Chiari Malformation Community
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Avatar universal

New fibromyalgia diagnosis...

I forgot to mention in my other thread that I'd been to my rheumatologist last week. He brought up fibro again. He did another torture session: testing the hot spots that go along with fibro. He said I have widespread muscle pain. No duh. Lol!  

He also surprised me very much. He said, "I do think you've got a touch of Fibro going on, unless it's being caused by your Chiari Malfitmation."

I just about fell off my chair when he said that. Lol! Apparently he'd jet read a study a few days prior about the Fibro and Chiari connection, the shared symptoms, the common misdiagnoses. I was so pleasantly surprised.

And in good, but also bad news, I have a friend via an online chat group, who for years, was treated for Fibro. I told her about Chiari and suggested she talk to her dr about running an MRI. Well, she did, and her dr did, plus a bunch of other tests. It turns out that she has spina bifida, Chiari, and that her sacroiliac joints are fused together, indicating a spondylitis disease like I have too. She's being sent to Mayo Clinic. I am sooooo glad that I talked to her about Chiari. She's finally going to get appropriate treatment after all these years.
7 Responses
1175033 tn?1492201228
WOW   I really think there is a big connection here. My dad has Ankylosing Spondylitis which the first sign is S1 joint involvement. People with that are also at risk for their dura streaching  (dural estactica) which my dad has so there is pooling of csf in his sacrum and I think it is related to connective tissue disorder.  He also has congenitally fused vertebrata and I have spina bifida occulta.  My S1 is dysfunctional but not supposedly showing any changes even though it looks bad to me.

Thanks for posting this!  I know there has to be a connection between all this stuff!  
1179332 tn?1297478990
I was told the same thing when I went to see a rheumy about the pain about 6 months after I had the PDF surgery. I am 100% sure that it is caused by the Chiari damage as I never had any of the problems before. The thing is with FM is that it is a broad dx which basically means that the pain is caused by an unknown CNS disorder. In your case and your friends, they know what it is. Unfortunately, with a lot of people, they don't even bother to investigate and just label them with FM.

That was such a great move on your part to get your friend to ask questions..I really think more ppl with FM should start questioning such a broad dx.

You are also really luck to have a rheumy that has studied the connection and believes in it as there is a lot of conflicting opinions about this connection (as I was told by my own rehab PT who also investigated the link).

BTW- I am on lyrica and it does help a little...I can't handle the side effects if I take it in the day though so I only take it at night. I suspect that if I could take it in the day that the pain would be less. But, I take what I can get....as I have to function for my kids.

Have they mentioned any treatment for you?

Avatar universal
Well, treatment-wise, I'm just being treated for the spondylitis by the rheumy; NSAID, methotrexate, stomach med to protect from the NSAID, and folic acid to protect from the methotrexate side effects. Nice huh? 2 meds + 2 meds to combat side effects. My pain Mgmt dr is treating with narcotic pain meds, muscle relaxers, and sacroiliac joint steroid injections.

I tried Lyrica a few years back, rx by my psych. It made me drip sweat 24/7. Uck! It was worse than my current profuse sweating problems that I think is due to a thoracic syrinx. Dr won't do MRI since 2 "specialists"  have said my Chiari is incidental, not the cause of my symptoms.

My psych wants to try neurontin, which is used for fibro too. It's also a mood stabilizer, which I never knew. I have to adjust to my new antidepressant 1st though: Pristiq. I'm also bipolar. Thanks Dad, for passing on Spondylitis, Bipolar, and autism. Lol! My bio DD got at least one from me so far: autism. She's high-functioning, but affected worse than I am. I have Aspergers.
1175033 tn?1492201228
OMG so many meds! I have heard lyrica and neurotin are very similar. Im not sure the neurotin and pristiq will mix well together, but I am not the pharmacy, it just doesnt sound good to me.   I read that methotrexate depletes your folic acid and you need that to make sure you new cells for proplely, instead of mutating into cancer cells, folic acid is good for everyone, I can prevent cancer.
Avatar universal
Yup, that's what folic acid is for. Basically, your hair will fall out if you don't take it, like at the higher doses given for cancer treatment. I just barely touched on my meds. Lol! I've got diabetes too, so a med for that, plus a statin, and progesterone for endometriosis. Plus I take Reglan on occasion for gastroparesis. My medicine cabinet looks like I'm 3X my age. Lol! I'm a walking pharmacy. I hate it. I'm broke from all my med copays. I used to be on an injectable biological anti-TNF med for my arthritis too, Humira. My copay for that alone, was $100/month. I think it was making my neuro symptoms worse, so I went off it. Fortunately, I think I'm better off of it. It supressed my immune system too much. I was always sick, causing my arthritis to flare up. I'll not consider a med like it again, until my germy kids are older. Lol! My insurance sure is happy, I bet. That med cost them nearly $2000/month.
620923 tn?1452915648
  I was also dx'd yr ago with fibro..and recently told I did not have it that it was in fact EDS......as for neurontin...I was on that too..it did not help and made issues I had with IBS worse....so I had to stop taking it.

  The biggest problem is once we get the Chiari dx and surgery if we r in fact a surgical candidate...we r left to our own defenses again like b4...and no one is connecting the dots.

1179332 tn?1297478990
Jennyfoo-I can't believe the amount of stuff you are on.....!!

I found Neurontin to not be a good choice for me either. It may be a mood stabilizer for some but it just did the opposite for me. It made me super anxious and I had massive mood swings. It also made me feel like I was a zombie for most of the day. I found Lyrica to have a lot less in the way of side effect.

Unfortunately, the bottom line is, personally, I haven't found anything that really gets to the root of the pain. I was recently given Celebrex but upon reading the side effects (which scared me) and the fact that it is in the sulpha drug family (which I am allergic to) I am going to have another discussion w/my Dr before I start it. If anyone has something that is successful in managing fibro like pain, I'm all ears!!!

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