Hello.
I just recently joined the board and having been reading through all the discussion threads and am very happy to have found a place where others are experiencing what I am starting to go through.
My story so far:
Last March, I broke my foot, it healed and i finished up PT and was feeling pretty good and a few days later hyperextended my knee and fractured another bone. :( (same leg ugh!) Until then, I'd never broken a bone in all my 39 years! My body just seemed to be out of whack after that. I even got this rash on my chest that seemed to be sun induced and would not go away.
I then went to my primary care doc for my yearly physicial and she ran some extra bloodwork (vit D levels etc) and I tested positive for Sjogrens so I got referred out.
I went to a rheumy where he was a very dry character and basically he just said to watch it. At that time, the only symptom other than bloodwork I was experiencing was the dry mouth and possibly the rash. He gave me some booklets on Sjogrens & SLE and said to come back and repeat bloodwork in 6 months.
Since then, I've done something to my "good" knee, which I am thinking might be a torn meniscus. I decided to wait until after the beginning of the year to go to the ortho so I could start a fresh deductible, etc. My appointment with the ortho is tomorrow.
I am not sure whether any of this bone/joint stuff is related to auto immune, but I chose a clinic that has both ortho and rheum so I am hoping maybe they can tag team me if needed.
Also, since all of this, I've really started to see more signs of Sjogrens: dry mouth, other issues with my glands and sharp shooting pains in my jaw to ear area, burning eyes, extreme fatigue where I just want to fall asleep walking, food is tasteless and my sense of smell is almost nothing. I've always had sinus issues but it seems more constant now. Often times I find, more than ever, I can't pronounce words as easy either. As I have read from others on here, I also have a very hard time EVERY morning to get going. It takes me almost 2 hours and several cups of coffee after getting out of bed to quit feeling like I was hit by a truck.
Ugh! the unknown is all so confusing! I am anxious about tomorrow's appointment. Not sure if it will ever be the same again but at least I can hope to get some answers.
My husband keeps saying that maybe the bloodwork was wrong and all my issues are just a fluke and happening all at once. Is that even possible? And why I am I experiencing all these symptoms. I am trying to stay positive, but I do worry with my bone/joint issues that it's more than just Sjogrens.
I feel like there is a long unknown road ahead......
I to just got recently diagnosed 33 yr old male! I can tell you one thing and that dont look at what the future holds anymore as it will just worry you. Take this one day at a time it has helped me a bunch. There are alot of GREAT folks on here that have helped me out in the recent weeks.
Matthew 6:34 "Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.
Welcome, clhawki,
It sounds like you've had a tough time. I am glad you found us, as we understand and want to help you.
andSomething you said really struck a chord with me. In addition to dry mouth, dry eyes, allovr pain, etc. I also have a TERRIBLE time trying to get going in the morning. I keep getting up earlier and earlier for work, yet I spend the first hour or more drinking coffee, taking meds and waiting for them to kick in a bit so I can take a shower and get dressed...I thought it was just me!
I have been through horrible episodes where my throat and tongue would swell up and I couldn't speak or swallow. This is how I ended up going through allergy, swallow and other tests. Although none of the Sjogrens specific things turned up in my blood, I was Sjs. Thre rheumys were of no help at all, but my PA and PCP are sure it is sjogrens and they help with my symptoms as much as they can.
It is up and down, but you'll be OK and we will be here for you.
God bless,
KellyG
Welcome to the forum!
I used to get that sharp shooting pain in my jaw up to my ear too - since starting Plaquenil, I haven't had that happen (knocking on wood!) But many of your symptoms absolutely sound like SjS.
Good luck with your upcomong appointments and keep us posted!
Welcome to the forum clhawki. Bring an advocate with you to the doctors office. It is often very hard for us to remember what is being said to us and what we want to say with out having an advocate with us.
Your broken bones concerns me because I do not believe that is typical of Sjogren's. There are a number of other things that could be causing the braking. I hope that they do more blood test to rule some of them out.
Have the doctors checked you for osteopenia or osteoarthritis?
Winnie
Welcome . . . wish you didn't need to find us all here, but glad that you did. There are so many helpful people here.
A lot of your symptoms do sound "Sjogren-esque", but like Joe, I haven't heard of broken bones being associated with it.
I am new here as well and just as relived to have found the site. I also have a very hard time in the mornings. I have no insight to broken bones and Sjogrens, but really felt compelled to respond to your post. My Rheumetologist says that I am more prone to bone issues die to my birth control and the Sjogrens. Not sure if this helps you at all.
the inability to spit out a sentence by days end frightens me when it happens! I have always prided myself on my verbal skills and use of language. Suddenly when I am tired and " foggy" I can see the words in my brain but somewhere between there and my tongue a synapse doesn't fire.
I truly know what you mean on that one. And I don't like it either one bit!
There are other autoimmune diseases that affect the connective tissues; you need some more testing done. If you have one autoimmune disease, you often have more than one.
Wish I had better news, but you also really need to have a bone density done.
Hi clhawki,
Let me also welcome you to the SJS World and family! I'm sorry to have to meet you this way, but I'm glad that you've found us!
Wow, seems that you're having quite a few problems and I sure hope that the ortho can help you!
Good luck tomorrow and I sure do hope you get some answers soon!
Take care of yourself -
Patze
Thank you all for your replies.
As I said in my original message, it is really nice (however unfortunate situation for all) that there is a place here where you don't feel alone in trying to understand and cope with all of this.
Went to the ortho yesterday and received a steriod shot for tendonitis. I'm not much for needles, especially in the knee region, but it's already helped the pain tremendously! I talked to him about my Sjogrens a bit and whether my bones/joints are related, but of course, it's not his "specialty" so he didn't have a lot to say other than this kind of stuff takes time to play out and that it affects everyone differently. He didn't seem to think I have any major joint or arthritis issues at this time. (I could sometimes disagree with that...)
I have an appt with a new rheumatologist in a couple of weeks so I guess right now I just need to find some patience and take it in baby steps.
On a positive note, I woke up EARLY this morning all bright eyed and bushy tailed and didn't feel that usual hangover feeling today. Wish I had more of these mornings but will take what I can get today! :)
Thanks again for all your kind replies and welcome!
Horray for steroids!
I've read somewhere that rheumatologists have a miracle drug in steroids and they spend most of their time weaning their patients off it. :o
Welcome to this great group of compassionate people!
I would definitely get a DEXA Bone density test to check for osteopenia and osteoporosis. My sister-in-law's sister tested posted for osteopoprosis at age 25. They said she had the bones of a 70 year old.
My gynecologist is the one who orders the test and it is given in his Surgical Clinic. I just had one and am waiting for the results. Before you have the test they gave me a Bone Density Risk Assessment Sheet to fill out. It featured questions like - how many fractures have you had and where and whne? Are you on birth control? Have you had years where you have not had periods? Are you taking any medications that affect your bones? Under family history it gave you choices to circle - mother - father - sister - brother.
Since I had been on the Depo Provera shots for nine years due to endomitriosis and the fact that both my father and mother have osteoporosis I'm sure puts me at high risk.
My mother suffered a compression fracture of her T4 vertebrae in her spine in September 2011 which led to her diagnosis. I wouldn't wish this on anyone. Five months later and she is still in pain. She's taking painkillers, wearing a fentyl patch and a lidoderm patch. She can't lay down and sleep a lot of times due to the pain.
She will never play golf or drive a car again. The doctor said her bones are so brittle she could break one just by turning over in bed.
I've read some books on osteoporosis and taken on some of their recommendations because I definitely don't want it later in life.
I have to respond about Osteopenia/Osteoporosis & the use of Bisphosphonate drugs (Boniva, Fosomax, all of the drugs that are used for the above condition). Please think very carefully & do your research before you ever take any of these drugs. I firmly believe that Boniva initiated the start of my Sjogren's/Automimmune problems. I won't go into the long story...but all of my joint pain; hip/shoulder pain, & everything that came after started when I was on the drug. When I realized it..I started to research. I only wish that I had found the site I will list below, BEFORE I took the drug. I spent a great deal of time reading other's responses & even asked the administratiors of the site to share their database with me (which they did). I did this because I was astounded at the numbers of individual body systems that were affected when women (and some men) took these drugs. The site is: AskAPatient.com It is a site where random individuals complete a small survey about various drugs & their responses to them. When I last checked, there were almost 1400 people who have had these horrible responses to Boniva & all of the Bisphosphonate class of drugs. Also, the FDA has a few warnings out. Please don't take these drugs..I have been off of it for 3 years & my problems just continue to get worse. :-[
Yes, I absolutely agree with SjoDry. I had an allergic reaction to Fosomax. My doctor told me that it was just how the drug worked and it would subside. I continued for four months and then quit. Another doctor later told me it was an allergic reaction. It was the worst bone pain I'd ever had in my life!
There are other options other than taking these drugs. I have read several books. One from a lady whose grandmother and mother both have osteoporosis and she has kept herself from getting it by using supplements, vitamins and exercise etc. I am taking her approach. Still waiting to hear back on my latest Bone Density Test.
In my opinion all of these drught ought to be pulled off of the market - Boniva, Fosomax and the like. They don't work - only strengthen one part of the bone and that leads to fractures because the soft part breaks. They can cause life long side effects etc.
My parents and I had a similar conversation regarding these drugs after their diagnoses and they decided not to use them.