Hi all,
This is my first post on this forum. Well, it's actually my first membership on a diabetic forum. I normally rely on advice from my doctors, and I spend a good deal of time trawling the web and medical papers, but I thought that perhaps some anecdotal evidence from other diabetics may offer me an alternative insight into my conditions.
Some background stuff about me:
I'm a 46 year old Caucasian male, type II diabetic (diagnosed 2017, but probably undiagnosed 15 years previously)
BMI is 26.7, weight is 82kg (12st), so I need to lose at least 4kg (0.6 stone)
December 2020 Hb1Ac: 94, started Gliclazide 80mgx2 daily.
I have severe, permanent Small Fibre Neuropathy (SFN) in all my limbs (entire legs and arms), hands, feet, face and Fibromyalgia (FM) mainly in my torso. I also suffer from Hemicrania Continua in the left-side of my head.
Until 2017, I was with a terrible doctor surgery who were reluctant to test me for diabetes despite a prevalent family history and a twin brother testing positive for the disease just months earlier. Both of us had also been complaining of nerve pain, mainly in our feet, since our twenties, which most doctors fobbed off as plantar fasciitis and various other conditions. After insisting to having an Hb1Ac test and testing above 49 I immediately moved to a recommended surgery where I am seen by a very thorough doctor who has referred me to neurologists and various specialists.
Both my brother and I, believe we have now been properly diagnosed with SFN, although mine is more progressed throughout my entire body and his is still only in his legs. I have recently also lost sensation in all finger tips and my body almost always feels like it has been doused in petrol and set alight. We're both convinced that our nerve pain is a result of diabetic neuropathy and so do our neurologists who gave us entirely independent diagnoses. Yet, in a recent PIP application, which was fortunately successful, my doctor stated in a supporting letter that he was unsure if the neuropathy was diabetic related. Despite being very supportive and thorough on everything else, I find my doctor's stance on my nerve condition utterly bewildering. I accept that SFN/diabetic neuropathy is probably rare in prediabetes but it is not unheard of and we also have a family history of it.
I was wondering if anyone here has had difficulties with nerve pain in their early diabetes and if they would be willing to share their experience?
Also, during lockdown, I lost control of my diet so my Hb1Ac in December leapt to 94 from 48. Of course, this has had a detrimental affect on my pain but I am now on Gliclazide and my blood sugars are starting to look more normal. I only have myself to blame, but I was also wondering if anyone had experienced any reduction of nerve pain after getting their sugars under control because I'm not noticing much change. Although, I do understand that nerve damage is permanent. I'm on 3x1200 Gabapentin daily. Each dose lasts about 4 hours and shaves off about 30-40% of the pain. It also makes me extremely high a lot of the time. Existing in this state is simply unbearable and at times it seems impossible to live with.
Even if it's purely anecdotal, I would be extremely appreciative of any insights that people would be willing to share with me.
Many thanks
Rob
(My replies may be a little slow as typing is an agonising exercise and I don't have a lot of luck with speech-to-text apps)
This is my first post on this forum. Well, it's actually my first membership on a diabetic forum. I normally rely on advice from my doctors, and I spend a good deal of time trawling the web and medical papers, but I thought that perhaps some anecdotal evidence from other diabetics may offer me an alternative insight into my conditions.
Some background stuff about me:
I'm a 46 year old Caucasian male, type II diabetic (diagnosed 2017, but probably undiagnosed 15 years previously)
BMI is 26.7, weight is 82kg (12st), so I need to lose at least 4kg (0.6 stone)
December 2020 Hb1Ac: 94, started Gliclazide 80mgx2 daily.
I have severe, permanent Small Fibre Neuropathy (SFN) in all my limbs (entire legs and arms), hands, feet, face and Fibromyalgia (FM) mainly in my torso. I also suffer from Hemicrania Continua in the left-side of my head.
Until 2017, I was with a terrible doctor surgery who were reluctant to test me for diabetes despite a prevalent family history and a twin brother testing positive for the disease just months earlier. Both of us had also been complaining of nerve pain, mainly in our feet, since our twenties, which most doctors fobbed off as plantar fasciitis and various other conditions. After insisting to having an Hb1Ac test and testing above 49 I immediately moved to a recommended surgery where I am seen by a very thorough doctor who has referred me to neurologists and various specialists.
Both my brother and I, believe we have now been properly diagnosed with SFN, although mine is more progressed throughout my entire body and his is still only in his legs. I have recently also lost sensation in all finger tips and my body almost always feels like it has been doused in petrol and set alight. We're both convinced that our nerve pain is a result of diabetic neuropathy and so do our neurologists who gave us entirely independent diagnoses. Yet, in a recent PIP application, which was fortunately successful, my doctor stated in a supporting letter that he was unsure if the neuropathy was diabetic related. Despite being very supportive and thorough on everything else, I find my doctor's stance on my nerve condition utterly bewildering. I accept that SFN/diabetic neuropathy is probably rare in prediabetes but it is not unheard of and we also have a family history of it.
I was wondering if anyone here has had difficulties with nerve pain in their early diabetes and if they would be willing to share their experience?
Also, during lockdown, I lost control of my diet so my Hb1Ac in December leapt to 94 from 48. Of course, this has had a detrimental affect on my pain but I am now on Gliclazide and my blood sugars are starting to look more normal. I only have myself to blame, but I was also wondering if anyone had experienced any reduction of nerve pain after getting their sugars under control because I'm not noticing much change. Although, I do understand that nerve damage is permanent. I'm on 3x1200 Gabapentin daily. Each dose lasts about 4 hours and shaves off about 30-40% of the pain. It also makes me extremely high a lot of the time. Existing in this state is simply unbearable and at times it seems impossible to live with.
Even if it's purely anecdotal, I would be extremely appreciative of any insights that people would be willing to share with me.
Many thanks
Rob
(My replies may be a little slow as typing is an agonising exercise and I don't have a lot of luck with speech-to-text apps)