Neuropathy

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Jasesonix

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Type 1
Hi everyone. I'm new here and newly diagnosed as diabetic. Though I suspect I've had diabetes for a few years.
I developed neuropathy over last 4 months which prompted me to go to the doctors for first time in 8 years. Hence I was diagnosed with diabetes. I've been on insulin for about 6 weeks now and have got my blood sugars stabilised mostly in single figures. My neuropathy though has continued to progress, getting worse all the time. Spreading up and down my limbs. I've been in chronic pain now for weeks and weeks. I don't sleep much and my mobility is limited. Its so debilitating its dragging me down. I'm on my 3rd medication as first 2 didn't work. Amytriptiline and gabapentin. Now on pregabelin. But as always have to wait 3 weeks for the drug to work, if it does.
Is there anyone else who has been in same situation who can offer some advice or knowledge on this. Maybe you've tried cbn oil?
Thanks for any help.
 
I have this, mainly in my legs/feet. Was absolutely horrendous before diagnosis of T1D Oct21 and still have it now.
I only get tingling in my hands/scalp when my BG is either going high/low really quickly.
I tried nerve pain meds but I personally couldn’t cope with them as the lowered my blood pressure to much. I currently only have pain meds.
I do find that soaking my feet when it’s really awful/they feel really hot helps a little and since my BG is more in range it has settled a little. I also have compression socks etc which help to a small extent.
I don’t know if it actually worked or was more physiological - was told putting a bar of soap end of the bed/under the sheet may help.
The meds do take a while to work but I do know the nerves ‘recovering’ can be just as painful as when it began.
I know it feels hopeless just now but it will get better in time. If you’re managing with the meds, keep with them. If you feel they’re not helping or the pain it to much go back to the doctor and maybe see if they can give you something to take the edge off or at least help you sleep. Not sleeping made everything feel worse for me.
I really do hope you find some relief soon!
 
Hi. sorry to hear about your pain. i am going through the same and Currently on ..
amytriptiline
gabapentin 10 x 300
cocodamol x 8
Tramadol.
I am very sad to say that i am still in screaming pain every night and the doctors dont help with pain meds any further.
 
Mr Lee said:
Hi. sorry to hear about your pain. i am going through the same and Currently on ..
amytriptiline
gabapentin 10 x 300
cocodamol x 8
Tramadol.
I am very sad to say that i am still in screaming pain every night and the doctors dont help with pain meds any further.
Click to expand...

Hi, also sorry to hear you're going through the same. How long has it been for you? I've been off work now since near end of April. I can't see me going back anytime soon as long as I've got this pain. The night time is the worse. I've barely slept at all tonight. Its now 3.23 in the morning. I've just plugged in my tens machine for a bit of relief but it only seems to benefit when it's switched on. When I disconnect its back to square one. Went for a short cycle yesterday, first time on a bike for a few years. It helped for a while, felt better for about 30 mins after exercise then went back to normal. Going to try and do this everyday now and build up some form of fitness. Hopefully it will help.
I was on Amytriptaline then Gabapentin but they didn't touch it. Now on pregabalin. Also take codeine and paracetamol but don't think they do anything either. Bought some cbd capsules the other day, might have to up the dose though.

I'm sat up now not knowing what to do, can't get to sleep yet feel so tired.

I know its not nice but its comforting to know one isn't alone.
 
Also about the doctors, I feel sometimes they don't invest enough in investigating the symptoms. They just seem to throw another drug at the problem.

Since I've been on insulin the last 6-8 weeks, my neuropathy has got worse, not better as the doctors and dn have said it would do. It's been spreading around my body and intensifying.

I've done alot of reading about the condition, some of which I got from links sent by very helpful people on here. I have more symptoms than the doctors are willing to listen to. Not only the debilitating pain 24/7 , but reduced bowel movements, weakness of muscles, limited mobility, lack of appetite, loss of balance and probably more that I can't think of at the moment.

I think that because of reduced services and pressures on the nhs etc, the doctors kind of only do the bare minimum, unwilling to go further. Doesn't help us though does it?
 
Jasesonix said:
I think that because of reduced services and pressures on the nhs etc, the doctors kind of only do the bare minimum, unwilling to go further. Doesn't help us though does it?
Click to expand...
This seems to be a recurring motif on these boards. While it's a very un-scientific opinion based, on anecdotal accounts, I get the impression that the quality of care one receives largely depends on where you live. This was privately confirmed by my Podiatrists, who said that London and the South East were notorious for offering a particularly low standard of care. I suspect that the situation is being made a lot worse by the backdoor privatisation of health services. For example, see this report on profiteering.

As far as your Neuropathy goes, you have my sympathies. I have been diagnosed with mild neuropathy myself, but the Docs seem to have caught it early enough that the Metformin/Empagliflozin + low carb diet are bringing it under control, (touch wood).

I have to admit, the possibility of this getting worse really scares me. I spent yesterday in hospital after having a mini-stroke, and, while I am still trying to digest the implications of this latest development, I think Diabetic Neuropathy scares me more than the potential for a full blown stroke. At least with the latter I can consult with my Doc about when and under what conditions to implement a DNR.

Best of luck with your meds
Irvine
 
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Jasesonix said:
Hi, also sorry to hear you're going through the same. How long has it been for you? I've been off work now since near end of April. I can't see me going back anytime soon as long as I've got this pain. The night time is the worse. I've barely slept at all tonight. Its now 3.23 in the morning. I've just plugged in my tens machine for a bit of relief but it only seems to benefit when it's switched on. When I disconnect its back to square one. Went for a short cycle yesterday, first time on a bike for a few years. It helped for a while, felt better for about 30 mins after exercise then went back to normal. Going to try and do this everyday now and build up some form of fitness. Hopefully it will help.
I was on Amytriptaline then Gabapentin but they didn't touch it. Now on pregabalin. Also take codeine and paracetamol but don't think they do anything either. Bought some cbd capsules the other day, might have to up the dose though.

I'm sat up now not knowing what to do, can't get to sleep yet feel so tired.

I know its not nice but its comforting to know one isn't alone.
Click to expand...
Hi @Jasesonix I forgot to put this in my other post….if the tens is helping just when you wear it the wireless one might be of use to you more as you don’t have to faff around with wires. They seem to sell them in Argos according to the net. So sorry to hear that you are in such pain.
 
Hi.. we sound similar at the moment. I dont go to sleep.. i just pass out now. Night times are still worse even tho i dont have a night time sleep cycle. I take a pain killer now every 3 hours but i really dont think they work at all. A tens machine can mask the pain while in use only. i keep notes on when it is good/bad and seems no real patten.
Mine started 2 years ago and i was in constant pain for just over 6 months. At about 2 months in the pain was getting to me to a point that i could not take it anymore. I had lost all hope from my Docs being able to ease the pain. Talking to others about it on this site and calling their helpline was the only thing that saved me on a bad night. I did find relief in a drug that i dont know if i can mention (not checked site rules). but i smoked it and it works.
Thoughout the next year things got better every week. I came off the pain killers and was just on Gabapentin half dose for that year. I still cound not go back to work tho as my legs were weak and 3 hours standing max. An MRI found an inoperable lump on my spine, between my spinal chord and spine, so this could be the cause of my weak legs.
2 weeks ago it all came back.. exactly the same as before. i am just trying to get the same relief
 
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Yeah services aren’t great at the minute. I had to push and push for meds, Literally called doctors every week. The tears were tripping me on the phone everytime. Felt like I had to beg for something to help the pain/sleep and ended up being prescribed a few days sleeping tablets and painkillers. It’s more frustrating when you’re not listened to on top of not sleeping etc or you’re told “it can’t be that bad”! If medical staff could physically feel the pain themselves I’m sure they’d be a lot more helpful. I had neuropathy long long before I knew what was wrong and rushed to hospital undiagnosed (T1D and in DKA) I sympathise with you’re frustration, I’m only now getting back to some sort of strength/feeling human again. This forum is great though for advice and just general ranting if you need it.
 
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