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Help with pain?

N

NigelR

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Type 2
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Hello all. I’m feeling hopeful that some of you might understand and offer suggestions for leg pain. I’ve had diabetes for 25+ years and ‘managed’ it for most of that time by ignoring it! As a result I’ve lost 5 toes and most of the sight in one eye. For the last 10 yrs I’ve been taking insulin as well as metformin and, more recently, duloxetine for pain in my legs. I used to cope with pain well, -broken bones etc- but this never ending pain is really getting to me. The only time it eases up is when I’m lying down which means I’m lying down a lot, and that’s no life. Physio suggested more activity but even walking a few metres is painful, my legs don’t feel as if they belong to me and I’m beginning to collapse at the knees. The GP has no suggestions other than paracetomol which doesn’t seem to have any effect. Am I alone in this or does anyone have any advice? Thanks
 
Welcome @NigelR 🙂 That sounds miserable for you. Is the pain due to neuropathy or is there another cause? Is the insulin helping control your blood sugar? What was your latest HbA1C?
 
It’s definitely neuropathy. I have very little feeling in my feet although sometimes get phantom limb pain where big toes used to be. My blood sugar control is not good, partly because I’ve lost my appetite and usually only eat once in 24 hours and some days I drink a few pints but don’t eat. As I say, I’ve rather given up trying to keep on top of it all. I don’t check blood sugar more than once a day and I have no idea about HbA1C - is that the long term blood test the GP nurse takes? I don’t go very often, maybe once a year, it’s hard to get to see anyone there.
 
hi NigelR if you are in constant pain have you thought of asking for a referral to a pain clinic?
 
NigelR said:
It’s definitely neuropathy. I have very little feeling in my feet although sometimes get phantom limb pain where big toes used to be. My blood sugar control is not good, partly because I’ve lost my appetite and usually only eat once in 24 hours and some days I drink a few pints but don’t eat. As I say, I’ve rather given up trying to keep on top of it all. I don’t check blood sugar more than once a day and I have no idea about HbA1C - is that the long term blood test the GP nurse takes? I don’t go very often, maybe once a year, it’s hard to get to see anyone there.
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I completely understand why you’ve given up. Pain is exhausting and depressing. But, keeping a little more on top of things might help. You don’t have to aim for perfection, just a little bit better. Yes, HbA1C is the blood test the Dr/nurse does. Controlling blood sugar can help neuropathy sometimes.

There are lots of mentions of neuropathy on this forum. You’re not alone. Other people have it too to varying extents. While you’re waiting for others to comment on your thread, you could try doing a Search (top right of this page as you’re looking at your screen) for “neuropathy” and read through the threads.
 
@NigelR - I think that you really need to sort out your thinking or all you can look forward to is further deterioration. I am not sorry to be so blunt - I watched my father's mother go through the last years of her life with uncontrolled diabetes multiple amputations and some awful discoveries as she lost feeling in various parts.
Since diagnosis 8 years ago I have had a few encounters with painful feet - at one time I thought that the AZ Covid jab had done for me - but survived intact.
I used walking sticks inside the house and walking poles outside, massage and the shower spray with hot and cold water to try to keep the blood flowing. When I could not bear to stand up I exercised lying down, and I crawled - wearing knee pads to minimise the impact. I put layers of innersoles into sandals with adjustable Velcro straps, then found lambskin and cut out innersoles from that, to cushion contact with the floor.
Beer is often described as liquid bread - if you want alcohol then spirits in sugar free mixer are the obvious choice - but whilst you have the option, eating low carb could still help. It is always going to mean lower blood glucose levels so you should match the insulin to what you eat - I am sure there are type 2s using insulin on the forum who can help with how to do that.
 
Hello & welcome @NigelR

Sorry you are dealing with neuropathic pain & phantom pain.

I’ve got neuropathic pain due to Charcot foot where the bones and joints in my feet have collapsed. It is a horrible pain when at its worst and doesn’t respond at all to pain medication such as paracetamol.

There are various drugs that can be tried for neuropathic pain, gabapentin, duloxetine , pregabalin amitriptyline are some of the main medications but I’ve had to juggle doses, & still don’t find the relief effective unlike eg taking a paracetamol for muscular pain.

The most beneficial way of managing pain for me is trying to keep my blood sugar as stable & in range as possible. It helps me a lot when things are in equilibrium. If you’re able to I would try & get an appointment with whoever you would see about your diabetes and give your diabetes some time and attention, start checking your blood sugar & see if that helps calm things down and limit any further problems.

I hope something works for you. It is a difficult & nasty pain to manage long term but there are things to do to try and reduce its impact,
Best wishes.
 
Sorry to hear about the neuropathic pain you are living with, and the phantom pain from the amputations. Living with long-term pain can be so draining :care:

Hope you can find a combination of pain meds that help take the edge off your pain. One of your members @MikeyBikey has been tackling phantom pain for some time, and @ridder has been looking for ways to help his neuropathic pain on a thread here.

Alongside pain meds, it also seems important to manage your glucose levels as steadily as you can, erratic and elevated glucose levels with bigger swings seem to be a trigger for neuropathic pain that can reduce if levels are more gently wobbling in a reduced range.
 
gail2 said:
hi NigelR if you are in constant pain have you thought of asking for a referral to a pain clinic?
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I sometimes feel pain clinics aren't geared up for real severe pain. I went about another condition I have and was advised to find a film/book to help take the pain away. True pain cannot be removed with a film/book.
 
Thank you all for responding. As a result of your suggestions I insisted on speaking to a GP. It’s been a very long time since I had a consultation with a GP, and almost as long since I saw the diabetic nurse. To my surprise, they were more prepared to listen and my prescription has been changed. I’m only 68 but these days I feel incredibly old and tired - bone tired/exhausted- and I think that’s largely because of the pain. I hear what you say about keeping blood sugar level steady. Does everyone have the computer monitor? I didn’t think I could manage that so I just test my blood once a day which I know isn’t good.
Thank you for your support.
 
NigelR said:
Thank you all for responding. As a result of your suggestions I insisted on speaking to a GP. It’s been a very long time since I had a consultation with a GP, and almost as long since I saw the diabetic nurse. To my surprise, they were more prepared to listen and my prescription has been changed. I’m only 68 but these days I feel incredibly old and tired - bone tired/exhausted- and I think that’s largely because of the pain. I hear what you say about keeping blood sugar level steady. Does everyone have the computer monitor? I didn’t think I could manage that so I just test my blood once a day which I know isn’t good.
Thank you for your support.
Click to expand...
There are probably some things you can also do to help blood glucose be in a better position. You say you only eat once a day so it is important to have nutritious food which will not increase your blood glucose so it would be a good idea to use your monitor to test that meal by testing before you eat and again after 2 hours, if the increase is no more than 2-3mmol/l then that should be OK. As you have made contact with your doctor are you having any blood tests to check your HbA1C and for vitamin deficiency, B12, D and folate as if low that can impact on pain.
I hope your new meds will help.
 
NigelR said:
Thank you all for responding. As a result of your suggestions I insisted on speaking to a GP. It’s been a very long time since I had a consultation with a GP, and almost as long since I saw the diabetic nurse. To my surprise, they were more prepared to listen and my prescription has been changed. I’m only 68 but these days I feel incredibly old and tired - bone tired/exhausted- and I think that’s largely because of the pain. I hear what you say about keeping blood sugar level steady. Does everyone have the computer monitor? I didn’t think I could manage that so I just test my blood once a day which I know isn’t good.
Thank you for your support.
Click to expand...
I finger prick twice a day - before breakfast and before evening meal. I am on controlled pain relief drug plus others. Through food management, I keep my numbers in the 5 range.
 
Hi @NigelR , I hope you get some relief from all of the pain, miserable living with that day to day:(. I wear a Libre 2 sensor which I find invaluable as I always know what the blood sugars are doing and in which direction they are going. I get my on prescription as Type 1 although self-funded at first. I don't know what the policy is regarding Type 2 but think you can try it out for free from https://www.freestyle.abbott/uk-en/getting-started/sampling.html - I assume Type 2 is eligible.... Keep us updated🙂
 
Sorry to hear what you're going through, I have painful twinges every now and again in my feet and normal painkillers dont touch it and that's because they dont work on nerve damage.

Something like Pregablin is normally used to treat nerve damage pain like you get with Neuropathy but there are side effects of such medication. My boss at work takes it for a non-Diabetes related issue and it has messed with his memory so he does forget things a lot when he takes it.

If it was me, I'd go back to the surgery and ask them if it is on your medical record as having Diabetic Neuropathy and if it isn't ask for a diagnosis so it can be on there. If it is on your record, ask them for some pain relief specifically for nerve pain caused by Diabetes as per the NHS website:

https://www.nhs.uk/medicines/pregabalin/

1. specifically says "It's also taken to treat nerve pain. Nerve pain can be caused by different conditions including diabetes"
 
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