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I'm retired - but was working part time when I left work as I found a whole work week too tiring.  :)
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Hi Scottie,

I had splinter hemorrhages on my fingernails for years and years.  I haven't seen them for several months now though.

I brought these to my doctors' attention but they just shrugged,  thinking it was nothing to be concerned about.  The truth was,  they had never seen this before and had no idea what was causing it.

The one piece of my puzzle may be that my PTT was prolonged for many of these years,  indicating that my blood was slower to begin the clotting process.  This too was not of concern to my doctors,  and it resolved itself.

Good luck, Scottie.   I hope you get answers.
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Living With Sjogren's / Re: Polymyalgia Rheumatica - Does it come and go?
« Last post by irish on Today at 11:29:32 AM »
My MIL had this and it would come and go and sometimes not so bad and other times pain made it hard to walk We are all different so hard to tell, I guess. Have you tried the heating pad and resting?? I always use head or cold to deal with pain and it often helps a lot. . I take only Tylenol which is more helpful in inflammatory pain than previously thought. Good luck. Irish
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Living With Sjogren's / Polymyalgia Rheumatica - Does it come and go?
« Last post by SjoGirl on Today at 10:31:50 AM »
If you have Polymyalgia Rheumatica I am wondering -- does it come and go? When it comes is it much worse than at other times, (do you have flares)?

I ask because I had been well for the most part since my rheumatologist upped my Imuran several weeks ago. However, my fatigue and pain levels started to increase over the weekend and today I am in extreme pain. My neck down my back hurts tremendously as do my knees. My elbow are somewhat sore, but not as bad as other parts. I have a long diagnosis sheet which has included rheumatica and similar myalgias, though nothing definitive.

This comes and goes and when I get a wave it's terrible. I tried a Tylenol to no avail. I have Celebrex to try, but I have to travel tomorrow and am a bit afraid to try it lest it make me ill. I can't miss this trip.

Thoughts?
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Living With Sjogren's / Re: Xiidra vs Restasis
« Last post by SjoGirl on Today at 10:17:53 AM »
Just me. I have been on Restasis for years and it has been helpful. My dryness was worsening earlier this year so my eye doc added Xidra, which made my eye burn horribly. I tried it off and on several times a could not tolerate it. I have not tried only Xidra.
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PT two jobs which together equal more than FT. I am certain that my hours were reduced to PT at my last FT job because I was ill. I have not been employed FT since.
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Living With Sjogren's / Re: Do you work full time or part time or unemployed?
« Last post by irish on September 23, 2018, 06:44:58 PM »
I worked about 8 days a pay period for many years. I had a hard time working and keeping up at home for years but I was able to grab naps and make it through. I was always tired and half sick. I had to take some medical leaves a couple of times. I quit work for good June 18, 2003 and was diagnosed with Sjogrens in September of 2003 after being sick since 1964.


I did registered nursing and it was physically and mentally stressful and there were so many times I didn't think I would make it through the day. The last 5 years I worked was really difficult as I had so many more symptoms. My staff would ask me when I was going to quit work and I would tell them "when the doctor tells me I am sick". I finally hung it up before diagnosis as I could not fake it or pull myself together enough anymore. Unfortuately, this is often the way it goes with those of us who suffer from rare diseases that are hard to diagnose. Good luck. Irish
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Keep us posted!
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Living With Sjogren's / Re: I think I might have narcolepsy
« Last post by jazzlover on September 23, 2018, 04:38:04 PM »
If there is any chance you could have Lyme disease, I would get that checked out. It is a stealth infection that is often missed in testing.

I prefer Igenex Lab for any tick-borne illness testing.

Keep us posted on what you find out.

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Living With Sjogren's / Re: Peripheral neuropathy treatment?
« Last post by Carolina on September 23, 2018, 02:50:55 PM »
Hands may be carpal tunnel.  You can wear braces at night to position your hands properly.

I don't know about numbness in your legs.

I have profound peripheral neuropathy in my legs, walk with braces and a walker.

I didn't ever experience numbness except very cold feet due to loss of circulation from nerve damage to blood vessels.

I had tingling and leg cramps.  But mostly I fell due to foot drop and could not walk uphill or do rock climbing.

It was more loss of function than numbness.

My treatment for PN is medication for pain.  I also have small fiber neuropathy and lots of gabapentin helps with that horrible pain, burning, stabbing. etc. 

Most of the time there is no cure or treatment for PN, just relief of symptoms of pain.

But there can be MANY causes of PN: genetic, diabetes, alcohol abuse, heavy metals in environment, spine issues, even brain tumors, etc. can cause problems with your legs.

Your doctors should be looking at the cervical spine (neck) for numbness in your hands, and lumbar spine (lower) for numbness in your legs.

Most problems are most noticeable at night, and everything is worst in the morning, I find.

You can also find out a lot by using Google.  The information at the Mayo Clinic is very accurate and professional.

Regards,  Elaine
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