Hi Chick...I will leave out the old and fat because I'm sure you're not! What you say about the auto-immune "domino" effect - makes sense, I guess. I never heard of Sjorgen's, either, until it popped up when I was googling my symptoms. I'm just learning about Raynaud's syndrome now but I don't know much about hashimoto's thyroiditis (sp?). So sorry you have all of these! But it's good to know that meds are available to deal with some of the symptoms, at least. It's the exhaustion that's the hardest for me to deal with right now, especially with a full time job.Hard to find the time to even go for a doctor's appt. But I can't continue on like this, either. So - guess it's time to buckle down and search for a good rheumatologist.
Thanks so much to you, and to Grammy and to Nicola, for your responses and suggestions.
Carol
Hi Grammy....thanks for your reply. I thought I had just posted this response but I wasn't logged in - hope you don't get it twice. I just wanted to say thank you for replying to my post and in answer to your question - no, I don't take naproxyn or Alleve (don't think we can get alleve here in Canada). I take Tylenol 1 when the pain in my hips / wrists gets really bad,- which is almost every day! I know I need to find a family doctor but it seems no-one is taking new patients and some days it seems easier to just pop a few pills. But I know that's not the right attitude to take so - I will try to get a referral to a rheumatologist and take it from there. Will keep you posted. Thanks!
Carol
I have been diagnosed with Sjogren's recently (2010) and I also have Raynaud's and Hashimoto's Thyroiditis and mixed connective tissue disease. The auto-immune stuff seems to have a domino effect. If you have one auto-immune disease, you are likely to have more. I have the dry eyes, mouth, nose, skin and the burning fingers/toes. I also suffer from fatigue, although my meds have got a lot of my symptoms under control. Meds for Sjogren's include plaquenil and Evoxac. The Evoxac is for boosting you salivary gland so that your dry mouth and throat aren't so bad. I used to choke often because of the dry throat, but the Evoxac has all but done away with the dry mouth. It doesn't do anything for the dry eyes and skin and nose and all the rest, but a good lotion can help. Evoxac can be expensive, but I spend the money because it works so well. Definitely see a rheumatologist. And if the rheumy doesn't know much about Sjogren's, find another one! I recently had surgery and was surprised to find that no one (including the surgeon) knew much, if anything, about Sjogren's.
Hi Carol.
You are welcome. You need to get this sorted as soon as possible, so you can get diagnosed and the proper appropiate treatment, then you wont feel as bad as you do,
I was in your boat, being passed from one doctor to another, with no answers, and suffering the symptoms.
Funny enough some of these doctors seem to think they can cure all problems, with anti-depressants, lol,,, when we know our symptoms are true.
I usually run a mile from the ones which suggest anti-depressants.
I would reccommend that you find yourself a good rheumatologist, do a bit of homework to find the best one around, even look at there patients reviews,
Keep intouch, and good luck.
Nicola
I would certanily find a primary dr, and a rheumotologist sounds like a good idea. You need more than clinics are doing for you. there are so many different diseases out there that have your symptoms... Have you been tested for lupus, sjogerns or anyother autoimmune disorders? Do you take any ansiads like alleve or naproxyn? Let me know how your are doing
Thank you Nicola, I would not have thought about seeing a rheumatologist, but it seems a good place to start. Next time I'm at the clinic I will see about getting a referral. The last time I was there I was complaining about my aching joints and exhaustion and the doctor suggested an anti-depressant - which I declined. It's not depression causing my symptoms, it's the other way around! Anyways - tThanks for taking the time to respond to my question - it is much appreciated. Some days, with all of this going on, I feel like I'm going crazy.
Carol
Hi.
Yes your symptoms do sound like sjorgens syndrome.
You said you had bloodwork done for diabetes, and they were normal, they would be normal because this is not diabetes.
This sounds very auto-immune to me, and i would be making provisions to see a good rheumatologist, for your problems, to get a full auto-immune blood profile done, to rule out different auto-immune diseases.
Now your hands which you describe when you go out in the cold, and your fingertips burning, you explained this clasically, this sounds like Raynauds, this is when the small bloodvessels go into spasm, usually due to being cold, the hands can go white, blue/purple, and then can go red, this is due to the circulation, they can even burn, and can go sore, some people even get sores on the fingers due to blood circulation.
Raynauds, as it is called, is seen in numerous auto-immune diseases, and is usually a secondary problem, which goes along with an auto-immune disease.
I hope i have explained myself very well, but if you need anymore help just give us a shout.
Get yourself in with a good Rheumatologist, for your problems, as rheumys, deal with these situations the best.
Good luck
Nicola.