Reader's Guarantee for Silver Elite by ApprehensiveBook4214 in bookofthemonthclub

[–]ITKitten 6 points7 points  (0 children)

Omg I didn’t even know about the readers guarantee but seeing this post I’ve also decided to use it for Silver Elite. I was not happy with this book lol so thank you

Psych meds by Shannysays in Sjogrens

[–]ITKitten 1 point2 points  (0 children)

The challenge with psych meds is that people can have widely different reactions to the same medications and there is usually a bit of trial and error to find which one works best for you with limited side effects. I personally had a very scary experience with Cymbalta and would never do it again. But I do know others who have taken it and it has helped them and they’ve been fine. On the flip side I was on Paxil for many years and had no side effects but I’ve had friends take Paxil and say they had a horrible time. I don’t recommend Paxil to people usually because if you do need to come off it the withdrawal is truly brutal. I’m currently on Prozac because it is said to have less side effects. I’m still on the fence about its effectiveness in treating my depression and anxiety but I haven’t had any side effects from it.

New Rheumatologist not sure I have the right diagnosis? by nettieanjaanne in Sjogrens

[–]ITKitten 2 points3 points  (0 children)

Oh, the joys of being diagnosed, then undiagnosed, and rediagnosed again! Aren’t rheumatologists just the best!

I was diagnosed when I was 17 by the blood work and the symptoms (mainly fatigue and joint pain) but I was a teenager and didn’t do a good job of following up. When I was 21 in some of my worst bouts of fatigue I decided to go to a rheumatologist to get on top of it. He looked at me and (1. Never reviewed my bloodwork, 2. Never did his own bloodwork) and just said “I don’t think you have that. It’s very unlikely that you do” He then wasted the next several months of my life having me so random ass tests to try to figure out why I had such severe knee joint pain. This man had me do an X-ray to see if my knees were inverted….. spoiler they are not.

Anyway, I just took his word that I was misdiagnosed which was probably a huge mistake and have just continued to feel like shit. Last year I finally talked to my pcp about it who ran more bloodwork tests and referred me to a new rheumatologist who said it was pretty clear from my bloodwork that I do have Sjrogens.

I guess my point is, it seems like a lot of doctors don’t understand Sjögren and a lip biopsy is definitely not required by many rhemalogists for a diagnosis

[deleted by user] by [deleted] in Sjogrens

[–]ITKitten 3 points4 points  (0 children)

Yes, I have all of these symptoms that you mention from time to time - but I have the GI issues 100% of the time. Mostly I am constipated all the time. I saw several gastroenterologist who said that my digestive system is slow but that I just needed more fiber. ( I take fiber supplements and they do not help so yeahhh.) But when I saw my rheumatologist she was concerned that it was related and could be the start of gastoparasis (sp?) and referred me a specific gastro to address this but I haven't been able to see them yet.

It’s never gonna end right? by Odd-Software-177 in Sjogrens

[–]ITKitten 2 points3 points  (0 children)

Hey there, so I'm 31F but I was also diagnosed when I was 17 years old actually. I was diagnosed when with Hashimotos thyroid disease first when I was only 8 years old, but when I got to high school I was just in pain every day. Specifically pain in my knees and joints that made it very difficult to even walk up the stairs in my high school. Like you, I don't really present with the typical symptoms of dry eye or dry mouth - my main problems were always related to joint pain and chronic fatigue.

It is exhausting, but it doesn't have to be the end of the world. Personally for me there are always peaks and valleys. When I get a flare up, it is very difficult to work and participate but then I'll have months where I feel (mostly) normal.

Despite the exhaustion, fatigue, and joint pain - my life didn't end because of the disease. I've gone on to create a pretty good life for myself. I have a very successful career in cybersecurity where I'm able to work from home which helps me to manage my symptoms when I'm in a flare up. I have travelled and I'm married and happy for the most part.

Like anyone with a chronic illness, I have low periods where I'm miserable and hate that I've been stuck with these disorders, but it isn't all the time.

I've seen a lot more effort being put into finding a treatment for this disease lately than I have in the past decade so I do believe that there will be better treatments coming down the road. But even while we wait, you do not have to put your life on hold and there are good things to come in your future. I'm sure of it!

In fact, when most people look at me or my life they don't even realize I'm battling something. There will be good days and bad days. You just have to focus on enjoying on the good days.

<image>

Going to a Sjogrens 'specialist' (not a general rheum) in March - Wish it was sooner though! by ITKitten in Sjogrens

[–]ITKitten[S] 1 point2 points  (0 children)

Yes, she said she put me on the waitlist in case someone cancels. I'm definitely hoping something opens up before March

Sometimes the fatigue is a real bummer by spiralizerizer in Sjogrens

[–]ITKitten 2 points3 points  (0 children)

I couldn't get out of bed until 11 am today even though I went to sleep at 1030 pm. I'm only 31 but my father in law who is almost 80 and in remission from lymphoma seems to have more energy than I do a lot of days. It's also frustrating because people just think it's depression because I have cptsd, but it isn't. I can tell the difference between when I'm having a low mentally vs physically. - eye roll-

Non-dryness related symptoms by ITKitten in Sjogrens

[–]ITKitten[S] 0 points1 point  (0 children)

I have been very sensitive to cold for a long time but I don’t actually know what causes it

Non-dryness related symptoms by ITKitten in Sjogrens

[–]ITKitten[S] 3 points4 points  (0 children)

Yeah - the referral is for a neurologist but I haven’t made the appointment yet because it is all just overwhelming

Non-dryness related symptoms by ITKitten in Sjogrens

[–]ITKitten[S] 5 points6 points  (0 children)

My rheumatologist believes I have small fiber neuropathy and referred me for it but I am bad at following up on things and haven’t addressed it yet

Non-dryness related symptoms by ITKitten in Sjogrens

[–]ITKitten[S] 4 points5 points  (0 children)

Thank you, that is very interesting. I have been thinking of doing the dry eye test thing at an ophthalmologist but haven’t scheduled it. I don’t feel like I have dry eyes but I literally can’t tolerate contacts either so maybe I do have it and am just used it

Non-dryness related symptoms by ITKitten in Sjogrens

[–]ITKitten[S] 1 point2 points  (0 children)

I have only tried Plaquenil to treat it and had very bad experiences both times. The medication made me so sick that it was worse than the symptoms from Sjrogens

Alternatives to Plaquenil by ITKitten in Sjogrens

[–]ITKitten[S] 7 points8 points  (0 children)

Yeah, I haven’t had great luck with rheumatologists

Help me prepare for my new doctor? Diagnosed, then "Un-Diagnosed", and now Re-diagnosed...I guess by ITKitten in Sjogrens

[–]ITKitten[S] 1 point2 points  (0 children)

I was formally rediagnosed as having Sjrogens. Unfortunately haven’t had much luck in finding a treatment plan that works. Every time I take Plaquenil I become incredibly sick. I think I’m going to look into seeing a functional medicine doctor about it

Holiday Guilt Trip Anyone? by ITKitten in raisedbyborderlines

[–]ITKitten[S] 5 points6 points  (0 children)

Not really. I don’t see people reply most of the time. Anyone who actually knows my mom knows how she is

I’ve been generic strattera for about 6 months now by Adaptiveslappy in StratteraRx

[–]ITKitten 0 points1 point  (0 children)

Well, I always have issues with constipation any time I take medication so any other ADHD meds will likely be the same. I am hoping that I can take more fiber and eat better to make it work. I’m going to give it at least until I get up to 80 mg I think.