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Struggling To Cope.....

A

AliB20

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My partner has type 1 diabetes. Although he is managing his sugars very well (they’ve come right down) he has diabetic neuropathy in his feet and now it’s in his hands a bit. His feet are causing him agony - literally writhing about in pain clutch8ng his feet and crying it’s that bad sometimes. I feel so helpless because I can’t do anything for him. He’s taking Gabapentin, cocodamol and naproxem as pain killers but sometimes they just don’t seem to do anything. We’ve seen a raft of medical people some of whom have told us different things which doesn’t help. It’s killing me watching him in so much pain. We are trying to move house too which is really stressful just now. He is walking on his heels because he can’t put weight fully down on his feet. Please - is anyone else going through this ? I don’t know what to do for the best anymore.
 
Hi aliB20 I can imagine how you both feel actually. I don't have diabetic neuropathy but i do have mild neuropathy caused by chemotherapy about four years ago now. After a diagnose of diabetes this year in February i was sent to the foot man for a check as we all are along with eyes and so forth ( I told him about the chemotherapy ).I also told him i didn't think it was worse since being a diabetic but maybe it might have been slightly, as i think i was walking around with diabetes for a couple of years before anything was done about it. As for the pain i can really sympathize with your partner as when the doc told me mine was mild i almost said " then what is severe" as sometimes the pain is ,well as you described your partner to be. Sometimes i take pain killers for it but often i need physiotherapy and my husband also massages them quite often. Walking can be very painful. I can't really advise you on much i'm sorry to say except to maybe go back to your doctor. As for yourself, like my husband, there really isn't much you can do except to support him in it as you are already doing. Also would he consider the physiotherapy as it helps a little. I don't know if diabetic nephropathy can be reversed as not a doctor, but i do know mine can't be, i just have to make sure it doesn't worsen. I'm sorry i'm not much help but i'm pretty sure there will be someone that can give you more advise. I wish both of you the very best with your move which is also stressful to say the least. Good luck.
 
Hi @AliB20, Are the doctors absolutely sure there is not pressure on nerves causing his pain (like sciatica)?
Has his dose of Gabapentin been adjusted to try to achieve the best effect (on drug info sites it mentions 1 to 3 weeks for a dose to work)?
What other methods of treatment has been suggested? mayoclinic.org - peripheral neuropathy - Diagnosis and Treatment suggest only using strong painkillers of nothing else works, use of things like gabapentin; Capaiscin cream, TENS machine.
Some more experimental treatment with a medication called ketamine has been undertaken clinicalpainadvisor/neuropathic pain/ketamine-alone- Ketamine for Refractive Neuropathic pain - Chaverneff April 19. 2017.
So there are other things that might be done, if doctors are prepared to refer or look things up ??
I am unsure how TENS machines are source/sold etc in UK.
 
kitedoc said:
Hi @AliB20, Are the doctors absolutely sure there is not pressure on nerves causing his pain (like sciatica)?
Has his dose of Gabapentin been adjusted to try to achieve the best effect (on drug info sites it mentions 1 to 3 weeks for a dose to work)?
What other methods of treatment has been suggested? mayoclinic.org - peripheral neuropathy - Diagnosis and Treatment suggest only using strong painkillers of nothing else works, use of things like gabapentin; Capaiscin cream, TENS machine.
Some more experimental treatment with a medication called ketamine has been undertaken clinicalpainadvisor/neuropathic pain/ketamine-alone- Ketamine for Refractive Neuropathic pain - Chaverneff April 19. 2017.
So there are other things that might be done, if doctors are prepared to refer or look things up ??
I am unsure how TENS machines are source/sold etc in UK.
Click to expand...

TENS machines can be bought OTC, and are stocked by the major pharmacy chains, like Boots, Lloyds for modest sums.
 
Hi. Sadly I can't offer any further suggestions to add to the other posters with regard to the best treatment. When you say your partner's sugars have come right down, what sort of HBA1C does he/she now have? Has the BS only recently come under good control? I've read that sometimes neuropathy can improve a little once BS has been good for a while; hopefully that's true in your case.
 
AliB20 said:
My partner has type 1 diabetes. Although he is managing his sugars very well (they’ve come right down) he has diabetic neuropathy in his feet and now it’s in his hands a bit. His feet are causing him agony - literally writhing about in pain clutch8ng his feet and crying it’s that bad sometimes. I feel so helpless because I can’t do anything for him. He’s taking Gabapentin, cocodamol and naproxem as pain killers but sometimes they just don’t seem to do anything. We’ve seen a raft of medical people some of whom have told us different things which doesn’t help. It’s killing me watching him in so much pain. We are trying to move house too which is really stressful just now. He is walking on his heels because he can’t put weight fully down on his feet. Please - is anyone else going through this ? I don’t know what to do for the best anymore.
Click to expand...


my mother is in same kind of pain most every day dispite of taking morphine. tablets and gabapeptin and also some painkillers for gout..., it is so anoying and sad to have so much pain all the time , though some days more than others... only thing I have read that some people do get help from is the illegal non-Hallucinogen Cannabinol oil... but that is not really an option... and will also make people criminals... in their way to get a life they can cope with...
https://www.foundationforpn.org/201...reatment-medical-cannabis-how-cannabis-works/
 
kitedoc said:
Hi @AliB20, Are the doctors absolutely sure there is not pressure on nerves causing his pain (like sciatica)?
Has his dose of Gabapentin been adjusted to try to achieve the best effect (on drug info sites it mentions 1 to 3 weeks for a dose to work)?
What other methods of treatment has been suggested? mayoclinic.org - peripheral neuropathy - Diagnosis and Treatment suggest only using strong painkillers of nothing else works, use of things like gabapentin; Capaiscin cream, TENS machine.
Some more experimental treatment with a medication called ketamine has been undertaken clinicalpainadvisor/neuropathic pain/ketamine-alone- Ketamine for Refractive Neuropathic pain - Chaverneff April 19. 2017.
So there are other things that might be done, if doctors are prepared to refer or look things up ??
I am unsure how TENS machines are source/sold etc in UK.
Click to expand...

My partner does think there is something mechanical wrong as well because he cant put weight on his feet properly. The balls of his feet are so painful - he’s been told he may have arthritis in them. But the nerve damage seems to be spreading. He is now in pain in his upper legs and his hands. He’s got various appointments booked with musculoskeletal clinics and pain management but it’s the waiting that is so frustrating.
 
Hi,
Fentanyl pain patches might really help with the pain, cocodamol isn't very strong.
Or Tramadol, ask his dr for something stronger.
A referral to a pain specialist would be helpful too.
Take care
 
AliB20 said:
My partner does think there is something mechanical wrong as well because he cant put weight on his feet properly. The balls of his feet are so painful - he’s been told he may have arthritis in them. But the nerve damage seems to be spreading. He is now in pain in his upper legs and his hands. He’s got various appointments booked with musculoskeletal clinics and pain management but it’s the waiting that is so frustrating.
Click to expand...
Hi @Username: , Could his GP do some preliminary tests regarding his joint troubles to at least work out what possible causes there are for his symptoms and/or maybe rule out some causes ?
 
A foot doctor might be able to say if it’s plantars fasciitis. That’s a reason for some foot pain.
 
Kittycat_7_ said:
Hi,
Fentanyl pain patches might really help with the pain, cocodamol isn't very strong.
Or Tramadol, ask his dr for something stronger.
A referral to a pain specialist would be helpful too.
Take care
Click to expand...

The foot specialist we paid to see said to stop taking tramadol as Gabapentin and cocodamol were the best things for his pain. He’s got an appointment with pain management clinic tomorrow tho so i am hoping something comes of that because we can’t live like this much longer.
 
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