Just wondering if any of you get pain over your entire body? Sometimes I get pain from my head to my toes. My joints, bones, muscles, tissue beneath skin hurt so bad. I have seen a Reaumatologists about 5 years ago and she ruled out Fibro because I did not have all the tender points required to diagnose. It hurts me to move and I can't walk normal on these day because I hurt all over. I have a 5mm chiari and intracranial hypertension. I did not have surgery. If any of you have these symptoms please let me know and also what you think causes it.
As my Chiari symptoms have worsened lately, I definitely have pain all over. I have noticed that my sleep is way more restless because I wake up with my shoulders and hips hurting. This was not a problem at all until recently. The aching seems to come and go, I just never know when I get up whether it will be a bad day or a good day. I know ALL Chiarians feel that way too!
Maybe it’s time to get to a chiari specialist I don’t know about your case but I do know from the long years of suffering that chiari is not taken seriously enough by many Drs.In my case I searched for 27 yrs.without being able to get help because my chiari was boarder line and no matter how many test I had,it seemed hopeless.The main stream medical community just don’t know that in some cases any chiari can cause devastating symptoms.If you can find a NS who is a specialist they are more learned in this condition.If you live near N.C. or even you don’t,people travel to see my NS Dr. Rosner.He is a pioneer in this field,without him I’m not sure I would have ever gotten help.Chiari has some really strange symptoms they range from hurting all over to numbness,tingling,heart palpitations,balance issues,headaches are usually a big chiari symptom.I had my decommpression 4 months ago and it is truly a miracle,things,are progressing well but slowly .I’ve been told it will take at least a year to know all the changes.I know it is a hard thing to do but it has been my salvation from this nightmare,so I would tell anyone to look into it.
My vitamin D levels were 27, arthritis doc put me on mega dose 50,000iu once a week. Been on it for 2 months, but I still hurt all over. I have a pain management appt. In 2 weeks. Basically was told last week by a neurosurgeon that my 5mm Chiari is not my pain issue. Told me it is muscular. Ill try pain man. Route first. If no relief, this summer I will be traveling to see a Chiari specialist in Pittsburgh. Anyone have pressure in they’re head, not pain but pressure? My vision almost feels like I’m drunk. Weird!!!
Hope your NS’s not wrong about the chiari being the culprit.I’ve found the prior NS’s under estimated mine.They never felt I even had chiari but the surgery has proved them wrong.Things are getting better,so far I’m out 4 months.
I’m new to this forum just today. My body ache all over too. Several months ago my doctor diagnose me with having fibromyalgia and prescribed with with cymbalta. Even though I’m on these meds my body still hurts at night - I toss and turn because my arms hurts, hands go numb, hips hurt, I’m starting to get headaches, the back of my skull hurt, my neck and shoulders stay stiff, etc. I’ve been diagnose with Synrix Chiari malformation type I. I joined this forum so that I can speak to people like me and gets some information.
Yes I have pressure and was diagnosed with intracranial hypertension before Chiari. I guess the Chiari is causing it. Good luck
Lynn johnson said:
My vitamin D levels were 27, arthritis doc put me on mega dose 50,000iu once a week. Been on it for 2 months, but I still hurt all over. I have a pain management appt. In 2 weeks. Basically was told last week by a neurosurgeon that my 5mm Chiari is not my pain issue. Told me it is muscular. Ill try pain man. Route first. If no relief, this summer I will be traveling to see a Chiari specialist in Pittsburgh. Anyone have pressure in they're head, not pain but pressure? My vision almost feels like I'm drunk. Weird!!!!
Thank you all for the responses. I will get my Vitamin D levels checked for sure. I am just glad to know I am not crazy. I just wonder what causes our entire bodies to hurt?
I tried but it said the page was not found - do you know anywhere I can find it?
Emmaline said:
This is normal for Chiari...check the Resource tab at the top of the page...there is a common symptom list that we experience. Click on the second one. You can see how many symptoms we can get!