Aa
Aa
A
A
A
Close
1717548 tn?1422560010

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)
dizziness
vertigo
tinnitus
lightheadedness
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.

nicole
1 Responses
Sort by: Helpful Oldest Newest
Avatar universal
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 www.immed.org.  Also compare your symptoms to Lymes through CANLYME.  Also search ILADS  (www.ILADS.org) 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.
Helpful - 0
Have an Answer?

You are reading content posted in the Fibromyalgia Community

Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.