Frustrated

[Shushanna]

Hi, although I have checked the forum from time to time I have only just signed up to join. I was diagnosed with Type 1 almost 5 years ago, late onset as I was 61 at the time and with no family history of either Type 1 or 2. That the diagnosis shocked me completely off balance is an understatement and only made worse by being forced to interact with the medical profession whom I have always avoided like the plague - with very good reason. It quickly became clear that I was being given conflicting advice even at times by the same person at different appointments! It was also clear that while paying lip service to the fact that diabetes affects individuals in different ways, "they" only seem able to operate on a "one size fits all" basis. As a result I rely on my own research and experience to control my diabetes. I have bloods taken twice a year so that I can monitor my condition and sort the rest out for myself. I have also had ME for 40 years which complicates matters and leaves "them" at a complete loss. Until the diabetes the ME symptoms were mainly fatigue with occasional attacks of myalgia and myelitis, but since then the myalgia and myelitis is present to some extent most days. I was initially told by the consultant that there could be no connection between the ME and diabetes, this despite both being autoimmune diseases. However this claim was retracted at the next appointment after I quoted research in the US! Does anyone else on here with Type 1 have ME? If so what has been your diabetic team's response?

 

[grovesy]

Welcome.

 

[Pumper_Sue]

Does anyone else on here with Type 1 have ME? If so what has been your diabetic team's response?

No matter what condition you have it will always be diagnosed as "it's your diabetes".
I went all through the it's your diabetes then as no one could be arsed to look any further ME was diagnosed, then after scans it was changed to TM and now it's MS. any problems though it's still classed as it's your diabetes 🙄

 

[Wirrallass]

Hi, although I have checked the forum from time to time I have only just signed up to join. I was diagnosed with Type 1 almost 5 years ago, late onset as I was 61 at the time and with no family history of either Type 1 or 2. That the diagnosis shocked me completely off balance is an understatement and only made worse by being forced to interact with the medical profession whom I have always avoided like the plague - with very good reason. It quickly became clear that I was being given conflicting advice even at times by the same person at different appointments! It was also clear that while paying lip service to the fact that diabetes affects individuals in different ways, "they" only seem able to operate on a "one size fits all" basis. As a result I rely on my own research and experience to control my diabetes. I have bloods taken twice a year so that I can monitor my condition and sort the rest out for myself. I have also had ME for 40 years which complicates matters and leaves "them" at a complete loss. Until the diabetes the ME symptoms were mainly fatigue with occasional attacks of myalgia and myelitis, but since then the myalgia and myelitis is present to some extent most days. I was initially told by the consultant that there could be no connection between the ME and diabetes, this despite both being autoimmune diseases. However this claim was retracted at the next appointment after I quoted research in the US! Does anyone else on here with Type 1 have ME? If so what has been your diabetic team's response?

Hi Shushanna and welcome - I'm sorry to hear about your health issues and as I have no knowledge of ME I'm unable to help you there, I'm sorry - no doubt others will when they read this thread. Good luck & take care x
WL

 

[Amigo]

There seems to be so much many medics do not know or care to explore issues relating to the link between diabetes/ME/fibromyalgia and systemic inflammation but even anecdotally on this site, I've been struck by the number of people reporting symptoms of clear overlap. I found this article incredibly interesting and this extract from it particularly struck me (you may already know of this article);


'Most of the attention in diabetes is focused (and rightly so) on the devastating effects that high blood sugar can cause, but what is often missed is the fact that untreated diabetes is a state of energy deficiency. After all, if insulin does not move glucose into the cells, the cells lack the energy they need to function properly.'


https://www.healthrising.org/blog/2...ell-us-chronic-fatigue-syndrome-fibromyalgia/


Keep on being your own patient advocate Shushanna because sometimes we have to. I agree that there's too much of a prevailing attitude of 'one size fits all' with some (not all medics) and it's frustrating dealing with people who view self knowledge as some kind of hysterical response to real symptoms.

Thankfully ME doesn't afffect me personally (I have a quota full of health issues already) but I understand the points you make for other reasons. Best wishes.

 

[trophywench]

I asked Pete's oncologist if something only recently published about prostate cancer, applied to him. He was gobsmacked - Gosh! - you're well informed, aren't you? Yes I said of course I am - what else would I be - when this affects me?

I like younger consultants - they are far better at accepting that - and once they know you already knew whatever - treat you accordingly ie by consensus rather than by dictation.

 

[Shushanna]

Many thanks for your responses and for endorsing my self help approach to dealing with my diabetes. I am sure there must be members of the medical profession out there who are more open-minded but unfortunately I have only met those who either assume an authoritative stance - "I know best" - or the condescending/patronising ones, both types treating you like a mentally retarded 3 year old. You would think that they would be pleased that we are engaged enough to research our condition and so contribute to our treatment, but no. As I have told various members of the diabetic team, "I am experiencing and living with this disease, you are merely observing it". Doesn't go down well but that is their problem. As for add-on conditions, 2 years ago, almost overnight, my face erupted in a red rash which became worse until even I was forced to go to the surgery. Big mistake, I was prescribed a high dose hydrocortisone cream which made it ten times worse - serum was oozing from my face and I looked like the victim of an acid attack. I didn't go back. Months later the redness had subsided but left small lumps and bumps. After much research I found the cause, another auto immune disease papulopustular rosacea commonly called acne rosea and (big surprise) linked to type 1 diabetes. Blank looks when I mentioned this at my next diabetic appointment. Again, some weeks ago I developed trigger thumb and very painful it is too and apparently it is far more common in diabetics. As treatments for the condition is a splint support, followed by steroids and last resort surgery, and as I don't want to take steroids nor accept the risk of surgery leaving me worse off, I have immobilised it myself and can live with that. I apologise if I am going into too much detail here but it is in the hope that it may help someone else connect dots to other conditions they may have. Doctors are far too narrowly focused on their own speciality, forgetting that all parts and systems of human physiology are closely connected.

 

[Bill Stewardson]

Hello to Shu.

 

[Lucy Honeychurch]

Hi and welcome 🙂

 

[Shushanna]

Must have missed Pumper_Sue's reply earlier - I have the opposite problem Sue in that my medics are reluctant to accept any connection between diabetes and my other conditions. Perhaps on the basis that by doing so it places the other conditions outside of their remit therefore they don't need to address them. Moot point really as there is no treatment for the ME - which began 40 years ago before it was even recognised as a disease - or for the acne rosacea - thank heavens for cosmetic foundation! It has always seemed to me that if "they" don't have any answers as to what or why something is wrong with you, then as far as "they" are concerned there is nothing wrong with you. Oh, forgot to mention that I was also found to have hypothyroidism, it showed up in the blood tests done when I was first diagnosed with Type 1 so am on 75mgs of Levothyroxine for that.

 

[trophywench]

Just wanted to add I know a fair few people who've had surgery on trigger fingers and thumbs, diabetic or not - and all have had successful outcomes.

They always have to say it might not work and warn everyone routinely that you may die under general anaesthetic for anything we may need one for cos they HAVE to tell us everything that's a risk, these days. So I ask What's the overall prevalence of this problem? How many this hospital has treated have had a problem? How many people you've treated has had a problem? - and sit and wait till I get a sensible response that sounds honest!

 

[Shushanna]

Thanks for the response Jenny. As the surgery for trigger thumb is done under local anaesthetic the risk is that they may cause more damage and leave me worse off than before. As for waiting for an honest response, sorry but I simply don't trust medics. I have never had a large circle of acquaintances but I could write a book on the times "they" made a mistake, got it wrong or just plain ignored peoples' concerns until it was too late. As in any other walk of life there will be good, bad and indifferent medics, unfortunately we don't find out which type we have drawn until it is too late.
Apologies to any "good" ones out there reading this but I am sure you know even better than I that what I say is true, and that you are aware of colleagues who fall into the bad and indifferent category. Acquiring medical knowledge does not mean you have the wisdom to apply it correctly, nor does a medical degree confer any qualities of character, morals or principles.

 

[TheClockworkDodo]

Hi Shushanna, and welcome 🙂

I've had ME for 25 years and was diagnosed with type 1 diabetes in 2011 - out of the blue, with no history of any autoimmune disease in my family. Diabetes consultants by and large have been shockingly ignorant of ME, and some have wanted me to do things for my diabetes which would have been seriously harmful for the ME, and I've had to refuse. DSNs on the other hand, have been lovely, very understanding, very helpful, much more in tune with the idea that a) it's possible to have more than one condition at a time, and b) I probably know more than they do about managing my own illness(es). I think things are changing slightly, in that recent ME research makes it pretty clear that ME's an autoimmune disease too, so medical professionals generally are less dismissive about it. Or maybe it's just that I've moved house and have a new consultant, who is better! I like to hope it's the former. Certainly when I talk to nurses, they are aware of the research, if not of the details.

 

[TheClockworkDodo]

I meant to say, while general anaesthetic's bad for ME, I've had minor surgery with a local (done by a GP at my local surgery), and it was fine. A local anaesthetic should be OK for ME so long as they will use one without adrenalin, and not use any muscle relaxants with it. It was also great for me that they did it at the surgery, so it might be worth your finding out if there is a local surgery where they will do this (it doesn't necessarily have to be your own surgery - I've had a couple of scans at a different surgery to save me having to go into hospital). But having said that, when I was diagnosed with type 1 D I had DKA so I was rushed to hospital - obviously not a great environment for ME, and I didn't expect anyone there to be understanding about it at all, but they were great - I came out feeling much better than I had when I went in.