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Thread: Neuropathy, Digestive Issues and Chasing my tail ...

  1. #1
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    Neuropathy, Digestive Issues and Chasing my tail ...

    Hi, of late I've experienced some health issues which I'm still trying to get to the bottom of.

    Late June, I started getting intermittent burning sensations in my hands with some desensitisation of ring and small finger and other sensory intolerances to heat and cold which has persisted.

    In early August I had a total hip replacement which I'm recovering from really well.

    I decided to see if I could get some answers for my burning hands and sore feet. My Dr referred me to a neurologist, who did the standard tests and everything was normal, he's also referred me to get some nerve conduction tests next month.

    Next I saw my Rheumatologist who examined me and suggested it could be small fibre neuropathy related to my autoimmune issues. I have CFS ran some tests and the only thing that was elevated was my C reactive protein which was 8. Just after the operation it was normal at <1 (which is odd).

    About 3 weeks ago, I started having some digestive issues a few, with a few pains under my ribs and loads of wind in my lower stomach especially at night. My appetite is reduced but I can eat a meal, my weight has dropped a couple of kilos too. Bowel motions are normal but more frequent, I'm having to get up some nights to go. when I wake up, I get bad anxiety with the gas pains. I'm gluten free and have just downloaded the low fodmap diet.

    I'm thinking I may have to see the gastroenterologist again (I saw him last year for something unrelated) and I feel like I'm chasing my tail and getting nowhere fast. I don't think I have anything too serious as I had :

    Dec 2019 MRI-MRCP of my digestive organs, which was normal
    Oct 2019 Chest X-Ray, normal
    April 2018 Endoscopy (very minor inflammation at Z line, otherwise normal).
    Stool Test Feb 2019 (all clear)
    Colonoscopy Oct 2017 (all clear)
    Recent blood tests normal apart from recent CRP of 8 (normal <5)


    I guess I'm hoping some of you may relate to what I'm going through at present or have some advice. My sleep is the pits, even worse than usual. I've had a lot of anxiety and stress with all of this too
    Last edited by WiseMonkey; 27-09-20 at 05:53.
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  2. #2
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    Quote Originally Posted by WiseMonkey View Post
    Hi, of late I've experienced some health issues which I'm still trying to get to the bottom of.

    Late June, I started getting intermittent burning sensations in my hands with some desensitisation of ring and small finger and other sensory intolerances to heat and cold which has persisted.
    Do you mean heat intolerances to just the fingers? Or your body in general?

    About 3 weeks ago, I started having some digestive issues a few, with a few pains under my ribs and loads of wind in my lower stomach especially at night. My appetite is reduced but I can eat a meal, my weight has dropped a couple of kilos too. Bowel motions are normal but more frequent, I'm having to get up some nights to go. when I wake up, I get bad anxiety with the gas pains. I'm gluten free and have just downloaded the low fodmap diet.
    Obviously, my first thought is stress because it plays havoc with the digestive system, but I'm also wondering if you have taken any antibiotics this year? Only I'm connecting my latest IBS flare to a course of strong antibiotics I took earlier this year. I put myself on low FODMAP a couple of weeks ago and my pain is down from 8/10 to 1/10. It's just a background niggle now, but I still need to take a probiotic to help my gut..

    I'm thinking I may have to see the gastroenterologist again (I saw him last year for something unrelated) and I feel like I'm chasing my tail and getting nowhere fast. I don't think I have anything too serious as I had :

    Dec 2019 MRI-MRCP of my digestive organs, which was normal
    Oct 2019 Chest X-Ray, normal
    April 2018 Endoscopy (very minor inflammation at Z line, otherwise normal).
    Stool Test Feb 2019 (all clear)
    Colonoscopy Oct 2017 (all clear)
    Recent blood tests normal apart from recent CRP of 8 (normal <5)
    If you had something 'orrible - you wouldn't have clear test results like this.


    I guess I'm hoping some of you may relate to what I'm going through at present or have some advice. My sleep is the pits, even worse than usual. I've had a lot of anxiety and stress with all of this too
    Anxiety affects sleep, big time, and stress affects the gut.
    __________________
    There is a light. There is. Look for it. Look for it shining over your shoulder, on the past. It was light where you went once. It is light where you are now. It will be light where you will go again. ~ Jennifer Worth

  3. #3
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    Hi Nora, thanks for your reply. The heat intolerance is a whole body thing, I'm feeling heat and cold sensations more acutely, than they are. I'm pretty sure I also have some mast cell issues too, I think it may be small fibre neuropathy and I remember having bits and pieces of this when I was first diagnosed with CFS in 1996. But it cleared. This is much more severe. I get hot and cold sparks across my feet as well, but it's my hands that give me the most grief!

    I had some intravenous antibiotics when I had my hip replacement surgery (early August), plus lots of other drug goodies (not). I'm generally recovering really well from this op as I was quite fit beforehand and am an average weight.

    I know that brain/gut/anxiety link is very strong, it's my lack of sleep (constantly waking throughout the night) that's causing the most anxiety. The burning palms at night is not pleasant and doesn't make for restful sleep.
    __________________
    If you are one of the lucky souls allowed to enter NZ at this time please remember two things:

    1. We did the hard months in lockdown abiding by rules for you to get here.
    2. No one gives a shit if you prefer white towels or hotels with sea views.
    You're in quarantine for fourteen days ...obey the rules.

  4. #4
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    Quote Originally Posted by WiseMonkey View Post
    Hi Nora, thanks for your reply. The heat intolerance is a whole body thing, I'm feeling heat and cold sensations more acutely, than they are.
    Me too. I have heat and cold intolerances which are due to my FMS. But this can also be a symptom of anxiety (lots of overlaps)

    I had some intravenous antibiotics when I had my hip replacement surgery (early August), plus lots of other drug goodies (not). I'm generally recovering really well from this op as I was quite fit beforehand and am an average weight.
    The antibiotics will have totally wiped out the good bacteria - which produces IBS symptoms. You really should have taken probiotics at the time (as should I)

    Most doctors prescribe the antibiotics but they don't tell you what they will do to your gut, or that you need to take probiotics to rebalance. I was given very strong antibiotics because the GP thought I had an infection in my deep tissue ( I didn't - it was a nerve issue) and since then my IBS has gradually worsened until it's been a mare.

    it's my lack of sleep (constantly waking throughout the night) that's causing the most anxiety. The burning palms at night is not pleasant and doesn't make for restful sleep.
    Unfortunately, the more you focus on lack of sleep, (or any symptom) the worse it will become...

    You could try visualisation when you wake up. e.g., If I wake up and I'm hot, I stick one leg out and think of snow and icebergs. If I'm cold, I imagine I'm on a beach sunbathing.

    What you shouldn't do is think, 'Oh my God this sensation is SO UNPLEASANT. I won't be able to go back to sleep panic panic panic' because your body will fire out the stress hormones and you've no chance of getting back to sleep, or any kind of restful sleep.

    Have you been given any medication to help with the sensation in your hands?
    __________________
    There is a light. There is. Look for it. Look for it shining over your shoulder, on the past. It was light where you went once. It is light where you are now. It will be light where you will go again. ~ Jennifer Worth

  5. #5
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    Did you have your B12 checked with the blood work? That often causes burning sensations, and it’s an easy fix.

    I think you commented on my post that you take amitryptyline, that can also treat neuropathy, so maybe you could adjust the dose there?

    My hands tingle when I have anxiety so it could also just be that!

  6. #6
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    Quote Originally Posted by NoraB View Post
    Me too. I have heat and cold intolerances which are due to my FMS. But this can also be a symptom of anxiety (lots of overlaps)
    The antibiotics will have totally wiped out the good bacteria - which produces IBS symptoms. You really should have taken probiotics at the time (as should I)
    Unfortunately, the more you focus on lack of sleep, (or any symptom) the worse it will become...
    You could try visualisation when you wake up. e.g., If I wake up and I'm hot, I stick one leg out and think of snow and icebergs. If I'm cold, I imagine I'm on a beach sunbathing.
    What you shouldn't do is think, 'Oh my God this sensation is SO UNPLEASANT. I won't be able to go back to sleep panic panic panic' because your body will fire out the stress hormones and you've no chance of getting back to sleep, or any kind of restful sleep.
    Have you been given any medication to help with the sensation in your hands?
    Fortunately, I've taken a probiotic for many years but with the operation I stopped, however, I've started them again yesterday and has a better nights sleep. I've also upped my Amitriptyline to 20 mgs which also helped. Last night I didn't have any anxiety issues which is a plus, no wind and a normal b/m this morning.

    My Dr prescribed low Gabapentin (100mgs low dose) but I've stopped as I think it was causing my stomach issues plus dry mouth, I may try Pregabalin when my stomach settles down. I find that taking a low dose Celecoxib 100mgs (anti-inflammatory) helps with the hand issues. I also get sore toes and the soles of my feet get sore. Of course when I actually touch them they're not actually sore so it's a nerve issue. My hands and feet get very hot after I exercise, usually I walk for an hour or go on my recumbent bike as I like to keep fit.

    The body heat thing is sensory but yes, anxiety does make it worse, especially getting frequent goosebumps!

    You're right, visulisation would be much better than focusing on the unpleasant symptoms. I've actually found that if I leave my hands still in bed for a while and just ride it out, the burning actually dissipates.

    Nora B It's good to know I'm not the only one with heat/cold intolerance, how do you cope with this issue?

    Librella, yes my B12 is on the normal/high side so it's not that and I've upped my Ami dose to 20 mgs.
    __________________
    If you are one of the lucky souls allowed to enter NZ at this time please remember two things:

    1. We did the hard months in lockdown abiding by rules for you to get here.
    2. No one gives a shit if you prefer white towels or hotels with sea views.
    You're in quarantine for fourteen days ...obey the rules.

  7. #7
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    Quote Originally Posted by WiseMonkey View Post

    Nora B It's good to know I'm not the only one with heat/cold intolerance, how do you cope with this issue?
    I adjust accordingly and accept it because I can't change it.

    I don't go out when it's hot. I don't go out when it's cold and damp. Mild and dry? I'm there, baby! (unless I have a migraine, then I'm in bed)

    I keep my dressing gown (big and fluffy) close to me so I can just reach over and cover myself when I wake up with the dithers, and I have a silk runner at the bottom of the bed so that I can cool my feet down when I overheat without disturbing myself too much, but sometimes it has to be everything out, window open and fan on!

    The weird thing with my FMS is that it can be hot in the house, and everybody else is hot, and I can be wearing my dressing gown, a blanket, and have the heating on, and I'm still freezing. Or vice-versa. It's like I have flu-type symptoms a lot of the time, you know?

    I basically go with what my body needs which is to warm up when I'm cold, and cool down when I'm hot and I know what my triggers are now.

    It's really affected how I live, and it has a knock on effect on my family, but luckily for me they are understanding and supportive.
    __________________
    There is a light. There is. Look for it. Look for it shining over your shoulder, on the past. It was light where you went once. It is light where you are now. It will be light where you will go again. ~ Jennifer Worth

  8. #8
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    Yes I do understand that and my symptoms are related to a small fibre neuropathy which is s real bummer for me. The rheumatologist kind of pointed in that direction when he said that nerve conduction tests won't show up SFN. I'm having some next week so will ask about it then. These autoimmune things are a real b***er. My partner/fiancÚ is very supportive too, we are lucky. Dysautonomia can be part of this too. You sound like you're coping with this really well, I know my time will come too, just still rather anxious at present. Do you take any anti-inflammatories eg, celebcoxib?

    https://thedysautonomiaproject.org/i...-dysautonomia/
    __________________
    If you are one of the lucky souls allowed to enter NZ at this time please remember two things:

    1. We did the hard months in lockdown abiding by rules for you to get here.
    2. No one gives a shit if you prefer white towels or hotels with sea views.
    You're in quarantine for fourteen days ...obey the rules.

  9. #9
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    My mom has fibromyalgia and mentions all of the symptoms you’re describing. She also has a fair amount of joint pain though as well, but she does struggle with all the neuropathy issues too.

  10. #10
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    Re: Neuropathy, Digestive Issues and Chasing my tail ...

    Quote Originally Posted by glassgirlw View Post
    My mom has fibromyalgia and mentions all of the symptoms you’re describing. She also has a fair amount of joint pain though as well, but she does struggle with all the neuropathy issues too.
    Thanks for your reply, I think the neuropathy issues take away your appetite. Luckily I don't have much pain other than the SFN sensory stuff! Does your mum have digestive/stomach issues too?
    __________________
    If you are one of the lucky souls allowed to enter NZ at this time please remember two things:

    1. We did the hard months in lockdown abiding by rules for you to get here.
    2. No one gives a shit if you prefer white towels or hotels with sea views.
    You're in quarantine for fourteen days ...obey the rules.

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