Please Help In Describing Your Symptoms

I've had IIH for four years. Fortunately, I did not lose my vision but instead, my eye was pushed forward correcting my eyesight back to normal. However, I struggle daily with body pain. Horrible joint pain, neck and shoulder pain and now my right arm hurts daily. My hand gets freezing cold while the rest of my body may be warm. My doctor claims that body pain has nothing to do with IIH but my body pain started at the same time the headaches did and that my vision changed. I hate the fact that because he has "researched" IIH he thinks none of this goes together. Please let me know if any of you have the same body pain. I would love to hear from you! Thanks!
boohootie boohootie
41-45, F
6 Responses Dec 4, 2012

Hi! I too have been struggling with constant body pain and have IIH. I've had headaches for years but was just diagnosed in November. No one understands. I get "I don't know" from my specialist whenever I ask questions. I'm so frustrated! After being blown off for years with the headaches I thought it would be great to have an answer, but it has only made that worse. My joints ache, dizzy, swollen hands, face, ankles, constant headache, neck pain, back pain, breast pain. Blurry vision.

Hi, there. Out of curiosity, have you taken Diamox? I often have awful pain/stiffness in my knees and soreness in my upper arms, but I always attributed this to the Diamox, as the pain didn't start until I started taking it.

Hi there. Just read ur post. i have the same problem. i was diagnosed about over 2 years ago. I have really bad aches and pains in my body since this iih started. All the Dr could say its not conected but i feel it is as im in agony all the time same with my right hand i feel it freezing and numb. I've lost my grip to. but Dr not taking it seriously

i was diagnosed with iih about 7 mnths ago but from what i know now ive probably had it for about three yrs now, from my experience i do get alot of body pain, it always starts with pressure & pain in my neck, head pressure, migrains, body pain, blurry vision sweeling in legs hands & even face when its really bad, theres alot symptoms some doctors dont reconize it took three yrs for me to be diagnosed, now meds and just trying to deal it with the best i can, hope that helps hope that everyone with this condition and others may find a cure one day soon....

Yes, I was diagnosed with IIH 2 days ago. I have constant body pain in my back, legs, arms, neck and shoulders and constant tingles and burning in my hands and feet. So much so that I cannot sew for more than a couple of minutes. I have not had headaches yet. But have clear fluid rushing out of my nose during the night, or when I bend over. and Also have thickened optic nerves as well as macular degeneration. I am 57 years old and have symtoms for about 25 years but was always told it was in imagination.

Hi! I've had chronic shoulder and neck pain for years and have heard that from many other people with this. I have had some luck seeing a chiropractor, so that may help... You are definitely NOT alone. I've found a few groups on Facebook that I joined that have been a huge help. Connecting with other patients rather than just doctors who truly don't seem to understand... what a difference. My doctor tries, but I do believe that unless you live with this yourself it's pretty hard to comprehend what we go through. Best of luck to you!!!