Yes, absolutely. I get the same thing. I keep a folding cane in my purse just in case my legs really do give out on me one day. I've no idea why it happens but I get it too.
Take care!

I get that too not sure if its the sjs or due to other connective tissue disease .I get really bad cramps in my calf and ankles too . My thigh muscles feel like they are weak and give way .I get scared of falling at times . Hope you feel better soon

My thighs ache & feel very weak. Just that constant tired feeling.It can happen at any time but always in the evening.

I have problems with this type of weakness when my potassium levels drop low. I also have it in my arms as well.

I have this symptom. I have it in my arms and legs, all over really. Its more generalized weakness. Some things can make it worse. Plaquenil and steroids tend to cause weakness as well.

It is my arms and legs both. My thighs get very weak and it feels like I have weights attached to my legs. I did have to use a cane for a while and a wheel chair when going out, but then it got better and I got the use back. My arms give me the most trouble when trying to blow dry my hair. I now sit on the bed and tip my body over so I don't have to raise my arms over my head.It is easier for me that way. Hope it gets better for you! :)

Thanks for that info Alison ,I am on plaquenil and also last week had a steroid injection for the first time which may have done it then didn't even link them . I thought the steroid injection would fix all my joints but it sorted my ankles and back but my 1 wrist is still painful and weak .

If the weakness isn't caused by inflammation, steroids will help help this problem. It helps me with fatigue, but not weakness. I noticed an increase in it when my doctor put me on low dose steroids last week. But overall I still feel better. Sometimes if tests are normal, the weak and heavy feeling can be caused by fibromyalgia as well.

I mean that the steroids will NOT help if your weakness is not due to inflammation.

Be sure and rule out a possible toxic reaction to Plaquenil that can weaken your thigh muscles to the point you can't climb a flight of stairs. I had to stop taking Plaquenil in 2005 because of this reaction. Fortunately it went away after I switched to methotrexate.

Also want to make sure that you have good leg circulation. If there is a question, they can do an ultrasound to check for any partial blockages.

There are meds that help with circulation if there is no obstruction. I know several folks who have had great results, although I can't actually remember the name of the medication right now.

I get weak legs, too. But, I also have a connective tissue disease so it could be in combination with the Sjogren's. My rheumy gave me some easy exercises to do that will hopefully build some support using other muscles.

I hope you find some answers - quickly!!

Debbie

Thanks to Debbie, Allesone79, DryRDH and several others of you who responded to my "weak leg" question. I'm not near the point of falling, just weak and tired....and yes, I do think my arms are similar. I've taken Plaquenil for a year now with no problem. Would this new symptom be from that medication after having been on it for so long? I have thought about this possibly being more of a fibromyalsia issue, but have never been dx with that. Many similar symtoms.....a lot of cross-over. Who needs a name for all this crazy auto-immune stuff? Let's just get a treatment (better yet, a CURE) that works!!

My legs get weak, also. To the point to where I fall, especailly when I'm tired. My Rheum. gave me excerises to strengthen the muscles, but I also have nerve damage. Ask your rhuem. about being tested for pheripheral neurpathy maybe he or she can send you to a neuro. who is familiar with treating Sjogren's patients with neurpathy.

I get this after being sick with a cold or the flu. It usually takes a while to go away (weeks)

I get this as well. Especially in the evening. It is hard to climb stairs & I can't stand my small dog on my lap.
My arms are the same when I have to raise them above my head.
I go to a hydrotherapy pool to keep my muscles strong around my knees as I also have osteoarthritis in them.