Not typical symptoms

Has anyone been told that their symptoms are more inline with Fibromylagia than Chiair? I have Type 1 Chiair but the doctor says alot of my symptoms do go with it. He wanted me to get tested for Fibro, just haven’t been able to go get tested yet. Have headaches, neck pain, numbness and tingling in neck, overall pain, very tired all the time, muslce spasms in my legs, ringing ears, IBS, dizzy, nauesa, choking and sometimes struggling to find my words.

1 Like

Hi Dpbstev4,
Just basically all you experience ties in with Chiari, however one or two of your symptoms I have not yet experienced. I would encourage you to test for Fibro, even if it is just to rule it out as this will confirm what type of treatments to consider and what to expect, how to organise your life to be as comfortable as posible. Make sure you rest enough and avoid sensory overload as far as you are able. Listen to your body. When you do not feel up to people or activities etc, be kind to yourself and do what your body needs. You have to remember that no one else will really fully understand how you feel, what will over exert your body etc. It is totally your responsibility to help them understand hhow this actually affects you physically. You need them. Wishing you well. Hang in there

I was just told a few months ago that I have Fibromylagia.I would look in to it to rule it out or see if you have it.Some of the symptoms are alike and it never hurts to get it checked out.

I too was told by a neurologist that I had to fibromyalgia before they found the Chiari.
She didn’t bother to check my reflexes.
I think the ‘ibs’ is what’s confusing them that’s not a Chiari symptom but u may have other disorders aswell
Fibromyalgia isn’t really diagnosable.
It’s just a last case diagnosis they give when they’ve ruled out everything else.
I don’t think they should be ruling out Chiari in your case with the exception of the ibs all the other symptoms you describe are classic Chiari.
See a Neuro surgeon not a neurologist and make sure you have a full check up where they check your reflexes… Hoffman and plantar.
A neurologist told me i had fibromyalgia and I would be better off if I had been diagnosed sooner and not prescribed lyrica to hide the worsening symptoms
All the best X

Thanks for the info. I went and saw two different Neuro surgeons, they checked my reflexes. They said my reflexes were good, my hand eye coordination was good. They made me close my eyes and touch my nose, all that good stuff. They tried pain pills on me but I had a bad reaction to all of them. I can’t work and be on that stuff too. They said I wasn’t bad enough for surgery. All I can do is just deal with the pain right now. I take IB when it gets really bad. Just don’t know what else to do. My primary dr. wanted to put me on Lyrica but it is so expensive even with insurance so I give up.

I’m sorry to hear of your suffering.
I’m v glad your reflexes were good.
That’s a good sign.
I took lyrica for 6 months before diagnosis…
It is soooooh expensive you are right and there are so many horrible side affects.
There’s even a group on fb called "Lyrica survivors"
But it did help with the nerve pain and I didn’t have any issues quitting it so I wouldn’t rule it out if your options are that or auffering pain.
It comes down to proper assessment and clear patient communication.
Chiari symptoms can change and become severe very quickly. If you notice anything worsening communicate clearly with your practitioner.
It’s very obvious when surgery is necessary.
At the end of the day - it has to be really bad before they will operate because it’s major surgery with potential life changing risks So if you are still making it to work and the op isn’t successful they don’t want to have regrets when you are left in a wheel chair unable to swallow solid food or brush your own hair.
They prefer that you turn up in that state and then they can have the satisfaction of fixing you.
Ibuprofen does absolutely nothing for Chiari symptoms but diazepam and cortisone has been the most successful treatment for me so far. not to mention good posture so no looking down at phones or up at screens or doing anything that wibbly wobbles the head… that includes singing I have surprisingly discovered.
All the best and hope you feel better soon

I have those symptoms too along with Fibro. I had my decompression surgery 2 years ago. I was never prescribed anything for the Fibro and I guess I am glad I wasn’t. I suggest you go to another Dr. My surgeon wasn’t sure the decompression surgery would help, but it did help with some of my problems such as not being able to walk in a straight line and my spinal fluid is now flowing so I am not having drop attacks. But overall, most of my symptoms are still there since I am 58 and have lived with untreated Chiari for so long. Mine was 9 mm down into my spinal chord. I am wondering how far down yours is. Although, it doesn’
t necessarily matter.

Hi Deb, I was diagnosed with fibromyalgia in 2004, Chairi in Jan 2017. I have had all the same symptoms as you, besides the leg pains. Chronic, Hemplegic and Basilar migraines with daily headaches. Migraines have been better since menapause. Lately it’s dropping things, choking on saliva (waking up to choking) or after eating, trouble speaking at times, dizziness, off balance, shoulders arms and hands falling asleep at night unless I wear a collar. Tingling in hands fingers and bottom of left foot. Pain at base of skull, neck, shoulder and upper back when I do too much. I do have IBS and bladder issues.

My pain is so much better since I know what not to do and to do…I wear a collar a lot, sleep in a soft collar, dont move my neck too much, don’t lift heavy items, don’t bend over too much, rest my head when I feel pain coming on, drink lots of water to keep spinal fluid flowing (I have blockage), no more motorcycle and quit drinking alcohol. I am very sensitive to odors and loud music. I also have Congenital CSS. No surgery yet. Tina from WI

I know it’s very frustrating. And sorry to tell you but so far no one has come up with a test for fibromyalgia, they just go by symptoms. I am a nurse, and it’s very frustrating for patients and the healthcare staff because you would like a definitive answer.

I also had all those symptoms and was also told that the issues in my legs and ibs were not chiari related but i had decompression surgery and guess what those symptoms also went away after my surgery. I have not had any problems at all with leg pain or numbness, ibs or trouble swallowing since about 6 months after my surgery when the syrinx disappeared. Hope this helps.

As far as neck numbness, tingling and pain i had that as well severe headaches and felt like my neck wasnt strong enough to hold up my head most days all of that also went away after surgery. Just because its not currently connected to chiari doesnt mean its not they still cant explain to me why the symptoms they told me were not related are now gone. I’ve never had any other testing done but i am completely symptom free and medication free now for almost 2 years.

Dear Deb…,

Sounds like you have full blown Chiaris - not Fibro!

I was diagnosed off-and-on with fibromyalgia AND “Chronic Fatigue Syndrom.” The one thing that kept forcing doctors to UN-diagnose my fibromyalgia was that I did not have any of those 9 “pressure points” that they say can trigger excessive pain when touched. The docs kept pressing on these spots during an exam and asking me, “Does this hurt any worse when I press here?” I kept telling them, “Not any worse than usual. I hurt at these pressure points ALL THE TIME.”

Another thing that kept ruling out Fibromyalgia was whether you have worse days and better days. Certain stressers provoking the bad days. I had to confess that I NEVER had any good days. When I told the docs I was in agony from head to foot 24/7, they said, “That’s not fibro…” and thus I’d be UN-diagnosed from having fibromyalgia. Of course, with Chairis, these symptoms fit to a “T.”

The fact that you are having choking problems - your gag reflex is not working. THAT is so Chiaris! I met a 66 year old lady whose only symptom of Chiaris was that her gag reflex didn’t work. She kept landing in the ER with pnuemonia because she kept aspirating her food and drink. She had no other symptom than that. Sounds like your symptoms are screaming “Chiaris!” And - if you really do have Chairis, meds are never going to work - 'cuz big chance your cerebral-spinal fluid flow is restricted - and meds are able to get to your brain. (Or - they ‘pile up’ in your brain and make you feel like you’re drowning in a drug fog!) My meds didn’t work one iota until after my decompression surgery. Hope you can find a neurosurgeon who REALLY knows Chiaris.

You need to find the right Nero who will listen to you. Doesn’t sound like fibromyalgia to me but chiari all the way.stay away from pain meds they don’t work. Go to pc and get anti-inflammatory and muscle relaxer. Remember ib is harmful to liver. I’m 16 months post surgery and med free. One thing I learned from tons of mri is tonsils flair. I had 9 mms, 22 mms, 16 mms in that order of scans. That is why anti-inflammatory is GREAT. Use the software neck collar when sitting at tv or sleeping. World of difference. Having 2 level neck disk fusion 3 years before decompression chiari surgery and still have 4 really bad neck disk and not on pain meds that is how I survive. Sounds like you may want to rule out disk problems for pinched nerve. Good luck. For surgery it was the best thing I did.back to work in4 weeks back on Harley in 6 months. Find the right doctor.

I was diagnosed with Fibro back in the 90’s when it was fashionable-but I was positive at all 11 pressure points. I was also diagnosed with sleep apnea then. Jump to present day. I am here on this site because I have all of the symptoms of Chiari and need to seek testing. 2 years ago I was diagnosed with a POTS “cousin” Neurocardiogenic Syncope and alot of those symptoms seem identical to Chiari-I am so confused!
It took 5 years for a diagnosis and thru all that time alot of people including doctors made me feel crazy. My philosophy is -“tomorrow will be different”. I again recently started back on a CPAP for apnea (stopped using it for decades) and after reading on this site I now know to ask about “central apnea” . I have had headaches for decades too, but have been really bad over the past 3 years. I have GI/IBS issues ,severe fatigue, numbness in arms and legs with weakness…all could be my NCS but other symptoms may be chiari