have been misdiagnosed?  i also have chiari malformation, hypothyroidism, cfs (now in question as well i suppose), splenic artery aneurysm, bicuspid aortic valve, depression and anxiety (i don't think thats my whole list).  my symptoms include:
several different types of headaches; classic, common, and complicated migraine...possible cluster headaches, what i call lightning bolt headaches (cluster?)
dysphagia (eosiniphilic esophagitis)
i feel very heavy at times, like i'm trying to walk thru water
restless limbs
severe neck/shoulder pain
gerd/acid reflux
esophageal spasms
i tend to drop things when i am extremely tired
extreme chronic fatigue (never, ever feel rested)
turning my neck in any direction even a little is very painful
muscle spasms
lower back pain/spasms (although does not seem to be related to the TOS)
occipital neuralgia

dr did the arm test and said my heart skipped 2 beats and faded at certain placement.  i cannot hold my arms above my head.  most of my pain is centered around my neck/shoulders/back of head.  i have never heard of thoracic outlet syndrome before and he believes my fibro dx is wrong.  i cannot have any diagnostic testing (ct, mri, etc) due to insurance, but have had them regularly up until late last year.  i've read the arm placement test is not really enough for a correct dx for this issue.  will my scans from the last 1-4 years show anything?  does anyone else have any experience with this?  thanks so much.

Related Discussions
2 Comments Post a Comment
Avatar m tn
Nicole, ever had a Hysterectomy/endometriosis?  I am not saying that as a joke, but a common problem considering your symptoms.  I believe either Lymes Disease or a Mycoplasmal bacterial infection.  Search IMMED or  Also compare your symptoms to Lymes through CANLYME.  Also search ILADS  ( to find a Dr near you that believes chronic intracellular bacterial infections. Also researh IGENEX labs and Lymes and coinfections testing.  Your symptoms are VERY much Lymes/Myco.
Post a Comment
Weight Tracker
Weight Tracker
Start Tracking Now
Fibromyalgia Community Resources