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11/25/2011 09:31 PM

Need to talk to others who have go through this

sunkissed64
Posts: 9
New Member

I've had sjogrens and rheumatoid arthritis since I was 23. I'm 47 now and it seems that with age my flares are coming more often and my daily medical issues are worse and more constant. I've had hypothyroid forever too and have been on synthroid since around age 14. My eyes are terribly dry so is my my skin so I'm constantly putting drops in my eyes and lotion on my skin. My mouth is a disaster because of the dryness I've spent so much money on the dentist and it's so bad that I have lots of temps in my mouth because I can't afford porcelain crowns at a thousand dollars a pop. Every so often I have swallowing issues and I'm hoarse most of the time. I haven't been diagnosed but I'm pretty sure I must have chronic fatigue because no matter how long I sleep I'm always drained, the achy joints and muscles make me feel old and run down. I don't look like the vibrant me anymore I feel like a monster because I feel so bad I don't do much in the form of exercise so I've gained weight. I'm depressed and don't know if it's another side effect of sjogrens or the fact that I look and feel so crappy. Do you guys have brain fog? I never used to have memory issues but now I do. The latest issue is major hair loss. I have less than 1/2 the hair I once did. I lost hair like this once when I was first diagnosed but since I had so much hair it wasn't a big deal. Now I'm depressed and petrified that I will be left with no hair. Does sjogrens effect your lungs because I'm finding myself weezing sometimes.I live in Miami Florida and have yet to find a doctor that doesn't just blame all my aches and pains on my weight. I'm not crazy I feel AWFUL. I was laid off over a year ago so I can't afford to run around to a dozen doctors to have them just tell me to use drops and take advil or aleve from my joint pains. Have any of you lost your hair because of sjogrens? I'm thinking it's at the cause of this because I feel terrible because I'm flaring. I went to a dermatologist and had blood work. She seems to think it's hormonal. I just pray to God that my beautiful hair grows back in. Right now I'm taking biotin and multi vitamins blended to benefit the hair. I'm hoping you guys can be a source of comfort because God knows I need it. Healthy people don't understand. They don't get that I don't have the energy, willpower, let alone feel well enough to go walk around the block when some days I can barely get out of bed.
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11/25/2011 11:02 PM
kellylynn
kellylynn  
Posts: 239
Member

sunkissed, first let me tell you that you are not alone. I am 36 and have been diagnosed with sjogrens for 6 years now.i was on different medication for it and lost alot of hair, i actually borrowed money from my family to go by a wig at one point. As far as the brain fog goes i also suffer from it some days are much better than others. The worst that lasted for several days was when i started forgetting everything, i was driving down a road i have been on a million times and had to pull over because i did not know where i was or how to get back home i was scared and started crying. it can be very scary. also i have come to relize that no one understands what is happening with us physically and proably wont unless they were going through it. Mentally i get very depressed when the pain last for days or sometomes weeks on end. If you ever want to talk you can im me or just post there are alot of good people in this group. so i just wanted you to know i am in the same situation as you are.

kellylynn


11/26/2011 01:03 AM
twistedDNA
twistedDNA  
Posts: 1162
VIP Member

Welcome to the group sunkissed64,

Just like Kellynn said, you are not alone here.

Although I wasn't diagnosed with Sjogren's until 2010 I have been experiencing the symptoms since I was a young teenager. All my health issues slowly became worse over the years and grew to an all time high last spring.

Dryness is a constant battle, I use Biotene products for my mouth, drops, gels and heat packs for my eyes, Saline spray in my nose. I wear sunglasses to protect my eyes. I use CeraVe and Cetaphil on my skin. Dove in the shower. I've been diligent taking care of my teeth ever since I had my first tooth pulled. I use small brushes and floss to get in-between my teeth, I brush my teeth after every meal and so far I've managed to keep most of them, although I have several crowns and fillings. Like you, I too have brain fog but it was much worse when I was eating gluten. I can't remember the last time I didn't feel exhausted. I don't sleep well at all.

My hair is falling out at an alarming rate, I've been collecting it each week to bring to my MD on my next visit in the hopes she will see this and help me in some way, visuals are not ignored.........

I've never had wheezing but I did huff and puff when I could still move fast.

Its common to be anemic with Sjogren's. I had a nutritional panel done to find exactly where I was lacking last summer, but now with the amount of hair loss I'm having along with the constant weight loss (I now weigh 97lbs) I might need another one.

This is definitely the place to come to vent, share and find support. We all understand what your going through.

T


11/26/2011 10:56 AM
gemini2
gemini2  
Posts: 423
Member

Sunkissed64...Welcome. My symptoms also began with hair loss. It was the 1st sign that something was wrong. My doctor knew that 6 months earlier I had lost my husband to a stroke, and assumed it was stress, and the fatigue and pains were from getting old. It takes awhile for the diagnosis, as we all know. The brain fog comes with it, at least for me it has. I wish you all the best...this is a wonderful group to be a part of, they're always here to lend an ear and help with some good advice, etc... There's also an RA group that's very helpful too. Thank goodness for MDJ.

Take care, and God Bless. Smile


11/26/2011 11:47 AM
sunkissed64
Posts: 9
New Member

I'm so grateful for the internet because it allows me to learn as well as "meet" other people like me going through this maze that is auto immune diseases. I'm stressed out and I know that that doesn't help things but it's hard not to be when I am jobless and almost down to no money at all on top of all my health issues. I feel overwhelmed and like a failure sometimes but try to remind myself that there are people worse off than me. I don't recognize myself anymore. The topper now is my hair loss. My hair used to be my pride and joy. I hope with treatment whatever that ends up being that it grows back. Thanks for your wonderful reply. Glad to know someone understands and cares.

11/26/2011 11:54 AM
sunkissed64
Posts: 9
New Member

Hi T thanks for taking the time to reply to me. You know it sucks that we're already feeling helpless and frustrated enough only to feel like it's up to us to prove to our doctors that we're sick. Sometimes I feel like most doctors have no clue about auto immune diseases and just guess their way through helping people with conditions like us or even worse make us feel silly or stupid. I would love to find a doctor here in Miami that has a working knowledge of sjogrens. My current rheumatologist I have stopped going to because he didn't help me. Before my symptoms weren't as bad and he just told me to take anti inflammatory like advil or aleve and use drops. That just won't cut it anymore. Right now I need to stop the hair loss before I'm completely bald.

11/26/2011 11:58 AM
sunkissed64
Posts: 9
New Member

Gemini2 thanks for replying. I'm hoping this is the worst I get to feel. Will see the rheumatologist next after I see what the dermatologist has to say.

11/26/2011 12:05 PM
sunkissed64
Posts: 9
New Member

Hi TwistedDNA This condition is like a puzzle that I can't figure out. The doctors aren't very reassuring most of the time they just make me feel like I'm whining or a hyperchondriac. All the symptoms could be one of many conditions so yeah this is frustrating as hell.

11/26/2011 12:26 PM
fruitloop

Sunkissed, you are spot on when you say this condition is like a puzzle. Connective tissue diseases are so hard to define sometimes, and the bottom line is blood tests don't tell the whole story. But every rheumatologist I've seen except my current doc in Los Angeles were not only dismissive, they were insulting and disrespectful. This gets my blood boiling. How the hell can they say it's in your head if you've got all these symptoms?! Ignoring complaints of painful joints and muscles really disturbs me, but the fact is you can show them your hair, your skin, your eyes, your mouth. It's like.. ... there's no way that is in your head. You've got physical proof! *So* infuriating.

How is your thyroid? Ugh.. that's the thing about these autoimmune diseases.. so many symptoms can overlap too. It's a puzzle for sure. Have you ever tried adding Cytomel to your Synthroid?

I apparently have Sjogren's, along with SLE, and I had? Hashimoto's. I guess I have Hashimoto's but I had my thyroid removed. NSAIDs are no good for me at all in relieving my symptoms. In fact, for me, they make things worse! I hate to say this, but you've got to keep doctor shopping. I had to see SO many Sad it was a nightmare for me and I honestly didn't even have a clue as to what I was looking for. I'd never heard of "auto-immunity"!

It sounds like you're in *serious* need of one or more immunosuppressants. Have you ever been put on Prednisone? Also DMARDs are fantastic for a LOT of people, namely Plaquenil. I take Quinacrine but if you can tolerate Plaquenil, for so many people it's miraculous. But the bottom line is you're going to have to find a doctor that believes you. Sad It is so frustrating, I've been where you're at. But it can get better, and I hope and pray that it does for you.


11/27/2011 10:25 AM
Mariah13
Mariah13  
Posts: 198
Member

Hi all,

Are you taking a therapeutic dose of Biotin? That can make a difference. My dermatologist said to take 50 mg per day. You can find those at health food stores such as GNC.

I'm lucky that I can tolerate Plaquenil, and it has helped me.

But it can be frustrating. Tomorrow I have an appointment with a Ear,Nose,&Throat specialist to have a vein in my nose cauterized. With dry weather coming on, I'm getting nosebleeds every 3 days. Ah, the disease that keeps on giving ...

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