I was curious to see how many Sjogren's patients have another autoimmune disease besides Sjogren's, which one(s), what symptoms do you have, and how do you deal with them?
I am asking this because I have POTS (Postural Orthostatic Tacachardyia Syndrome - a form of Dysautonomia) and have recently been diagnosed with Sjogren's. I also have Fibromyalgia but I do not think this is considered an autoimmune disease. I would love to hear how you cope with these illnesses and just some things you could offer in the way of encouragement or any things that you have done that helped you better manage your illness.
Thank you in advance for any comment or help you would be willing to offer.
I have Pernicious Anemia in addition to Sjogrens. I get B-12 shots regularly as well as physical Therapy to strengthen my neck muscles -they are not strong enough to hold my cspine in place I guess... Still asking why - could be because my B-12 was low for so long... Also have Fibromyalgia. How am I coping? I am taking each day as it comes and finding the joy in it -I find something to look forward to each day. THe only meds I am on is an acid blocker for the burning esophogus, vitamin D, and the B-12 shots. Usually I feel O.K. -I do take a nap everyday as i work from home -the fatigue is the worst -that and the neck and headaches right now. I was told I probably had the Pernicious Anemia my whole life - but wonder if that is true or if Sjogrens had something to do with it. The most frustrating part is finding a doctor who doesn't think I am crazy and who will really listen! My rhumy just shakes her head when I am talking and says see you in 6 months - last time as seh walked out the door she said "Oh -you do have antibodies for that and you need B-12" and continued into the next room with another patient. I found out from my GP that I have pernicious anemia! Tami K
Hi Mompain :)
I have Sjogrens/lupus overlap and Hashimoto's thyroiditis. All definitely AI diseases. I also have irritable bowel and irritable bladder syndromes and osteoarthritis.
I cope by taking every day as it comes and trying to have a laugh and I have a long sleep every Sunday.
Take care - Scottie :)
Mompain, I have Hashimoto's thyroiditis, Raynaud's, dermatomyositis, autoimmune vasculitis, rosacea and Sjogren's...all autoimmune diseases; plus sarcoidosis, an immune response disease. I also have IBS and fibro, which aren't AI, but are linked to AI much of the time.
I never really thought about how I cope...I just do what needs doing, and when I have a chance, I rest or pamper myself somehow. I suppose one way that I "cope" is by learning to redefine "what needs doing"...it was a bit of a surprise to me, but I discovered that I'm not solely responsible for the world spinning on its axis, and things move along just fine without my input!
I have several autoimmune diseases too. It started out with one, then the rest came along.
Quite normal according to the docs I've seen.
Rania :)
Mompain, I have Sjogrens, Myasthenia gravis, Hashimotos, Bullous Pemphigoid(skin AI), Asthma and low T-cells and very low IgG subclass 1 and 3 which are also part of the white cells etc that help fight infections. The doc thinks the T-cell problem is most likely hereditary but could be autoimmune also. I am 65 years old and have not had good health for many years including when the kids were little.
I just plugged along and rested as much as I could, went to the doctor only to be told it was "my nerves". I also worked part time as a nurse and did a lot of work outside on our hobby farm. Sometimes I felt like I would die standing up but I never died to I just kept on working. lol
Finally got diagnosed in 2003 and 2006 and since November 2006 I have been on monthly IVIG Gamunex for the myathenia and the t-cells. I can't take the DMARDS. Now I do what I can when I can and just get up and am thankful for each day. Don't get out a lot socially as I seem to not do well in crowds with my right sided deafness and fatigue factor. If I have too much fun I pay dearly for it the next day with increase in myasthenia symptoms of weakness and occasionally affects my breathing.
I just enjoy the things that I can do. Read a lot and like to cook and love to shop. I hang on the cart at the stores and rest when I need to. I told hubby the other day that when the kids were young I couldn't shop for long periods of time as always had to be some place to pick up kids etc. Now I have no set schedule and I just love to look---can't afford to buy that much but just enjoy being out of the house. Irish ;D
These AIs seem to come in groups, don't they?
Let's see... I've got
AI Pancreatitis, AI Hepatitis, Hashimoto's, Fibro, Seizures, Asthma, Sleep Apnea, IgA deficiency, Raynauds, Erthymyalgia, Tremors, Migraines, Autonomic "weirdness", motillity problems, bladder problems, GERD, and more I can't think of right now
which, according to my doctors are all thanks to Sjogren's
Ok so I just got diagnosed with Sjogren's. Will I end up with another autoimmune disease? Or could I just stay with just one? lol.
You could stay with just one. Keep in mind that the people who post to these boards are the sicker ones. A lot of people check it out, find their answers and don't need more support.
Sharon
I remember 7 years ago, I came to this board with nose and GI problems and thought "ok, I know I'm sick, but these people are hypochondriacs. There is no way that these people contract so many distinct, albeit related, diseases."
7 years later, I'm now one of you all, and I know the hard way that you all are not hypochondriacs nor am I. I suppose that's poetic justice for my ignorance.
I now have eye, nose, GI, lungs, skin, and mouth symptoms :)
Styx
Sjogrens, Lupus, Raynauds, GERD, Interstitial lung disease, Asthma, Chronic constipation, Overactive bladder.
Duchess
AI Hepatitus, Antiphospholipid Syndrome, Hypothyroid, Diabetes, Raynalds, and RA...just to name a few!
I have SJS, Fibro, Osteoarthritis, Osteoporosis, GERD, chronic constipation. So much fun!!!!
Jennifer
I have Primary Sjogrens and Raynauds; also have gastroparesis and IBS as well as degenerative disc disease.
I cope by doing things i enjoy with people I love. I love to be outside, hiking gardening and spending time with animals.
I also blog, its another form of catharsis!
Was told I have RA...then polyarthritis...then Chronic Fatigue Syndrome brought on by EBV. Now Primary Sjogren's with a gut that is threatening mutiny. I think Brain Fog should be its own AI disease! It certainly is enough to handle by itself.
Lupus, Sjogrens, APS and Raynaud's - but it doesn't really matter because they all basically get the same medications and treatments. I have a great Rheumy and have learned that for me, diet also makes a huge difference. Two years ago I was really pretty sick...now, after treatment, I'd say I'm back at about 85%-90% of normal. I learn all I can and try to stay active. i also am very lucky to have good insurance, good healthcare, and an wonderfully supportive family - I don't know what I would do without all those things.
Lupus and Sjogren's.
Most debilitating symptoms are severe fatigue, joint pain and swelling, lung inflammation (use albuterol for shortness of breath) but also have a tendency to develop pleurisy and nausea.
I have annoying symptoms but not debilitating: mutliple skin rashes, pretty extensive hair loss, random fevers, and a host of other things.
Other diagnoses not AI related: migraines (although some of my migraines may be "lupus headaches" as opposed to the migraines I get with an identifiable trigger - hormones, wine, etc.) and IBS. Rheumy has mentioned fibromyalgia but it's not on my offical list of diagnoses (and gosh, I hope it doesn't get on there ... )
I have Primary Sjogren's only right now (and hopefully forever!) plus Raynaud's and IBS, but I was worked up for Rheumatoid Arthritis at my last rheumatologist visit.
He said my hand and elbow joint swelling was beginning to be more symmetrical vs. just on my dominant side, which is typical for RA, so he wanted to make sure. I'm negative for rheumatoid factor (which he said is present in 80% of patients with RA) but weakly positive for anti-CCP. He said that not having rheumatoid factor is reassuring, but we can't rule out RA exclusively on that basis. He also did a baseline hand/wrist x-ray that was normal.
He said that the positive anti-CCP indicates that I'm at a greater risk for developing RA in the future, and if my symptoms continue then we might try some RA-directed medications. So, seems like it's good news for now, and we have some additional information to direct our treatment. I hope reading my doctor's reasoning helps somebody else!
Just Sjogren's.
Primary sjogrens , MCTD( another dx for an autoimmune but they dont know what..), fibromyalgia - the sjogrens part symptoms are joint pain, GI problems, dental problems, dry everything, brain fog - I have multiple lesions on brain MRI, had surgery for Dequervians
Lupus/Sjogren's overlap and Hashimoto's thyroiditis. Oral Lichen Planus.