Diabetic complications or am I going mad?!!!

[Carla Holbrough]

Hi, I'm type 1, have been for 23 years. My diabetes has always scared me and never been easy to control. After years of up and down levels I started feeling extremely Ill. I participated in Dafne, they realised I had 'bad' dawn phenomenon. Waking up on 27-30s everyday isn't fun. So I had a fight on my hands for a pump. Finally I have one, it's great! Sugars are better but my issues are not. I was convinced it would all get better.
So over the last few years I have been suffering pains all over my body muscle spasms, chest pains buzzing in legs pains in joints, tiredness. I have had my heart checked to the point of angiogram, my spine checked, full blood tests, blood tests for celiac, the doc checked my feet for start of neuropathy. I'm lost I'm suffering anxiety, am now constantly on edge. The symptoms are getting worse and more frequent since sugars have been stabilised.. Is it possible to experience pains due to the changes in my sugars now?..
I'm now being sent pain management as they just 'don't know' nor do the docs have time,
My life is non existent the majority of it I spend at home in pain worrying what it is not knowing what to do to make it stop. When it's bad I just feel I've had enough, which scares me!.. Then suddenly It'll give me a week off, every time I'm fooled into thinking it's over. Then it begins again. I have no idea if it's diabetes related, but seeing as everything comes back fine. What else could it be? :/
Confused scared and fed up
Carla x

 

[ConradJ]

Is there anything you're eating / drinking / putting on in terms of clothes/make-up etc., during the time you do have the pains, compared with the times you don't?

My mum had something similar many years ago, it turned out she'd developed an allergy/intolerance to wine (I think it may have been red - due to the tannin).

It's worth investingation that side of things as well as the complications route.

 

[Totto]

Someone who knows about type ones will be along I am sure.

Have you had your thyroid checked?

What about vitamin D? do you have decent level there?

Have you had other autoimmune things checked like RA and lupus? SLE?

 

[sunday1980]

Hi sorry to hear that you're feeling so unwell. I've suffered anxiety problems most of my adult life so really feel for you as it sucks please talk to your doctor about it or have a look at one of the 'books on prescription' on it as they are a really good starting point, it's amazing how some of the little things can really help. Cbt (cognitive behavioural therapy) is the way to go, the organization MIND has some good starting point s on its website. It won't take away any pain you are in but will make things easier to cope with as anxiety can severely sap you physically and mentally xxx

 

[Carla Holbrough]

Hi all, I've been checked for Celiac. I'm finding the doctors have very little time to see me. So a different doc each time has very little time to review everything again and a majority of the time will prescribe the same thing ie painkillers instead of getting to the bottom of the problem.
I forgot to say I also have had a rash which I have been back n fourth about for 5 months too, that also has not been cured with any medication, I've had everything for all common rashes.
I resulted in searching for answers myself which including vitamin D which I told the doc about who sent me for bloods it came back on the lower side of normal and was prescribed vitamin D but this hasn't changed a thing. I also had my insulin changed as I thought perhaps an allergy to that, this has happened before in the past, again no change. My diabetic nurse had said perhaps I am allergic to insulin full stop, I'm not sure what would happen if I was and what I would do then :/ .
Nothing seems to be working or changing, I haven't noticed any patterns except I am a lot better in warmer weather but still it varies from week to week.
I'm not sure how to find the answers and am now suffering with the anxiety and panic of it all. So lost. Yet feel so bad for complaining when they can find nothing wrong.
And thank you Sunday1980, I am looking into help with anxiety and panic I've suffered since I was diagnosed with Type 1 to the point I became agoraphobic, I then got frustrated and learnt to deal with it with distraction techniques. After all these years it's now appeared again with all these problems. I'm going to contact MIND and have an appointment with the pain psychologists so I'm hoping this will help xxx

 

[Carla Holbrough]

Sorry Toto, yes I've had checks for RA, vitamin D as I said and thyroid.. I'm not sure what tests they do for the others but as I said the docs have little time and make me feel like I'm going mad. They've only recently started to pay attention since my rash appearance. Oh and I have had nodules appear in my hands which appeared after a trigger finger episode that they suspected may have been dupeytren contracture but now believe it is not as the fingers where cured with steroid injection. Just left with irritating nodules (no pain) xxx

 

[Totto]

Can you post thyroid results here? Have you had thyroid antibodies tested? ANA?

Regarding vitamin D, it often requires substantial doses to correct a deficiency.

 

[Engineer88]

Have you tried deducting things from your diet? I know youve bene tested for coeliac but wheat intollerance wouldnt show up for that. could also be other allergys as someone said above

 

[Hooked]

This sounds all to familiar for me. Pain, tiredness coming and going. Even trigger finger! I too had to ask for Vit D levels to be tested and they came back slightly on the low side (my calcium had come back on the low side of normal before but "not enough to treat"). I was given a short dose of Vit D supplements and told to come back once they were finished to get re tested. I've been back twice and asked to get retested and never was. To be honest, I didn't notice any difference with taking the Vit D supplements - but wether they were at a level to make much of a difference I don't know.
Drs just seem uninterested and say "take better care of your diabetes" whilst having no idea how perfect of imperfect my current care of it is. So frustrating.

If you ever get to the bottom of it do let me know. I'm at a complete loss!
Sorry I couldn't be of more help. Just wanted to let you know someone at least knows how you feel. x

 

[donnellysdogs]

Are you on statins?


Sent from the Diabetes Forum App

 

[Adele99]

This is only a guess or possibility, but as you've had so many tests and things ruled out, I'm wondering if this is possibly Fibromyalgia? This condition can occur if your sleep pattern is disturbed over a long period of time and most people who have it have some background of anxiety or depression. It usually starts after some sort of physical or emotional trigger .

Fibro can cause a host of symptoms which can come and go, and for which no physical cause can be found. It's related to ME, the big difference being I think that with Fibro the main symptom is pain , tight muscles too sore to touch etc. also causes fatigue and what is called Fibro fog or cognitive memory symptoms .

Whereas ME I think tends to involve less pain and extreme fatigue.

Might be worth asking your GP if this could be the problem. The good news is that there is no physical injury or underlying disease causing all the symptoms, but I think some people find the symptoms very difficult. But you will be able to get some help with the symptoms if this is what the problem is.

 

[Carla Holbrough]

Exactly that Hooked!. I was told vit D was a touch on the low side, given a prescription and a blood test form for 2months time. I had my blood test after 2months heard nothing about results went in to ask if I still needed vit D they tried to send me to go for another blood test as they had mislaid the one I had at 2months!.. Frustrating!
Sorry to hear you're going through the same thing x

 

[Carla Holbrough]

No was prescribed them when they thought I had a heart problem, but the Angiogram showed I had no issues so they took me off them.

Are you on statins?


Sent from the Diabetes Forum App

 

[Carla Holbrough]

This is only a guess or possibility, but as you've had so many tests and things ruled out, I'm wondering if this is possibly Fibromyalgia? This condition can occur if your sleep pattern is disturbed over a long period of time and most people who have it have some background of anxiety or depression. It usually starts after some sort of physical or emotional trigger .

Fibro can cause a host of symptoms which can come and go, and for which no physical cause can be found. It's related to ME, the big difference being I think that with Fibro the main symptom is pain , tight muscles too sore to touch etc. also causes fatigue and what is called Fibro fog or cognitive memory symptoms .

Whereas ME I think tends to involve less pain and extreme fatigue.

Might be worth asking your GP if this could be the problem. The good news is that there is no physical injury or underlying disease causing all the symptoms, but I think some people find the symptoms very difficult. But you will be able to get some help with the symptoms if this is what the problem is.

Fibromyalgia is something that has been considered, and mentioned. My mum has Fibro. Although rather than do the necessary checks for Fibro and confirm it is they have just palmed me off to pain management.
The only thing is, is I don't have much problem sleeping. At times pain wakes me up, but generally my sleep isn't to disrupted.

 

[Carla Holbrough]

Stra

Have you tried deducting things from your diet? I know youve bene tested for coeliac but wheat intollerance wouldnt show up for that. could also be other allergys as someone said above

strangely I had to do a no carb blood glucose monitoring for 12hours a few weeks back. Apart from being hungry. I noticed I felt better but it wasn't long enough to really see if I was just having a good day.
I just don't know which and what to cut out :/

 

[Engineer88]

Stra
strangely I had to do a no carb blood glucose monitoring for 12hours a few weeks back. Apart from being hungry. I noticed I felt better but it wasn't long enough to really see if I was just having a good day.
I just don't know which and what to cut out :/

I would start with wheat and maybe dairy. Sounds crazy but I found a pendulum allergy test was quite accurate. Maybe try it out?


Type 1 diagnosed 1990
HBa1c current 8.3
Pump and CGM used (animas vibe)

 

[Totto]

Fibromyalgia is something that has been considered, and mentioned. My mum has Fibro. Although rather than do the necessary checks for Fibro and confirm it is they have just palmed me off to pain management.
The only thing is, is I don't have much problem sleeping. At times pain wakes me up, but generally my sleep isn't to disrupted.

Fibro seems to be quite common in undiagnosed hypothyroid sufferers. Thyroid levels are unique for the individual so the reference ranges are of little value. I was ill already with a TSH of 0.9 and when it got to 2.1 I was more or less bed bound while my GP assured me there was nothing wrong with my thyroid. Eventually I took things in my own hands and started self medicating and got my life back. I did have the typical signs of symptoms though so it shouldn't have been missed. Still haven't got my eye brows back but every trace of myxedema is gone, my hair is thick and shiny, I have no problems with muscle weakness, no stiff joints, no pain, no constipation, no need to nap during the day at all and no hypothyroid hallucinations, normal body temp, normal heart rate etc.

I am not saying you have hypothyroidism, just that normal isn't always normal when it comes to wonky thyroids.

 

[Adele99]

As your Mum has it you'll know there's no real treatment for Fibro , and most people having seen a Rhematologist once for a diagnosis are referred to either Pain clinics or their GP for ways to mange the symptoms. If your thyroid levels are questionable you could mention it to the doctors at the Pain clinic, they can access many areas of the NHS which GPs can't.

Give the Pain Clinic a chance and see what they have to say or offer.

Hope you get an answer to your problem soon.

 

[Carla Holbrough]

Fibro seems to be quite common in undiagnosed hypothyroid sufferers. Thyroid levels are unique for the individual so the reference ranges are of little value. I was ill already with a TSH of 0.9 and when it got to 2.1 I was more or less bed bound while my GP assured me there was nothing wrong with my thyroid. Eventually I took things in my own hands and started self medicating and got my life back. I did have the typical signs of symptoms though so it shouldn't have been missed. Still haven't got my eye brows back but every trace of myxedema is gone, my hair is thick and shiny, I have no problems with muscle weakness, no stiff joints, no pain, no constipation, no need to nap during the day at all and no hypothyroid hallucinations, normal body temp, normal heart rate etc.

I am not saying you have hypothyroidism, just that normal isn't always normal when it comes to wonky thyroids.

Could you explain a little more about hypothyroid. During my time investigating my own symptoms I've come across this time and time again but still have negative results from doctors. I have recently had a full blood work and am going in this week to ask for a copy, I really can't live like this all my life, I feel I'm just rotting away waiting for it to get so bad that they realise se things wrong. I don't want to wait until damage has been done.
I know little of hypothyroid, I'm not sure what hypothyroid hallucinations are but I've certainly had some peculiar episodes although seem worse at those times of the month. Also you mentioned heart rate, I experience fluttering and palpitations none of which have ever showed up on ECG. Although my stress test results showed problems and I was put on medication only to be told after an angiogram that it must have been a false-positive.
The reason I ask about the hallucinations is because I've had a few episodes normally on waking, where I am confused. Not seeing things, but hearing a what sounds like a million chattering voices all going at once, at the time it happens I'm confused scared and don't know where I am. Being diabetic I automatically check my BG, it's never been low at these times.
I've gotta be honest I'm terrified, frustrated and generally fed up with not knowing what and how to treat it. Scared of not knowing what's happening to me.

 

[Tigerkitty1950]

I was told I had an underactive thyroid and started on 25 mg 6 months ago, upped to 50 mg and they say I'm doing well on it, its usually tiredness , weight gain or failure to lose weight, dry skin and hair, common symptom is dissappearing eyebrows, I've had occasional allergys to face creams, hoping my thinning hair will improve, Tablet taken in morning well before eating ( at least half an hour ) as I'm on Metformin Im going to to take calcium and Vit D, and B 12 certain vitamins can be depleted, I found I was getting lots of cramps so started eating high potassium foods, milk, yogurt, baked potatoes, and tonic water in an emergency.
I have read a lot of helpful things online regard type 2, but I didn't read anything helpful about hypothyroid, so I would avoid it if possible