Neuropathy advice

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I have just been prescribed amitriptyline for my neuropathy and a side effect is that it calms my rls too. It's early days, but so far so good. During the day I can presently put up with it, but nights were a problem. I found that wrapping my legs in a woolen blanket with thermal socks on would ease things slightly.
I've seen B12 mentioned here but my levels were tested in the latest round of blood tests and considered in the normal range so I did not pursue that any further.
I
I have just been prescribed amitriptyline for my neuropathy and a side effect is that it calms my rls too. It's early days, but so far so good. During the day I can presently put up with it, but nights were a problem. I found that wrapping my legs in a woolen blanket with thermal socks on would ease things slightly.
I've seen B12 mentioned here but my levels were tested in the latest round of blood tests and considered in the normal range so I did not pursue that any further.
I certainly sympathise.
I was prescribed Amitriptyline at first but, unfortunately, it had no effect. I can’t bear anything on my feet at the moment and my pain is unbearable when my feet are hot. And when they get hot, they swell. I’ve also been referred to a dermatologist for a kind of rash on my toes, top of my foot and lower leg. I don’t know if it’s all related or not.
 
I have been taking it for 4 nights. I take 1 x10mg before bed, and it has helped from that first night. I slept! First time in many, many months. The past two nights I've woken several times but just nodded of again with no leg/foot pain.
Perhaps after 4 weeks of no effect then surely there would be something else that may suit you better.
Wishing you luck, it's exhausting to have to put up with.
 
I was prescribed Amitriptyline at first but, unfortunately, it had no effect. I can’t bear anything on my feet at the moment and my pain is unbearable when my feet are hot. And when they get hot, they swell. I’ve also been referred to a dermatologist for a kind of rash on my toes, top of my foot and lower leg. I don’t know if it’s all related or not.
It did seem very counter intuitive to put hot socks on my burning hot feet, the duvet or sheet touching my feet would cause terrible pain, but, for some reason it worked. I have also tried sleeping on a gel ice mat which used to ease things a little.
 
It did seem very counter intuitive to put hot socks on my burning hot feet, the duvet or sheet touching my feet would cause terrible pain, but, for some reason it worked. I have also tried sleeping on a gel ice mat which used to ease things a little.
How strange but great if it helped!
 
I have been taking it for 4 nights. I take 1 x10mg before bed, and it has helped from that first night. I slept! First time in many, many months. The past two nights I've woken several times but just nodded of again with no leg/foot pain.
Perhaps after 4 weeks of no effect then surely there would be something else that may suit you better.
Wishing you luck, it's exhausting to have to put up with.
That’s great it’s helping, bit if a process of elimination finding the right meds. I’m still not at the full dose of Pregabalin so, the plan is, to get to the full dosage if needed and see where we go from there. I hope the amitriptyline continues to give you relief from your pain.
 
Hypothermia can cause people to feel burning hot and they take off their clothes even out in a snowstorm.
 
Just got some B12 today to see if that's an issue.
Took first one just now.
Will see how it goes over the next few weeks.
I would take twice as much as they suggest on the box. The one thing about B12 is that it is water soluble which means you cannot overdose, any extra just gets urinated out. It is not cheap so you would not want to take an excessive amount just to get it poured down the toilet so to speak. In fact if you are deficient - or low - you would need to take loading doses before you take one a day. Also, if taking too much you will get the runs, so that will regulate you as well. There are several kinds of B12. Hydrocobalamin, cynocbalamin, and methylcobalamin. Most pills come in cyno form but if you can get the methyl form they are better.
 
Hello @Tommo77 been away from the forum for a while so may I welcome you?

I have done intensive research on Diabetic Neuropathy because it affects me 24/7,
What I tell you mostly refers to myself along with research and help from my local
Podiatry department which I have built a great relationship.

The cause in my case is because I managed to get my HbA1c from DX down from
156 to 48 in 3 months consultant was delighted, what I didn`t know was reducing it
this fast destroys the nerves It was only on this forum I found that out. The damage
is forever in my case and there are a few other members with the the same problem,

Firstly there are 3 types of Diabetic Neuropathy:-
Autonomic, Motor, Sensory Neuropathy a short explanation of each type is as follows.
Autonomic:- Altered blood flow and loss of sweating, resulting in dry skin which is prone
to fissures.

Motor:- An imbalance of small foot muscles resulting in deformity such as claw toes and
highly arched feet.

Sensory:- A gradual loss of sensation in the feet which can result in callus formation and
unnoticed damage.

One of the most crucial points to remember control of BGL`s the higher they are the worse
they will feel, evidence of neuropathy may be found in up to 50% of people with T2 causing
problems in a third of them.

What concerns me about your post is your feet are hot and has redness this needs to be
checked out by a Podiatric team if it was one foot only I would be extremely concerned as
this would be a sign of Charcot foot especially if there is swelling too. Look it up on the NHS
website save me referring to my notes as there is a lot of info about this condition.

Medication :- I see you are on Pregabalin, how many times a day do you take it and are there
any other medication associated with your condition? As already said Duloxetine is the icing
on the cake so to speak starting with 30 mg and gradually increasing to 60 mg if 30 is not effective
enough. As far as B12 is concerned if you have a deficiency it should have been picked up with
your other blood tests if its ok leave it at that. The other thing that concerns me is you, from what
I can gather from your post, do not walk around at home with your feet covered this is an absolute
NO NO, and do not soak your feet under any circumstances you risk infection, ok a few seconds in
cool water won`t hurt but that`s about it. It may sound counter productive but keep your feet covered
at all times and walk around your home with proper house shoes on, I use fur lined moccasins with
a rubber sole and trainer socks, for proper shoes I have inserts supplied by my Podiatric team.
A short note about Alpha Lipoic acid, a good supplement but the slow release version is recommended,
this is prescribed in Europe as an alternative Germany has had great results from it but you have to pay
for it over here, very expensive.

Make sure you wash your feet everyday and apply a good moisturiser to them but under no circumstances
between the toes because there is a real risk of infection, sorry if this sounds obvious just trying to cover
all possibilities. As far as night time is concerned this seems to affect the condition most, try to keep your
feet covered and use a pillow or something soft to raise your feet slightly, on another point have you had any
tests done by Podiatry/ Neurology or is this something the Doc assumes?

I think I have giving you enough food for thought remember BGL`s are crucial to this condition, I`m sorry its
such a long post and you may wish to ignore the post but I`m hoping other members also take an interest and
prove to be helpful to them. Please take care and don`t allow this condition to control you but it will if you let it.
 
Hello @Tommo77 been away from the forum for a while so may I welcome you?

I have done intensive research on Diabetic Neuropathy because it affects me 24/7,
What I tell you mostly refers to myself along with research and help from my local
Podiatry department which I have built a great relationship.

The cause in my case is because I managed to get my HbA1c from DX down from
156 to 48 in 3 months consultant was delighted, what I didn`t know was reducing it
this fast destroys the nerves It was only on this forum I found that out. The damage
is forever in my case and there are a few other members with the the same problem,

Firstly there are 3 types of Diabetic Neuropathy:-
Autonomic, Motor, Sensory Neuropathy a short explanation of each type is as follows.
Autonomic:- Altered blood flow and loss of sweating, resulting in dry skin which is prone
to fissures.

Motor:- An imbalance of small foot muscles resulting in deformity such as claw toes and
highly arched feet.

Sensory:- A gradual loss of sensation in the feet which can result in callus formation and
unnoticed damage.

One of the most crucial points to remember control of BGL`s the higher they are the worse
they will feel, evidence of neuropathy may be found in up to 50% of people with T2 causing
problems in a third of them.

What concerns me about your post is your feet are hot and has redness this needs to be
checked out by a Podiatric team if it was one foot only I would be extremely concerned as
this would be a sign of Charcot foot especially if there is swelling too. Look it up on the NHS
website save me referring to my notes as there is a lot of info about this condition.

Medication :- I see you are on Pregabalin, how many times a day do you take it and are there
any other medication associated with your condition? As already said Duloxetine is the icing
on the cake so to speak starting with 30 mg and gradually increasing to 60 mg if 30 is not effective
enough. As far as B12 is concerned if you have a deficiency it should have been picked up with
your other blood tests if its ok leave it at that. The other thing that concerns me is you, from what
I can gather from your post, do not walk around at home with your feet covered this is an absolute
NO NO, and do not soak your feet under any circumstances you risk infection, ok a few seconds in
cool water won`t hurt but that`s about it. It may sound counter productive but keep your feet covered
at all times and walk around your home with proper house shoes on, I use fur lined moccasins with
a rubber sole and trainer socks, for proper shoes I have inserts supplied by my Podiatric team.
A short note about Alpha Lipoic acid, a good supplement but the slow release version is recommended,
this is prescribed in Europe as an alternative Germany has had great results from it but you have to pay
for it over here, very expensive.

Make sure you wash your feet everyday and apply a good moisturiser to them but under no circumstances
between the toes because there is a real risk of infection, sorry if this sounds obvious just trying to cover
all possibilities. As far as night time is concerned this seems to affect the condition most, try to keep your
feet covered and use a pillow or something soft to raise your feet slightly, on another point have you had any
tests done by Podiatry/ Neurology or is this something the Doc assumes?

I think I have giving you enough food for thought remember BGL`s are crucial to this condition, I`m sorry its
such a long post and you may wish to ignore the post but I`m hoping other members also take an interest and
prove to be helpful to them. Please take care and don`t allow this condition to control you but it will if you let it.
I can’t tell you how helpful this is. I’ve just got on to my doctors for an appointment and am actually ‘seeing’ a new diabetic Dr tomorrow. My current Dr, although he’s a nice man, hasn’t really been any help. Just had a moment and cried on the phone to the poor receptionist!

I’ve been taking Pregabalin 150mg, 3 times a day. I now have some blistering on the top of my foot and after a bit of research, I’m convinced it’s a side effect of the meds. I’m also taking Metformin 2x 500mg twice a day, 10mg Empagliflozin a day and 40mg Atorvastatin a day, blood pressure is a bit high so currently home monitoring that too.

Thank you so much for your help, people are very kind and I’ve discovered more on here in the last couple of days than I have from anywhere else.
 
That’s great it’s helping, bit if a process of elimination finding the right meds. I’m still not at the full dose of Pregabalin so, the plan is, to get to the full dosage if needed and see where we go from there. I hope the amitriptyline continues to give you relief from your pain.

Hello @Tommo77 been away from the forum for a while so may I welcome you?

I have done intensive research on Diabetic Neuropathy because it affects me 24/7,
What I tell you mostly refers to myself along with research and help from my local
Podiatry department which I have built a great relationship.

The cause in my case is because I managed to get my HbA1c from DX down from
156 to 48 in 3 months consultant was delighted, what I didn`t know was reducing it
this fast destroys the nerves It was only on this forum I found that out. The damage
is forever in my case and there are a few other members with the the same problem,

Firstly there are 3 types of Diabetic Neuropathy:-
Autonomic, Motor, Sensory Neuropathy a short explanation of each type is as follows.
Autonomic:- Altered blood flow and loss of sweating, resulting in dry skin which is prone
to fissures.

Motor:- An imbalance of small foot muscles resulting in deformity such as claw toes and
highly arched feet.

Sensory:- A gradual loss of sensation in the feet which can result in callus formation and
unnoticed damage.

One of the most crucial points to remember control of BGL`s the higher they are the worse
they will feel, evidence of neuropathy may be found in up to 50% of people with T2 causing
problems in a third of them.

What concerns me about your post is your feet are hot and has redness this needs to be
checked out by a Podiatric team if it was one foot only I would be extremely concerned as
this would be a sign of Charcot foot especially if there is swelling too. Look it up on the NHS
website save me referring to my notes as there is a lot of info about this condition.

Medication :- I see you are on Pregabalin, how many times a day do you take it and are there
any other medication associated with your condition? As already said Duloxetine is the icing
on the cake so to speak starting with 30 mg and gradually increasing to 60 mg if 30 is not effective
enough. As far as B12 is concerned if you have a deficiency it should have been picked up with
your other blood tests if its ok leave it at that. The other thing that concerns me is you, from what
I can gather from your post, do not walk around at home with your feet covered this is an absolute
NO NO, and do not soak your feet under any circumstances you risk infection, ok a few seconds in
cool water won`t hurt but that`s about it. It may sound counter productive but keep your feet covered
at all times and walk around your home with proper house shoes on, I use fur lined moccasins with
a rubber sole and trainer socks, for proper shoes I have inserts supplied by my Podiatric team.
A short note about Alpha Lipoic acid, a good supplement but the slow release version is recommended,
this is prescribed in Europe as an alternative Germany has had great results from it but you have to pay
for it over here, very expensive.

Make sure you wash your feet everyday and apply a good moisturiser to them but under no circumstances
between the toes because there is a real risk of infection, sorry if this sounds obvious just trying to cover
all possibilities. As far as night time is concerned this seems to affect the condition most, try to keep your
feet covered and use a pillow or something soft to raise your feet slightly, on another point have you had any
tests done by Podiatry/ Neurology or is this something the Doc assumes?

I think I have giving you enough food for thought remember BGL`s are crucial to this condition, I`m sorry its
such a long post and you may wish to ignore the post but I`m hoping other members also take an interest and
prove to be helpful to them. Please take care and don`t allow this condition to control you but it will if you let it.
@KARNAK,
I'm quite concerned that by doing my best to reduce my Bg levels quickly I will be destroying the nerves that are affected, is this correct or am I misunderstanding?
And if this is the case, how best can the nerve damage be managed positively?
 
A lot of people with diabetes are taking Metformin and Metformin lowers B12 (or stops the absorption of it). Doctors should be regularly checking this but unfortunately they do not always. Also the lower level of reference range is really too low. The range is roughly 180 to 900 and it should be over 500 and anything below 500 it is a good idea to supplement. Anything below 180 must have injections before permanent damage is done.
 
@KARNAK , how does soaking your feet in cold water risk an infection?

ETA. Google is my friend. Soaking can dry the feet out and cause cracking of the skin.
 
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@KARNAK,
I'm quite concerned that by doing my best to reduce my Bg levels quickly I will be destroying the nerves that are affected, is this correct or am I misunderstanding?
And if this is the case, how best can the nerve damage be managed positively?
Yeah, I am pretty sure this is exactly what I have done as well.
 
@Tommo77 its great you have an appointment with a knowledgeable Dr that amount of Pregabalin
wouldn`t touch me at all, I`m on 3600mg of Gabapentin a day plus 60mg of Duloxetine and this keeps
me with an acceptable pain threshold, blisters on your feet please push to see a Podiatrist let us know.

@Iwillgetthere in theory you are correct it really depends on how high you are and for how long, some
people can get away with it but a lot don`t, give me an idea how high you are and what you are doing
to reduce it I may be able to help.

@Lilian that is a very good point but I make sure they check it every time, a lot of tests get forgotten
so I think the only way around it is to ask them what they are testing for, they may not like it but its your
body so look after it the best way you can even if it means upsetting the HCP.

@pm133 thought I would hear from you thankyou, think about it your tootsies basically touch each other
so are prone to chaffing, If you soak them in water you then have to dry them out with a towel as you would
if you just had a shower but soaking them gets rid of the natural lubrication then you have to dry them.
This removes most of the inner toes natural lubrication and if you then go out wearing shoes the inner toes
will naturally chafe and if you have D Neuropathy you may not feel it hence the risk of infection, likewise if
you moisturise between the toes the risk is your inner toes will probably sweat without you realising this
another source of infection. Your BGL`s seem to be under control most of the time so maybe time to go back
to the Docs and as a fairly new big D now is the time to sort it out.

Please everyone this subject is my little baby and everything I tell you is through research and my Podiatry
friends at the hospital plus HCP`s from abroad, your feet need looking after more than a person without D.
Jump on anything that you don`t like about your feet including any changes that doesn`t look correct, all you need
is a referral by your HCP to the Podiatry unit they will assess your feet and tell you if you have a real problem
plus you should be given a contact number directly to the unit where a Podiatrist will speak to you about your
concerns or just make you an appointment to attend. They are passionate about your feet and usually have
specialists at the unit incase they need a second opinion the last thing they want is someone whose feet develop
into a major problem, one of our members @Flower has been wearing a cast for many years and she keeps going
because they want to amputate her lower leg but she`s having none of it struggle on as long as she can a brave lady.

Speak with you later folks keep the thread going if you wish to and look after them thar feet.
 
@pm133 thought I would hear from you thankyou, think about it your tootsies basically touch each other
so are prone to chaffing, If you soak them in water you then have to dry them out with a towel as you would
if you just had a shower but soaking them gets rid of the natural lubrication then you have to dry them.
This removes most of the inner toes natural lubrication and if you then go out wearing shoes the inner toes
will naturally chafe and if you have D Neuropathy you may not feel it hence the risk of infection, likewise if
you moisturise between the toes the risk is your inner toes will probably sweat without you realising this
another source of infection. Your BGL`s seem to be under control most of the time so maybe time to go back
to the Docs and as a fairly new big D now is the time to sort it out.
I am soaking my feet in cold water only - no soaps or anything added to the water and it's for less than a minute at a time. When I dry my feet I pat them dry only and never between the toes and then allow them to dry naturally wearing open toe sandals around the house. I don't use any cream or moisturisers at the moment.

The last couple of days, I've not had to soak them at all. The pillow suggestion seemed to work last night. I'm on the verge of asking for stronger pills but I'm holding off to see if things calm down a bit. This was caused by the rapid drop in blood glucose after diagnosis. It's only been 10 weeks or so since then so I'm hoping it's reversible.
 
Hi @pm133 glad you got some respite using the pillow and more than happy you are not
soaking them. Do ask the Dr if you can increase the dosage it will certainly help but the
Duloxetine would be even a greater help, Its not for me to tell you a medical prognosis but
this is what I have learned through my own condition and research. Consequently its your
HCP who will make the final decision but you can give them a gentle nudge through your
own research if you know what I mean Harry.🙂
 
Karnak, thank you for your reply. I think Ive done what you have done, reduced glucose levels so fast I’ve done damage. I really hope it’s not permanent. I so sorry to hear yours is, this pain s unbearable. My doctor is sending me for scans etc. and says my levels didn’t change too much but still not much information. I’m having bloods taken to check vitaminB12 levels next week. I’m very despondent and feeling it’s just one thing too much, on top of the coronavirus. my admiration for living with this and helping others. Thank you again. I’m off to rest now. I’ll log back in tomorrow if the pills don’t completely knock me out!
 
Karnak, thank you for your reply. I think Ive done what you have done, reduced glucose levels so fast I’ve done damage. I really hope it’s not permanent. I so sorry to hear yours is, this pain s unbearable. My doctor is sending me for scans etc. and says my levels didn’t change too much but still not much information. I’m having bloods taken to check vitaminB12 levels next week. I’m very despondent and feeling it’s just one thing too much, on top of the coronavirus. my admiration for living with this and helping others. Thank you again. I’m off to rest now. I’ll log back in tomorrow if the pills don’t completely knock me out!
I suspect if your Dr is sending you for scans he trying to rule out other possible causes for your pain.
 
A brief update.
I emailed my GP for stronger pills on Wednesday because the pain had gotten worse.
Then a weird thing happened.
Within a couple of hours of sending the email, the pain subsided enough that I can sleep again. I still get some pain and some burning which goes away after 30 seconds of immersion in cold water but it's definitely better now.
I've added a multivitamin tablet and a fish oil tablet to my diet over the last few days so it's a bit soon for them to have had an effect.
Waiting to see if this is temporary or the amytriptyline finally kicking in after 6 weeks.
 
Sounds promising though @pm133 - hope the improvement continues.
 
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