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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Because of the hours I put in working outside all spring and summer, I find it much easier to drink enough water. I always have a water bottle in one of the pockets in my tool belt, and usually a second one sitting somewhere in the shade.
Until a few years ago, weight was never a worry for me. But by 2017, I'd gradually added enough pounds that I had worked my way up from a 33" waist to a tight 36". When I was weighed at the doctor's office, I was 208 lbs. So, I stopped picking up cookies and candy all day and started taking smaller portions. I refused to buy 38" pants! After six months, I was back down to 155 lbs, which is the weight I'm most comfortable with, and a size 32. That's what I weighed in college. I was really happy to have gotten my gmi back, and now I'm trying to maintain it. I donated all of the clothes that were too big - doing that reinforced my commitment to maintain a healthy weight - and still had plenty of clothes that I'd not given away.
I'm not Mormon, but I drink as little caffeine as I can. I like my morning cup of coffee, and my wife makes decaffeinated iced tea in the summer. The speech therapist told me that I should avoid carbonated beverages and never to drink from a straw. These and other things make my swallowing issues less problematic. The neurologist and other doctors have said that the esophageal dysmotility, diplopia, balance challenges, decreased muscle tone and a few other things "could be" attributed to autonomic neuropathy. None of them will say that there's a definitive connection.
@sprightly I experience varying levels of pain throughout the day. It hurts to walk very much, hurts more standing still and really hurts when I'm lying down or sitting in my recliner with my feet up.
Using a pillow under my feet in my recliner doesn't help. In bed, I have 2 pillows under my head, one under my feet and one between my knees. I sleep on my side, and if my knees touch it makes my feet hurt, hence the pillow. Sometimes I can sleep with a pillow under my feet, but often that's painful, so I hang my feet off the pillow. If my feet touch each other, I have pain at the point of contact, and contact with the sheets and blankets is painful, as well, so I have a blanket lifter for my feet. Many people have pain relief when their feet are on a pillow. If I'm standing, waiting for the water to get hot in my shower, I have a memory foam cushion, and standing in the shower, I wear flip flops.
We certainly do look for and experiment with a lot of things in this neuropathy journey. We try to pay attention to what helps and to what makes it worse. If you read some of the posts in the discussion that @johnbishop referenced, you'll probably find a bunch of ways people find relief.
Best wishes.
Jim
Replies to "@avmcbellar @fiesty76 Because of the hours I put in working outside all spring and summer, I..."
Hi Jim @jimhd, I certainly can understand what you went through with your weight gain. My husband is still dealing with his. He is working on it slowly with another 20lb weight loss goal to go. Sorry to hear of all your troubles but glad you keep on trying to find resolution. I know NOT using a straw helps with throat or swallowing issues. I noticed I have digestive issues too where food comes back up easier into my mouth plus I get the burning sensation in my stomach. I figured it is due to the hydrochloric acid. For me, eating small meals and alkaline foods to counteract the high acidic foods helps me a lot. I stay away from coffee not only for the caffeine but also for its high acidity. I love coffee too to the point of trying decaf but its high acidity still bothered me. It was not worth it. I rather not deal with the burning and upset stomach. My burning sensation has decreased significantly where I am pain free for a few days. I know which foods to stay away from now. I hope you can find relief. Maybe eating small more frequent meals will help.
As for my neuropathy, the pain does feel slightly less. Pillows do not help. I get the burning and ice cold feeling on my left limbs.. Since I have neuropathy on one side of my body, I can feel the different temperatures....boy is my brain messed up with its messages! It is amazing all the responsibilities our nerves have. Because of a lack of a few nerves, I have many deficits....balance, walking, vision, eating, energy. All those have become more difficult. We take so much for granted.
I also get a lot of “maybe, I don’t know” from doctors. There are so many doctors out there but many don’t know. I have lost confidence in many that is why it is best to be your own advocate. Nothing wrong in researching. I am proud of everyone, including you Jim, for using the Mayo Clinic discussion groups for information to provide better care for themselves. Keep on trying and keep on educating us. Best wishes.
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@jimhd, Like you, I always have water with me while out in my yard and on walks so drinking enough is never an issue for me either. I also refrain from carbonated drinks but hadn't heard the caution of not drinking from a straw before of problems you have swallowing.
Congratulations on bringing your weight back to where you feel most comfortable. Like you, with weight fluctuations...mine due to wt loss vs gain...I have held on to my better weight sized slacks. Have to wear a belt now to "hold up my britches" but am counting on an eventual weight gain to put me back into some of my "waiting favorites". Smiles
Sleep must be a real issue with your neuropathy pain. How true that we try all sorts of experiements to find more comfort or control. Simply knowing that we are not alone on these health journeys makes whatever the primary malady much more doable.