It's been almost 2 years since my husband has had an episode thanks to ivig every 4 weeks.

He had episodes probably for about 5 years before we understood what was happening and went to the emergency room with his last most severe episode. His swelling was significant but didn't require surgery.

In the past few months he's been suffering with very painful muscles in his buttocks and back of thighs. An orthopedic specialist ruled out an underlying nerve involvement. It seems it's just his muscles. 

I understand that his muscles and nerves may have been damaged by the past episodes, but not sure why this pain has come on more recently rather than right after his hospitalization.

Wondering if others with SCLS have experienced this type of pain, and if so what you're doing to treat it.

Thank you! 

Rebekah Sellers

I see I am responding to a very old message, but I also have had pain in the area you describe for years now. It has kept me awake many a night and even now as I sit I notice it. I even saw a physical therapist. I thought I had tight muscles but I'm very flexible so he said my muscles are not tight.  But they feel tight! 

I have found taking Magnesium (Citrate) seems to help. And I have found I benefit from doing stretches for tight hamstrings. Sitting a lot is also known for causing pain in that area...and I do sit a lot. Does your husband have a desk job?

I was just diagnosed last week with SCLS (Dec 2022), a couple months after being hospitalized by an attack triggered by Covid (Oct 2022). I'd been having "inflammatory" episodes for 4 years without knowing what was happening to me. 

My butt/hamstring pain probably came on somewhere in this timeframe. Who knows whether it might be related, but I find the question intriguining.  It is quite painful at times!!  I have also developed numb toes over the last year which I'm starting to feel quite certain are related to my attacks. My toes were ice cold and painful in the hospital. I bet I went through 20 heat packs during my week hospitalization.

Hi Cara,

Welcome to this board! It has been invaluable to us to help my husband get his diagnosis as well as insurance coverage for his infusions.

It turns out that my husband's pain issues that I posted about in November 2020 were not related to his SCLS. By then he had been getting infusions for several months with no leak episodes since January 2020.

He has a long history of fibromyalgia and back pain syndromes that were apparently the cause the pain then, which finally resolved somewhat.

My husband has the opposite of a desk job, is a very active heating & cooling contractor!

As to whether your pain has been caused by SCLS leaks, it's possible, because the fluid retention is EXTREMELY painful. And also may effect your nerves/numb toes. But my guess is that if these issues are caused by leaks then once a leak episode resolves the pain should go away.

Unless you're suffering from chronic leaks like some others?

Getting your infusion therapy started to prevent leaks or help chronic leaking is the key! 

Best wishes in getting your infusions started Cara.

Rebekah Sellers