Hi, I'm New,,, had enough of everything!

Xxlisaxx

Newbie
Messages
4
Type of diabetes
Type 1
Treatment type
Insulin
Hi everyone,,, im totally new here, and im hoping by joining this site I might meet others like me, totally had enough of my life and lack of good health!
I've been type 1 since I was 13... 30 years... Control has always been up and down NEVER stable. HBA1C always too high... Had carb counting sessions to enable to me to have an insulin pump,,, then my doctor changed and he refused it!
I am on four injection a day, 3 of Novo Rapid and night time Glargine/Lantus.
When I was pregnant with my second child, I developed pain mainly in my legs... Unable to take anything I spent months in agony!!! When my Daughter was born I went to hospital for nerve conduction tests. I was diagnosed eventually with neuropathy... And have been on Tramadol and Pre Gabalin ever since (9 years ago)

I cut my foot and it wouldn't heal, on the ball of my foot and for two years now treated for a foot ulcer. In and out of hospital seriously ill and eventually my foot became so weak, all five metatarsals snapped literally overlapping. They wouldn't xray me I kept telling podiatrist it wasn't right, pain in foot and swollen like a balloon, all she did was say it was cos of my foot ulcer,,, after walking for around a month in agony my GP sent me for an xray which revealed the breaks, but it'd been so long they mended overlapping!!my foot is now said by specialist to be Charcot Foot Syndrome. It's deformed badly, I cannot move my toes,,, pain is horrendous and that's with nerve damage/numbness

I was put into so many different casts and ended with a boot cast to keep weight off my foot... Didn't really work and I've been going for dressing changed on hole in my foot for 2 years, 4 months, every week!!!!! It just will not heal even though my sugars are well controlled... I am sick of the podiatrist dressing it every week with Aquacell Foam, then me fix tape!!! It's doing nothing to help and all she says it, it's me that won't heal and nothing she does will heal it... Totally had enough!! I'm taking my Daughter on her very first holiday abroad in October and won't be allowed in the pool or sea!

Pain from neuropathy is agonising, too bad,,,, started with more symptoms, eg: headaches, staring blankly, can't think straight, can't remember what to say, forgetting words! Ended up having more tests and I've been diagnosed with Fibromyalgia now too!!!

Wow what a depressing post!
I am just 43 and can't work, can't do much physical and walking to the park over the road is a struggle so my Daughter suffers for my illnesses !!!

I'm in constant pain, get up in mornings feeling useless x
 

jack412

Expert
Messages
5,618
Type of diabetes
Type 2
Treatment type
Tablets (oral)
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Reactions: 5 people

lizdeluz

Well-Known Member
Messages
1,306
Type of diabetes
Type 1
Treatment type
Insulin
Hello Xxlisaxx, and welcome to the forum. I'm sorry you're having so much pain and discomfort. I've been T1 for roughly the same amount of time as you, though I was diagnosed at age 29. I'm on NovoRapid and Lantus, same as you. I get lots of aches and pains, just about everywhere, and broke 2 metatarsals just by getting up in the morning - I felt them go - I went to the GP, told to rest, returned, sent for X-ray, broken bones discovered ... Wore a fracture boot for a couple of weeks, and then was ok. But I reckon, like you, I'm facing the complications of long-term diabetes, and the only thing I can do to keep them at bay is to watch my diet, watch my weight and BMI, and try to keep my blood sugar control between 5 and 7. Sounds simple but it's too difficult for words....
Anyway, thought I'd say Hi and that there's many people on the forum with problems like yours, who may be able to help and make suggestions on how to improve things a bit. How well controlled is your blood sugar? Do you do about 4-6 tests a day? If you are constantly suffering from high blood sugar, maybe get your GP or diabetes nurse to help you with that?
 

Flowerpot

Well-Known Member
Messages
424
Type of diabetes
Type 1
Treatment type
Pump
Hi @Xxlisaxx

I'm so sorry to hear what a horrid time you are having with diabetes. I get your absolute frustrations with the long term complications it can bring and how badly they affect all aspects of your life. Can you ask for referral to a pain clinic as constant pain can affect blood sugar control and there are some good ways of controlling it.

I have got Charcot in both feet, like you my mid foot collapsed and was mis diagnosed as a sprain so I kept walking in agony and all my metatarsals fractured and displaced and are deformed, my ankle joint also collapsed completely on the same leg. Currently I have both legs in casts due to ongoing fractures. My control is good but I am unable to break out of the destructive cycle of Charcot and fractures.

It is incredibly hard to avoid damaging the skin over the protruding areas of bone as you put pressure on the wrong parts of your foot . I use morphine patches (Fentanyl) when my pain is too much and that has helped me to manage a bit better although I don't use them all the while as morphine is addictive and I don't need any more problems!

Sadly ulcers in a Charcot foot can take years to heal. I have had a couple of operations to put skin grafts over the broken areas and both grafts helped to heal the area and for the past few years I have had intact skin.

Can you try using a cast cover for your leg to enable you to go into the pool and sea with your daughter? I have used them before - I got a few odd looks with a bright blue leg- but so what!, There are a couple of makes which cover your leg to above the knee even if you don't have an Aircast /cast on and are suitable for swimming. It might be worth having a look on the internet for a cover just to enable you to enjoy the holiday without getting all the dressing on your foot wet. Good luck.