Hi folks.
I am incredibly frustrated. I have a complicated past medical history that among many things..includes the loss of my r. lung from Bronchiectasis caused by an IgA deficiency. I was treated with Boniva (bisphosphonate) a couple of years ago..and I have never been the same. I am no longer on the drug..but have suffered constant joint pain (mainly in my r.knee, shoulders and hips) since then. About 3-5 months ago, it was like someone flipped a switch in my body. Many if not most of my joints started hurting; slight swelling at the base of my fingers and toes; intense fatigue; a skin flush on my legs & noticed intolerance to very warm water; all of the secretions dried up in my eyes; nose & mouth. I grew a little lump on one eyelid; my short term memory has stopped & I feel like I am in a brain fog. I started getting nodules on my fingers; my fingernails have now turned light purple and my bp is going bonkers. I already take bp meds , but my bp went up to 180/114 & I just got out of the hospital. I am still having chest pain...and...here's is the frustrating part...all of my bloodwork is normal. My ekg; echo and stress test were all fine. I have been to 3 Rheumy's. The first doc was a female who was incredibly rude, snapped that my bloodwork was fine and sent me limping on my way. The second did suggest that I had a rapid onset inflammatory arthralgia with sicca complex and gave me Lodine (which has helped). Then I heard from the administrator at the Univ. of Pgh. Medical Ctr.(where I live) that they had seen other Boniva patients like me..so off I ran. I saw two young med students who told me I had Fibromyalgia. The "real" doc came in the last five mins.; did not examine me and announced that I had Fibro. I said, Oh...does Fibro cause all of the secretions to dry up? He went into a dissertation about pain perception and told me I was probably just feeling a sensation of dryness. What! Then I said, that the Lodine had really helped as I could hardly walk over the holidays...he promptly told me that Lodine does not help Fibro & that I must have had something else. He ended the visit by suggesting that I might want to consider a counselor. :o I have read a lot online about Sjogrens and RA. I feel like I have the beginning of some autoimmune disease (or more) but am so frustrated by the doctors that I have seen that I am ready to just go the natural route with supplements. I do not want to go to one more condescending doctor who treats me like I'm neurotic. I only wish I knew of someone in my area who would not treat me that way. I own a small business with my husband and can hardly function. I want to understand what is happening to me and be treated appropriately. Please excuse my rant. Just searching for answers.
vitalsignspgh welcome to the forum. From your post it sounds like you might have Sjogren's (sicca) and RA or OA. Your narrative indicates possible other complications. I also dislike doctors that do not listen to us. Check to see if you can find better doctors. I am not a doctor so I can not provide more information.
I take Alpha Lipoic Acid and Acetyl L Carnitine to fight against brain fog. I have trouble with most meds so I use other methods. You can find most of these in my signature. I hope that you find a Dr that will work with you and treatment that helps you feel better.
((He ended the visit by suggesting that I might want to consider a counselor))
Sounds like either the dr doesn't really know or he doesn't like being asked questions. I go to a teaching hospital for my -ologists and never had a problems. Sjogrens usually goes with something else so you could have Fibro and SJS. I have Hashimoto's and SJS.
Unfortunately in your quest for a firm diagnosis you will get all kind of opinions.
Mine ranged from "some type of cancer but you are not sick enough" to "probably the cat's fault".
I am durn serious too.
Just keep being an advocate for yourself, ask questions and hang in there.
Hi Sandy,
Allow me to welcome you to Sjogren's World! ;) Even though nobody wants the issues our group has to become a member, welcome.
I am sorry you have received this type of treatment.
It makes me so angry when I hear of someone being told they may want to seek counseling or a psychiatrist when the doctor is just not sure what to make of their problems. It's like "THEY don't know, so YOU must have some emotional instability". Arrggh!!
And to give you a lecture about pain perception and say you're "feeling a sensation of dryness". We know when our bodies are dry. Arggh again! ;)
I am also not a medical professional, but I know that we can have many overlapping conditions with Sjogren's, including Fibro. or RA , Osteoporosis, Hashimoto's, etc. (Oh joy, right??) From what I know of Lodine, it's for inflammatory conditions and is a NSAID. Usually Fibro. is not inflammatory but of course many other conditions are.
Of course, you want to find out what's wrong and what you can do to improve your quality of life! It takes some aggravating effort sometimes to find a good doctor, but I hope you can search through a few more and see who will listen, treat you with dignity and care. They ARE out there, believe it or not!
Ask questions, rant anytime and keep us posted. We all support one another and I look forward to hearing more from you.
Take care,
Melinda
Hi Sandy :)
Welcome to sjogren's world. I know what it feels like to be disbelieved by doctors and how it can make one feel.
Some of us take way too long to end up with a diagnoses. Have you seen an opthamologist because dry eyes are measureable. Saliva flow is measureable too.
Quite a few people in here are sero-negative - so they don't have positive bloodwork. There are doctors out there who will dx on symptoms alone but finding them can be tricky.
The main thing is to get the symptoms you have treated. Symptoms can be alleviated.
I hope you find this site useful
Take care - Scottie :)