Hi, my name is Amanda. I am 30 years old and I had a C Section 8 months ago and have a wonderful baby boy :-). I have been experiencing severe pain ever since I had him though which is really hard. Anyways, I went to my eye doctor who said I have tissue damage due to dry eyes. He suggested I be tested for Sjogren's Syndrome. I did a search on Google and found this site. So, I have a LOT of symptoms, I don't know if they are connected at all but I have been talking to my friend I met on here, Word Nerd, and she thinks I should post and see what everyone things. So here goes, I have extremely dry eyes, mouth, throat, sometimes my insides even feel dry like I'm dehidrated. I have pain like a bone spur on my right heal, my right knee feels weak like it's going to give or something. I have always had severe headaches only in my left temple, so severe that I have wanted to die they hurt so bad. I have neck, jaw, shoulder, and back stiffness and soreness. My hands and grip are weak and I have these pains that shoot through my fingers. My left three middle fingers go numb and tingle, my left lower lip goes numb and tingles. I have severely dry feet but at the same time excessive sweating. Extreme fatigue. My body temp stays below 97. I get chills and hot flashes. I have carpel tunnel syndrome. I have Acid reflux disease. I have Bipolar, OCD, GAD, and Panic Disorder. I have Asthma. I am morbily obese. I have recurrent sinus infections. Allergies. I can't think of everything right now, but that's a lot isn't it? I joke around and say that since I turned 30 I started falling apart...lol. If I try to go to doctors, most of them don't listen to me. I don't know if it's the Bipolar or the Obesity...but they just kind of look at me like I'm crazy or stupid. So, any advise would be greatly appreciated! Thanks!
I don't know if I actually asked this or not..but what I was wanting to know is if this sounds like Sjogrens or if it sounds like something else or a combination? Thanks!
Hi Amanda,
Let me welcome you to the SJS World! Please peruse the board for topics that might interest you as there is so much information available that it would put a lot of doctors to shame! ;) :D
Congratulations on your new bundle of joy!
I don't know if you have SJS or a combo of a lot of things, but it sounds like you might need to have your thyroid checked. That's what started me down the AI path, being hypo and having a GP that didn't believe me was the worst. I'm sero negative for everything including Hashimoto's (diagnosed by a biopsy), but I had developed a goiter with multiple nodules and my TSH was always within the normal range. Finally saw an endo and was put on Levoxyl the first time I saw him, amazing.
Okay, have you been seen by a rheumy yet? If not, can you get to one soon? Or will your primary refer you to one? And unfortunately, sometimes you have to become very proactive to get some answers these days.
Hang in there, and keep us updated, okay?
Take care -
Patze
Hi Amanda welcome to the forum. It sounds a lot like what happen to be after I delivered Jenna(by c section) 4 years ago. They thought I had lymes I was so sick, everything hurt I felt like I had the flu I believe now that I had the Epstein Barr Virus which went into sjs, Jenna was diagnosed with sjs at 3 she is one of the youngest to have it. We both have a lot of the same symptoms, hers was also caused by the Epstein Barr Virus. We both cant tolerate the heat and sun, my eyes are always filled with all this gunk in the morning they are stuck together, my mouth is also very dry, I lost all my teeth at 26, and I gained a tremendous amount of weight i went from 150 to 230 since then im back down to 185. My area down below is also very dry and I am filled with kidney stones, and I have fibroids on my uterus Im only 39 but some days I feel like 80. I dont know if you do facebook but u can look me up on there Jonnell Labas I have a sjs sight on there. Good Luck and Hugs and Kissess Jonnell and Jenna
Hi Amanda :)
Wwelcome to Sjogren's world.
Your eye doctor sounds as though he's on the right track Go and get tested. The tests are not totally definitive as people can be sero negative - but many are not - and if you tested positive, then you'd know for sure.
I hope you find the site useful.
Take care - Scottie :)
Hi everyone! Thanks for being so helpful and so friendly! I talked to my doctor today and she is trying to get me an appointment with a rheumatologist. The closest one is like 40-something miles away so maybe it'll work out. Two of my siblings have had to have their thyroids removed, so thyroid is a definite possibility. Although on my blood work it was normal too. Everything was normal except my sugar was 120 which is not really that high. But my eyes have been so dry and my throat that I wake up about every 2 hours and have to put eye drops in and drink water or use a cough drop. It's driving me nuts! Thanks for all the support and the congrats! I hope my baby doesn't get this too though. <3
Hi Amanda
I'm glad you found SjS World - but sorry you had to! Lots of your symptoms sound like classic SjS, but I agree with the others that they could also be complicated by thyroid issues.
It's great that your doctor is taking you seriously and finding a rheumyfor you. One way of speeding up your rheumy appointment is to let his/her admin people know that you're prepared to take a cancellation. That way you'd probably have less than a day's notice, or even just a few hours, but you would get seen sooner.
Have you started a symptom diary? Note down all the things you told us about in your first post, and then record how often they occur and what makes a difference e.g. weather, diet, sleep etc. You can then use the diary as a basis for the questions you ask the rheumy. Some doctors welcome our notebooks, others aren't so keen! So for the first visit it might make sense to have two or three questions which you really want answers to, and leave the rest for follow-up visits.
Take care - Chickpea