Chiari Online Support Group

Anyone else have widespread body pain

I am 1 1/2 years post op chiari decompression surgery. I have had medical issue after medical issue since my surgery. I will be seeing a rheumotologist soon to see if I have an autoimmune disease. Just wondering if anyone else has been told that autoimmune diseases can be brought on by the surgery or the stress of the surgery and the aftermath that it brings. I have severe pain in my joints and muscles and had a positive ANA test which checks for autoimmune diseases. I already have hypothyroidism which is autoimmune, which puts me at a higher risk for other autoimmune diseases. They have mentioned Lupus as a possibility. My orthopedic surgeon is the one that made the statement that this could all be related to my chiari. There are days, yesterday was one of them, that I can barely walk. I have carpal tunnel syndrome but cannot have surgery if this autoimmune related. I have been very down lately because it is becoming impossible for me to work. Instead of getting better, my health seems to just be worsening all the time. I’m just really curious to know if anyone else has Lupus or other autoimmune diseases that may be related to having a chiari.

Yes, the everyday pain is intense and I barely get through the day. Depression is my constant companion. I try to focus on other things as much as I can to not drown in depression. My Chiari decompression surgery was June 2015 and I had to retire from my job at 56 due to the Chiari issues. Drs. seem to think we can work with the severe pain and won’t take many Chiarians off work for this disability. I also have low thyroid. They previously thought I had Lupus but the test was negative. I have difficulties walking, arthritis in my joints all over. They are even discussing hip replacement surgery now. I fully believe most of my issues including the fibromyalgia is from the Chiara. I am so sad that you are going through this and I wish you the best.

Thank you for your response and I am so sorry that you are going through this too. I have filed for disability but this is my 2nd time. I did see the rheumatologist and I was diagnosed with fibromyalgia, not Lupus. I will be having surgery this coming Tuesday for my carpal tunnel and tennis elbow. I agree with you, doctors seem to think that we can continue to work with mental confusion, chronic migraines, and pain but I don’t know how that is possible because nobody is willing to have an employee that misses that much work. Fibromyalgia contributes to the mental confusion and dizziness I get too. My rheumotologist said that it is unknown for sure, but fibromyalgia is thought to be triggered by moments of high stress in your life and on your health so having chiari malformation and the stress related to that could be a trigger. I also know what you mean by trying to keep from drowning in depression. I struggle with that daily but I try to find things to take my mind off of it as well. My doctor has ordered physical therapy and water therapy for my fibromyalgia but due to my upcoming surgery I may have to wait on that. Have you tried these things and if so have they worked at all for you. Thanks again for responding.

Yes, I filed for SS disability and have been denied twice. I obtained an attorney and am about a year out from being assigned a judge. The medical profession and the judges do not understand this condition and minimize it. Fortunately I have a pension, although reduced to get me through each month. Fibromyalgia is a better diagnosis then Lupus so I am glad you have that instead. Keep your chin up and live for the moments in your life that give you joy. Water therapy is a great tool to use. I keep my above ground spa at the ready always. It really helps when the pain is intense.

Thank you for the advice on the water therapy. I have to wait one more week until I can start therapy because I had surgery for carpal tunnel and elbow tendonitis both of my right hand and arm so until I am cleared I have to wait. That’s why I have not been on here to check my messages. I’m glad to hear that does help.

Hi there,
I too was diagnosed in 2012 after complaining of headaches. An Mri was done and, I was told everything was normal at the time. In 2014, I went to my Doctors as I seemed to be declining in health generally and was suffering pain, just about everywhere. It was during this appointment I was told that I had been diagnosed with Chiari 1. I am a retired General Nurse, and had not heard of this and even thought, she had given me someone elses diagnosis. I was sent for another MRI, which confirmed a 11mm dissention with a syringomelia. The Neuro-surgeon would like me to have the decompressions surgery but, did explain to me there were risks and not everyone benefits from this surgery!!! I have agreed to have yearly MRI but, I will not have the surgery until, there is no there choice. For the best part I cope quite well but, when I have bad days they are absolutely aweful. Noises in my ears, vision problems, extreme lower back and hip pain, numbness in hands and toes, neck and shoulder pain made worse by tilting my head or turning my head, nausea and dizziness. I am seeing my GP on 31st to see if all of these symptoms are actually related, but am still very reluctant to undergo surgey. I am 58 years young and extremely active when I am able. I do not wish my health to be pulled down slowly, by a surgery that may cause more issues. I would appreciate anyones view on this.

I had symptoms for years and the doctors didn’t seem to give me an accurate diagnosis. My symptoms post op of decompression are: severe neck pain

II have widespread body pain. My surgery was October 2014. I experience:

  1. Head pressure
  2. Eye floater and pain in my eyes
  3. Hearing problems
  4. Nerve pain in my teeth
  5. Lower back painful
  6. Neck pain so bad I’m in bed
  7. Difficulty walking
  8. Stomach pain
  9. Frequent urnination
    10 Leg pain
    At 59 I left work and went on disability. I’m in an Assisted Living Home. I started having signs in 2008 but the doctors didn’t know what was wrong. It took 6 years of going to numerous doctors to finally get a diagnosis. I had my eyes checked so many times it was unreal. I had 3 GI endoscopys for stomach pain and nothing was found. I had 4 ultrasounds to check my ovaries and nothing found. My throat stays sore and my nose felt like it lost structure. Three times to ent and nothing found. I went to 4 dentist two states nothing wrong with teeth. Finally two neurologists found Chiari and the neuro surgeon did the surgery. Nothing really changed except I was able to walk better. I wish my outcome had been better but it took so long to get treatment. AUploading… lot of nerve damage had occurred. I don’t think everyone’s outcome is the same so a positive attitude is important to a good recovery.

I had surgery Oct of this year the only thing that seems to have gotten better is no more tingling in my hands/hands falling asleep. Sometimes I think I shouldn’t have gone thru with it, but then nothing would get better anyways right?..well…I’m hoping in time things get better but the depression certainly doesn’t help. I just like Apple62 still have neck pain and for me it’s severe lower back pain (possibly due to previous surgery 2yrs ago). Post surgery my right hand thumb seems not to be right it will start twitching at random times throughout the day.

Hi Apple 62,
Thank you for your reply. I’m sorry you have had such a horrible time with this. Are you in bed all the time because of neck pain? If so, I cannot even imagine that. That must be the reason for the assisted living. Did you have difficulty getting disability? All my best to you.

I understand what you mean about not going through with the surgery, I too have had those thoughts, but my headache was so bad and constant and the surgery relieved that so I was grateful for that. It seemed to create some other issues though. I have learned a lot from being on this site. I think a lot of people on this site also suffer from depression as well. How can you not when you don’t feel good a good deal of the time. I have not felt like myself since this whole thing happened but I have many positives as well so I remind myself of those. I was diagnosed with fibromyalgia as being the culprit of the widespread body pain.

Hi Leprachaun66,

In response to your question about disability, my long term insurance company took care of it. Until recently, I was able to tolerate the pain somewhat. Pain meds don’t help. If I can help, my background is Human Resources, benefits and risk management.

Take care!