im amy. im 38 and a married mom of 4. only known of having this since april. i have sharp pains that come and go in my legs and now y feet. very painful. takes my breath away. noticed a few month ago..dry mouth. i take the med you all take. pat something. i am to tired to get up and get pill bottle for spelling. anyhow.. i get bronchitis and tonsils often. i have large ones anyhow. i have seen a ENT and he wants to remove them. Has anyone has surgery w this disorder.? do u heal better or worse than before u knew u had this? i see a arthritis doctor for the meds but he is oddball and i dont think calling him with this question will help. anyone....
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alos has anyone been as young as me with this? does it get worse with age? can i just explained to g et worse not be able to get around and need ssi to pay the bills?
Hi ladywithfairy dust. It’s really hard to know how the course of the disease will be for anyone. I’m not aware of any particular issues with healing, but for having your tonsils out you have good reason to be concerned. I had my tonsils out ten years ago but it was before I had been diagnosed with an autoimmune disorder. I would have a serious discussion with your doctor about your concerns both in terms of the surgery itself and keeping you reasonably comfortable as well as the healing process.
I’ve had other surgeries since my diagnosis of psoriatic arthritis and Sjögren’s. I haven’t had any specific healing concerns other than having to come off certain meds to have the surgery and then having a flare after.
In terms of your age, you are prime time for diagnosis. I have noticed that there seem to be a few common time periods for women to be diagnosed - early twenties, mid thirties with young children, and again close to menopause. Not all women fall into these categories, it just seems like a common theme. Time will tell how it develops over time.
If you go to Sjogren's Syndrome Foundation (which is the research and advocacy group for us) they have a section on their page with lists for the doc, anesthesiologist, and aftercare nurses if you are going to have surgery. As I understand it, a lot of the issues come from the dryness, etc that we deal with. I am sure some of the other members will pipe up with questions to ask your doc beforehand also because it can be a little rough as far as setting off your system.
I had horribly dry, cracking lips from the time I was about 7 and chronic joint issues by my early 20s. It just took forever for them to diagnose so I really don't think you are young at all for them pinpointing. As far as the pain in the legs, that's something to mention to a doc right away. There can be more than one cause for it so please talk to them.
I'm guessing the med you are on is Plaquenil. I wish you success with it. I had debilitating fatigue before I started on it and its really been great in that sense. Its never totally gone but being able to function is a huge improvement. Just know that it can take a few months to build up in your system so you may not see improvement for awhile. As Stoney said, there is no way to know how each persons journey is going to go so please don't worry about the "what-ifs". They may never happen. :)
i already have doctor thou. i dont understand what u mean.
EnjoyLife said:
If you go to Sjogren's Syndrome Foundation (which is the research and advocacy group for us) they have a section on their page with lists for the doc, anesthesiologist, and aftercare nurses if you are going to have surgery. As I understand it, a lot of the issues come from the dryness, etc that we deal with. I am sure some of the other members will pipe up with questions to ask your doc beforehand also because it can be a little rough as far as setting off your system.
I had horribly dry, cracking lips from the time I was about 7 and chronic joint issues by my early 20s. It just took forever for them to diagnose so I really don't think you are young at all for them pinpointing. As far as the pain in the legs, that's something to mention to a doc right away. There can be more than one cause for it so please talk to them.
I'm guessing the med you are on is Plaquenil. I wish you success with it. I had debilitating fatigue before I started on it and its really been great in that sense. Its never totally gone but being able to function is a huge improvement. Just know that it can take a few months to build up in your system so you may not see improvement for awhile. As Stoney said, there is no way to know how each persons journey is going to go so please don't worry about the "what-ifs". They may never happen. :)
Sjogren's Syndrome Foundation has a website that gives you a printable list of things doctors, nurses and anesthesiologists need to know before performing surgery on people with Sjorgren's.