It Will Pass (mostly)

Avrille69, today I'm doing pretty well. My feet had been an ongoing problem. I always thought if I could just get the podiatrist to stop cutting the calluses off, and if I could just walk barefoot, they'd get better. Well, I haven't seen the podiatrist for 4 months, I've been going barefoot in the house and wearing sandals outside and my feet are flattening back out, the toes are straightening out, and I have no calluses like I did. As soon as I didn't have continual open sores caused by the podiatrist, I signed up for water aerobics. I do that 4 times a week for an hour. On the fifth day I have a chair pilates class. Both of these have helped my strength and balance, and also put me in a good state of mind. I still have shoulder problems, but my arms are strong. I can pick a 50 pound bag of chicken feed off the ground and carry it. But it takes two hands and some maneuvering to put my coffee cup on the top shelf of the cupboard. The muscles that don't work are quite specific. I still have peripheral neuropathy, but being barefoot I can actually feel some things - like when I step on a Lego or a piece of cat food. I think I just learned to accommodate for being clumsy. I avoid walking down hills (stairs with a rail are fine, though), and I watch my feet on uneven ground. My autonomic neuropathy has not gotten worse, but not better, either. I don't sweat, so I might have trouble exercising in the heat. But it doesn't matter when I'm in the pool. I really have to pay attention to bathroom issues because I don't want to suddenly need to use the toilet when I'm too far away from one. If I need to be out and about in the morning, I don't eat breakfast until I'm back home. If I need to be somewhere in the afternoon or evening, I try to be sure business is taken care of before I go out. That works pretty well. The main thing that's still an inconvenience is my blood pressure. Some mornings it's quite low, like 60/38. I can't go anywhere or do much until it comes up. I'd say this happens about once a month. It is never much over 95/65 at home, but I can always count on it to be sky high at the doctor's office, 180/85. That automatically triggers Kaiser's "fix it" program and I get told to check in at the blood pressure station. I have stopped doing that because they NEVER look at my log book and they NEVER believe what I tell them. My diabetes is still well under control, my last A1C was 5.5, which is as high as it's ever been in 5 years. I find I'm happy most all the time, and I know a lot of diabetics are not. Being in charge of my diet and being able to exercise has given me enough self-confidence to not feel like such a victim of the medical system. Thank you so much for asking about me, I really hope the others who have commented here are doing better these days, too.

Thank you Cosumne, for posting your story. I would love to know how you are doing today :)

My boyfriend have Diabetic Amyotrophy for eight months now and can't walk he is gettng physical therapy at home three times per a week.

Currently he is also having diffculty urinate and unable to have a bowel movement.

Does anyone have this problem with the Diabetic Amyotrophy?

Thanks!!

Captain

I'm so sorry for your brother. I had absolutely no pain (except mental anguish) when my amyotrophy was active. Is your brother diabetic? You are correct, most doctors have never heard of it and it's difficult to get anyone but a neurologist to deal with it. I don't have a clue if it will help with the pain, but using the little pedal thing for an hour or so a day helped keep my legs from just disappearing entirely, and eventually restored some muscle tone. I think it also helps to get your blood sugar under control - again, sorry, that's the same thing all doctors parrot without understanding what that entails. I think the main thing to tell your brother is this is (in my limited experience) a transitory condition. You might also check out whether it's really related to diabetes or to some other autoimmune condition that can be treated. They tend to shrug everything off as a result of diabetes and I've found that quite often diabetes is just another result of the autoimmune disease, not the cause. They told me I "must have had" uncontrolled high blood sugar for 20 years to cause my diabetic amyotrophy. This is not true, not even close to true. Also, I've joined TuDiabetes, an online site for diabetics, and discovered that there are LOTS of T1 diabetics who have had higher blood sugar than mine most of their lives and have never had complications. Please look into other autoimmune conditions, don't just think your brother has a problem because of diabetes. The pain medication is dealing with the effect of his problems, not the cause, and can cause other problems on its own.

my brother has severe amyotrophy affecting his hips & legs. He stays in horrible pain, wears Fentanyl Pain Patch plus takes Dilaudid often for the break through pain. He first noticed pain in him in mid August '2011 and in the last month the pain has escalated to unbearable heights. How long does the bad BAD pain last, does it EVER ease up at all? No one seems to know anything about diabetic amyotrophy, we need help.

I also have peripheral neuropathy so I know what you're feeling with that. I went out and got one of those peddle thingys and fo rhte last three days I've been working on it. I've lost about ten inches in one leg and maybe 8 in the other so I'm offically " chicken legs" and it scares the hell out of me.



I'm praying that this peddle thing help and I can get at least some leg and butt back. My butt hurts and it's getting to the point where I can barely sit down OUCH! LOL.



Agaiin thanks for the information. I hope you're doing well.



Peace, Kevin

Kevin

My nerves went so quickly, there was never any pain. I have very nasty peripheral neuropathy, though, and some autonomic neuropathy as well. I was ready to give up several times. The worst was when I could barely get out of bed. It would take me a long time to get a shoulder under myself and slowly push myself upright. I was never sure if my legs would buckle when my feet hit the floor. I couldn't drive, my son drove me to work every day and picked me up. I couldn't get disability because I was able to work! Actually that was the best place for me, it kept me busy and motivated.



When I started getting some use of my legs back, and my shoulders too - they were mush - I had hand controls installed in my car. For the first couple of months, I would go to work at odd times so I'd miss the heavy traffic, and my job is only 15 minutes away, AND they saved a parking place for me right in front of the door. I got to where I could wrestle the wheelchair in and out of the car most of the time. When I just couldn't manage, I'd just ask the first person to come along for some help. I met some really wonderful people that way.



Use your wheelchair! I love my wheelchair. I was in it for quite a while with Amyotrophic Neuropathy, and again earlier this year with Charcot. I wear gloves when I use the chair, it makes maneuvering a lot easier. The only time I've enjoyed Costco is when I shopped in my wheelchair.



My legs were a skinny mess. I measured them once a month when I started the pedal thing, and it kept me going because I could see improvement. The worst thing was losing all the fat from the bottom of my butt, and then having to sit on it for hours because I couldn't walk. Ouch! My feet contracted, too, from lack of use. This hasn't improved much because I've had ongoing problems with my feet and my podiatrist always starts with, "Stay off your feet for a month."



Because of my foot problems, I'm told to wear prescription diabetic shoes. I got my first pair when my legs were still very weak. They were so big and heavy, I didn't have enough strength to pick my feet off the floor. Sometimes I can't believe the stupid things doctors expect us to do. I really think the best thing I could do for my feet right now is leave the shoes in the closet and walk around barefoot. They need sensory contact. Or maybe they need someone to massage them 3 or 4 times a day. I could go for that.



I'll be excited to hear how you're doing.



Jan

Tried to reply earier but guess it didn't go through. Yes I was diagnosed about three years ago and I went downhill really fast. I can walk but only a very short distance, sometimes a few feet sometimes not at all but I continue to try.



After reading your post I measured my legs and my calves are larger than my thighs. I think for the most part I've been in denial, mostly out of pride, I think. For the first couple of years the pain was almost too much to take but it seems as if that it's getting better. Maybe it's because all my nerves have died at this point? I'm not really sure.



Weight isn't a problem but for the life of me I can't seem to get my readings down despite doing 300 shots a month. To be truthful before reading your post I was losing all hope of a "normal" life. I was working two full time jobs when I started to get sick. My wife has MS and if SSD was granted I don't know what would've happened.



The doctors had me on so many meds a few years back I thought I'd go crazy but I stopped all of it after an incident and just started dealing with it. I'm not a quitter but I swear what can one do as they watch themselves waste away while the doctors say nothing can be done.



I bought a fancy overprised wheelchair last year but pride has kept me from using it. Maybe that's a good thing. I'm going to start with the bike thing and see what happens but at least now I have hope and that means a lot!



Thanks so much for taking the time to answer.



Peace, Kevin

Hi Pasce123. Have you been diagnosed with diabetic amyotrophic neuropathy? I didn't get any help from doctors, either, it was a palliative care nurse (they thought I was going to die from it) who demanded physical therapy for me. I was lucky to get a physical therapist who recognized that I was willing to work hard and went out of her way to figure out what would work. At first, the only thing I could do was isometrics. I would lie in bed and make the muscles in my calves and legs tighten and release. Over and over again. It took about a month before I was able to sit in a kitchen chair and pedal a little bicycle thing, not a stationary bike - I would have fallen off one of those - just a little machine with bike-like pedals. It had a speedometer and mileage meter. I would sit and read and pedal for an hour at a time. At first my goal was 1 mile. In 4 months I was doing 20 miles.



Muscles are only half the problem. Nerves are the other half, and it takes longer for them to respond, if at all. I still have severe peripheral neuropathy and my gait is affected by it, but I can WALK! Without a cane or crutches.



So, yes, you can be helped by exercise. If you can't see a PT, just do it yourself. Set some goals and stick to them. Start out easy. If you're in as bad shape as I was, it's hard to get out of a chair (I bought risers for all my furniture), to get off the toilet (bought a riser for that, too), or even turn over in bed.



Hang in there!

Hi, it sounds as if I wrote this post. So with physical therapy we can rebuild the muscle? I was told by my doctor that it wouldn't help me. Maybe I need a new doctor ...