Balance Issues

[Ncpoet]

Has anyone had balance problems? I woke up four weeks ago unable to walk without staggering. Head feels funny but not dizzy. Saw doctors and several tests. No answers as yet. With Sjogren’s, I don’t always know if new symptoms come from that or something else.

[Mckesa]

Yes, my balance stinks! I also have been having dizziness and the same head pressure I get with Sjogrens but worse. It's hard to explain but I feel off. I know what you mean about it being hard to tell what is a Sjogren symptom or something else, and whether to live with it or get it checked out.

[Ncpoet in reply to Mckesa]

I try to explain that my head doesn’t feel right, but doctors call it dizziness. I explain it does not feel like dizziness. You said it right. My head just feels off.

[Mckesa in reply to Mckesa]

Update - I have smelled gas near my fireplace since Christmas but when gas company came in March everything was fine. Gas smell much stronger in last month and dizziness so much worse. Gas company came out and there was a gas leak in fireplace. A valve was malfunctioning and then finally failed. I have likely been living with this since Christmas. Dizziness a little better but not gone. Also the gas worker said mercaptine additive make gas smell is irritating to the eyes, which may be why my eyes have been so much worse. ?

[Ncpoet in reply to Mckesa]

Oh my, that was scary. Glad problem taken care of. Let me know how the dizziness goes.

[smileyface1 in reply to Mckesa]

I'm so glad you found out it was a gas leak, so you can take care of that. Hope you feel better soon.

[jfran44]

Yes! I have had balance issues occasionally. Yes it is hard to tell any symptoms from sjogren or something else. I usually just chalk it up to old age or something else. I need to pay more attention to symptoms. I am now doing that since taking part in the research project.

[SusieW2]

Check your medications and see if any have dizziness as side effects. My balance is bad but yoga balance exercises help somewhat. I also try to keep my sinuses clear with essential oils. It helps with that unbalanced, funny head feeling. Don't know if it helps the dizziness.

[Ncpoet]

My medicine hasn’t changed in years. The balance problems recent. So I think something else is going on. My sinuses and ears are clear right now. That is why it is such a mystery to me.

[Fizzy256 in reply to Ncpoet]

I go through the same thing- and so do both of my kids. I sought help for it and physical therapy plus a focus on staying hydrated has helped a lot. I still get the funny feeling of pressure/tingling in my head, and balance is tough but it's getting pretty good. It's difficult to adjust to the symptoms as they pop up. Good on ya for seeking help.

[smileyface1 in reply to Fizzy256]

Do you think your medicine could be causing it?

[Hidden]

I have this too for quite a while and also periodically get bad ear pain and have constant tinnitus. Have had full vestibular testing but nothing showed so the balance expert ENT dumped me having told me that the disorientation is probably due to MRI recorded small vessel disease damage in brain (white matter).

I'm under neurology for small fibre neuropathy affecting me everywhere. When I told her my balance is off and I seem to have tremors and weird vibrations when fatigue is bad of when I'm sickening for flu or UTI - she said this was functional neurological disorder (FND) overlaying my Sjogrens. However I'm sure she's wrong because it can't be a coincidence many post on a large closed FB SS community that they too have dodgy balance, tinnitus, vibrations and twitches. So I conclude that these neurologists and others just don't know much about the many neurological manifestations of Sjogrens - that is all.

Even a poll I received today from this new HU community didn't have any boxes about neuropathy or other neuro or vestibular issues so many of us seem to face

[Ncpoet in reply to Hidden]

I do have peripheral neuropathy so my neurologist suggested trying PT since nothing showed up on MRI. My therapist asked if I had ever hit my head which I had-total of three concussions over time. He had me lay on table with head off (someone else supported it) while I turned head and looked at my eyes. Said he saw something that indicated a crystal had left its location in ear and that was causing some balance problems. He moved my head and said that should help and it did. Did some other exercises and really helped. At least he knew what he was doing and the PT helped find some answers when other tests did not. He said balance issues caused by either eyes, ears , or feet issues. Didn’t explain this very well but ask for PT and see if it helps you as well.

[Hidden in reply to Ncpoet]

Thanks - yes I’m under a PT already and have also had similar method-confirm that not vestibular as yours was. The main thing I want to know us why PN of Sjögren’s gets so little attention as it’s very debilitating? All I see is arthralgia eg Fibromyalgia which it’s been confirmed is probably actually small fibre neuropathy?

[Ncpoet]

I agree that area due to Sjogren’s not paid much attention.

[Hidden]

I frequently have to stop and grab something to regain my balance. I have actually fallen a couple of times which scares me as I have Osteoporosis.

[Ncpoet in reply to Hidden]

I also have osteoporosis and don’t know how I managed not to break something during my two falls this month.

[Hidden in reply to Ncpoet]

😔😫😢

[Bodega1939]

Yes, definite problem with balance. And sometimes I get going in a sort of turn/circle and can't break the motion so I "swirl" into total confusion and inability to sort it out and must then either lean into something or fall. Horrible.

I am so glad I found the Sjogren's group. I was diagnosed with Sjorgren's probably 40 or 50 years ago and told there was nothing to be done for it but to continue hydrating my eyes. Of course we all know the Restasis drops work quite well but not completely. My lips get so dry they crack. By the way, the the whirling-swirling has been attributed to my SPMS but it seems as I fall apart everything is being attributed to something else...but there it is, in black and white and often purple if I do fall. Sigh.

[Ncpoet]

You described my balance issues perfectly. Since I also have Sjogren’s related sleep problems, I have often wondered if the lack of sleep is what contributes to balance problems.