Hi all Diabetes type 2 & Ehlers Danlos Type 3

[Shazza1uk]

Hi all I'm 53 years old & was diagnosed with diabetes type 2, 2 yrs ago having slept for most of 2016, I was literally sleeping round the clock & put it down to changed pain meds. I have EDS type III as it was called & was diagnosed aged 30 by Professor Sturrock & Professor Ferrell at GRI Centre for Rheumatology research which is part of Glasgow Uni. I was later diagnosed with Fibromyalgia
followed by a whole host of other nasties or comorbidities to use the correct term . 3 weeks ago my GP put me on metformin simply because my diet was already healthy & I can't exercise I'm in my bed or my wheelchairor an armchair due to the EDS causing an unusual/rare problem, it's causing my diaphragm muscle to fail, I'm now a frequent flyer on ambulances to a&e which usually results in a couple of weeks in hospital. During my stays I'm a prize exhibit as the physiological tests they do had only been done twice before at the hospital. They've now been done 7 times & each time shows the deterioration in my diaphragm muscle. So the breathing problems mean I can't exercise or do anything really, I was already in a bad way with the EDS, I can't do much with my hands as my fingers dislocate so often & the fibromyalgia seemsto flare up at the slightest thing, without rhyme or reason. So my blood sugar has been running very high indeed 22, 23 is not unusual & even 17 on wakingisn't unusual but last week one morning I woke up an it was 6.2 .... 6.2 that was brilliant ... but perhaps a fluke as it hasn't happened since. I tend to live on foods that are soft easy to chew as I had an oesophegal fundiplication (might be mispelled) because stomachacid & undigested food was choking me, turned out that it was due to digestive paralysis from the oesophegus down, its mostly gravity that moves my food through my digestivesystem, so soft easy to swallow foods are what i live on. Breathing problems mean I get so tired trying to chew & breathe I actually fall asleep while eating if it involves chewing so meat isn't a huge feature in my diet these days. my favourite is a Caesar salad or if my daughter's home she will make my recipie for goulash. I can't cook & 1 of my sons lives at home & he tries bless him but he's more a shove it in the oven type of cook or pasta .... he's good at pasta. My mum & my son are my main carers but my other son (theyre identical twins) is in the army & he comes home every 2nd weekend to give his brother a break. My daughter comes home whenever she can usually once or twice a month for a couple of days & she too has EDS but it's not too problematic for her at the moment, it wasn't for me when I was her age, I hurt a lot but I just thought everyone else did too. I used to think I was clumsy & had some nasty dislocations but they were accidents. Anyway where was I (I'm forever going off at a tangent) Ioh yes a healthy diet & exercise weren't working & I drink water lots of water but my blood sugars werent coming down so im on week 3 or 4 of metformin & I'm now on 3 x 500mg a day. Anyway I woke up this morning & got a fright at the colour of my urine it's dark Brown! That's how I found this website googling diabetes & dark urine & then I thought I wonder how other people who have EDS & diabetes cope & here I am .... So hello to you all .... I'm Sharon btw x

Today at 4:13 PMEditDeleteReport
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[TheClockworkDodo]

Hi Sharon, and welcome 🙂 - sorry to hear you are struggling with clashing illnesses, I know the feeling as I have ME and my diabetes is secondary to that, and often what I need for ME is the opposite of what I need for diabetes. I can't exercise much either, but I've found that resting actually lowers my blood sugar - I think the stress of trying to do too much raises it, and when I lie down my body recovers, so that's not too bad for my diabetes. I'm also lucky enough to be on insulin rather than Metformin though, which must make a difference!

I have friends with EDS, including one who's on soft food like you - she exists on scrambled eggs and stewed apple, I think, together with some of those gloopy protein drinks dieticians give you if you're underweight (she also can't eat meat and also falls asleep all the time) - but they mostly have ME rather than diabetes. I'm going to tag @KookyCat though, because she has both EDS and diabetes, though she's type 1 like me. I hope she'll see this and come along and say hello.

 

[Ralph-YK]

Welcome to the forum Shazza from a fellow T2. I don't know EDS. Difficult thing to have. Hopefully we can help sort something with your diabetes.

 

[KookyCat]

Hi Sharon
As clockwork said I do have EDS, but I’m classic with vascular involvement, which whilst considered one of the more dangerous types (because of the vascular involvement and the potential for organ rupture) doesn’t cause me as much trouble as the rheumatologists have always expected. I do have mobility challenges due to my extreme hyper mobility, but I’m extremely lucky to have compensatory muscle mass, which is the saving grace really (my muscles have adapted to keep my joints more stable). The diabetes on top is a tricky combination, because I have hyper digestion and all that extra muscle mass increases my metabolic rate even more so in many ways it’s the opposite situation to what most people with diabetes experience, I struggle to keep my blood sugar above the floor. When I was diagnosed I was extremely under weight and had started to lose muscle mass so was reliant on a walking frame for 12 months, but thankfully I managed to recover most muscle mass.

Enough about me, how are you feeling generally with it all? EDS can be a challenge at the best of times but high blood sugar must be making you absolutely exhausted . Have they considered insulin for you, given your restricted mobility and healthy diet, it might be something to talk to them about, I’m not a doctor obviously but don’t be afraid to ask them about options. If you have complex conditions sometimes a non standard approach is more useful and as much as I love the NHS they’re a bit insular in terms of disciplines so they don’t always think holistically about how conditions interact. Is your rheumatologist up to speed on the diabetes diagnosis, if not get her/him up to speed, mine is great at helping me to look across both conditions and find the right answer. I’ll stop rambling on, just wanted to say hello and welcome aboard 🙂