SS and symptoms

Yes, deep and severe muscle pain can certainly be a symptom of Sjogren's. However, the second statement is not true. Sjogren's can be primary or secondary to Nother autoimmune disease. I am primary Sjogren's with secondary Raynauds. Try reading all you can at Sjogren's.org, John Hopkins, and other reputable sites. I would advise staying away from sites you cannot be sure of until you have a real grasp of this disease. It is complicated and there is a lot of wacko stuff out there. Good luck and God bless.

As a recently diagnosed SS I would just caution you to be careful of not attributing all health symptoms to SS. Yes, it might be SS, but after having SS for 30+ years I prefer to acknowledge and accept it, maintain regular contact with excellent doctors (and ditch any who do not know or care about SS), and get on with my life. That would mean treating muscle pain as simply muscle pain in the 1st instance - pain relief, physio, exercise, yoga, massage, meditation etc. If it persists longer term then talk to your rheumatologist and seek their wisdom and experience. My philosophy has been to live without thinking about SS all the time. I know my symptoms and how to either treat, manage or incorpprate them. It isnt always pleasant but I refuse to give it any more oxygen than it needs. I hope you have good doctors who you can talk to. I hope you have a supportive partner or good friend, and wish you all the best. Oh, and yes, keep away from most websites - they make SS sound horrific and it isnt always!

Mid back pain can be associated with adrenal insufficiency conditions such as Addison's Disease. This too is an autoimmune condition. Obviously Addison's has other specific symptoms such as darkening skin pigmentation and often salt craving which one would expect to find also.

A symptom which sometimes occurs with SS is kidney involvement. Although kidney problems are one thing I do not have, I wonder whether someone else who has that problem could chip in as to whether back pain could be associated.

Somewhat of a paradox regarding websites is that I have found them generally to be too trite with emphasis on the benchmark symptoms of 'dry mouth and dry eye' and perhaps a generalised comment that other systemic involvement may occur. For that reason largely I prefer to read medical research articles to understand what is happening in the SS world.

 

Hi. I don't have SS but have Behcet's. It is similar with a lot of crossover symptoms. I had the kind of back pain you describe. I did physio and was active. It didn't go away and in fact kept worsening.

I have a couple of prolapse discs and dehydrated spine but in the end that wasn't the cause either.

Once I got good treatment and the disease was properly treated all of my symptoms went including the back pain.

There is a lot of problems with poor understanding of these conditions and their management. Some people have these disorders very mildly and symptoms are manageable. Others have really severe problems. As I understand it you can have primary SS and that is it. But as you say it is often case with auto immune that once you have one ypu get another.

The vasculitis uk support group have a great and free helpline.

Not sure about the back pain - could be so many things. This is nonsense about SS only being a secondary disease. About half of all sufferers have it as their primary disease. A GP told me same thing a year ago and it turns out she was completely wrong. As a stand alone disease it is classed as rare and sufferers are at greater risk of lymphoma and of getting other systemic problems. Look up primary Sjogren's or any info page about SS and you will see it exists as primary as well as secondary.