Lupus and AS
Well, this is a little story about me.
I was diagnosed with Systemic Lupus in Oct. of 2019. I also was found to have tested positive for Ankylosing Spondylitis. My Rheumatologist neglected to give me that good news, or ever do anything for it. Make that 2 different Rheumatologists. Now, over 3 years later, still miserable, my back and neck are a mess.
For those of you are not familiar with these two fine illnesses, they both chronic. Lupus is an autoimmune disease, which can affect about anything or everything in your body. AS is chronic inflammation in your spine, leading to fusing of the spine, if not managed somewhat. They seem to work together great.
Lupus affects joints.
AS affects joints
Lupus affects:
Skin
Stomach
Kidneys
Brain function
Eyes
Digestive System
Muscles
Nerves
My lupus makes my joints hurt to the point I lose mobility and the ability function, even simple things like cutting veggies. Outside work is very hard to do and keep up with. I also have to be careful in the sun. Between the medicine and the Lupus, the sun and I are no longer BFF's. It makes me extremely tired, gives me rashes and headaches from about 75deg up.
I am finally getting some stretches and exercises from Physical Therapy that may help with both of these issues. Yoga, very gentle stretches using support and tools, helps at minimally at this time. The therapists think with repetition that it will increase. One can only hope.
I would love any feed back, advice, or similar stories from anyone with an issue such as this. Whatever you would like to share.
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Recent Comments
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I'm so sorry to hear you're dealing with all that. It must be very difficult. My good friend has Lupus and she found out that corn really aggravates her symptoms, so she has to avoid it. You may want to have an allergy test to check for food sensitivities and also reduce sugar - that may help lower inflammation. I hope that things turn around for you soon!
Susan
Jen- So sorry to hear about what you are going through. My wife has had MS for 30 years now, so I understand some of what you are going through. Where do you live? I have a former co-worker in Denver who is pleased with her Lupus care and is doing relatively well (I think it's been at least 20 years for her).
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Jeez... very sorry to hear about this Jen...
I had a spinal issue a few months.... no it must have been nearly a year ago now (how time flies) and once diagnosed (nothing as severe as you have though) there was talk about needing surgery!
But.... I saw a different specialist and he advised me to try PT first...
I was skeptical and thought how is this going to help me?
Well, I had nothing to lose by trying and gave it a go!
Three months later the problem has nearly 100% disappeared and I have avoided surgery!
I know we are all different but there is hope...
Stay strong my friend and I sincerely hope that the PT can continue to work for you... :-)