# newly diagnosed type 2 with ehlers danlos



## bliss

Hello All
I am 49, female, married with two 'grown up' children, daughter 24, son 21, 2 cats & a needy rescue staffie. Strange to write here about me! I suppose I've given a little background info, as have been reading through the forum for the past week & everyone seems honest & genuinely supportive that I feel comfortable enough now to say hi. It has been a shock frankly being diagnosed with diabetes & right now I feel as though this is a bit much as I alsohave ehlers danlos (EDS). I wonder if anyone else here has both also? 
I want to say thank you in advance if in these first stages of attempting to come to terms with this new diagnosis, I ask dippy questions or am a little needy! I hope over time I will be in a position to offer support myself to help balance the scales. Truthfully I am surprised to have diabetes, I eat a pretty healthy diet am not overweight. I am short though, 5ft, classic apple shape, (so apparently more likely to get diabetes) really skinny legs, arms, slim hips, no waist, never had one, top heavy. Exercise or lack of it could be a factor as am a full time electric wheelchair user. I am a glass half full person & if I can deal with the Ehlers Danlos I am sure I will do the same with the diabetes. Right now I am a little overwhelmed. Anyway that's quite enough about me!


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## Fluffy Jo

Good Morning Bliss and welcome to the forum
Ive only been here a short while and you are right that everyone here is very supportive...so any dippy questions ...ask away!Good luck with everything and im sure you will be fine x


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## Bloden

Hiya Bliss, and welcome.


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## jalapino

A warm welcome to the forum Bliss 

Take your time and have a look through some of the threads and links on the website.

Friendly bunch this lot!


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## HERE TINTIN

Hi Bliss welcome to the forum, from the sounds of it you will cope really well once you know all the ins and outs of it all. Ask away, looking forward to your posts....TinTin


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## KookyCat

Hi Bliss
Welcome to the forum, everyone here is really helpful and they've helped me through a difficult few months (I was diagnosed with type 1 in January).  I have EDS too, but I have what used to be called type III (and a few years before that joint hypermobility syndrome), and now is called hypermobility EDS.  I'm guessing you probably have classical EDS?  It doesn't normally cause me massive issue although I do have some joint damage and lovely varicose veins I've had since my early 20's, and the obligatory IBS.  I lost lots of muscle mass when I got DKA so I'm currently feeling the wrath of my joints with some force, I find myself cursing the EDS at those times because the need for that extra muscle mass makes for slow going with recovery 

It is all really overwhelming to begin with, especially when having to deal with other conditions too, but I've found the forum absolutely invaluable.


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## twotwo

Hi bliss I would just like to say welcome .Iam a new to the site too .you have replied to my post thank you it was very kind and you sound a lovely person with so much to deal with. I joined as i needed advise about my partners driving license and everyone is so helpful keep in touch


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## Flower

Hi and welcome bliss


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## Copepod

Welcome to the forum, Bliss. Unfortunately, being normal weight and as active as possible is no infallible protection against getting type 2 diabetes, as genetics plays a large role, as in giving you your apple shape. However, you might have delayed inset and given yourself more diabetes free years.

As with EDS, the huge part of dealing with type 2 diabetes is down to the person with the condition. So, ask away, both on this forum and to health care professionals you encounter.


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## bliss

Goodness me thank you all so much for your replies, all much appreciated. Kookycat, I was diagnosed over 25 years ago now with EDS hypermobile type by Prof R Grahame at UCHL. I have managed until the last two years without using electric wheelchair. Hope you don't mind me asking but has it ever been suggested that your diabetes is linked at all with the EDS? Exercise is going to be a challenge, swimming is a no no due to difficulty regulating body temperature. I have been advised by physio not to. Its unfortunate that hydrotherapy is also difficult as the warmer water has proven with me to increase at least in my case of EDS to cause tendons etc to stretch further increasing therefore injuries/dislocations. Rock & hard place spring to mind! Tweaking diet is something I am less frustrated about. So any suggestions would be gratefully received regarding possible exercise options. GP is aware this is a major issue and has no suggestions. If this thread should be elsewhere now after my hello, someone please do say as am just getting my head round the forums.


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## Copepod

This post is in just the right place. You're welcome to start a new thread in Food section or General Messageboard, if you like. Perhaps ask about diet there. Eg replacing high carbohydrate foods with lower carbohydrate ones to control blood glucose or substituting lower calorie foods if you want to avoid gaining weight. All depends what you like to eat and when. Eg advice for packed lunch is different to what you could eat at home.


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## KookyCat

Hi Bliss

Nobody has suggested yet that they might be related, but it also never occurred to me to ask either of my consultants, but maybe I'll ask one or both and see what they say.  I have to be careful with swimming too, because it encourages my wonky hip to dislocate, but I've been extremely lucky so far and managed to avoid major issues.  My feet are a right pain but as I'm sure you know hypermobile feet and shoes are not a good combination 

Do you think they might be related?  The EDS and Diabetes I mean?  I don't know about you, but I learn something new about EDS every few months, like just recently the Optician told me it was the reason why my astigmatism keeps changing axis, stretchy tendons round the eyeball apparently 

I don't know too much about diet yet but I'm sure lots of people will give you great tips, and I know there's a recipe section on the message board with lots of lower carb options.  Let me know if you discover a link between the two conditions.


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## Pumper_Sue

Hello Bliss and a very big welcome to the forum.


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## bliss

Hi again
Two Two thanks for your lovely message will reply more to yours in driving as soon as can.
Kookycat I can't seem to find any link with the EDS but am betting there is one somehow! Although I am only type ii db & your one. That must have been a shock indeed. Snap with varicose veins I had my stripped prior to diagnosis! Aged 22 years unfortunately surgeon severed a nerve near ankle which on & off has been painful but since diabetes the nerve pain there has been dire. I do take Lyrica for PHN in fifth cranial nerve and have read there is some who take it whose glucose readings rise but am unsure if that's correct or not. I may post independently on that for simplicity's sake elsewhere! All I know is the diabetes seems to have been not diagnosed as some of my symptoms were thought to be due to EDS.

Because of the EDS I do have delayed gastric emptying (gastroparesis) eek sp . I have read somewhere that some with diabetes have this issue? But wonder if that in itself can cause blood sugar stabilisation difficult.

Anyway before I hog the message boards... I have one more question for now.

My ac1 was 11.5.  My first hbac1 was 9.5. My second hbac1 was 8.0.  I am seeing the diabetic nurse for first time next week. Long delay nearly a month from diagnosis to that slot.
I bought an accumeter from chemist & have been testing at home.  Most mornings my before breakfast readings range from 7.5 to average 12.5 to 14.5. The other morning 25.5.  

2 hours after breakfast average meter reading is 8 to 15
After dinner readings can be as high? as 12.5 to 24.5
Sometimes it feels as though the healthier the meal the higher the reading!

Anyway my question is this. The GP is choosing not to medicate I feel as though it may help.
My hbac1 results seem quite low compared to my quite high meter testing. Is this normal?
I do have understand what the hbac1 test is & the meter readings at home. The pharmacist whom I have known for years who knows me wonders why no diabetes medication? I don't aim to test so often for ever just whilst I am learning what food works for me.

Does anyone have any ideas please on the medication or lack of it. Then lastly do my hbac1 results correlate properly with my often high? home meter reading?
Please be frank if I am completely barking up the wrong tree. I need to get my head round all this.


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## KookyCat

Hi Bliss
I think we need to have a good old chat with our bodies and sort them out!  Finding out I had type 1 was a complete shock since I didn't even know you could develop it at the grand old age of 40   My dad had type 2 and when he was diagnosed I changed my eating habits etc to try and avoid getting it.  I lost nearly ten stone (I gained a lot of weight after being told I couldn't run, do aerobics or dance because of EDS issues, I always had a hearty appetite but was very very active).  In fact I swore at the consultant when he said type 1 and I never swear, talk about ironic.  I did a bit of thinking after you posted last time and did wonder if the reactive hypoglycemia that I had was related, but I honestly don't know.  I did read that EDS is considered autoimmune in some quarters, type 1 is autoimmune and some researchers have suggested type 2 might be as well, and they keep telling me that if you have one autoimmune you are more susceptible to others [gulp].

There are folks on here with gastroparesis and I think it does affect glucose readings so I'm hoping one of them can explain it because I don't exactly understand it.  Those blood sugars from your meter do seem high to me but I'm very new to this!  What I can say is don't let anyone tell you that type 2 is less serious than type 1, they have different daily challenges but the end results are the same.  My dad's sugars were lower than that and he was medicated so maybe you should take your readings to the doctor and talk it through?  When my sugars were as high as some of those (high teens, and twenties) everyone was quite concerned about getting them down.  Diet is really important though, because carbs make blood sugar spike and the dietary guidelines we're given include a lot of carbs.  It's a big learning curve I've discovered but I'm getting the hang of it now and you will be surprised how quickly it all starts to make sense!


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## Northerner

bliss said:


> Does anyone have any ideas please on the medication or lack of it. Then lastly do my hbac1 results correlate properly with my often high? home meter reading?
> Please be frank if I am completely barking up the wrong tree. I need to get my head round all this.



Hi bliss, I must admit, I am surprised that you have not been given any medication. To answer your query about your HbA1c versus morning readings: they are not measuring the same thing, so cannot be directly compared. The morning tests you are doing are a 'snapshot' of your levels at that instant and will be influenced by a variety of factors. The HbA1c is more of (but not exactly) a long term average of your levels over the 6-12 weeks prior to the test and give an indication of your long-term control. Ideally, your HbA1c should be 6.5% or less and your waking/pre-meal levels between 4-7 mmol/l. Remember though that these are ideal levels and you have just been diagnosed, so don't expect to have levels like this at the moment, they will take time to achieve.

The gastroparesis will also affect your levels as the slow gastric emptying will make post-meal levels erratic. It is a complication of diabetes as the nervous system can become damaged by prolonged high blood sugar levels, and this can affect the vagus nerve.

It's good that you are testing in order to determine the effect of different food on your levels. Make sure you follow a systematic programme of testing to make each test count - have a read of Test,Review, Adjust by Alan S  for a good example of efficient testing. A food diary can also help you identify the amount and type of carbohydrate in your diet so you can look for areas that might be improved by reducing or replacing portions e.g. less potato and more green veg. Record the amount of carbs in everything you eat and drink. Diabetes is all about carbs - they are what case your blood sugar levels to rise. 

Do you have the book Type 2 Diabetes: The First Year by Gretchen Becker? If not, I would recommend getting a copy.

Going back to medication, sometimes the GP will initially let you see what you can achieve by modifications to your diet and activity levels before introducing medication, usually for a period of 3 months. However, given your high HbA1c I would have expected some medication from the start - it may be worth seeking a second opinion from another doctor if possible.

I hope this helps, if not please ask any questions you may have! No question is considered 'silly' - if it is confusing or confounding you, ask!


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## 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 wheelchair or 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 seems to 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 waking isn'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 stomach acid & 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 digestive system, 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


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## CathyB

Hi Bliss, welcome


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## Robin

Shazza1uk said:


> So hello to you all .... I'm Sharon btw


Hello, Sharon, and welcome to the forum, I'm afraid I can't help, but wanted to make sure your post didn't get lost. I wonder if it would be better if it was started off as a new thread, so more people will see it. @Northerner , our lovely admin man can probably do this for you.


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## Shazza1uk

thank you, that would be good if he could I did try to post a thread but I clicked send & it vanished into the ether lol


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## Hevski

I just read this post on Google. And just had to join and comment. I have been diagnosed with Diabetes type 2. About two years ago. I'm not on medication yet, though my blood sugars shot up recently, so I need to bring them down again.

I have EDS III (hEDS) of course there is no formal diagnosis available yet, they're still making the genetic test..  I also think I have Mast Cell Activation Syndrome (look that one up too).

I have been having such issues with food, lately... Like bloating, cramps, bad reactions to food. And I've finally come to terms that I might be suffering because of Gastroperisis... I've always loved big meals, big portions, and my body just can't handle it anymore. I also think I have Diabetes because I've done it to myself by not drinking enough fluids and eating a lot of chocolate and whole orange juice. I don't drink tea or coffee.. Anyway, I finally have realised. I just can't eat the same. I have so many issues with food. Like I can't eat onions and things like that anyway, without the Diabetes...

So I'm going to become a grazer, I already have been a bit. I've started to eat nut and soya bean mixes.. (Soya is supposedly good for chloresterol). I'm just a little bit wary as nuts are high in fat, so how can they be good for you? I could do with less salt on them anyway. I have thought of making my own but nuts are so expensive.. I've been eating cheese triangles, lol... And small pieces of meat.. I really want to get a juicer too...

I really do think there is a link between Ehlers Danlos Syndrome and Diabetes. How could there not be...


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## Drummer

A lot of the advice on 'healthy' seems to be making people ill - or sometimes very ill.
Carbohydrates are the cause of high readings after meals, so swapping the dense starches and anything sugary - which includes fruits - for low carb foods can reduce blood glucose to normal.
I can't give any advice on how to eat with other conditions or even complications of diabetes, but carbs are the basic problem.
Proteins and fats are the basis of my diet - fats are actually essential and can replace glucose as fuel for life.
I don't eat legumes, as peas and beans send my BG higher than would be expected form its declared carb content.


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## SueEK

Hello Bliss, hello Shazam’s, sounds like you have an awful lot going on at one time but how positive you both sound, puts me to shame. I was diagnosed in January and it came as a shock, like you Bliss I am slim and never been overweight though I am 5ft 9in. As others have said low carb seems the best way forward.  My HbA1c started at 90 and is now 51 that is in 3 months and that is mostly down to diet, although I am on Metformin, hoping to get this reduced this week. I don’t know how your EDS affects your digestion, if at all, but if you can reduce carbs this will really help you. I also test to see what foods particularly don’t like me and we are all different where this is concerned, if you can do this it will give you a good idea of what really to avoid and where you can get away with other things. 
I wish you well and by all means ask anything you want, we will all do our very best to help. X


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## mikeyB

Hevski said:


> I really do think there is a link between Ehlers Danlos Syndrome and Diabetes. How could there not be...


Hi Hevski. There isn’t any link between EDS and Diabetes. EDS is a connective tissue disorder caused by chromosome abnormalities. Diabetes isn’t. Completely unrelated. Type 2 Diabetes is common, and it’s just as common in folk with EDS as in the general population.


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## Hevski

mikeyB said:


> Hi Hevski. There isn’t any link between EDS and Diabetes. EDS is a connective tissue disorder caused by chromosome abnormalities. Diabetes isn’t. Completely unrelated. Type 2 Diabetes is common, and it’s just as common in folk with EDS as in the general population.


They might not have found a link yet. But they might in the future.. Are you a Doctor? If not how can you know for sure there isn't a connection... Not saying that if you have Diabetes, you're going to get EDS. No.. It's not like that. But those with EDS have other comorbidities ... That many would not necessarily have connected with it.  Like Fibromyalgia, Depression, IBS, Gastroperisis, Endometriosis. Aspergers Syndrome even... 
Gastroperisis is as much as a problem for those with EDS who don't have Diabetes, as much as it for those who do. 
There's also Mast Cell Activation Syndrome, and they've done a study of that. And many with that have comorbidities again with other conditions, one of which is Diabetes type 2...


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## mikeyB

Yes, I was a doctor before retiring. And of course EDS has comorbidities related to connective tissue problems, gastric and bowel. I would prefer to call them symptoms. Depression goes with any chronic condition. But Aspergers cannot possibly be caused by EDS. It’s physiologically impossible, though there’s no reason why someone with EDS can’t have Aspergers. Both are established at birth - or before. 

And like Diabetes, Aspergers is no more common in EDS than in the general population. When Diabetes does occur, you can call it a comorbidity, because that’s what it is. But it’s not caused by EDS. Or Mast Cell Activation Syndrome, which has not yet gained the general acceptance that it’s a disease. I get a lot of Mast Cell activation in Spring. That’s hay fever.

It’s dangerous thinking that everything you ever get is due to EDS, serious conditions can be missed with that mindset.

I know it’s difficult sorting out the info on the Internet, particularly if you’re not familiar with human physiology,  or the causes of disorders, which happens to be one of my areas of expertise.


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