Chiari Online Support Group

Lupus? EDS? Raynaud's?


I’ve questioned whether or not I have any of the aforementioned diagnoses. Perhaps, it’s all down to just my chiari but who knows! All of these conditions are a giant tangled mess.

I’ve always been very flexible. When I was younger, I could touch my toes to the back of my head. I still sit “folded up like a pretzel”, as my dad describes it. I’m just very double jointed. I also tend to bruise fairly easily. It seems I always have new bruises everyday and I haven’t a clue where they’ve come from. My skin isn’t stretchy but it is quite soft despite the fact I forget to ever use moisturizer. Of course what thinking of here is EDS. If I do have it, it isn’t severe but I plan on getting decompression so it’s something I should discuss with my NS beforehand.

Lupus. I have aching and stiff joints. I’m tired and often times just have this all around feeling of being unwell. I don’t get a butterfly rash but I do get these strange dry patches on both wrists from time to time. They start out as these small burning scratches and then they spread into a wider scaly red patch and they itch. They feel and look like burns. Takes a few days for them to clear.

Raynaud’s. I’ve never had good circulation and my hands and feet are always cold. I’ve also realized that I don’t really feel things as much as I used to? Raynaud’s would also certainly explain my odd fingernails.

What about the rest of you? Do you have symptoms like these and have they been attributed to any of these conditions?


EDS and Chiari can both exist in a person and both do create numerous symptoms. If you try to chase them all down and give them a diagnosis it could definitely be overwhelming and you often do not gain any resolve.
EDS type IV runs in my family and I have Chiari I, so my suggestion would be make certain you have an excellent primary care physician. Monitor the EDS as is recommended and make certain you list your family history prior to any surgery.
A good neurosurgeon will be aware of EDS because it is common in those with Chiari. I did have some complications after my surgery and they were managed because complications are known to occur post op.
Think positive and manage your health, do not let it manage you. A diagnosis will not give you total resolve, but taking life a day at a time and looking at other beneficial healthcare options such as Chiropractic and Massage will help you clear a path to days of feeling better.