Does anyone else out there have neuropathy?

Tee P

Member
Relationship to Diabetes
Type 2
Hi, can’t sleep tonight my neuropathy and pulsing in my body isntt good! Since lockdown I have spoken to diabetic nurse and GP about this over phone but have not been examined as I have fear of going to surgery due to corona virusThink I need to see a neurologist to confirm the damage to my nerves or may have to change tablets currently taking Amptripline. I am gradually coming off insulin humalog, as my hba1c has dramatically come down to 53, sugars all in range ( 5-6 in morning, around 7 post lunch and around 8 -10 before bed,)I’m walking most days, doing yoga eating healthy and still feel panicky when I get the neuropathy at night. Does anyone else have this. Not sure what else I can do, hubby massages legs when they are throbbing( usually bad in the mornings) and have nice warm baths to ease it too. Any suggestions would be welcome or to speak to fellow sufferers who are going through similar would help. Thanking you.
 

Docb

Well-Known Member
Relationship to Diabetes
Type 2
Could be many things, maybe your body getting used to the new you, maybe the amitriptyline is losing its effectiveness or maybe something else. You need a pro to sort it out.

Seriously, talk more to your GP and if necessary get examined. The surgery will have had enough time to sort out how to see people if necessary without running unnecessary risks. Ours has and from what other members of the forum have said it seems that most have.
 

Tee P

Member
Relationship to Diabetes
Type 2
Could be many things, maybe your body getting used to the new you, maybe the amitriptyline is losing its effectiveness or maybe something else. You need a pro to sort it out.

Seriously, talk more to your GP and if necessary get examined. The surgery will have had enough time to sort out how to see people if necessary without running unnecessary risks. Ours has and from what other members of the forum have said it seems that most have.
I think I will need to.
 

SB2015

Forum Host
Relationship to Diabetes
Type 1
It does sound like you need to contact your GP @Tee P
I hope that you get some answers.
 

brisr949

Well-Known Member
Relationship to Diabetes
Type 1
Hi Tee.p i have quite bad neuropathy in my right lower leg and foot and have found that at night try not to use a footstool or lounge on the sofa, for me keeping my leg lower than my heart helps, also in bed try an extra pillow again to keep your leg/feet lower helps me a lot, i also changed from amitriptyline to duloxitine which helped me too but the bad news is they work the same way for me which can make me very sleepy so i have to take breaks so to not be a 24hr zombie. But i guess as with all meds it affects people differently.

Adam.
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Interesting, maybe? - neuropathy hurts when it starts to get going BUT it also hurts a lot if it subsequently starts to get better - nerves originally half dying, secondarily getting better and thus able to convey more pain. Ow!
 

KARNAK

Well-Known Member
Relationship to Diabetes
Type 1
Hi @Tee P I have DPN in both legs and hands and it is totally constant, not one minute of the day does it relinquish. As Adam I am on the max dose of Duloxetine plus 2700 mg of Gabapentin a day plus a cocktail of other tablets not associated with DPN, must upgrade my signature. I have my feet checked every six weeks at the hospital (Podiatry) but nothing like dear @Flower has to put up with, its a difficult call for the HCP`s Neurology tests don`t always come up with an answer. To be perfectly honest most Diabetics get it somewhere on their Big D journey but sadly some do not recover, medication helps to a point but only subdues it, does not make it go away nerves are already damaged sadly. Go back to Dr`s explain how you feel they may send you to a Podiatrist who will tickle your feet wave to your toes and maybe if you are lucky check your heart rate at your feet then tell you everything is fine, you then ask yourself on the way out WHY do my fu****g feet hurt so much.:oops:

Its back to the docs after that, mine was wonderful and gradually worked with me mostly over the phone and finally came up with a solution which I could accept not great but a darn sight better than it was. Its good you keep control of your BGL`s which only helps the condition and continue to do so please. I hope this has helped @Tee P if not there is a flight to the moon from Anystanlamabad next week, guess who the pilot is.:D
 

Tee P

Member
Relationship to Diabetes
Type 2
Thank you all for your helpful replies, what would I do without you?. Tried sleeping on a higher pillow last night in order that my heart was higher than my legs whilst sleeping and it relieved my symptoms brisr949, no burning, throbbing pain in my calves and less pulsing in my chest. I too was prescribed Duloxetine but decided to avoid complications during the pandemic I would rather stick to Amitriptyline, after reading side effects.Did you just start taking duloxetine straight away &not gradually come off amitriptyline? I think in the long run Duloxetine would suit me better so will give it a try after seeing doc on Tuesday. hopefully will be referred to a neurologist too as when I get the chest pulsing together with the pins and needles elsewhere it frightens the life of me! I feel rather frustrated of late as I’m doing everything right, diet exercise etc and I still feel grotty, but I know it is damage I have done in the past for not taking Diabetes seriously in the first place. For those just been diagnosed with Diabetes, please get into remission whilst you can. Xx
 

brisr949

Well-Known Member
Relationship to Diabetes
Type 1
I'm glad you had a better night, i had read somewhere about the higher heart thing and tried it and it has really helped me long term.
I only took amitriptyline for a few days as it really knocked me out and i felt like i had taken sleeping pills so ditched them immediately and thats why docs put me on duloxitine. It still makes me sleepy a bit but i guess mixed with all the other meds which i take at night, the hydroxyzine, fexofenadine, mitrazapine with the silly dose of gabapentin and morphine i suppose i cant really expect anything else.
I did forget to mention the doctor also gave me capsaicin cream, which has chilli in it which is for chronic neuropathy pain but you have to be very very careful when applying it but it could be something else you may want to ask about.

Adam.
 

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
Sorry to hear you are struggling with neuropathic pain @Tee P

Hope you can get some advice and support from your GP or nurse. Interesting that you said your BG had come down dramatically. Did that happen quite quickly? There is a form of temporary neuropathy (sometimes called ‘treatment induced neuropathy’) which can be triggered by rapid reductions in BG levels, so you might want to ask whether that might be the case for you, or whether this is something that you will need to manage long term. I think if it’s related to rapid BG improvements, it may begin to ease the longer you can maintain your improved BG levels.

 
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Eddy Edson

Well-Known Member
Relationship to Diabetes
Type 2
Sorry to hear you are struggling with neuropathic pain @Tee P

Hope you can get some advice and support from your GP or nurse. Interesting that you said your BG had come down dramatically. Did that happen quite quickly? There is a form of temporary neuropathy (sometimes called ‘treatment induced neuropathy’) which can be triggered by rapid reductions in BG levels, so you might want to ask whether that might be the case for you, or whether this is something that you will need to manage long term. I think if it’s related to rapid BG improvements, it may begin to ease the longer you can maintain your improved BG levels.

This study https://academic.oup.com/brain/article/138/1/43/337923 looked at the risk of developing TIND by magnitude and speed of HbA1c reduction.

1590330887383.png

A small study, but interesting. HbA1c reduction of 3% (ie about 30 mmol/mol) over 3 months => 20% risk of TIND and similar kinds of risks for worsening retinopathy.

That was the kind of reduction I had in the 3 months after diagnosis and my foot neuropathy certainly worsened - only from "hardly noticeable" to "often a bit annoying", thankfully, but it did seem to continue to get a bit worse as my HbA1c went down by another ~2% over the next few months. Now after more than a year it's back to "sometimes a bit annoying", so in my narrow experience it can get better.

Probably a good idea for the possible downsides of rapid HbA1c reduction to be highlighted a bit more by HCP's.
 

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
Probably a good idea for the possible downsides of rapid HbA1c reduction to be highlighted a bit more by HCP's.
Indeed! Worsening of, or sudden appearance of retinopathy is also commonly seen alongside insulin induced neuropathy.
 

atoll

Well-Known Member
Relationship to Diabetes
Type 1
i thought i might share something that i have found very effective in rapidly reducing pain from neuropathy in my feet and hands caused by TIDN after increasing insulin dosage to combat higher than normal BG levels that have crept up when not testing regularly,and that is taking high dose vitamin C 1000mg two or three times daily untill pain goes away,then 1000mg daily as a supplement.
i found it also stopped an annoying bout of trigger finger that had been painfull for months.
it also works quite well with depression with the onset of SAD/winter blues.

not sure how it works other than being an antioxident,but studies in animals show that when injured, animals produce naturally large amounts of vitamin C to combat infection and aid the healing process .
 
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