A sad story from the flog.

This sad state of affairs has been taken from page 10 of the flog 10 minutes ago. Only three very poor replies, which makes me wonder, is the flog of any use to the average diabetic. Clearly the membership over at the flog either don't care or are too frightened to tell the woman what she needs to be told. This person is in trouble big time and yet her post swiftly goes to page 10 and no real help offered whatsoever. This person could be helped and without swift intervention, amputations could be on the horizon. A tragedy at any age, but at 29 a complete horror story. What a pity so many people banned from the flog could have helped this woman big time.


"Hi I am fairly new to this but thought I'd come here to see if anyone could give me any advice / optimism.

I'm 29 and have had Type 1 Diabetes since I was 14. I've struggled for years to be able to control it, and developed some mild neuropathy in my feet in my early 20s, which until recently was controlled with a low dose of Pregabalin and never caused me any issues. In the last few months I've managed to really get on top of things and my control is better than it has been in years. However my neuropathy symptoms have suddenly changed and gone much worse. I can no longer tell whether things are hot or cold, sharp or blunt; basically there's very little sensation there at all now from the ankle down, although it's actually affecting my lower leg above the ankle too. There's no pain as there used to be so increasing the Pregabalin dose probably wouldn't help. I'm so scared about how this is going to progress and affect me in the future, so I just wondered if there was anyone else that has experienced this and if so how they manage it; It'd be even better to hear anyone's stories about how they've managed to improve things and regain some, if not all, of the sensation where numbness had taken over. No negative stories/comments please - I believe in the body's ability to heal itself so would welcome replies from positive people who share similar beliefs Thanks, Vicky"

http://www.diabetes.co.uk/forum/threads/loss-of-sensation-in-feet-29-and-scared-for-future.75049/

I guess the best she might get over there these days is Nobheads generic "See your HCP..." message,someone needs to be asking this poor lady about her current control and current diet,with the right diet and control,nerve damage can be halted and sometimes improved,at 29 she needs real help this minute.

Paul1976 wrote:I guess the best she might get over there these days is Nobheads generic "See your HCP..." message,someone needs to be asking this poor lady about her current control and current diet,with the right diet and control,nerve damage can be halted and sometimes improved,at 29 she needs real help this minute.

Exactly ! I will bet even money this person has gone the carb up and shoot up way all her diabetic life. Without getting her BG numbers as close as possible to non diabetic, she has little chance of a good outcome. Drugs will do nothing for her. She said "I believe in the body's ability to heal itself so would welcome replies from positive people who share similar beliefs"

The body can never repair itself when it is running high blood sugar numbers. High BG can destroy every tissue in the body, and very often does. This does not have to be, jeez nothing saddens me more than to read this sort of story. BTW where are the bloody mods over there, they are swift to ban, thread lock and delete members posts but do f**k all to help people in trouble. What use is a diabetes forum when the mods other than Ian know nothing about good diabetes control. Largest diabetes forum in Europe, it's shite.

I used to answer these Eddie. As a T2 though I am fed up with being shouted down on a T1 thread. Normally I go in and post anyway, but if I do it will be removed as dangerous information. I can't give the person advice on meds because I'm not T1. If I talk about LCHF I can't help her with cutting down her insulin, so I'm stuck. I did mention to the mods that this was the problem when they banned some really good T1's and a T1.5 who were always ready with good advice. I was told by the mods that there are plenty of knowledgeable T'1 s there to answer and it wasn't up to me to dictate that there should be an answer at all.

Silly me, I thought it was a support forum.

Well done Zand, I see you have been over there and posted. As you say none of us can ever advise on changing medication, no Doctor would do that over the net, but we can tell people what has worked for us, or not worked for us. At the end of the day many will not listen to us, which is a shame, that being said, at least we tried, nothing more we can do.

zand wrote:I used to answer these Eddie.  As a T2 though I am fed up with being shouted down on a T1 thread.    Normally I go in and post anyway, but if I do it will be removed as dangerous information.  I can't give the person advice on meds because I'm not T1.  If I talk about LCHF I can't help her with cutting down her insulin, so I'm stuck.  I did mention to the mods that this was the problem when they banned some really good T1's and a T1.5 who were always ready with good advice.  I was told by the mods that there are plenty of knowledgeable T'1 s there to answer and it wasn't up to me to dictate that there should be an answer at all.

Silly me, I thought it was a support forum.

Good post Zand! You've done your best with the way DCUK is at present and you've tagged some great members over there who know their stuff,hopefully they'll spot it soon.

The lunacy of the medical world!

I just checked out the drug that the OP mentioned.

Pregabalin is used for:

"Treating fibromyalgia or nerve pain caused by certain conditions (eg, shingles, diabetic nerve problems, spinal cord injury). It is also used in combination with other medicines to treat certain types of seizures. It may also be used for other conditions as determined by your doctor.

Pregabalin is an anticonvulsant and neuropathic pain agent. Exactly how pregabalin works is not known. It is thought to bind to certain areas in the brain that help reduce seizures, nerve pain, and anxiety." http://www.drugs.com/cdi/pregabalin.html

Don't you love it when you read "how pregabalin works is not known" and then " thought to bind to certain areas in the brain that help reduce seizures, nerve pain, and anxiety" Pray tell me what this is going to do, to repair damaged nerves in the feet? Zilch, all it is doing is masking the symptoms, it will never repair or stop deterioration. You can take morphine for a broken leg, but until the leg has been set, you are achieving nothing other than pain relief. The root cause is high BG the symptom is nerve damage, treat the root cause, not the symptom.

"How it works is not known"...I read that as Avoid,Avoid,Avoid!

**** so they've been feeding her drugs so that she gets worse and does nothing about it???!!! That's criminal! What ever happened to 'do no harm'?

Yes well done Zand, I hadn't seen that thread and like you I usually steer clear of T1 threads.

I also wonder sometimes if the hippocratic oath means anything any more.

I think they see posts like that as wasting space for proper threads like "3 word story game", "meet up for coffee" or "what's your favourite car" ones !
Seriously though, Zand pretty much nailed it. Many members are just too nervous to jump in and tell her what she really needs ! "Tell me what you're eating, BG levels, HbA1C's etc". So many times we've seen what's happened, edits, warnings & bans. Such a shame.

Some say, sometimes you have to cruel to be kind, have we got to the stage that telling someone the truth is cruel? I don't think so. The fact is, that women may well lose her feet or legs (I hope I am wrong) but it is gutless keeping your mouth shut sometimes. Sometimes you have to speak or act and not worry about the consequences.

BTW I was having a nose around over there earlier and the OP was logged in for sometime and was on Zands post. It may be the person knows the answer to her problem, but chooses to roll the dice. If that is the case a very sad situation. But Zand has done all she can do.

As predicted by Paul, the great sage Noblyhead speaks.

"I would go back to your Dr's and ask to be referred to a specialist as Flowerpot and RRB have suggested. Good luck."

If her medics were on the ball, this poor woman may have never got to the position she is in. Nice to that old Gangster Dillinger helping out over there.

Good old Nobhead, the greatest adviser of non advice ever !

mo1905 wrote:Good old Nobhead, the greatest adviser of non advice ever !

Almost 16,000 posts, mostly noise, a total asset to the diabetes community, err not. That being said, top notch mod material for the flog.

To be fair, the flog has been flooded with posts from a couple of newbies in the past few days asking a series of sometimes hypotheticals, I assume just for the hell of it and to seem relevant? One after another after another. I've been skimming the place because I'm sick of being flooded with basic questions. No wonder a really serious question got missed. Great work Zand and the others who answered.

I'd find it really hard to respond to a thread like that as the poor woman appears to be facing a pretty bleak future and has been severely let down by her HCPs to allow things to get this bad. I hope she is able to overcome it, but have to admit, as a Type 2 I feel pretty helpless in the face of those types of issues.