Sorry to hear you are dealing with all of that... as others have said - you are not alone on mobility.... I think all of us - with different types and degrees of neuropathy have experienced some sort of mobility issues... and use what techniques and assistive devices necessary to keep moving as much as possible...

I have an auto-immune neruopathy (CIDP) and automic - which has essentially paralyzed my stomach so I know part of the reason I've lost strength is I'm not able to eat like I should or want to - live on liquid supplements only... However, some days are better then others in regards to walking and strength - and I've had to learn to listen to my body as to whats needed to get around... if I overdo it - and I do - then I can expect for pay for the next couple days with extreme fatique, shaking, etc... I try to hang oh the walls at home - or use cane or walker... but in public my balance and strength are so compromised I use a wheelchair - then I do not have to worry about falling (I've had one bad fall out of the shower when I let go of shower support and cracked my jaw, etc, last year).., I too always have a phone on me - just to go the "ladies room" at home etc....

PT and yoga etc. helps many - and I think part if its going to work for you is finding someone who is knowlegeable with your diseases. I've had PT several times and just gotten weaker and the PT's frustrated - but yes, being sedentary I think does make us weaker - its a viscious circle...

Hang in there - you are not alone!

kmeb:

I have read about your stomach problems and that is why you can only take liquid supplements.

I'm just curious. What would happen if you had some scrambled eggs, or something light like Toast and apple sauce (that's what they used to give kids if they had diarrhea or some stomach thingee).

Just curious.

Melody

HI Mel

I have gastroparesis, like kmeb....if you have eggs as you suggested...they sit in your stomach for hours, you feel bloated, you might puke...and your blood pressure may take a dive. I have lived on Boost or Ensure for months at a time, at different points in time.

I am doing pretty well right now....knock on wood.

I take erythromycin before meals to make my stomach contract to get the food to go down. This happens from small fiber damage, it is what is called autonomic neuropathy. I go thru periods where all I can get down is fluids or soft....right now, I can tolerate solids, but it never lasts long, and I am back to mushy. I never know.

The other thing is, food gets stuck in the esophagus, or the bowels....if stuck in the bowels, it causes havoc with your entire autonomic system and yes, can cause even migraine like headaches, dizziness, puking, lethargy, low blood pressure, pain...ugh. kmeb can probably elaborate more if I didnt give the whole picture. Your GI system is literally the body's 'second brain'. That colon has to be kept moving!!

I know I'm off topic, but I wanted to add something to the gastroparesis discussion. One reason in favor of liquid nutrition is that you don't have to rely on gravity to digest it, so if you are too ill to be out of bed, you can lie flat without everything coming back up, so to speak. I eat solid food during part of the day, but I have to remain upright for at least three to four hours following a meal so that the food can get through my stomach via gravity since I don't have peristalsis to help me out.

I do generally have Boost first thing when I get up as nothing solid is gonna stay down until I've been awake for a few hours. My second meal is small but might contain some lean meat and pureed veggies if I'm up to it as I have plenty of time during the day to digest it. Third meal is lighter and smaller, and the fourth is usually scrambled eggs and cream of rice.

Anyway, can't remember if the original poster had digestive problems, but I will vouch they they do contribute to feelings of weakness.

fanfaire

Fanfaire, I have Barrett's Esophagus and can't lay flat on a bed anymore, I have to sleep sitting up. Would that help you with the gastroparesis? I no longer have a sphxiter muscle in my esophagus so acid just flows freely from my stomach up into my esophagus which causes terrible pain. So my GI dr. said I can no longer sleep laying down. So we bought a Tempurpedic adjustable bed and I now sleep sitting up and it's done wonders for my acid pain and digestion.

You've all been so supportive. I tried to be brief in my initial post and didn't get into a lot of detail. Since several of you asked questions, I’m providing more detail.

I'm 61 y/o female veteran and receive most of my care at a VA Medical Ctr. Up to a few years ago I felt my care was second to none, but with yearly under funding, doctor and nursing shortage and continued increasing vet enrollment, access has become a real problem. The hospital staff, bless their hearts, are so grossly over worked, but still are friendly.

Nevertheless, discoid lupus and Undifferentiated Connective tissue Disease Dx'd in 2003, and I started noticing severe walking fatigue. Since then ANA panels plus many more lab tests over and over since 2003. My ANA has been consistently positive for autoimmune antibodies at 2560:1 and I always have UTIs.

My eye Dr is treating me for macular problems and says it looks like Sjogren's and my Neurologist Dx'd mild PN (before major numbness set in) and said it looks like Sjogren's. My Rheumatologist says yes it likes like Sjogren's for all "these reasons" and listed all the reasons why, but will not make Sjogren's Dx because SSA or SSB is not positive. She knows 20-30% never show positive and primary Sjogren's is seldom positive. She thinks something else hasn't shown up yet?

Urologist tested and tested decided my sensory/muscle control nerves aren't working and I have to self-cath 4x/d to empty my bladder. This should take care of my UTIs, but since then incontinence has developed.

My Rheumatologist, Neurologist, Ophthalmologist are Non VA doctors. I have to make an appointment with a Gastroenterologist as, like my bladder, I have no internal feeling. I don’t know I have a bm coming until I sit known to pee. I think bowel incontinence is next.

I worked my way from cane to walker, scooter and now powerchair. Each time I changed I felt defeated. Still I walk with my home as much as I can. I get totally exhausted as walking just 10-20 feet. Showering (use chair) dressing is exhausting as well.

I’m afraid that I’m developing a fatalistic view because what can any of these doctors do to change the outcome? I know meds can help me live with it. I realized I talking to my peer group whom share my illnesses and feelings.

Jamie Marie