Muscle weakness and heaviness with sjogrens???

[finallyadx]

Hello all - hope you are all enjoying your summer as much as possible.

I was doing quite well this summer (guess I should be thankful instead of venting and upset now) when all of sudden last week kaboom - I started to feel heaviness in my right arm/hand and feeling muscle fatigue and weakness.  Having some pain in my upper legs right before my knee...

I have had so many weird symptoms since my journey began with sjogrens a few years ago that not allot scares me, worries me or surprises me much anymore.  However, that being said I am a little freaked out about this.  I was so freaked out over the "sensation" this morning that when driivng my children to swim lessons I turned around and headed back home...wondering what else is going to happen?  Am I going to be stuck at swim lessons not able to drive, etc.?  I know crazy thoughts but when it comes to my children I am always super careful and I am having a weird symptom that is fairly new and I am not sure where it is going I want to assure everyone's safety.

I have read up allot on other autoimmune issues - curious but also cautiously optimistic that I will not get any more and I have read about myasthenis gravis and am concerned...

Any thoughts or ideas?  Also do others on the forum experience muscle weakness/fatigue and feelings of heaviness in their limbs from time and time and have you been told it is all part of sjogrens?

Thank you  all for your valuable input/support.

Hugs
Kim

[wildforwater]

I've been having muscle weakness in my arms, legs, hands and feet for some time now, along with stabbing pains, numbness, burning and tingling and the feeling of cold water hitting my skin.  I also have a very uncomfortable tickling feeling in those same body parts as well.  I've noticed heaviness before but this past Saturday, I was at a music festival and walked more than I usually do.  My legs felt like lead and it was hard for me to walk at a normal pace. 

I have a f/u appointment with my rheumy on Thursday and have a feeling she'll suggest I see a neurologist (which I planned on anyway).  What you're feeling sounds neurological as well.

Hope you're feeling better and get some answers soon.

Maria

[finallyadx]

thank you for your reply wildforwater...I have seen a neurologist - about a year or so ago and had the nerve conduction tests...negative...so please let me know what you find out for yourself...I feel like a hypochondriac but yet I know I am not...it just seems one thing after another.  And then to have a pretty good summer (yeah - thank you god!) and now to be feeling lousy again...just frustrating.  Thanks for listening.  Wishing you luck on your appt.

[grammad97]

Kim-
I know experiencing new symptoms do sort of freak us out when they happen. Despite a negative EMG you do have something going on and I am happy to hear you see the rheumy this week.
I personally felt the heaviness in my limbs as my first symptoms in 1998.
My docs then sent me to neurologists; did MRI and also an EMG and sent me to the top doc at University of Oregon Hospital and they said too soon to tell anything but it could be MS or chronic fatigue.
Since then those feelings disappeared and the joint pain took over along with digestive system problems and hearing loss oh and the dryness everywhere.
What I am getting at is tell the Dr and see what happens.
It was not my intent to frighten you but I wanted to share my experience with the lead limbs and how vague the docs get ytrying to decipher what ails us.
Hang in there and don't stress over it too much and wait to here what Dr says.
Take care.
Deb

[Chris]

I know that feeling! Perhaps you are in a flare? Hopefully your doc will order bloodwork.
It will all be ok!
Hugs?

[cccourt1942]

YES!

[wildforwater]

thank you for your reply wildforwater...I have seen a neurologist - about a year or so ago and had the nerve conduction tests...negative...so please let me know what you find out for yourself...I feel like a hypochondriac but yet I know I am not...it just seems one thing after another.  And then to have a pretty good summer (yeah - thank you god!) and now to be feeling lousy again...just frustrating.  Thanks for listening.  Wishing you luck on your appt.

A lot can change in a year.  You are anything but a hypochondriac.  If the symptoms have not lessoned by now, I would suggest getting in to see your Rheumy in the near future.  I will let you know how my appointment goes this week and you do the same.  Hopefully, we will both get some answers.

Maria