Supporting wife struggling badly

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Ted1973

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Hello, I’m trying to sopport my wife who had a diagnosis of T1 at the start of the year at 50 years old.

She was having a lot of trouble with her feet and hands and was always thirsty and in the end I found her unresponsive and she went in to hospital and was diagnosed. We’ve done everything asked and her blood levels are normal now but she’s in terrible pain that has gotten worse in the last few months. She is depressed and can’t sleep or work because of the pain.

No one wants to help. The doctors are dismisseve and the nurse is never available. We don’t know where to turn.

I don’t know how to help her. Can anyone offer advice please we’re desperate
 
Welcome @Ted1973 So sorry to hear about your wife’s pain. Has she got any medication for it? It sounds like neuropathy. There’s a transient form of neuropathy that can appear soon after diagnosis and is due to the improved blood sugar control. It often improves.

Also, there are some supplements that might help. However, please do check they’re compatible with any meds your wife might be on before trying them.

One is Alpha Lipoic Acid. You have to take a largish dose and it’s not cheap, but it’s actually prescribed for neuropathy in Germany. Also, benfotiamine (a special form of vitamin B1) and other B vitamins can help. For the Alpha Lipoic Acid, it’s best to build it up slowly - ie one 200mg tablet a day for a week or so, then two tablets, then 3. You’ll see they’re expensive but they do help. A relative took them for foot pain and had a big improvement in symptoms. Worth a try, I’d say.
 
Thank you for your message. S doesn’t have anything for the pains, they just tell us it’s normal and will improve but it has been 7 months after diagnosis and her BG has been stable for 6. It’s getting worse not better.

I will find out what I can about the acid, thank you. Where can I buy it?
 
My relative got theirs from Amazon @Ted1973 I’ll see if I can find out more info later today. I know they’re still taking a reduced maintenance dose.
 
Really sorry to hear your wife is struggling so much. Where does she have the pains? Neuropathy is typically something which develops after quite a long period of poorly managed or undiagnosed diabetes, but obviously your wife has not had that as the cancer treatment triggered the diabetes and it sounds like her diabetes has been well managed since then. I am wondering if her pains are not associated with diabetes but perhaps another autoimmune condition. My sister developed Polymyalgia Rheumatica (PMR) about the same time as I developed Type 1 diabetes.... both are autoimmune conditions. She had pain everywhere and some days just breathing was painful. Diabetic neuropathy generally starts in the feet and progresses relatively slowly and will typically be tingling or burning or freezing sensation. I believe PMR tends to be more widespread, quite sudden onset and more generalised pain/aching. It is treated with steroids and my sister was also prescribed Methotrexate which is an immunosuppressant... ie the opposite of your wife's immunotherapy, which may have caused this problem too. I wonder if you need to push for a referral to a rheumatologist to get this possibility checked out.

Sadly it is all too easy for doctors to assume that whatever ailment you have is somehow connected to your diabetes and this is not always the case and in your wife's situation I think it unlikely that she is suffering diabetic neuropathy at this early stage, unless it was transient from reducing her levels, but clearly that should be resolving if her levels have been well controlled for 6 months.
It would certainly be worth doing some research on PMR and see if it fits before you spend a lot of money on the supplement @Inka has recommended.

If it is definitely neuropathy then there are painkillers which can help which are Gabapentin and Pregabalin if the supplement doesn't work but I really think it needs more investigation if she is as much discomfort as you describe because I think it unlikely this is neuropathy, particularly if the pain is widespread and not just restricted to feet/legs and possibly hands.

I really hope you can find something to help her. Please push for a specialist referral. I think my sister gets blood tests which show inflammation markers. If it is PMR it can resolve over time with treatment although steroids will mess with your wife's diabetes management. My sister is now on a very low dose of steroids after 5 years and is gradually reducing it with a view to being treatment free eventually and unless she has a flare up, when she reduces the steroids too much, she is pretty much normal. I have another friend who had a very dramatic PMR event which landed him in hospital when he woke up one morning almost paralysed with pain and he is now back to normal and off medication, so there is hope that it can be resolved with the right treatment. I am not saying it is PMR but just that it is something to investigate and as an autoimmune condition it is another possible consequence of her cancer treatment.
 
rebrascora said:
Really sorry to hear your wife is struggling so much. Where does she have the pains? Neuropathy is typically something which develops after quite a long period of poorly managed or undiagnosed diabetes, but obviously your wife has not had that as the cancer treatment triggered the diabetes and it sounds like her diabetes has been well managed since then. I am wondering if her pains are not associated with diabetes but perhaps another autoimmune condition. My sister developed Polymyalgia Rheumatica (PMR) about the same time as I developed Type 1 diabetes.... both are autoimmune conditions. She had pain everywhere and some days just breathing was painful. Diabetic neuropathy generally starts in the feet and progresses relatively slowly and will typically be tingling or burning or freezing sensation. I believe PMR tends to be more widespread, quite sudden onset and more generalised pain/aching. It is treated with steroids and my sister was also prescribed Methotrexate which is an immunosuppressant... ie the opposite of your wife's immunotherapy, which may have caused this problem too. I wonder if you need to push for a referral to a rheumatologist to get this possibility checked out.

Sadly it is all too easy for doctors to assume that whatever ailment you have is somehow connected to your diabetes and this is not always the case and in your wife's situation I think it unlikely that she is suffering diabetic neuropathy at this early stage, unless it was transient from reducing her levels, but clearly that should be resolving if her levels have been well controlled for 6 months.
It would certainly be worth doing some research on PMR and see if it fits before you spend a lot of money on the supplement @Inka has recommended.

If it is definitely neuropathy then there are painkillers which can help which are Gabapentin and Pregabalin if the supplement doesn't work but I really think it needs more investigation if she is as much discomfort as you describe because I think it unlikely this is neuropathy, particularly if the pain is widespread and not just restricted to feet/legs and possibly hands.

I really hope you can find something to help her. Please push for a specialist referral. I think my sister gets blood tests which show inflammation markers. If it is PMR it can resolve over time with treatment although steroids will mess with your wife's diabetes management. My sister is now on a very low dose of steroids after 5 years and is gradually reducing it with a view to being treatment free eventually and unless she has a flare up, when she reduces the steroids too much, she is pretty much normal. I have another friend who had a very dramatic PMR event which landed him in hospital when he woke up one morning almost paralysed with pain and he is now back to normal and off medication, so there is hope that it can be resolved with the right treatment. I am not saying it is PMR but just that it is something to investigate and as an autoimmune condition it is another possible consequence of her cancer treatment.
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Sorry the hear about your sister and it is not something I want to hear about treatment as the GP I saw last week thinks that is what I may have with the pain in my shoulders and more general aching, I have now had some blood tests for inflammatory markers R A and CCP antibodies. I await the outcome.
 
Leadinglights said:
Sorry the hear about your sister and it is not something I want to hear about treatment as the GP I saw last week thinks that is what I may have with the pain in my shoulders and more general aching, I have now had some blood tests for inflammatory markers R A and CCP antibodies. I await the outcome.
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The good news is that she looks and feels really well at the moment and she has managed not to put on weight although she has worked quite hard at it (she has an amazing figure!) or develop diabetes from the steroids and is hoping/expecting that she is well over the worst and on the long slow downward slope to full recovery.... fingers crossed. The first couple of years were really rough and she had some days where she could do very little, but she has horses like me and very active and she has been able to look after them mostly throughout and managed to continue riding on good days although it was incredibly painful in her hips some days which was actually where it started for her I think.

PMR is a bit like diabetes in that it is very individual and can be quite short lived for some people and a long term management issue for others. I think 3 years may be about the norm.

I hope they are able to identify your issue and find a suitable treatment and it resolves quickly. Obviously steroids will be a worry, particularly as you are dietary controlled and it may be that you will need diabetes medication to counteract the effect of the steroids if they become necessary.
 
I’m so sorry for her pain. She’s doing really well to get her blood glucose under control.

For her pain - given her age is she on any HRT? That can help with both pain and sleep.
Do any over the counter pain meds help at all? Sometimes you need to take them by the clock to try and keep some pain relief onboard to take the edge off even if it doesn’t completely go. There are prescription meds for neuropathic pain and if she’s not getting anywhere with the GP ask for a referral to a pain clinic. Usually GPs will at least try meds before doing a referral so it can push them to act.
 
Yes, I get what I call "bone ache" when I have forgotten to put a new HRT patch on for a week or so and even just sitting still, my shins and ribs and arms and thigh bones will torment me, so definitely something else to consider. Vitamin D deficiency can also cause similar aches and pains I believe.
 
Bone ache........I must remember that expression as thats what drove me to the doctors initially. Vit D was very low and triggered diabetes as a result. Big doses of Vit D helped a lot and they went. Now back again , but B12 is now low, so it might be an idea to have these two checked out, expect if your wife is on Metformin.........not sure if you mentioned.
 
Has she actually got a diagnosis for the hand and foot pain @Ted1973 ? If not, that should be the first step, I’d think.
 
Thank you yes it’s metaformin. That’s interesting what you say about the PMR and the possibility of HRT interacting. I wish the medical people knew more about this and could help. It seems like we habe to find everything out ourselves.

I have some new suggestions now which I’ll talk about with her this evening. Thank you eveeuine. Its good to talk about this
 
Inka said:
Has she actually got a diagnosis for the hand and foot pain @Ted1973 ? If not, that should be the first step, I’d think.
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No she doesn’t. No one seems to know anything about it. I’m looking in to rhomatologist
 
It’s arms and hands and feet mainly. But also shoulders and sometimes legs, back
 
Ted1973 said:
It’s arms and hands and feet mainly. But also shoulders and sometimes legs, back
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Ah, that sheds a different light on it then @Ted1973 If the pain is in all those areas too, that sounds less like neuropathy and more like some kind of skeletal or muscular thing.
 
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