Aching legs from Small Fiber Neuropathy

Posted by rwinney @rwinney, Oct 23, 2019

One of my relentless symptoms from neuropathy is profusely aching legs. Does anyone share this symptom with me? At times I wonder if it could be another issue. They hurt so bad and create pain when walking continuously. Both legs feel heavy, tired and can't get much mileage. When I walk it's as though they are full of lead and they make me go at a turtles pace. If I stop and don't move they may settle a bit but then same old situation as I walk again. Only relief is being elevated and wrapped with heat or soaking in warm water. That buys me maybe a half hour or an hour tops. Same goes for any topicals. A tight wrap feels good almost like a weighted blanket does. Something about tightening the muscles does too.
I appreciate comments or feed back you may have to share on this.
Thanks all,
Rachel

@jimhd

I'm a native New Yorker, lived in Brockport, Canandaigua and Jamestown. Then my parents moved to California while I was in college. I have esophageal dysmotility and silent reflux and whatever. I chew everything endlessly until it's pureed. The little bite of food makes its way to the top of my esophagus, then it moseys on down to the bottom of the esophagus and waits for the valve to open and allow the food to get to my stomach. Right now I'm eating pancakes in a restaurant. I don't want to know how many calories of syrup I've used to make it easier to swallow. My poor wife, who isn't with me, finishes her meal when I'm only half way. Usually she plays games on her tablet while I finish the chore of swallowing. I find that I am eating less because I get tired of the process. That's something the speech therapist warmed me of, and told me not to lose any more weight. Recently swallowing liquid has become an issue. Not supposed to drink carbonated drinks or use a straw.

I'm done with chewing now, so I'm going to head home.

Happy Chewing!

Jim

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@jimhd Hi, Jim, @lioness asked me to jump in here. When you say that swallowing liquids is a problem, do you mean those with a regular consistency? I had the same problem when I was first diagnosed. It was suggested that I use a product called Thick-it. You add it to your drink to thicken it and it’s tasteless. Not sure if that info helps, but….Becky

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Thought this link to an overview of the Pain Rehabilitation Center might be useful https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

Liked by rwinney

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@rwinney

So much to this life! I liked it wayyyy better when I was young and naive. 😉

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@rwinney I'm glad you feel better today .I'm have routine blood work today .With pain everyday is an adventure.

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@becsbuddy

@jimhd Hi, Jim, @lioness asked me to jump in here. When you say that swallowing liquids is a problem, do you mean those with a regular consistency? I had the same problem when I was first diagnosed. It was suggested that I use a product called Thick-it. You add it to your drink to thicken it and it’s tasteless. Not sure if that info helps, but….Becky

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@becsbuddy For the life of me I can remember that name and so simple thanks putting it in my Brain roledex

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@tfarrell

Preaching to the gallery. My right calf has just about disappeared, I have trouble getting up if I’m on my knees and I get pain so bad at night I just want to take a hammer and beat my legs. I’m tired from getting the attacks 2-3 nights a week and waking up in the morning wondering where my legs are.

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Hi, @tfarrell – welcome to Mayo Clinic Connect. I believe you are talking about attacks of numbness in your calf as well as pain in your legs? Is that correct? Are you getting any treatment currently?

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@lioness

@rwinney I'm glad you feel better today .I'm have routine blood work today .With pain everyday is an adventure.

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Indeed it is. Good luck 🍀

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@jimhd

I'm a native New Yorker, lived in Brockport, Canandaigua and Jamestown. Then my parents moved to California while I was in college. I have esophageal dysmotility and silent reflux and whatever. I chew everything endlessly until it's pureed. The little bite of food makes its way to the top of my esophagus, then it moseys on down to the bottom of the esophagus and waits for the valve to open and allow the food to get to my stomach. Right now I'm eating pancakes in a restaurant. I don't want to know how many calories of syrup I've used to make it easier to swallow. My poor wife, who isn't with me, finishes her meal when I'm only half way. Usually she plays games on her tablet while I finish the chore of swallowing. I find that I am eating less because I get tired of the process. That's something the speech therapist warmed me of, and told me not to lose any more weight. Recently swallowing liquid has become an issue. Not supposed to drink carbonated drinks or use a straw.

I'm done with chewing now, so I'm going to head home.

Happy Chewing!

Jim

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@jimhd It seems to me your symptoms are similar to my GI problem… that is, gastroparesis.. the stomach empties much slower than normal.. sauces with everything helps … eat small amounts frequently, never carbonated drinks, Never a straw…too much air is swallowed …chew chew chew… snacks to get calories.. nuts and berries.. trail mix.. with mixed nuts… doughy stuff like pancakes and soft breads are toooo pasty .. and form a ball down there that is difficult to pass on out of the stomach… bloating… terrible… Do you have that?
Mayo diagnosed mine with 3 tests… just takes the better part of a day.. Ken

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@ken82

@jimhd It seems to me your symptoms are similar to my GI problem… that is, gastroparesis.. the stomach empties much slower than normal.. sauces with everything helps … eat small amounts frequently, never carbonated drinks, Never a straw…too much air is swallowed …chew chew chew… snacks to get calories.. nuts and berries.. trail mix.. with mixed nuts… doughy stuff like pancakes and soft breads are toooo pasty .. and form a ball down there that is difficult to pass on out of the stomach… bloating… terrible… Do you have that?
Mayo diagnosed mine with 3 tests… just takes the better part of a day.. Ken

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Wow Ken I’m so sorry to hear about all this. Mine is everything moving slow, swallowing is real slow, everything is slow, so I have to be careful because stuff is getting stuck in my esophagus part way down so I have to really concentrate to swallow. Mobility test revealed it (which was an awful test),

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@birdierobin ..Robin.. I do not have trouble swallowing… I just have to realize when to stop eating… don't eat too much.. as it will not go down to the stomach.. Gravity plays a role here… on occasion a foam forms in the stomach and comes up…. it has to be expelled …When food gets caught part way down… it has to come up to get relief…. my condition was the result of a "Nissen" surgery that was to reduce reflux… the gastroparesis was post operative….. . so I had to go up to Mayo to get that diagnosis after I had lost 50 pounds.. down to 150… I am 5'10"… It is not fixable…but Mayo gave me a way to cope … now I am back to 175… so doing much better.. Ken

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@ken82

@birdierobin ..Robin.. I do not have trouble swallowing… I just have to realize when to stop eating… don't eat too much.. as it will not go down to the stomach.. Gravity plays a role here… on occasion a foam forms in the stomach and comes up…. it has to be expelled …When food gets caught part way down… it has to come up to get relief…. my condition was the result of a "Nissen" surgery that was to reduce reflux… the gastroparesis was post operative….. . so I had to go up to Mayo to get that diagnosis after I had lost 50 pounds.. down to 150… I am 5'10"… It is not fixable…but Mayo gave me a way to cope … now I am back to 175… so doing much better.. Ken

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Week Ken, seems there are so many ways our bodies can feel us. I have nonstop reflux too but it doesn’t sound the same and I take pills for that it’s not easy to stop eating. I’ve gained weight for first time in my life 102 138 I’ve had cancer deal with in between 13 years ago now this. Seems to never stop does it? Take care & hope it’s a good night for you

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@becsbuddy

@jimhd Hi, Jim, @lioness asked me to jump in here. When you say that swallowing liquids is a problem, do you mean those with a regular consistency? I had the same problem when I was first diagnosed. It was suggested that I use a product called Thick-it. You add it to your drink to thicken it and it’s tasteless. Not sure if that info helps, but….Becky

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@becsbuddy

Liquids can be slow to get all the way to my stomach, but so far it's not as much of a problem as solids. Thanks for the referral. Some of the hospice clients I have visited used thickener.

Jim

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@ken82

@jimhd It seems to me your symptoms are similar to my GI problem… that is, gastroparesis.. the stomach empties much slower than normal.. sauces with everything helps … eat small amounts frequently, never carbonated drinks, Never a straw…too much air is swallowed …chew chew chew… snacks to get calories.. nuts and berries.. trail mix.. with mixed nuts… doughy stuff like pancakes and soft breads are toooo pasty .. and form a ball down there that is difficult to pass on out of the stomach… bloating… terrible… Do you have that?
Mayo diagnosed mine with 3 tests… just takes the better part of a day.. Ken

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@ken82

I had some gastroparesis several years ago, but I don't think that I have a problem with my stomach emptying. My problem is getting the food there.

I've had several gastric surgeries – small bowel resection (40" quit working), toxic mega colon (80% removed), peptic gastric ulcers, gall bladder removed, and a surgery to clear up lesions from prior surgeries. I think I've had GERD in the past, but the speech therapist said a year ago that I had "silent reflux" whatever that is.

Difficulty with swallowing is the pits.

Jim

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@rwinney

It forever remains a challenge, doesn't It? My aching is part but also severe cramping, burning pain and new sensations appear. I'd like to say the Lyria, Cymbalta and hydro work however, do they really? There are so many shifts in my body with new symptoms and pains that I'm baffled but, afraid to drop any current meds out of fear things will get worse than they already are. Its sad that I dont want to get up today because I fear for my body and what the day brings. Its quite exhausting and drains me most days. Not one part of my body has been left alone for freedom. Quality of life is diminishing more than it already was and I'm patiently waiting for the next attempt at relief through medical cannabis. Im getting referred to a medical marijuana state licensed PCP. Another move, if I drop my lidocaine infusions, is plasmapherisis. I just don't know anymore…no-one speaks of this procedure on the forum so again it remains a mystery and an individual crap shoot. Will it help, won't it help??? All trial and error for each individual. I will continue to trudge on as I preach we must do and those before me remind me we must do. Im at a point now where I'm tired of masking the pain and I want to be a part of healing and forward progress…its just not time yet.

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In light of this post and a few others of mine, heres my update:

Went to my existing Neuro for additional relief options and questioned plasmapherisis and IVIG. He said, auto immune doesn't line up with my case (based on last years spinal tap) however offered to send me to his colleague as I had requested updated EMG/Nerve Conduction study (last done 2 years ago).

After the 2 drs reviewed my case…I was told again that I don't line up for IVIG (immune deficiency) however, they will oblige me by conducting a new study. I asked, how about plasmapherisis then??? The response I received was, let's just do the new study first.

Who knows…the muscle weakness through my whole body has declined and not that I want to go through the miserable test again, I feel it should be ruled out. Maybe it'll be fine and my weakness is simply SFPN.

Questions for anyone out there…

1. Have you had EMG/Nerve Conduction study results change over time and become positive after a re-do?

2. Have you received plasmapherisis and what were your results?

Thank you
Rachel

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@jimhd

I'm a native New Yorker, lived in Brockport, Canandaigua and Jamestown. Then my parents moved to California while I was in college. I have esophageal dysmotility and silent reflux and whatever. I chew everything endlessly until it's pureed. The little bite of food makes its way to the top of my esophagus, then it moseys on down to the bottom of the esophagus and waits for the valve to open and allow the food to get to my stomach. Right now I'm eating pancakes in a restaurant. I don't want to know how many calories of syrup I've used to make it easier to swallow. My poor wife, who isn't with me, finishes her meal when I'm only half way. Usually she plays games on her tablet while I finish the chore of swallowing. I find that I am eating less because I get tired of the process. That's something the speech therapist warmed me of, and told me not to lose any more weight. Recently swallowing liquid has become an issue. Not supposed to drink carbonated drinks or use a straw.

I'm done with chewing now, so I'm going to head home.

Happy Chewing!

Jim

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Jim; I hope this is not where I’m headed they say my esophagus has slowed down, & to really chew my food! I’ll be at the other table doing the same thing ha ha

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Check out the FaceBook protocol. John Bishop, the moderator of this site, recommended it and related that it has helped him. Last summer, in July, I was having significant problems with mouth numbness, burning tongue pain, and some difficulty swallowing. So much so that it prompted me to leave a wedding in Montana which was the final nail in the coffin for my marriage. But after worsening through the Fall, I continued gulping the Hemp & Fish oil as well as the other supplements and I began to improve. I still have symptoms but the throat issues have cleared up. I've had a recent set-back which I think is related to another attempt by me to eat beans & glutin. Now I'm pretty damn certain these are a problem for me and as Dr. Perlmutter, PBS neurologist says, leaky gut issues can cause PN. I have SFN but it may be that the underlying mechanism for these issues is the same for me. Who knows…just have to keep trial and erroring it.

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