Sjogren's seems to fit the condition I have

[maddie1020]

Hey all!

Over a few months, I came down with joint stiffness in my hands, inner elbow and toes, plus immensely dry lips (they were so sore they were bright red) and dry eyes. This was 2.5 years ago.

Fast forward to now, I got referred to a rheumy who says I have osteoarthritis, but I don't believe it. It doesn't make sense to me.

Initially, I thought I had RA but all my bloods are negative and very recent Xrays show no damage. Sjogren's seems to fit because recently I've been waking up with sore, dry eyes and a dry mouth.

It's frustrating, I feel like I'm annoying my doctors and not getting anywhere. I'm a 48-year-old female as well, so I know they are going to mention pre-menopausal symptoms!

I'm trying to be good by going dairy and meat free (most of the time) but it's hard. My joint stiffness is slowly turning into joint pain.

Can anyone relate? I feel like I'm so alone and going crazy sometimes.

Thanks x

[MichelleHarris]

Hi Maddie, it took me 25 yrs to be diagnosed and I’m now double sighted and have damage in my neck. I’m on Hydroxychloroquine now and thats def helped with aches and pains. I know its frustrating. I wish you all the best x

[Simonebirds]

Yes empathetically! Get rested fir this and it may or may not show . Sad how some docs are not so certain about this condition . I guess I have as I have labs that show . And lots of symptoms including neuro brain fog and dizzy at times . Change your diet to anti inflammatory. Best I’d luck .

[SusieW2]

I've had mild Sjogrens Syndrome for may years. I don't have significant joint stiffness so don't think that is necessarily part of SS.

But it is frustrating not being able to get decent diagnoses. I've stopped worrying about a diagnosis and concentrate on finding ways to deal with symptoms and support my body in functioning as well as possible.

I do eat meat but not gluten nor much dairy. Turmeric, ginger, black cherry, birch bark and capsaicin can help with joint pain.

Good luck! You are not alone.

[maddie1020]

Thanks everyone! I appreciate the empathy and know that I’m not alone.

I am going to get tested but reckon it will come back negative.

I spoke to my doctor who says it might be peri menopausal arthritis. I did inwardly roll my eyes when she said it, but after looking it up, it could be a possibility.

Maddie x

[Di01 in reply to maddie1020]

Hi maggie i kno wot u mean i'm in same boat peri meno & really bad fatigued i have dry lips that are cracking & bright red really dry eyes they'l either run at night & stick together in morning with flaky bits at the sides my neck was painful & my jaw too had a few swallowing issues like my food was getting stuck then felt very swollen in the throat itsself!!..then i realised my saliva not helping it go down trying to clear my throat but nothing was coming up no split or flem i had pain in centre of the chest & i also suffered with feet & legs sensation my dr told me i was suffering with anxiety day later got a lump in my shoulder now so got to push my dr to do a blood test or count yo rule this condition in or out anyway hope u got sorted in the end & got the answers since its been 5 months

[Vespa10]

Hi. Like you I have had a wide range of symptoms for over 2 years. I have been passed from one specialist to another but nobody has joined it all up.i finally have a rheumatology appointment at the end of the month. I am 49 and permanently freezing. If he even mentions menopause I don’t think the appointment will end well!😡good luck on your quest to get someone to listen. X

[joolee1]

maddie1020, I finally mentioned all of my symptoms to my gynie last year, and while she did say that all of it COULD be from menopause, she also said I was not crazy, that everything I was describing was inflammation, that it could definitely be something other than menopause, and that it should be looked at systemically and not just as individual, unrelated complaints. Exactly! So thankful for her. She ordered some blood work. I already had Reynauds and knew that I'd have positive ANA , but the blood test revealed systemic scleroderma. I'd already assumed I had something autoimmune, but it was nice to have validation after about 10 years. She is an MD, but strongly believes in functional medicine. She suggested an anti-inflammatory diet and sent me to a rheumatologist. It is frustrating that so many docs just don't listen. Glad that she did. Anyway, I've had very dry eyes, dry, hoarse throat, esophageal slowness, now joint pain (elbows, hands), streaky skin rash, etc. I believe is is Sjogren's in addition to the diffuse scleroderma. Even if I never get that diagnosis, I treat it as such. Do you ever listen to podcasts? If so, try Phoenix Helix. Some good ones on there. My favorite is episode 150: Diagnosis Detective. Good luck, hang in there.

[ClancyD]

Hi maddie1020 🙂I’m sorry I’m late to the discussion, but after reading your story, it would be worth getting checked for Palindromic Rheumatism. I also suffer from flares of stiff sore joints, some to the extreme of not being able to move. Then they would subside/disappear nearly as if they hadn’t happened. Palindromic Rheumatism (PR) more often than not, doesn’t show up the RA factor in blood tests, and x-rays will also not show anything. It is essentially an autoimmune disorder, and often a precursor to RA.

After years of trial and error, back and forth between specialists, steroids, carpal tunnel due to internal inflammation, strained personal relationships, and nearly losing my job, my mental health took a huge battering.

Eventually my Dr put me on sulfasalazine, and this has slowed down my flares and their frequency considerably. I also take Modavigil to help with the extreme fatigue associated with PR, and need surgery to correct my carpal tunnel.

I am also 48 years old, and also have hypothyroidism and am now going through menopause. I try to eat a clean anti-inflammatory diet, and get light exercise. The key is moderation so as to not incur a flare!

Please know that you are not alone, and you are not going crazy. What you are experiencing is real, and the symptoms of these conditions can lead us to think we are mad at times. It makes it worse, and is very frustrating is that unfortunately doctors don’t know much about these conditions and so they go undiagnosed for so long, to our detriment. I suggest you keep “annoying” your GP to get the right diagnosis and treatment. It is after all your health and quality of life you are fighting for. While treatments don’t necessarily cure our diagnosis, there are things that ease the symptoms.

Good luck to you, I hope this helps xxx