Posted , 5 users are following.
I have been feeling really crappy for the last couple of years- tired, fluey, achy, chronic sinus infections, dry eyes and nose,etc. I went to my doctor in February and she ran some tests. My SSA test came back high and, since my eyes are painful and burn constantly, she sent me to a rheumatologist. The rheumatologist did more blood tests (all negative except for the SSA), did a Schirmers test (showed dry eye), and asked about my symptoms. She said that, based on my symptoms and tests she was comfortable diagnosing me with Sjogrens. She suggested Plaquinel. She said I could have a lip biopsy if it would make me more comfortable with the Plaquinel. I started the Plaquinel, which made me sick to my stomach, and had the lip biopsy.
The lip biopsy was negative. I went back to the rheumatologist and asked if it could still be Sjogrens with the negative lip biopsy or if it could be something else? She said it could still be Sjogrens and that she was comfortable moving forward with that diagnosis. She said I could continue the Plaquinel but, if the stomach upset was too bad, I could stop it. She urged me to exercise more and see a physical therapist for a tailor-made exercise program. I had just completed two rounds of physical therapy for a back and shoulder injury and did not have the sick leave to do more. But, I do power walk several days a week for forty-five minutes or more so I am comfortable on the exercise front. She scheduled me for a follow-up in a couple of months.
During the visit, I kind of broke down and started crying. I had been under a tremendous amount of work pressure in a high stress job. I was working more hours than I ever have in my life while dealing with the side effects from a new medication and coming to terms with a new diagnosis. The rheumatologist suggested I see a therapist (which I have been doing).
I stopped the Plaquinel in June because it was making me sick to my stomach and I kept catching colds while on it. My job settled down, so the stress levels have gone down. But, I continue to feel fluey and my eyes still burn and are painful and I still have chronic sinus problems. I went to a new optometrist after six months on Restasis with no improvement. The optometrist determined i have mybomian gland dysfunction- several glands have been damaged and died away. Several more are clogged. She gave me some suggestions for that. She noted my tear production wasn't too bad, likely because of the Restasis.
I went back to the rheumatologist for a follow-up today. I honestly don't understand what happened with the visit. She came in, asked me how I was doing. When I told her about the sinuses and eyes, she asked if my primary doc was on top of that and I said I had just seen the primary doc a week before and that I have a new Optometrist who seems to know what she's doing. The rheumatologist then told me that she thinks all of my problems are from anxiety. I told her that my anxiety is actually pretty well controlled and the only thing causing me anxiety right now is how crappy I feel. She did a perfunctory exam where she didn't actually look at anything. She then tried to tell me that I have Fibromyalgia. I told her that doctors had looked for that previously and I do not have any tender points in any of the places where you have tender points with fibro. I have aches and pains sometimes but they definitely are not my main problem. She tried to get me to take neurontin or Lyrica for the fibromyalgia pain and told me to exercise. I told her that I walk several days a week for more than forty-five minutes at a fast pace and that I am comfortable with my exercise regimen (regularly pass 10,000 steps on my pedometer). She insisted that I have Fibromyalgia. At this point, I started tearing up because I have been feeling so awful the last couple of months and she was treating me like it was all in my head. I told her that I don't usually cry, the only time being, apparently, at her doctor's appointments. I told her that I had a rough patch in the spring with work stress but that is done and I am actually a pretty even-tempered person. I just get upset when doctors want to talk about anxiety and blame everything on anxiety.
She asked if I had any other questions. I asked her about the increased risk of Lymphoma and if you are supposed to watch for any signs. She said, "oh that isn't an issue any more because of your lip biopsy." She said "I probably shouldn't even have put you on Plaquinel and most rheumatologists would not have diagnosed you under the circumstances." I said "what about the blood tests, the dry eyes, other symptoms?" "What about my family's history of autoimmune disorders (mom, grandfather, great-uncle, great-grandmother)?" She said that my blood test numbers weren't that high and that I didn't have other markers of inflammation and I don't have hot swollen joints so I can't possibly have Sjogren's. She said I need to treat my anxiety and fibromyalgia and again tried to push me to take neurontin or Lyrica. She said she didn't feel like she needed to see me again but I could check in once a year if I really felt like it. I told her I wasn't interested in seeing her again and I wasn't interested in taking a maintenance medication for a condition that I don't have. I told her pain isn't my issue, that Ibuprofen controls any pain I have, and that it doesn't occur often enough to take a maintenance med every day. I then left.
I can't figure out what happened. She was the one who was so sure I had Sjogrens. What happened? Could I still have Sjogrens? Is it possible to have Sjogrens even though you have a negative lip biopsy? My dry mouth comes and goes. My eyes and nose are significantly worse in terms of dryness. The eye pain and burning makes it really hard to get through the day and, in the winter when the air is dry, it hurts to breathe. I am thirty-five years old and I feel like I am 80- so tired all the time, but not just tired. It feels like I am constantly running a low-grade fever. I just don't know what to do. I am mad and confused. I thought I would post since none of my friends or family could relate.
1 like, 5 replies
jennifer09136 meg64928
Posted
Good luck, and hope you sort this out quickly and satisfactorily.
katalin59838 meg64928
Posted
jennifer09136 katalin59838
Posted
Has anyone had punctal occlusion? My opthalmologist is keen for me but I'm not sure yet. Love to hear if others have had it and did it work without side effects?
tj268 meg64928
Posted
Hello meg, so sorry you are going through all of this. Getting a dx can be difficult and even though I am a very strong person, there are times at drs I have tearded up also so you are not alone! It's almost like I am upset I am sick, ticked off it is happening to me and frustration from fear doc won't believe me or think it is in my head. It is NOT in your head and don't let anyone make you feel that way. I was able to get a referral from my GP to go to a different rheumy outside my network and maybe you can also. In my case my insurance just needed a written letter.
I hope you find a dr worthy of your time and understands your symptoms are real!
tracy79802 meg64928
Posted
Meg - I'm sorry you're having a tough time. Sjogrens is an isidious disease because it's has a range of symptoms that vary from person to person and is difficult to diagnose.
First and foremost find a new dr and keep looking until you find someone you're comfortable with and who doesn't minimize your situation.
Take Jennifer's suggestion re: Fess nasal wash. I read her post and am going to try it too.
It sounds like you're doing all of the right things. Hang in there.
Join this discussion or start a new one?
New discussion Reply