I get those radical swings in BP too. It has been better lately, but I used to get them something awful....and my pulse would be sitting at 42...and the BP at 203/110....then a week later 70/40....then 120/80 for weeks at a time. BP can sometimes be highest at night in people with autonomic problems...my doc wanted me to sleep with the head of bed elevated....but I kept ending up at the bottom of the bed...I slid down there.

Lately it has been more controlled, and I take very little medication. The autonomic nervous system has a way of making this all very confusing...and potentially dangerous.

My doc agreed that all BP medication had to be short acting, so if my BP sunk it was not two days before the medication to keep it low wore off....I also have fludrocortisone to bring it up. I am lucky enough now not to take either....but I have an EPS coming up in January, so I will see what that shows, and I may end up on something for an arrhythmia...then again, maybe not.

Thank goodness you took that reading....your BP can be high and you not even know it! Keep us posted.

Back to the topic---I too have problems with walking and problems with legs below the knee and hands below the elbow (no I do not walk on my hands, not anymore, nor not yet again)....I can walk, but I don't feel much, so their are times, when I stand up, I have to wait until there is some feeling before I walk or I will crumple. Once I get enough feeling...then I can walk around OK...but I never get total feeling...there is always 'something missing'. It is hard to walk around with that feeling and I don't trust myself, but I carry a cell phone and go anyway...I figure if I go down, some nice person will help me...I hope!!...or some creep will steal my purse.

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

go hand-in-hand with many neuro diseases/conditions. There is a continuous loss of strength when you try to 'rest', in attempts to keep the pain from getting worse and just having the strength to do very simple things....like eating, going to the bathroom and getting dressed.
I have a CIDP -often referred to as a 'chronic' form of GBS. For the first month after my 'onset' I too had difficulty moving around with those simple 'things'. Diagnosis IS tricky with any neuro issue - AND even with a diagnosis other than 'idiopathic' [idiotic, to me!] only the symptoms can be treated, either thru meds or other therapies -the alternatives are limited.
That said, by my own experiences, [I USED to be very physically active] I knew I had been losing muscle tone and strength over time...SOO I asked for and resquested seriously physical therapy....I learned that neuro docs, and many docs other than orthopedic ones...don't even think of it! I have had four 'rounds' of PT since my 'onset' and I have learned that: a] you have to find a therapist who understands the needs of a person with such debilitating diseases - one who understands you simply cannot go all-out doing a certain task and not get additional damage; b] someone who understands folks who have had stroke nerve-muscle losses, cancer-same, and possibly/probably folks who have MS...
You can and do lose muscle strength and tone....as time goes by-IF you do nothing you WILL lose more reflex actions...The consequences of doing nothing add up to lots worse consequences...such as further loss of balance, increased falls [thus breaks-I'm guilty to a degree] and greater mobility limits.
BE SURE TO ASK YOUR DOC as he writes out PT orders to include training and tools to do things at home...many exercises and 'tasks', while they seem silly at first, can and do help you build up in little bits the strength and flexibility to be more stable. Harder is to keep at it once the PT ends..You HAVE to keep at it tho? As exercise and movement helps keep the circulation going and allows you to plain old get around.
About the 'little bits' philosophy? I've found that IF I have to do three rounds of 10-20 reps of anythng I go double-dead-dog numb! [Overdoing it is NOT on the PN menu!] But, if I do 4-8 rounds of five to ten reps over the course of a day at home...well IT adds up and eventually I can do the big reps -just takes time and building. It can happen, it takes caution and it is worth it!
A couple of sites worth visiting for exercises are:
http://www.acefitness.org/getfit/freeexercise.aspx#13
http://www.fairview.org/healthlibrar.../sma_index.htm
I prefer the graphics in the second.
All you need is a hand-weight or two, therabands [lite and medium strength] and maybe some other tools....BUT you need a therapist to teach you how to use them RIGHT! Otherwise you could inadvertently do yourself some wrong things in trying to help yourself.
I hope these help you in some way or form...and that you will seek and get PT.
I can only say that because I went and got the PT, I am still mobile on my own two feet [with a cane] and can drive [tho very cautiously] and get around [tho not for long periods] on my own steam. I do believe that had I not gotten the PT when I had-I would be either walker or wheelchair dependent. You asked, because your own mind/body was probably telling you the same 'things' mine was about all that has/is happened/ing to me. Ask! Worse that can happen is a 'no'. So you ask another of your many docs who take care of you! Unless you are in a 'managed' care type of insurance plan...most docs won't decline such a request-it's no skin off their noses or backs [so to speak]. Besides, if you can get out to a PT place, heck! You get out of the house for a legit purpose! And you get to meet other folks who help you keep your own issues/conditions in perspective.
's and hope! - j

Just want to add my two cents to the mobility topic. Most neuros I’ve seen believe my PN resulted from cancer chemo. (I’m still on a quest to be seen @ Mayo, but that’s another story). When PN first struck, I was unable to stand up at all. My legs were painful and weak. I had to use a wheelchair for a few months. After the chemo stopped I progressed to using a cane around the house and outdoors.

But one night disaster struck…my left leg just folded out from under me and I broke my ankle. That was the beginning of much disability and depression. I had surgery & spent 12 weeks in PT which got me sort of mobile. I say “sort of” because I got paranoid about falling again and fracturing some other body part. Now I am rarely without a walker, at home & outdoors. I have given up driving because my numb feet can’t feel the pedals and my flexibility and reflexes are diminished.

Here’s the mobility loss I’ve experienced over the 8 years from the onset of PN: my leg weakness has progressed and loss of balance has worsened. My neuro has prescribed PT but it’s a major effort for me to leave the house, especially in the winter. I have a visiting nurse who comes by twice a month and she’s looking into getting me PT service at home. Two years ago I was super motivated & went to Sloan Kettering PT and that actually seemed to help both walking & balance but the therapist I really liked left the job and that ended PT for me. I also tried arthritic water exercise one summer and it was great. I may try it again in 2008.

I’m so glad you posted here, Jamie. I’ve been wanting to ask the very same question you did and I thank you for doing so. I think PT will improve your leg weakness and as mentioned by others here, make sure you find a therapist who’s experienced in dealing with PN. Also, I found that the water exercise program was kinder on my joints and balance so you might look into that as an easy way to get started on PT.

Cyclelops:

Thanks for explaining the whole gastroparesis thing. I had no idea it was so complicated and involved the whole digestive tract.

My god, the stuff many of you have to endure. I shall never complain about anything ever again.

It boggles the mind what people have gone through and yet, still have a sense of humor.

Take care,

Melody