Hi Everyone,

Over the last three years, my walking ability along with strength and energy has progressively and slowly declined. I have Peripheral Neuropathy most likely as a result of Sjogren’s syndrome. I also have Discoid Lupus, Undifferentiated Connective Tissue Disease, and Raynaud’s Syndrome, always positive ANA and on and on.

Question: Has anyone else experienced lose of their ability to walk? I’m loosing upper body, arms and hands strength as well. I’m limited to a few hours each day where I can walk within my home. I just need a little validation I’m not “out there” by my self.

I last posted on the Lupus page about 8 months go.

Jamie Marie

No - Jamie Marie - your are not "out there" by yourself. There is an estimated 20 million of us with Peripheral Neuropathy so your certainly not alone. Hang in there and visit sites like this often and contribute by posting regularly. That little tid-bit of information you provide might be exactly what someone else is looking for. Also, there is no such thing as a stupid question so don't hestitate to ask questions.

We're all in this boat together so make yourself at home.

Here are a couple of other sites you might wish to join:

http://www.npnc.org/main/phpBB2/
http://www.neuropathy.org/site/PageServer?pagename=webx

HI Jamie Marie and Welcome!
I have PN and Myopathy.....which causes me to have weakening of the arms and legs. There's time when I feel weak in the legs and my hands to where it's difficult to type. Nope, I agree with Dan.....You aren't alone out there!! I hope you have a good doctor to help you through this. Happy Holidays!

I also have Sjogren's syndrome. My strength and mobility have been very slowly declining for the past decade or so, particularly in my hands where I have very little remaining grip strength. The big thing that limits my activity, though, is severe fatigue that keeps me from walking more than a city block (on a good day, two) without rest.

I use a wheelchair part time, mostly when I need to go someplace that would normally require a lot of walking. On the very rare occasions when I can shop, I have to use one of those motorized carts to get around places like Target or a grocery store. But even using those devices is tiring, and I require someone to push my wheelchair because my hands are too painful to steer myself very long.

The thing that has helped me the most has been aquacise sponsored by the Arthritis Foundation. I've been doing this for four years, and I have managed to maintain excellent range of motion even if I can't move very fast. I believe I have slowed my decline at least somewhat.

I honestly don't know if my strength and mobility problems are related to the neuropathy or not, since Sjogren's is the cause of both. But I hope it helps to know that you aren't alone.

fanfaire

Hi Jamie ,
Yes I Have many of things you have and have to use a electric wheelchair
Full time don't panic many of the people on the PN group are up and walking,
with the use of canes walkers and best of all on there own. Yes I have
trouble with say my elbows down,the hands the worse. Do you have
burning,tingling,acking,what about your feet same thing as well as your
legs. Please could you tell us more about testing and all that stuff,if
it hurts to use your keys just type a little at a time. We can't cure but
maybe we can help in small ways and there are some very smart people
on this board..

If you don't mind me cutting in I'm very concered about K she was suppose
to have dental work today and i'm very worried about her,Thank you
Jamie we are folks who care,I promise. Many Blessings to you and all Sue

I'm finding I have lessening strength of my entire body. I don't know how much of it is due to the forced lack of exercise due to all the stress fractures. Also, there is another thing that comes up. Blood pressure issues. The last two days I struggled to walk from one seat in the house to another seat. Breathlessness, couldn't get a deep breath. Just exhausted.

Then we happened to take my blood pressure. 174/118 here at home. Called the doctor and had to go to night clinic. When they took my bloodpressure there, 201/106. The doctor on duty immediately put me on blood pressure medication.

But I noticed the lack of strength and we keep a blood pressure cuff here at home. Something to consider. It was a sudden thing. Had bloodwork done today but don't know what it says yet.

Billye

wow Billye if your just going on blood pressure pills it's a very good idea
to keep a cup because you don't want it to get to low and make
you dizzy. Is you husband retired and there with you most of the time.
If not you may need one of those aleart thingy..I just had to get
one for my Aunt....Hugs Sue

I apologize, I know it hurts you to type. But keep a cup of what? Coffee or something?

I carry a cellphone in my pocket or clipped onto the waist of my pants all of the time. I even put it beside the bed so I can call my husband on the house phone. Like an intercom. We've taken my bloodpressure today, it's more normal but the pulse rate hasn't come down yet. I see my regular doctor on the 3rd of Jan and all of the testing will be in by then. My husband is here most of the time and he has a cell phone whenever he's not here. My best friend is closeby too.

thanks for caring. take care of yourself.
Billye

Oh boy I'm cracking up,or something ,but we know that!!! You were
talking about your blood pressure thing,I shortened it to cup,well
a cup of green tea would be good anyway..Ha I'm glad it's coming
down but it takes time to get that way..That got it a little highter
Sometimes it's good to take it a second time if it's high try to relax
and you may be surpised that it has gone down...You do excatly what
I do.. Please let us know what the Dr. saids..So many of us are strssed
out rightly so..Hugs to all Sue

Wow now I'm forgetting to add a sentence,the Dr. told me it took time for mine to go up she was right but it irritated me and it went up. Oh Bob is
back home with home heath care,his lungs so better. Sue again