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I really need any advice or help

M

Morgan78

Member
Messages
12
Location
Ottery st Mary Devon UK
Type of diabetes
Other
Treatment type
Other
Dislikes
Whatever I have!
My name is James. I’m 42 from Ottery St Mary, I have a brilliant wife, and a 6 year old energetic daughter. This is hard for me to write as I’ve had a long hard time of it for the past 6 years.


We don’t know whether I have diabetes. Around the time my daughter was born, we had a series of bad issues. My best friend attempted suicide in our shared flat (I had taken 2 weeks off as he was manically depressed). The day I went back to work he attempted that, and his mother blamed me for not being there. My gran died. My wife’s stepdad died. I lost my job. I injured back and arm powerlifting. They found an issue with my heart, some genetic issue my dad had.

Since then I haven’t worked and I’ve been a stay at home dad. I stopped exercising and put on weight. I had no energy and felt terrible, so they decided I have depression (now it’s been reassessed to PTSD from childhood trauma) and after many tests they said I have fibromyalgia. I had a series of doctors tell me if it wasn’t for the diabetes tests, they would definitely think it was diabetes. All my symptoms are that of diabetes- my grandfather had it terribly. I’ve done as most ‘fibromyalgia’ people do and try a billion different things to have more energy and less pain.

I don’t know what possessed me, but the ‘diabetes’ non-diagnosis has always nagged me. I’ve seen so much research with diabetes being linked to fibromyalgia. I obtained a small amount of insulin and I used a very small amount. Less than quarter of the suggested starting amount. I experienced a day where I had no burning sensation on my hands and feet, I didn’t need to lie down in front of the fan. I can feel my skin and I can feel cold items again. I could see properly and I had the energy to go in the garden. Food tasted wonderful, my mind was clear.


I know I did the wrong thing. I know I can’t say this to a doctor. But does anybody have a name for what I have? My blood readings say I don’t have diabetes but they are surprised I don’t have it and obviously it cannot be treated as diabetes unless it ticks the right box. Could anybody help me?
 
Hi and welcome. I think the link between diabetes and fibromyalgia is weak. It is rarely mentioned on these forums. You can of course buy a glucose meter if you don't have one and measure you BS from time to time to see it is OK. Taking insulin with normal BS could take you into a hypo which is of course dangerous and probably won't improve the fibromyalgia. I had fibromyalgia around 20 years ago for a few months and I have no idea what caused it and it just went away. It's a very strange ailment and sadly not well understood.
 
Daibell said:
Hi and welcome. I think the link between diabetes and fibromyalgia is weak. It is rarely mentioned on these forums. You can of course buy a glucose meter if you don't have one and measure you BS from time to time to see it is OK. Taking insulin with normal BS could take you into a hypo which is of course dangerous and probably won't improve the fibromyalgia. I had fibromyalgia around 20 years ago for a few months and I have no idea what caused it and it just went away. It's a very strange ailment and sadly not well understood.
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My worry is that I have diabetes and fibromyalgia is just what they’ve called this. I’ve been using insulin at low doses for 2 weeks. It’s been 5 years of constant painkillers and I’m painkiller free and up and about all the time. I’ve been spending my time sweating buckets lying on my side in bed for almost 5 years. I couldn’t wear anything but shorts due to the sweat as I felt so hot all the time, like burning oil over my hands and feet. It’s all gone with insulin use, but I don’t know what to do. My GP surgery and I have had many issues as they insist they don’t have time to go into anything so we have about 5 mins to speak and be dealt with. They have had many complaints. Maybe I’ll have to look to a private doctor if we can find the money.

many thanks for responding. Very kind.
 
Hi and welcome @Morgan78

Firstly, I am sorry you are going through this, and I hope that you find answers to your issues. You may well find there is information here on the forum. We are a supportive and helpful bunch, and the combined knowledge of the posting members is vast. :)

Secondly, PLEASE DO NOT EVER INJECT YOURSELF WITH INSULIN AGAIN UNLESS IT IS SPECIFICALLY PRESCRIBED FOR YOU AND YOU HAVE BEEN EDUCATED IN ITS SAFE USE.

There, lecture over. :)

My understanding of Fibromyalgia is that people can get diagnosed with it as a kind of last resort, because they haven't established what else it may be.

My suggestion, like @Daibell is that you get yourself a blood glucose meter and test your blood glucose on waking, and before meals, then 2 hours later. The doc probably ran an HbA1c test to check for diabetes, but that will only report on your average blood glucose over the last 2-3 months. It won't spot any highs and lows that may be taking you out of the normal range. A home glucose meter will spot these. Have a look at the Tee2 and the Codefree meters. They are much more economical to run and buy the test strips, than some of the more expensive meters.

You may not be diabetic, but there is a chance that you may have some other kind of glucose irregularity that is affecting you - and even if you don't, you will have put your mind at rest about it being diabetes, and can then look at other options.
 
Hi again @Morgan78

Am I correct that your power .lifting background has exposed you to the idea that non prescription backstreet use of insulin is OK?

You will find a very different perspective here on the forum where diabetics use it with the full understanding of the risks, and in the knowledge that its misuse can be lethal.

I am sorry to welcome you to the forum with such a clear message, but the use of unprescribed insulin is a very risky business, The quality of the insulin itself, the dosing, the equipment, the need for comprehensive testing... the risk of death through an overdose causing a hypo that kills.
 
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Morgan78 said:
Thank you. I will do this and update. Many thanks to you both for your help. Sound advice. God bless.
Click to expand...

Hi,

I'm prescribed insulin, been using it since a kid. Now, i don't know if you are a driver? so please check out the guidelines with insulin using diabetics at DVLA. we have to check our BGs every 2 hours behind the wheel. Getting caught driving whilst low is tantamount to "under the influence."
If you have been "jacking" in exogenous insulin on top of what your body already produces, this may not help with your weight gain issue. You may already find yourself eating way more carbs than necessary to keep normal parameter BGs.
Your "Food tasted wonderful, & mind was clear." I've had a few lows like that. (Or i thought my mind was clear until i opened my mouth & tried sensible conversation.) ;)

It's playing russian roulette without a meter even for a T1 like me..

What insulin are you actually using? some can also be a little unstable in the working profile...
 
Morgan78 said:
My worry is that I have diabetes and fibromyalgia is just what they’ve called this. I’ve been using insulin at low doses for 2 weeks. It’s been 5 years of constant painkillers and I’m painkiller free and up and about all the time. I’ve been spending my time sweating buckets lying on my side in bed for almost 5 years. I couldn’t wear anything but shorts due to the sweat as I felt so hot all the time, like burning oil over my hands and feet. It’s all gone with insulin use, but I don’t know what to do. My GP surgery and I have had many issues as they insist they don’t have time to go into anything so we have about 5 mins to speak and be dealt with. They have had many complaints. Maybe I’ll have to look to a private doctor if we can find the money.

many thanks for responding. Very kind.
Click to expand...

Hi there, it sounds like you have really been through the mill. It is hard when you are convinced you have something that the medical Profession are saying you don't have but I have to be honest, in my opinion the fact that you have somehow managed to get hold of non prescribed insulin is very dangerous and most likely NOT beneficial to your health. Even if you were diabetic, if you were a type 2 then more insulin could make you worse over time or do you think that you are a type 1 diabetic (ie, insulin dependent). If that were the case then that would most definitely have been discovered by now after 5 years. None of us know of course but exactly what symptoms of 'diabetes' do you have other than no energy? What test results have you have had back specifically in relation to diabetes, ie hb1ac results. I do feel for you but a private Dr does all the same tests an NHS Dr would (usually the same Consultants anyway). I suppose that you are after a second opinion so maybe that would put your mind at rest. What is a daily routine for you if you don't mind me asking, ie, food, 'dosage', glucose levels etc. x
 
Morgan78 said:
My worry is that I have diabetes and fibromyalgia is just what they’ve called this. I’ve been using insulin at low doses for 2 weeks. It’s been 5 years of constant painkillers and I’m painkiller free and up and about all the time. I’ve been spending my time sweating buckets lying on my side in bed for almost 5 years. I couldn’t wear anything but shorts due to the sweat as I felt so hot all the time, like burning oil over my hands and feet. It’s all gone with insulin use, but I don’t know what to do. My GP surgery and I have had many issues as they insist they don’t have time to go into anything so we have about 5 mins to speak and be dealt with. They have had many complaints. Maybe I’ll have to look to a private doctor if we can find the money.

many thanks for responding. Very kind.
Click to expand...

Morgan78, I'd reiterate how dangerous using insulin in the way you are doing is. Insulin is a life-saving hormone, for those who need it, but it can also be killer, if used inappropriately. I would suggest your use is very inappropriate.

Relating to your Fibromyalgia; unfortunately, that is often a diagnosis by exclusion. In other words, the issue or not, x, y or z, therefore it could be fibromyalgia.

I have thyroid issues, which has led me to do extensive reading on that topic. Quite a number of people living with underactive thyroids also have pain, which is sometimes diagnosed as fibromyalgia.

Of late, I have read a couple of pieces suggesting that the appropriate and adequate management of the hypothyroidism eases, in some cases, quite significantly, the fibromyalgia pain.

As this isn't something relevant to me, unfortunately, I haven't saved any bookmarks for the relevant papers, but it could be worth asking if your thyroid has been tested.

If you are unhappy with your current GP, it could be time to consider a change.

I'm so sorry you've had a torrid time, but dabbling with unprescribed insulin really isn't the way forward.
 
Brunneria said:
Hi again @Morgan78

Am I correct that your power .lifting background has exposed you to the idea that non prescription backstreet use of insulin is OK?

You will find a very different perspective here on the forum where diabetics use it with the full understanding of the risks, and in the knowledge that its misuse can be lethal.

I am sorry to welcome you to the forum with such a clear message, but the use of unprescribed insulin is a very risky business, The quality of the insulin itself, the dosing, the equipment, the need for comprehensive testing... the risk of death through an overdose causing a hypo that kills.
Click to expand...
No. I have been told by several doctors that they would assume I am diabetic but the hba1c test says I’m not. 5 years of not adequately being a father to my daughter and not drinking or socialising or going to see friends etc because I’m usually unable to do anything but lie in a darkened room on one side and having counselling for depression and anxiety because of my slow decline from an active person to being 4 stone heavier and many other things of that nature led me to the idea as a means to not give up on life.
Thank you for your post. I was a busy manager in my former days. I am now largely a depressed recluse. People do desperate things in desperate times.

my time as a drug free powerlifter in no way contributed to my use of insulin.

I was eating a large amount of fruit, pasta, meat, vegetables: I don’t drink, I avoid fat. No butter or margarine. I avoid chocolate. I crave sugar all the time so I was drinking lemonade all the time. I started eating less and less but gaining weight. It’s been a difficult 5 years.

what I have been doing since the insulin experiment is cutting out refined sugar. I was drinking 4 litres or more of lemonade and a bottle of lucozade. Now I’m drinking squash as a compromise.

I have lost inches round my waist in 2 weeks and I’m able to get up and enjoy life. I’m eating a lot of fruit and veg and cutting down meat (which I’ve eaten a lot of because I used to train, but since I haven’t really been able to do that, I’ve still ate like a powerlifter. I’m short but was 14.5 stone of muscle and now I’m over 18 stone.

I’m well aware of the dangers of drug use- it’s not a total crazy thought to think of diabetes. It may run in my family but nearly all the men die before 50 and my father I have not seen in years but am told he’s had 6 heart attacks. My grandfather suffered from it though.
I can tell you that having not had insulin for a couple of days I seem to have retained the effects. I can feel the cold for one thing. I welcome that after dripping in sweat so much that my wife doesn’t share a bed with me anymore. I had ice lollies all day to cool down but it didn’t seem to help but now I don’t need to. I’ve ordered a blood glucose meter and will take readings. Obviously I won’t be using insulin as I can’t get readings if I use it.

I’m grateful for the concern shown here. I read countless things about how metformin helped a group that apparently had fibromyalgia and other case studies where the same conclusions were met. I’m not saying everyone with fibromyalgia has diabetes, but maybe I do. I have handed in registration forms to change my GP as well.

The main question I have isn’t how to misuse insulin or do anything stupid. I’ve already done that, and luckily I’m ok. It’s what to tell the GP? I do not like being dishonest so do I just come out with it? They may know of a glucose intolerance issue. I’ve had so many tests for genetic disorders and been to so many appointments I feel so helpless. Should I withhold what I did from them? I really am at a loss. Someone suggested there may be other ‘afflictions’ so maybe it’s just something rare. Or maybe I’m just crazy.

Thanks to all. Will check blood glucose and see what it indicates.
 
Morgan78 said:
No. I have been told by several doctors that they would assume I am diabetic but the hba1c test says I’m not. 5 years of not adequately being a father to my daughter and not drinking or socialising or going to see friends etc because I’m usually unable to do anything but lie in a darkened room on one side and having counselling for depression and anxiety because of my slow decline from an active person to being 4 stone heavier and many other things of that nature led me to the idea as a means to not give up on life.
Thank you for your post. I was a busy manager in my former days. I am now largely a depressed recluse. People do desperate things in desperate times.

my time as a drug free powerlifter in no way contributed to my use of insulin.

I was eating a large amount of fruit, pasta, meat, vegetables: I don’t drink, I avoid fat. No butter or margarine. I avoid chocolate. I crave sugar all the time so I was drinking lemonade all the time. I started eating less and less but gaining weight. It’s been a difficult 5 years.

what I have been doing since the insulin experiment is cutting out refined sugar. I was drinking 4 litres or more of lemonade and a bottle of lucozade. Now I’m drinking squash as a compromise.

I have lost inches round my waist in 2 weeks and I’m able to get up and enjoy life. I’m eating a lot of fruit and veg and cutting down meat (which I’ve eaten a lot of because I used to train, but since I haven’t really been able to do that, I’ve still ate like a powerlifter. I’m short but was 14.5 stone of muscle and now I’m over 18 stone.

I’m well aware of the dangers of drug use- it’s not a total crazy thought to think of diabetes. It may run in my family but nearly all the men die before 50 and my father I have not seen in years but am told he’s had 6 heart attacks. My grandfather suffered from it though.
I can tell you that having not had insulin for a couple of days I seem to have retained the effects. I can feel the cold for one thing. I welcome that after dripping in sweat so much that my wife doesn’t share a bed with me anymore. I had ice lollies all day to cool down but it didn’t seem to help but now I don’t need to. I’ve ordered a blood glucose meter and will take readings. Obviously I won’t be using insulin as I can’t get readings if I use it.

I’m grateful for the concern shown here. I read countless things about how metformin helped a group that apparently had fibromyalgia and other case studies where the same conclusions were met. I’m not saying everyone with fibromyalgia has diabetes, but maybe I do. I have handed in registration forms to change my GP as well.

The main question I have isn’t how to misuse insulin or do anything stupid. I’ve already done that, and luckily I’m ok. It’s what to tell the GP? I do not like being dishonest so do I just come out with it? They may know of a glucose intolerance issue. I’ve had so many tests for genetic disorders and been to so many appointments I feel so helpless. Should I withhold what I did from them? I really am at a loss. Someone suggested there may be other ‘afflictions’ so maybe it’s just something rare. Or maybe I’m just crazy.

Thanks to all. Will check blood glucose and see what it indicates.
Click to expand...

Hi again,

Random BG testing may leave you more confused & tend to not tell much. spotting trends is key.

You haven't mentioned what insulin you are using?

Speaking as a T1 with IOB 24/7 It is advisable to inform someone (at least those around you) of insulin use. The symptoms of a low could be mistaken for something else (Drunk?) & the appropriate treatment (Fast acting carbs.) may not be forthcoming.

Be safe..
 
Jaylee said:
Hi again,

Random BG testing may leave you more confused & tend to not tell much. spotting trends is key.

You haven't mentioned what insulin you are using?

Speaking as a T1 with IOB 24/7 It is advisable to inform someone (at least those around you) of insulin use. The symptoms of a low could be mistaken for something else (Drunk?) & the appropriate treatment (Fast acting carbs.) may not be forthcoming.

Be safe..
Click to expand...

It was Levemir. I’m 110kg so according to the dosage info I should be using quite a bit. I was using 5 units a day. I ate quite a bit. I had energy I haven’t had for years. I went out with my family at the weekend. My eyesight came back- I usually have this gloopy whitish stuff in my eyes constantly with blurry double vision. This stopped completely. I could play with my daughter and do some gardening. I haven’t had any energy for 5 years or so. I was heavily active until I ruptured my bicep back then and I stayed home with my newborn and my wife had to go to work instead. I put on a lot of weight and felt ill all the time. I stopped exercising. I’ve been ill constantly. I get bruises that stay for months. Cuts don’t heal for weeks. I eat small amounts now as if I ate big meals I would feel like passing out. I survive by drinking lucozade all through the night. I constantly need to wee and I’m thirsty all the time.
 
Morgan78 said:
It was Levemir. I’m 110kg so according to the dosage info I should be using quite a bit. I was using 5 units a day.
Click to expand...

The dosage info is just for a quick guess at the start of using insulin - whilst under the guidance and help of a diabetic nurse/doctor/consultant, I briefly knew (I was on a course with her) one T1 who used less than that for the long acting insulin (which Levemir is), for some that may be low dosage, for others it may not be, everyone who is diabetic is different - we do not all take the same amount by a long way - despite what "dosage info" you have found somewhere.

But if you are not diabetic (which your HbA1c confirms, youre on the higher side of normal, but still normal) you should NOT be taking insulin - it can kill! Obviously something is going on, but you need to get it checked out what it is rather than guessing.
 
Rokaab said:
The dosage info is just for a quick guess at the start of using insulin - whilst under the guidance and help of a diabetic nurse/doctor/consultant, I briefly knew (I was on a course with her) one T1 who used less than that for the long acting insulin (which Levemir is), for some that may be low dosage, for others it may not be, everyone who is diabetic is different - we do not all take the same amount by a long way - despite what "dosage info" you have found somewhere.

But if you are not diabetic (which your HbA1c confirms, youre on the higher side of normal, but still normal) you should NOT be taking insulin - it can kill! Obviously something is going on, but you need to get it checked out what it is rather than guessing.
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I know. You’re correct. It’s difficult with the GP. I have had 1 incident where I’ve been given 2 drugs which cannot be used together and was ill for some time before my wife found it out on the internet that they should not be combined, and 2 incidents of pneumonia being untreated as thought to be viruses, one of which I was hospitalised for. This is in 5 years. We have just moved a short distance away so we are changing doctors. Probably for the best.
 
Be aware that certain blood conditions (eg most types of anemia and some genetic conditions) can make hba1cs over read or under read. A fructosamine test would be a good back up. Have you actually down individual blood sugar tests to back up the hba1c?
https://www.goodrx.com/blog/could-your-hba1c-diabetes-test-be-wrong/

Also, your dietary description sounds like you are having massive amounts of carbs, quite consistent with your symptoms if you were T2 diabetic. T2s can't process excess carbohydrate, and gain weight and develop insulin resistance when they take too many. Although adding insulin to their bodies can provide temporary relief, they are already over producing insulin so in the long term it can be more of a hindrance than a help.

Instead of experimenting with insulin ( a really bad idea) why don't you experiment with a low carb diet for a few weeks? It won't kill you (insulin could) and if T2 diabetes is the issue then it should make you feel a lot better (but bear in mind that you may get sugar cravings because carbs are addictive).
 
EllieM said:
Be aware that certain blood conditions (eg most types of anemia and some genetic conditions) can make hba1cs over read or under read. A fructosamine test would be a good back up. Have you actually down individual blood sugar tests to back up the hba1c?
https://www.goodrx.com/blog/could-your-hba1c-diabetes-test-be-wrong/

Also, your dietary description sounds like you are having massive amounts of carbs, quite consistent with your symptoms if you were T2 diabetic. T2s can't process excess carbohydrate, and gain weight and develop insulin resistance when they take too many. Although adding insulin to their bodies can provide temporary relief, they are already over producing insulin so in the long term it can be more of a hindrance than a help.

Instead of experimenting with insulin ( a really bad idea) why don't you experiment with a low carb diet for a few weeks? It won't kill you (insulin could) and if T2 diabetes is the issue then it should make you feel a lot better (but bear in mind that you may get sugar cravings because carbs are addictive).
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I have had several urine glucose tests. It’s usually in the morning when I haven’t eaten for at least 12 hours as I panic before I see the docs and I’m nervous. They always seem disinterested in it so I haven’t given them much thought until recently.

I have, or was having, a ridiculous amount of carbs. Potatoes and Pasta in huge amounts and lots of sugary drinks. I was surprised to be honest that nothing has ever been discussed about my diet with my doctor, despite my constant illnesses. We are told we have to prioritise what we speak to them about as they only have 10 min slots. My daughter is energetic and is normally with me/us so once greetings and seats are taken we have a limited time in which usually only one of the symptoms is discussed as we don’t have time for any more. I have had scans of my kidneys and liver and joints and hips and chest etc all trying to work our what my back pain could be. The GP I’m moving from has a poor reputation locally, so I’m hoping the new one will be less time-restrained and allow me to cover it.

could this all be just diet related? I’ve been eating like I did when I was training. In case I ever recovered from whatever it is that’s caused all this upset.
 
Morgan78 said:
It was 39 mmol/mol
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That is considered normal in the UK. In the US the Pre-diabetic category starts at 38.8 mmol/L. My latest A1c was the same as yours, 39. I follow Dr Bernstein in thinking lower blood glucose than the current UK and US targets is highly desirable, but even with a very low carb diet I have not been able to get there. Dr B believes that normal blood glucose as seen in finger prick tests does not often stray from the range 4.44 to 5.55. IMO you will need to decide which target you wish to adopt - UK, US or Dr B's. If you want to follow Dr B's you can not expect much support from your GP, who is constrained by the official targets. That need not stop you from experimenting with a low carb diet and testing for yourself. If eating differently seems to help you lower the numbers you see on your meter, and more importantly, feel better, no-one can stop you from continuing.

Could you ask your GP to send you for some counselling sessions to support you through this? Or even a Pain Clinic?

Post edited by moderator to remove inappropriate advice.
 
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