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Thank you all so much for sharing your clumsy, balance episodes. My doctor has never addressed this topic and I have been sick for 13 years. I have a fear of falling down the stairs to the point that we added onto our home so I can live on one floor. It has helped my fatigue and joints. I know that not everyone can do this- but I feel affirmed now with the need to do that. Yard work was very hard this season.I sit on a stool that looks like a tractor seat. It save me from kneeling and trying to get back up. Still the heat and work sets me back a few days.


Siouxzie ( I see there are a lot of Susies on this site )

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Hi Siouxzie,


Welcome to these forums!


I'm sorry to hear that you've been unwell for the last 13 years. Have you been diagnosed with Scleroderma? It certainly can cause vestibular balance disorders from which thankfully I've never suffered, but I know some of our other members have done. I've included a link to Brain (Cerebral) Involvement in Scleroderma which I hope you'll find interesting and informative.


Do keep posting and let us get to know you.


Kind regards,

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I have a good friend who does not have sclero and has had two bad falls this past year, one where she broke her glasses and had to cut a vacation short, another where she just went down. She claims it's from looking around and not paying attention and has told me if she wasn't holding onto her husband's arm she would have gone down a lot more. Her mother had scleroderma but she is adopted and has no other symptoms so she just needs to pay attention.


I am a looking at the ground walker and always have been. When I was a runner I was told to look straight ahead at the horizon and the run would be better. Sorry, I don't trust the ground or pavement and look down. There is a whole theory on your personality based on where you look when you walk.


I stumble and have to hold on to things. I drop things all the time, especially pills. But I am one of these people that if I fall I GET UP really fast so that no one sees me (or as fast as one can with all the skin hardening.) Then, days later, I find bruises and bumps and think, where did I get that?


I'll read the links and see.



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This morning I dropped a container of calamata olives all over the shelves of the refrigerator and floor. This is because of my bad hands not being able to put the lid on right, and my clumsiness putting the container on the shelf. I yelled words so loud that you are not allowed to put on this forum that I am surprised you all didn't hear them. Not only did I have a mess of olives and juice all over the place but these were REALLY good olives from a specialty Greek store in New York City. Normally, if something falls on the floor it goes in the garbage because I am so concerned about bacteria but the floor was clean and I opted for the 5 second rule and put them all back.


The good news is due to my skin softening I was able to crawl under the kitchen table to get a couple of stray ones and could bend down to wipe the mess up instead of having to call for help!



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That's right Mio, don't forget the good bits. Your skin is softening so you can bend more easily, my Raynauds is absent but that's because I am getting so old!!!! I don't much like remembering I am getting old but I do enjoy feeling warmer for the first time in 40 or more years.


In the same vein, we decided to sell our house by the sea because it has stairs which I am finding exhausting. That is sad because our situation is fabulous, but because it is so great here we sold easily and at an excellent price. In return we have found a lovely one level home right by the water again. So sad to go but exciting to anticipate a lovely new home and I can't wait to be able to go to the laundry room without going down and up the stairs.


So this is a silver lining day

Hugs and best wishes

Blow that headache away



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I know what you mean about stairs. We have 5 levels!!!. There are broken into stages but the laundry is on the bottom. For years my husband did it all but now I am able to carry a small load up and down. Who ever thought one would get excited about something like that!


And another milestone last night!!! I was able to thread a needle and do a small repair on a blouse. I know it sounds so minor, but those of you here will understand.


Best wishes on your move, the reason we stay here is the water, too.



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Hi everyone,


This is my very first post here - I was browsing around and this thread caught my attention.


I'm 44 and was diagnosed with Scleroderma in 2000. I'm very unsteady on my feet - I need help when I go out most of the time, otherwise I've been using a 4 pronged cane. I'm afraid of falling and getting hurt, and as a result I'm pretty much housebound and agoraphobic. My fiance does the grocery shopping , and he calls me every night before he leaves work to see if I need anything. I do most of my other shopping online - gifts, clothing etc.


I'm in the process of finding a new neurologist because I don't like the one I've been seeing. I will bring the information I found here and raise the possibility of this with my new neurologist.


It's nice to find this site, and I look forward to sharing and receiving info with others with similar issues.

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Welcome Jeannie,


So nice that you have found us and decided to post. Yes lots of us here are housebound either some or all of the time. For all sorts of reasons too.


Being wobbly is probably partly age and partly other causes which affect us perhaps more than other people. I have had periods of instability for many years some of it caused by inner ear problems which can affect balance and cause vertigo and also because I have had a tiny stroke in the balance area of my brain. There is nothing anybody can do about either cause so the Neurologist says but I find it easier to live with just knowing what the problem is.


Best wishes


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This topic is interesting. I have been more klutzy than usual, yet I still have good balance overall.


I ride a unicycle and I've had it out a couple times this year already. I did get a new helmet for bike riding since I don't feel as confident as I used to with my balance. I think it is more age related. I'm worried that if I fall I will do damage. I've been riding the unicycle since I was 16. That makes it 33 years of riding this summer. I would like to learn how to stay in one place and go backwards, but I'm a little nervous of falls.


Ears play a big part of balance, and I have continual ringing in my left ear, which started about the same time everything else did with my UCTD. I haven't had the vestibular dizziness that my husband has had where he couldn't even walk without getting ill.


I am dropping more things, and I don't know if that is not paying attention, or if my fingers are getting stiffer and smoother.


My physical therapist years ago said there are exercizes to help with inner ear issues with dizziness, and chiropractors usually know those too.



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Hi Jeannie,


A warm welcome to these forums!


I'm sorry to hear that you've had balance issues; it's a horrible feeling if you think that you're going to fall and I think it's very easy to soon lose your confidence because of it.


I hope that you get more help and advice from your new neurologist; we do also recommend that if possible our members consult a Scleroderma specialist as sadly many rheumatologists do not have the expertise and knowledge to deal with this complex disease.


Now that you've found our forums and joined our community, I'm looking forward to reading more of your posts and getting to know you.


Kind regards,

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Hi, my "fellow Siouxzie"!! Yes, I'm a Susie too! lol


I am SO glad you brought this thread up, since it dated back to 2007!


It was nothing that I could apply (then), ,as I wasn't troubled by the symptoms I now experience.

For several months now, I have had SOB, light-headedness, dizziness, trouble with my balance,

Blood pressure issues, etc...so I made an appointment and saw an ENT, who put me on diuretics,

which really helped. However, when I was given the hearing test, I was found to have GREAT hearing

and no issues, in THAT regard.

Sadly though, my falling continues, though I'm VERY careful and have been fortunate NOT to break any bones,

yet DID sprain my foot, some weeks ago.

In the meantime, I had noticed some symptoms and told my rheumatologist, who told me I had "poor circulation" (feet

were blue

and I was getting "hard bumps" on my toes, so she prescribed a second BP medication, as the other BP med I

was taking the highest dose. With adding that medication, she asked if I would mind seeing a PA (physician's

assistant), so I did, in mid-May, so she could see how I was doing on that medication. While there, I asked if she

look up the results of the echocardiogram I was given in mid March; she then told me that my Pulmonary Hypertension

hadn't changed too much, as a matter of fact, it had gotten a bit "better". That diagnosis was news to me! I told her I

was not informed that I even HAD PH! Then I told her about the above that I had been experiencing and that would explain

those symptoms!

An aside...had I known of the diagnossis of PH, I likely would never have gone to the ENT! This "puzzle" (for me) has now

come together so I no longer question WHY said symptoms and falls, etc. Though my PH has been diagnosed as "mild", I

wonder why my symptoms are so pronounced....

Anyway, I made an appointment to see a pulmonologist; originally, I wasn't going to get in until mid July, but received a call

last week letting me know there had been a cancellation and my appointment was being changed to June 8th, which is this

next Thursday! I am THRILLED to be seeing the doctor I am, because he is the "go to doctor" for PH!!! I saw him a few years ago

and he scheduled/performed the right-heart cath on me!

A few hours before I see him, I'm to have a chest xray and then a PFT. I will post after about the appointment.

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Hello Jeannie


Welcome to the forums and sorry I am so late in doing so.


Housebound? That's me! I use an assisted wheelchair out of the house and need someone to push is so I can't go out without anyone else. I can't use canes, crutches, or a self propelled wheelchair because of sclerodactyly and fatigue. For 5 years I have spent most of that time inside my own home on my own. Thank goodness for forums like these!


Have you arranged a neurology appointment and are you under the care of a scleroderma expert?


Take care and keep posting.

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Thanks as always for this topic. I thought it was just perhaps stiffness but I have felt very wobbly the past couple of years and am definitely in the eyes to the ground category. Thank goodness I have a one level house - but it's on a hill. well, more precisely lots of hills. But I do some walking, eyes down, and hope no one thinks I'm not looking at them and saying good morning because I'm grouchy.

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