Depressed!
Posted , 7 users are following.
My symptoms continue to get worse and I'm depressed and can't see myself living like this for the rest of my life. My symptoms have been coming and going for years but this latest flare is the worst ever. I've still haven't been diagnosed with SS but I have every symptom. This is affecting my husband as well as he wants to make me better but can't. He's scared and I'm scare of living. I just can't do it anymore. I don't know what to do.
0 likes, 8 replies
chris08587 betty29240
Posted
hi there! you can do it and you will do it because the alternative may be worse....i was diagnosed with uctd and possitive for bloodwork for sjogrens april 2017. it has been pretty awful for me but i have had periods of time almost symtom free. i had a pretty good summer, but started feeling unwell again in the beginning of august. my brother died unexpectantly and suddenly august 10th and i spent the last 2 months pretty darn sick. going no where, had a hard time keeping food and water down, etc. happy to report im finally feeling better! this disease can be just awful, and i think for many of us, its worse when we first "get it" and i think for many, health does in fact improve. thankfully, on this site we do hear from courageous people who have been diagnosed for over 20 years and are doing well. the symptoms can be very awful; so much more than "some dryness". what helps me is to recognize it could be much worse and to be thankful about what parts of my body are in fact working. sure i cry and sometimes feel hopeless, but i still gotta try to do the best i can. id suggest your husband as well as yourself read all you can about your disease and keep a daily log that you can share with your dr when you get an appointment? may i respectfully as your age, your symptoms and your diagnosis to date? i hope you get some relief soon...
betty29240 chris08587
Posted
My symptoms started 18 years ago with roaming joint pain then a few years later, dry mouth, nose and eyes started. Saw a rheumatologist who said it wasn't sjogrens but maybe fibromyalgia. I had a lip biopsy in 2007 which was negative. Upon my insistence I was referred to a sjogrens clinic in another province. This sjogrens specialist said I didn't have SS. He said I had dry mouth and fibro but it wouldn't turn into sjogrens. My symptoms come and go. I can go for a year or two with no symptoms then it hits again. Everytime I have a flare the symptoms gets worse. In 2009, I was diagnosed with idopathic purpura as I had not other symptoms at that time and my blood work was perfect. I was diagnosed with Lichen Sclerosis in 2013. In 2014 both of my hands and hands became swollen and inflamed. My blood work finally showed high CRP in the 60's and ESR in the 40's. Put on prednisone which helped with the symptoms and managed to wean myself of this drug in 2 years. Still not diagnosed, said it was some type of inflammatory arthritis. The dryness kept coming and going. When it was gone I felt everything was going to be ok then it would come back again. Late last year I had a large rash on my leg. A biopsy showed it was urticarial vasculitis. My rheumatologist still doesn't think its SS. I had a few episodes this year. In February my mouth was really bad. My homepathic dr put me on a parasite cleanse and half way throught I started to sneeze and got congested for 2 days then my dryness went away. Weird. My symptoms came back 3 weeks ago and has continued to get worse. My glands are paining and burning. My tongue, throat and palet is also burning and dry. There is skin scraped off my tongue from my teeth. It hurts to talk and sometimes to eat. My throat is sore. My nose is completely dry and now my eyes are starting to get dry. My muscles hurt. I have pains in my stomach and have had loose bowel for a few weeks and have lost 6 pounds which is a lot for me as now I'm only 106 pounds. I never heard of anyone with my symptoms coming and going over the years. My blood work is perfect with my lastest showing my CRP at 0 and ESR at 1. I take salagen, sometimes it works and sometimes it doesn't. Same way with gum and candy, sometimes I get saliva and sometimes it makes my mouth more dry. I am 61 years old. Sorry for the lengthy response. It seems like I could write a book on my story. Thank you to everyone who responded. I really appreciate your support.
donna57006 betty29240
Posted
Dear Betty, I am so sorry for what you are going through. I had blood work that came back negative for antibodies in my blood for Sjogren's. I had my dermatologist who is a surgeon due two biopisies of my tongue. She told me that one might come back negative for antibodies as it did in blood work. The one biopsy came back negative for antibodies. The second biopsy came back: Changes consistent with Sjogren's. I have painful burning of my lower lip, the front of my tongue and the skin on cheeks is always seeming to come off. My muscles and joints hurt as well and I do not have tears, even when I cry. Stay away from candy as dry mouth causes cavities; it is the saliva that helps prevent cavities. I have to take Pilocarpine, the generic of Salagen or I will not salivate at all. My symptoms do not come and go, they only get worse. I am 66. Also, the majority of people that have BMS are post menopausal. I read that when estrogen levels decrease, they affect the salivary glands. I have been on HRT since I was 47 and I am still on it but I am sure my estrogen levels have dropped lower. I also have Hashimoto's thyroditis. My thyroid gland is okay, but I have the symptoms of dry fragile hair, my nails are weak, and my skin is very dry. The Sjogren's makes all of this much worse. As far as your lip biopsy, find out if it showed negative for antibodies and if so, you probably need a dermatologist who is a surgeon and aware of Sjogren's to do the biopsy that I had which would have did come out negative for antibodies, but positive for changes consistent with Sjogren's. Eternal blessing upon you, donna
lissa02504 betty29240
Posted
hi betty i am so sorry to hear what you been going through . sjorgrens syndrome is s autoimmune disease with no cure read up on foods that are good for you to eat that may help on terms of eliminating inflammation at least in your diet. also you mention your husband you have a reason to fight. also meditterian diet is good . take some olive oil snd your omega oils ive been told these things help. chew gum to help sith produce saliva in the mouth and use your eye drops. THE PAIN IS CAUSED BY INFLAMMATION TRY NOT TO PUT MORE IN YOUR BODY IF YOU CAN HELP .
betty29240 lissa02504
Posted
I've been following a healthy diet for many years. No wheat or diary and lots of vegetables. I've also been seeing a naturopath for years. I don't smoke or drink and I love to exercise. I take supplements including Omega 3 oils. Chewing gum makes my mouth more dry, can't understand it. I agree with following an anti inflammatory diet but I already have this incorporated in my life. Thanks for sharing your thought.
jeniferpg betty29240
Posted
I too have been overwhelmed, Betty. I cannot take the pain anymore. We've gotta keep our chins up though. My suggestion is do not overwhelm yourself. Rest every day. Take naps. I find I crash and burn when I try to live my life like I'm a normal human being without a disease. It's a game of luxery we can play for about 1-3 days. Then we become overwhelmed with symptoms and have to recouperate for three days. Don't do it. It isn't worth it. Learn to keep your cards (and health) close. When taking care of yourself and feeling good...keep taking care of yourself. Not many will understand and most won't even want to know. It"s ok. It's your life now. Let go of all of the trying, Accept where you are. Then learn to enjoy the little things again.
donna57006 betty29240
Posted
Dear Betty,
You have every reason to feel depressed; you are normal as pain does create depression when it won't stop. Fortunately you have a husband who is there for you. I am alone and 66 so my age is also making my symptoms worse because of inflammation and degeneration. I have Sjogren's, Hashimoto's thyroiditis and burning mouth syndrome. I am in excruciating pain and only my hair doesn't hurt. It has taken everything out of me. I take Pilocarpine because I can't salivate, but I keep spitting up liquids; not food. I use eye drops and when I cry, there are no tears. Please realize this is not a life threatening disease but it certainly can interfere with living. Try hard not to get stressed as that makes everything worse. Drink a lot of water throughout the day. If you feel therapy would help then go for it. I too am very depressed as I am in pain and I have been a widow since I was 49 and now I am 66. I wish you blessings and you will be in my prayers. donna
Jalanez betty29240
Posted
Hi Betty, I'm so sorry that are you are dealing with the depression end of this thing right now, it can make it all the more unbearable from day to day and even moment to moment. One of the things I did once I was finally got diagnosed correctly a little over 2 years ago after being quite sick for years was to get in touch with a therapist. I was overwhelmed with the amount of action this all required on my part as far as gathering information, dietary changes, and doctor researching. I had to begin to form a realistic lifestyle change, not one I would like orone I think I should be able to live but one that I could actually live reasonably day to day.
It's been a huge learning curve for me, despite my thinking I am pretty smart! There's been lot of trial and error on how I am able to process certain foods effectively and just how much exercise is too much. At the same time, like Chris mentioned, stress can lay me out in a flare that can really put me down for months at a time despite my best efforts, it's the nature of a chronic illness.
What you are feeling is something I think we have all felt, I know I have more than a few times and probably will again. I am not sure why you have not been diagnosed but that is something I would get done so that you can get started on medication that can stem the destruction of Sjogren's on the major organs in the meantime, this will help with some of the symptoms. Hang in there because remission comes.