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Old 06-05-2010, 07:06 AM   #1
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sjogrens

dx with sjogrens main symptoms are weak fatigue feeling and burning skin. Anyone that can help with ways to deal with this??? Thanks. Want to feel like myself again.

 
Old 06-06-2010, 03:51 PM   #2
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Re: sjogrens

Hi,

Has anyone tested you for Fibromyalgia? I was just diagnosed with Sjogrens recently but have been diagnosed with Fibromyalgia for years. With the fibro I have fatigue, muscle pain and stiffness, and patches of skin that feel like sun burn to the bone. It burns but eventually goes away. I just had when something touches the area like clothing. Does any of this sound similar?

Also, is your doctor a Rheumatologist? They would be the best type of specialist to determine fibro and sjogrens.

Angie

 
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Old 06-06-2010, 06:22 PM   #3
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Re: sjogrens

Hi a rheumotologist would be the type of dr to see for fibromyalgia and sjogren's. However, you need a rheumotologist who really knows about them. Too many stick only to black and white as far as blood tests.
There are organizations for both conditions. I contacted the sjogren's one and they sent me all kinds of good information.
Fibromyalgia doesn't show on blood work and there are still doctors who don't believe it exists.
A sleep study is also good because it can show if you are getting into the necessary levels of sleep. Your body needs to get to certain stages in order to restore tissue and muscle. Often fibro patients do not and therefore a sleep disorder contributes to the achiness and fatigue. That is where an antidepressant taken at bedtime can help with the seritonin levels.
I tend to get the burning skin if I am in a draft or under a ceiling fan. I want to climb the walls it hurts so much.

 
Old 06-07-2010, 11:19 AM   #4
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Re: sjogrens

Yes, I am seeing a Rhuematologist. I guess I need to speak with her more, because I want to know if she diagnosed this because of my symptoms or because of the blood test. She called me and I really did not know what to ask right then. I have another appointment with her. Yes, those symptoms are familiar. I get a very hot, warm, sunburn like sensation mostly on my top part of my back, neck and shoulders. Sometimes it can be all of my body. THis is not a hot flash, I have those and they are much different. I do feel better, still a bit week. I am also kind of wobbly when I walk. Just sort of off kilter. I also had a problem with my ear and throat so maybe that has something to do with the sesation of off balance. Thanks for your reply. Good luck to you.

 
Old 06-07-2010, 08:53 PM   #5
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Re: sjogrens

Ask for copies of any blood tests and reports. I have a huge file filled with my records. It's always a good idea anyway. I lost many records when a medical insurance plan I had went bankrupt and my mom lost all her records after an earthquake and the building was condemned. I was lucky my rhuemotlogist was allowed to enter his office long enough to get his patients' records.
I can't handle heat anymore. I feel very weak if I get hot. I also have incredible thirst all the time. The sweats are horrible. The restasis drops for the eyes have been so helpful. I was in agony prior to using them.

 
Old 06-22-2010, 04:01 PM   #6
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Re: sjogrens

I have the same "off kilter" feeling. It feels like I just stepped off a rocking boat. Plaquenil and Medrol improved it a lot but it never totally went away.

 
Old 06-23-2010, 07:20 AM   #7
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Re: sjogrens

Wow!
I have been dealing with the imbalance issue around the same time the dry eye issues started in the winter. I even went to see a neurologist and she was not sure what was going on. She thought the methotrexate might be making me wobbly and so forth.

I'm going to see her next Friday and will mention all this. This has been very helpful. Thank you all for the information in this thread!

 
Old 07-07-2010, 02:20 PM   #8
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Re: sjogrens

Quote:
Originally Posted by mrmjem View Post
dx with sjogrens main symptoms are weak fatigue feeling and burning skin. Anyone that can help with ways to deal with this??? Thanks. Want to feel like myself again.
What meds are you on for the Sjogren's? Plaquenil is generally prescribed for help with joint and muscle pain, Evoxac helps with the dry mouth, eyes, etc.

 
Old 07-07-2010, 04:51 PM   #9
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Re: sjogrens

Hi TexasDawn,

I found out that the imbalance is probably from inner ear issues. I did some internet research and it looks like Sjogrens has connections to vertigo along with other ear issues.

I am actually on Methotrexate and Restasis. I am allergic to both the name brand and generic plaquenils. Also, the plaquenil stopped working, anyhow. The injectable methotrexate has been the only medication to really keep the pain in check. I also have less flares. My mouth is not that dry, so I have not had to go on a medication for that.

Hugs,

Angie

 
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