Help Required

megan2002 said:

Hello I have been Diabetic since August 1993 and have type 1. I have fluctuating diabetes and suffer from severe depression , fatigue and severe daily bloating and constipation. I have been to GP several times for help however have got nowhere. I can't sleep well at night , are constantly tired have daily sore heads , poor concentration , poor memory , painful fingers hard to grasp , bloated stomach , heavy constipation , sore kness, sore legs and extremely tender sore feet. What do I do and where do I start ? I am extremely desperate as every day is a nightmare like groundhog day

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Hi,

sorry to hear your having an awful time

What are your BG's like? alot of those symptoms could be related to high BG's.

Do you go to your diabetes clinic for reviews?

You definately need help in starting somewhere, even if it's tackling one thing at a time, you may find as you do tackle one thing, it may help more than one issue.

For example if you can get better control of your diabetes then some of those sypmtoms may ease like your tiredness, and i would say definately constipation as that was a major issue with me when i had very bad control.

Do you take medication for your depression? i can understand depression can affect your motivation as it's affected me in the past and feels like a catch 22 sometimes.

Make an appointment to see your diabetes nurse, or specialist to dicuss your diabetes, and make an appointment with your GP, if you don't get anywhere see a different doctor until you find one that will help.

I've seen a GP in the past who i felt like was 'fobbing me off' i made an appointment with a different doctor and felt like he could be my best friend he was that nice and friendly, very patient.

Hope you get things sorted and they get better for you.

Hi Megan

I recognise the vast majority of what you are saying you are going through with how you are feeling, and I know personally how horrible it feels every single day..and with me it was all day...every day.....

However, there is light at the end of the tunnel.....however, it can take perseverance with HCP's to get yourself feeling better...and with yourself too...

For example...the first thing GP's and HCP's will see about you is your diabetes.....

so step one....TRY to get your levels balanced....if they aren't get help to get them balanced.....my best thing to get my levels balanced was with the help of my DSN who got me on my pump last year...and although some ups and downs...I actually feel so much better than I have ever done in 25 years!!!!

Step 2...you have to get some hcp on your side as to your depression, fatigue, pains etc.....yes they can all be linked to diabetes, but they can also be linked to other disieases.....I was wrongly diagnosed with pernicious anaemia for 3 years +, wrongly diagnosed with palindromic rheumatism for 10 years +, and last year was given another diagnosis of fibromyalgia. I have had all sorts of bad times with a consultant wanting me sectioned, psychiatrists, depression, pain and all sorts of tests and tablets-altogether over 16 years now.....now with the fibro diagnosis my GP has tried varying different tablets for the depression and pain...and now found one that works..........Hip, hip hooray.......ask a GP that listens to you to do test for RF factor (rheumatoid factor)- mine 10 yrs ago was 600+ and they shouldn't be over 14......now they stay around 90.....if yours comes back raised-ask if they would consider doing an ANA test (Anti nuclear antibody test)...this can also lead HCP's to a diagnosis. Ask whether they would consider testing your iron, D3 B12 and folate levels....

Step 3...Ask your GP to try antidepresants-or if you are already on them- to try a different one that will lift you...if you are already taking them...if they aren't working their are alternatives....

Step 4....Ask your gp if they put patients on stress management courses....mine has been really good...none of this ' I am depressed and talking about yourself' - just listening to professionals that talk you through stress, anxiety and depression, and how it impacts on your actions, and more importantly as well-your body....

Step 5...I also got an excellent counsellor through my GP, and she has helped me enormously...so much better than all the **** I went through previously....

Step 6....Keep logging on for support here...it is normally really uplifting for support and help....

I suspect that you may have done at least one of these things, on step 1-6...and I know how hard it is to get somebody to listen that can help....

I know so much how tough it can be, but when you can break that circle, even on a temporary basis..it can help enormously....honest, it is worth trying to get further help from HCP's but it can need a lot of perseverance....

Are you under GP care or hospital care?

megan2002 said:

Thanks for your kind response.

I have spoken with several GP's however keep getting fobbed off with trying exercise however any walking etc makes me feel worse. Is it Brittle Diabetes? My blood sugars are consistently high and I take 60 lantus and 24 twice of novorapid. I think it would be best to strip me right back for it to work as I have tried tried and tried again with no real success. I am so tired.

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Maybe it would be good to strip back to the basics..

Have you done the DAFNE course or an equivilant? teaches you how to match your insulin to your carb intake and teaches you how to deal with other things like sick days, alcohol and how to recognise where to tweak your doses. Can be exremely useful! and it's great to spend a week with other people with diabetes.

Sounds like you need to stand your ground when you go to your GP.

Also some very good advice from donnelly!

I think the main thing is here that you get some proper medical care, that will stick with you and endeavor alongside you to get things right, and i really do think your diabetes may be at the centre of many of your problems, but you won't know for sure until you get stuck in to start getting it all into motion.

Must be horrible for you, theres always someone here that can offer help and support, big or small.

Get the ball rolling and let us know how you get on

megan2002 said:

Thanks for your kind response.

I have spoken with several GP's however keep getting fobbed off with trying exercise however any walking etc makes me feel worse. Is it Brittle Diabetes? My blood sugars are consistently high and I take 60 lantus and 24 twice of novorapid. I think it would be best to strip me right back for it to work as I have tried tried and tried again with no real success. I am so tired.

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This is only one small part of your problem, but hope this advice helps:

I guess that exercise, without corresponding adjustment in insulin dose / food intake, would make you feel worse. However, by reducing basal and bolus insulin doses before activity (if you know when you will exercise) or having a snack before unplanned activity, plus reducing insulin dose after exercise, you will feel the benfits without the potential problems of hypoglycaemia.

I am slightly puzzled by your use of "24 twice of novorapid" - most people take 3 doses of short acting a day, with breakfast, midday meal & evening meal. If you have a DAFNE (Dose Adjustment For Normal Eating) course in your area, then ask to be put on waiting list.

Megan,

I think it's time to be referred to a diabetes specialist at your local hospital about your continuing problems, unfortunately this will mean you having to go back and see your gp to be referred but the advice, support and treatment will be far better than you are getting from your curreent doctor.

Nigel

By any chance are you using Lantus as your background insulin?

As some of your problems are consistant with complaints that some Lantus users have experienced and moved to another background insulin such as Levimer or back to the older Animal insulin?

The bloating feeling and constription could be several things there, may be ceolic disease, BBS, gestophesis ((SP) emptying of the stomach problems) or a combination of, this could explain the unperdictable rise and fall of blood glucose levels..

I do think that you need your GP to refer you to the hospital diabetic consultant so your insulin and any other factors that could be effecting your control be looked at probably..

Hi Megan

Sometimes snacking in between meals can be done for at least two reasons:-

1) Could be because your main meals aren't fulfilling enough or:
2) Comfort eating, or boredom eating, or just because it has become a routine to do...

Number 1 is probably easier to adjust than number 2....however I would find it hard to give advice on this, because I don't ever find myself snacking between meals...howeveer number 2..

Number 2 is easier for me to try and discuss from my own experiences...I would try chewing gum (but this made me hungry!!!), or I know better now because I know I have to break the cycle of what actually makes me eat...i.e distraction worked for me...i.e. doing something different for example going for a walk instead, doing a sudoku, going to read a book (not a cookery one!!!!)..just doing something different and the same thing if possible to get your brain and body in to thinking it will get something else instead of eating.....it isn't easy and can take a good few weeks to adjust....and this is only providing that you don't need a snack due to low blood sugars....
I have never been of a large size, but I have sat with others during lunch and tea breaks and given encouragement to those that have wanted to snack...but didn't!!!!! We as a group would help to break the cycle of snacking that some people wanted to do, although they also wanted to lose weight. We had some fantastic resuts.....but it wasn't easy for those persons wanting to break their routine habits

I hope that you will get some other responses....it also helps to think positively that 'you can'- I know from reading the posting that you feel depressed and down, but sometimes with stress, anxiety and depression we have to think 'I can do it' instead of avoiding doing it-which is the easier option......

Megan, you aren't alone. There are a lot of us that have had some problem or another along the way with coping with the diabetes, and with our live's in general.....if we were all perfect one of us would be called something along the lines of 'Miracle-Queen' or dare I say 'God'......none of us are perfect, from the day we are born we all have flaws...so please have a positive thought that 'yes, I can do this' as well....you will, I am sure.....and in a few months you will be coming back and telling us how good and well you are feeling and managing.....

As others have suggested, a DAFNE course might help, for several reasons:
1) it's a good way to tackle your GP/hospital. You can say to your GP, I would like to learn more about how to manage my diabetes, please refer me to a dafne course - and s/he may well not find that a challenge because it's not saying the GP is wrong, it's saying that you want to be proactive.
2) part of DAFNE is teaching you that you can eat what you want, when you want, as long as you cover it with the right amount of insulin. They also teach you what to do if you want to eat healthily. That might help the snack-craving thing. But you can eat 'healthy' food that is high in carbohydrates (eg lots of fruit) and be unhealthy if the insulin isn't right for it. So getting the carb/insulin balance right is the best first step.
3) I would bet that you will find others (with diabetes) on the DAFNE course really helpful in terms of hearing other stories, helping each other out, encouragement, and tips and hints from their own experience. It can be very lonely having type 1, and a huge relief to talk to others who have it too.
4) the DAFNE tutors can advise you on other insulins if you are having problems with Lantus as others have suggested. NOTE: you will have to go onto a regime of injecting more than 2x a day of novorapid though. If that is not acceptable to you then DAFNE isn't for you.

Here are some resources that might help.
First, this is a list of the areas that do DAFNE - you can get referred out of your own area to another course if you want to, I did that. http://www.dafne.uk.com/downloads/DAFNE_centres_uk.pdf
(There's also a course called INSIGHT which I have no direct experience of, but apparently is very similar so if they offer that instead, try it)
Second, this website might help with assessing how many carbs etc are in your meals and snacks - they do a book which is useful. http://www.carbsandcals.com/

hope that helps, good luck, let us know how you get on.

DLA is not generally given to diabetics...just because they are diabetic...only if there are complications that warrant it.

DLA is complicated and is made up of 2 components-mobility and care and goes from a low level to high level depending upon severity.

All new applicants for DLA I believe have to be seen by an ATOS examiner.

A confirmed diagnosis of symptoms and illnesses is needed to support applications. You have to be having needing help for I believe 3 months minimum (not sure on the time for this).

There is a lot of information on the directgov website and benefitsandwork websites.

You sound similar to how I was several years ago. I had terrible trouble getting my GP to listen to me, so I gave up in the end and did some of my own research and trained in nutritional therapy. To save you the time and frustration I went through, I would suggest you visit IDDT website and read some of the information there about reactions to modern insulins. If you feel this may be contributing to your symptoms contact IDDT and they can advise how to approach your GP. After this I suggest finding yourself a qualified nutritional therapist in your area, changing your diet and then going on the DAFNE course. Good luck

Hi Megan, we are so sorry to hear that you are struggling with your diabetes. I have been a type 1 for over 50 years and truly understand what you are going through. Because of my diabetic complications - including sight loss, and the lack of NHS support my wife and I decided to do something about it. We have set up 'All About Diabetes and You', a counselling service for those like yourself, struggling with diabetes.

Have a look at our website link removed, fill in the contact form and we can then help you.

Keep positive and be in touch. Regards Kris Perkins

counselling service for those like yourself, struggling with diabetes.
££££££££££££££££££££££££££££££££££££££££££££££££££

LEACH