Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@fiesty76

@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.

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@fiesty76 The reason for not using a straw is that it projects the liquid to the back of my mouth too quickly, so my swallowing process doesn't have time to prepare. The back of my tongue has uncoordinated movement, the top sphincter (valve) is slow to open, the rings that circle the inside of my esophagus fire randomly instead of in order, and then the lower esophageal sphincter doesn't open to empty the esophagus into the stomach until it's decided to cooperate. With all of those possible problems, I have to chew carefully before swallowing anything. It takes about twice as much time to eat than everyone else.

Anyway, that's the long version to answer your question about straws.

Jim

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@jimhd, Golly, Jim, you make a complicated process simple enough for even the uninformed to grasp! Thank you. Hard enough to do what comes automatically sometimes, slowing down for random misfires would be trying at best. I've always been a slow eater but not because of needing to chew. As others might suspect, I get carried away with conversations and forget to focus on the plate!! vbg

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@jimhd

@avmcbellar @fiesty76

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

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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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Hello @ladyvanilla, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would answer it in the Living with Neuropathy – Welcome to the group discussion so that you can meet other members with neuropathy and learn what experiences they have shared. You mentioned having a family member suffering with neuropathy and you are wondering what the steps are for dealing with the neuropathy. If you click the VIEW & REPLY button at the bottom of this email notification it will take you to the discussion.

I have no medical training or background but I can share my personal experiences with my diagnosis of idiopathic small fiber peripheral neuropathy. The best advice or suggestion I can offer you for your family member is to learn as much as they can about their neuropathy diagnosis and what treatments are available. Coming to Connect is a great start as many members share a common bond of the need to find something that helps with their pain and other symptoms from neuropathy.

DISCUSSIONS:
Let me start by suggesting a few other discussions that you may find helpful. You can also go to the Neuropathy Group page and see the list of all of the discussions under Neuropathy here: https://connect.mayoclinic.org/group/neuropathy/

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
Small Fiber Neuropathy lecture: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-lecture/

RESOURCES FOR NEUROPATHY INFORMATION:

Neuropathy Commons website: https://neuropathycommons.org/
NIH PN Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet
What Makes Neuropathy Flare up?: https://nervepainguide.org/neuropathy-flare-ups/
Foundation for Peripheral Neuropathy – Living with Neuropathy: https://www.foundationforpn.org/living-well/
Foundation for Peripheral Neuropathy eCatalog of PN articles:
https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf
Dr. Anne Louise Oaklander | Small Fibers, Big Pain || Radcliffe Institute: https://youtu.be/s66LvWQ5Qso

@ladyvanilla are you able to share more about the symptoms that bother your family member the most and what medications they are taking if any?

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My husband Bud has suffered a long time with neuropathy.Some nights he can not even sleep. Is there any cure or help for him?

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@budandbarbara

My husband Bud has suffered a long time with neuropathy.Some nights he can not even sleep. Is there any cure or help for him?

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Hi @budandbarbara and may I just extend a warm welcome to you on behalf of all of us who talk about "everything neuropathy" here in our own little corner of Mayo Connect. You have come to the right place to discuss your husband Bud's issues regarding neuropathy. My personal situation is that my wife has suffered from peripheral neuropathy in both feet for over 6 years now. She mostly does not have issues sleeping, but funny this comes up now as tonight she is having a terrible time trying to get to sleep. Both her burning feet and her bad migraine are conspiring to keep her from drifting off tonight. Se is laying down right this minute hoping to fall off. She and I sleep on different shifts (I'm an early person and she hates going to bed early) so she goes to bed after I get up. When she goes to bed I sit at the foot of the bed and rub her feet gently for about 15 minutes to help take her mind off of her feet. This helps most night but not tonight for some reason. I'm going to go in there again as soon as I finish this post.

Maybe you could talk about Bud's situation a little bit as to how he came to have neuropathy, how long he has had it, what may have been its cause, has he been diagnosed (my wife never was officially diagnosed, not that it matters but just a point of reference and interest) and what kinds of things has he tried to do for it so far. I hope you can find useful info here, if nothing else its a good place to come and find sympathy and understanding as most people who are not familiar with peripheral neuropathy (PN) have no concept of what this illness is or means to a person's life. My best wishes to you and Bud. Hank

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@budandbarbara

My husband Bud has suffered a long time with neuropathy.Some nights he can not even sleep. Is there any cure or help for him?

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Hello @budandbarbara – I would like to add my welcome to Connect along with @jesfacsmon and other members. There's no cure for neuropathy but there are a lot of different things a person can try to treat the symptoms of neuropathy. First as a husband with a wife that is my primary caregiver, I applaud you for advocating and seeking help for your husband. One suggestion I have is to learn as much as you can about your husband's neuropathy to see if you can find something that helps with his symptoms. I posted a similar suggestion for a new member directly above your post in this discussion. If you click the VIEW & REPLY button at the bottom of this email notification it will take you directly to the post and some suggestions:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=176#comment-408914
Can you share more about your husband's neuropathy and the symptoms that make it hard for him to sleep?

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I am njc. I have been diagnosed with small fiber neuropathy with both peripheral and autonomic systems affected. I would be interested in knowing how others deal with this.

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@njc

I am njc. I have been diagnosed with small fiber neuropathy with both peripheral and autonomic systems affected. I would be interested in knowing how others deal with this.

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Hello @njc, Welcome to Connect. You have come to the right place to learn more about treatments that are available to help with your small fiber neuropathy. I also have small fiber peripheral neuropathy but only have numbness for my symptoms. You can read my neuropathy story and neuropathy stories of other members in the following discussion.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

@rwinney, @jesfactsmon, @avmcbellar, and other members might have some suggestions to share with you.

@njc, are you able to share a little more about the symptoms you have with your small fiber neuropathy?

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For a number of years I have had diabetic neuropathy with burning and stinging in my toes and glove-like numbness below the knees. I have to put a pillow between my lower legs at night because of pain when one leg puts pressure on another. I developed gastroparesis, swallowing difficulties and peristaltic irregularities in the esophagus. About eight months ago, after an incident that aggravated my right sciatic nerve, which is damaged from former disc extrusion and back surgery and which is also affected by subsequent arachnoiditis, I had an acute response of stinging, burning and numbness which extended from head to foot on the right side of my body. The stinging and burning have considerably reduced, but the numbness continues along with the itching which seems to precede the onset of new areas of numbness. The itching and numbness has also migrated to areas of the left side. I was diagnosed with SFN 5 months ago, but no skin test was done. In the past I have been diagnosed with lupus and with Sjogren’s. I have been a Type 1 diabetic for 13 years. I have had nerve conduction and EMG studies
done with indication of lower and possible upper motor neuron issues.
I had never heard of SFN before and not aware of anyone who has similar symptoms. So, I decided to check out this site. It is the first time I have had the courage to “step into“ a support group.
Thank you for your welcome.
PS: I am 80 years old. I have some concerns about what SFN might do to my “old” brain. 🤔

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@njc

For a number of years I have had diabetic neuropathy with burning and stinging in my toes and glove-like numbness below the knees. I have to put a pillow between my lower legs at night because of pain when one leg puts pressure on another. I developed gastroparesis, swallowing difficulties and peristaltic irregularities in the esophagus. About eight months ago, after an incident that aggravated my right sciatic nerve, which is damaged from former disc extrusion and back surgery and which is also affected by subsequent arachnoiditis, I had an acute response of stinging, burning and numbness which extended from head to foot on the right side of my body. The stinging and burning have considerably reduced, but the numbness continues along with the itching which seems to precede the onset of new areas of numbness. The itching and numbness has also migrated to areas of the left side. I was diagnosed with SFN 5 months ago, but no skin test was done. In the past I have been diagnosed with lupus and with Sjogren’s. I have been a Type 1 diabetic for 13 years. I have had nerve conduction and EMG studies
done with indication of lower and possible upper motor neuron issues.
I had never heard of SFN before and not aware of anyone who has similar symptoms. So, I decided to check out this site. It is the first time I have had the courage to “step into“ a support group.
Thank you for your welcome.
PS: I am 80 years old. I have some concerns about what SFN might do to my “old” brain. 🤔

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@njc, I am glad you decided to step out of your comfort zone and join us here on Connect! We are a mixed bunch of all ages and all ages are welcome. Our mission is to connect members with other members who share similar symptoms so that we can learn from each other. I'm 77 going on 80 so not that far behind you. My goal in life is to learn at least one new thing every day…yup, you guessed it, sometimes I learn the same thing more than once 🙂 Based on some of the symptoms you mentioned. you may also be interested in reading and participating in the following discussions:

Esophagus issues: https://connect.mayoclinic.org/discussion/esophagus-issues/
Arachnoiditis: Looking to talk with others: https://connect.mayoclinic.org/discussion/arachnoiditis/
Late Stage Primary Sjogren's Syndrome: https://connect.mayoclinic.org/discussion/late-stage-primary-sjogrens-syndrome/
Lupus diagnosis need help: https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/

You mentioned you have been a Type 1 diabetic for 13 years. Have you made any lifestyle changes to try and help with your diabetes or other symptoms?

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@njc

For a number of years I have had diabetic neuropathy with burning and stinging in my toes and glove-like numbness below the knees. I have to put a pillow between my lower legs at night because of pain when one leg puts pressure on another. I developed gastroparesis, swallowing difficulties and peristaltic irregularities in the esophagus. About eight months ago, after an incident that aggravated my right sciatic nerve, which is damaged from former disc extrusion and back surgery and which is also affected by subsequent arachnoiditis, I had an acute response of stinging, burning and numbness which extended from head to foot on the right side of my body. The stinging and burning have considerably reduced, but the numbness continues along with the itching which seems to precede the onset of new areas of numbness. The itching and numbness has also migrated to areas of the left side. I was diagnosed with SFN 5 months ago, but no skin test was done. In the past I have been diagnosed with lupus and with Sjogren’s. I have been a Type 1 diabetic for 13 years. I have had nerve conduction and EMG studies
done with indication of lower and possible upper motor neuron issues.
I had never heard of SFN before and not aware of anyone who has similar symptoms. So, I decided to check out this site. It is the first time I have had the courage to “step into“ a support group.
Thank you for your welcome.
PS: I am 80 years old. I have some concerns about what SFN might do to my “old” brain. 🤔

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Sounds like you have had chronic pain for years. I've only had it for 5 years and I think that is way too long. I have SFN in my feet and hands,, but mostly in my feet. They confirmed it via a biopsy. I still remember the doctor telling me that it would only get worse and there is no cure for it. I appreciated him being direct even if the outlook wasn't good.

When my feet start really "burning" I cool my feet off with cold water for 2 hours til the pain medication kicks in.

I'm 60 so it looks like I'm one of the younger ones with this painful diagnoses.

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@njc

For a number of years I have had diabetic neuropathy with burning and stinging in my toes and glove-like numbness below the knees. I have to put a pillow between my lower legs at night because of pain when one leg puts pressure on another. I developed gastroparesis, swallowing difficulties and peristaltic irregularities in the esophagus. About eight months ago, after an incident that aggravated my right sciatic nerve, which is damaged from former disc extrusion and back surgery and which is also affected by subsequent arachnoiditis, I had an acute response of stinging, burning and numbness which extended from head to foot on the right side of my body. The stinging and burning have considerably reduced, but the numbness continues along with the itching which seems to precede the onset of new areas of numbness. The itching and numbness has also migrated to areas of the left side. I was diagnosed with SFN 5 months ago, but no skin test was done. In the past I have been diagnosed with lupus and with Sjogren’s. I have been a Type 1 diabetic for 13 years. I have had nerve conduction and EMG studies
done with indication of lower and possible upper motor neuron issues.
I had never heard of SFN before and not aware of anyone who has similar symptoms. So, I decided to check out this site. It is the first time I have had the courage to “step into“ a support group.
Thank you for your welcome.
PS: I am 80 years old. I have some concerns about what SFN might do to my “old” brain. 🤔

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Hi @njc and welcome. My wife has peripheral neuropathy (PN) and I do my best to look after her even as she does her best to keep from doing anything particularly dumb, which I appreciate. She has never been officially diagnosed, but her PN started right after chemotherapy for breast cancer in 2014. She is 73 and, like a LOT of people here, has many different health issues, the PN being not one of the less significant ones, however, and it seems many of her issues things tie in to nerves (like fibromialgia for example). You sound like someone with some seriously bad, pain inducing problems. For that you have my sincere condolences. That being said, your ailments do sound interesting. The fact that you suffer from pain mostly on one side of your body sounds unusual, though probably tied to hurting the sciatic on your right side I guess.

Anyway, I try to keep abreast of all of the neuropathy discussions here on Connect in hopes of discovering, on my wife's behalf, new ideas and possible aids to dealing with this insidious nerve disease. The latest thing which I have latched onto here is something called "low dose naltrexone" or LDN. Its a drug therapy which may improve the immune system, fight inflammation (I almost wrote" inflation" but it ain't likely to help that) and has very mild side effects. If you go to the main neuropathy page you can scroll down the list of discussions and you can't miss it. Here is a link to the that main page, in case you aren't yet familiar with moving around on Connect yet (it took me about a month):
https://connect.mayoclinic.org/group/neuropathy/
My best to you and hope to hear more from you in coming weeks/months.

Best, Hank

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@jesfactsmon

Hi @njc and welcome. My wife has peripheral neuropathy (PN) and I do my best to look after her even as she does her best to keep from doing anything particularly dumb, which I appreciate. She has never been officially diagnosed, but her PN started right after chemotherapy for breast cancer in 2014. She is 73 and, like a LOT of people here, has many different health issues, the PN being not one of the less significant ones, however, and it seems many of her issues things tie in to nerves (like fibromialgia for example). You sound like someone with some seriously bad, pain inducing problems. For that you have my sincere condolences. That being said, your ailments do sound interesting. The fact that you suffer from pain mostly on one side of your body sounds unusual, though probably tied to hurting the sciatic on your right side I guess.

Anyway, I try to keep abreast of all of the neuropathy discussions here on Connect in hopes of discovering, on my wife's behalf, new ideas and possible aids to dealing with this insidious nerve disease. The latest thing which I have latched onto here is something called "low dose naltrexone" or LDN. Its a drug therapy which may improve the immune system, fight inflammation (I almost wrote" inflation" but it ain't likely to help that) and has very mild side effects. If you go to the main neuropathy page you can scroll down the list of discussions and you can't miss it. Here is a link to the that main page, in case you aren't yet familiar with moving around on Connect yet (it took me about a month):
https://connect.mayoclinic.org/group/neuropathy/
My best to you and hope to hear more from you in coming weeks/months.

Best, Hank

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I'd like to clarify the previous post. I meant to say "my wife does her best to keep ME from doing anything particularly dumb". Gotta be careful, she could read this at some point ya know.

Liked by lorirenee1, fiesty76

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@johnbishop

@njc, I am glad you decided to step out of your comfort zone and join us here on Connect! We are a mixed bunch of all ages and all ages are welcome. Our mission is to connect members with other members who share similar symptoms so that we can learn from each other. I'm 77 going on 80 so not that far behind you. My goal in life is to learn at least one new thing every day…yup, you guessed it, sometimes I learn the same thing more than once 🙂 Based on some of the symptoms you mentioned. you may also be interested in reading and participating in the following discussions:

Esophagus issues: https://connect.mayoclinic.org/discussion/esophagus-issues/
Arachnoiditis: Looking to talk with others: https://connect.mayoclinic.org/discussion/arachnoiditis/
Late Stage Primary Sjogren's Syndrome: https://connect.mayoclinic.org/discussion/late-stage-primary-sjogrens-syndrome/
Lupus diagnosis need help: https://connect.mayoclinic.org/discussion/lupus-diagnosis-need-help/

You mentioned you have been a Type 1 diabetic for 13 years. Have you made any lifestyle changes to try and help with your diabetes or other symptoms?

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Many. I have been on an insulin pump for 9 years and an independent continuous glucose monitor for about a year and a half. Sad to say, I was not given very good instructions on how to count carbs until I received my insulin pump. I “religiously” count carbs and keep track of what I eat. But, blood glucose is not only about carbs, but stress, sickness, medications and exercises as well. Those things are difficult to assign specific impact on glucose. My last A1C was an acceptable 6.5. Over the next few years after becoming diabetic, I lost 50 lbs and then maintained a stable in range BMI. But, I began having swallowing problems in 2016 and lost over 25 lbs in 6 months. I had trouble swallowing meats, raw vegetables, pills and liquids. I was aspirating liquids at times and even saliva as I slept with the result of much coughing. After evaluation by ENT, GI and Neurology doctors with blood tests, CT’s, swallowing evaluations, EMG and nerve conduction studies, though the swallowing difficulties were documented, no diagnosis or cause could be found. I was instructed to have a mechanical soft diet, given drinking instructions, and eventually, was told to use thickener in my drinking liquids. Though there are various thickener types, the only one that I could tolerate was a modified food starch thickener. Of course, the food thickener is pure carbs and has had a significant impact of my blood glucose levels even though the amount of carbs is always counted when dosing insulin. With regards to other diet modifications, because I have had pills lodge in my throat and esophagus, I only take medication in liquid form or pills that can be crushed and mixed with applesauce. Some pills warn that they are not to be crushed. I have had gel cap medication soften and adhere to my throat. Some foods I purée and freeze in serving sizes with carbs identified. I have restrictions associated with the following diets: GERD (spices, acids, fats, caffeine, chocolate), swallowing, kidney (low sodium, potassium, phosphorous, NSAIDS, herbal supplements) and diabetic. Lumping all the diets together, I call it the AIR diet: All Ingestion Restricted. Therefore, finding things I can or want to eat is a constant challenge. I regained 10 lbs after a warning that if I lost more weight, I might have to have a PEG stomach feeding tube. Now my weight is stable. I thank God that I have a supportive husband of 60 years. I apologize for such a long reply. As in many of our lives, things are complex and have no simple answers. God bless you and all those who work to support this group.

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