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Chronic Fatigue

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Tony Lumsden

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Type 1.5 LADA
Hi, I am Latent Auto Immune Adult. Diagnosed originally as type 2 4 years ago, but the diagnosis was revised 18 months back. My blood glucose is pretty much under control averaging 6.7, and my 3 month test is in the low 50s. Yet I still experience chronic fatigue muscle weakness etc. Cannot do anything physical without collapsing in my bed for a couple of hours after. Can anyone share their experience with me on this one. Is this the norm, or should have have better energy levels?
 
Hi welcome to the forum! Sorry to hear about your fatigue. Have you ever had your thyroid function tested? Thyroid problems are quite common and can cause extreme tiredness and irritability. Anaemia is also another condition that can cause fatigue and this can be checked by a simple blood test. I'd say speak to your doctor to be on the safe side

From my own experience, I've only been on insulin two weeks but I feel a million times better in myself and my energy levels are through the roof!
 
Are you on statins by any chance?
 
Hello Tina Welcome.
It would be best if you saw your GP. Their can be many reason why you're getting these symptoms. I get similar symptoms when I'm Anaemic.
Do let us know how you get on.
 
Rosiecarmel said:
Hi welcome to the forum! Sorry to hear about your fatigue. Have you ever had your thyroid function tested? Thyroid problems are quite common and can cause extreme tiredness and irritability. Anaemia is also another condition that can cause fatigue and this can be checked by a simple blood test. I'd say speak to your doctor to be on the safe side

From my own experience, I've only been on insulin two weeks but I feel a million times better in myself and my energy levels are through the roof!
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Thanks for your response.
I have had just about everything checked by the Doctor, thyroid more or less normal as are all other potential culprits. Good to hear you have recovered your energy levels. I have been on insulin for over a year, and did not notice a big difference in my energy, in fact mine is getting progressively worse. I am also still on metformin as well as insulin, were you on that and if so are you still on it?
 
Tony Lumsden said:
Thanks for your response.
I have had just about everything checked by the Doctor, thyroid more or less normal as are all other potential culprits. Good to hear you have recovered your energy levels. I have been on insulin for over a year, and did not notice a big difference in my energy, in fact mine is getting progressively worse. I am also still on metformin as well as insulin, were you on that and if so are you still on it?
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Yes they told me to still take my metformin but I only take one on a morning and one on an evening!

Pumper_Sue asked if you were on statins? They can have severe side effects such as fatigue and extremely painful joints & muscles!
 
Welcome to the forum.

Could it be a B12 deficiency? It's something I have researched a fair bit recently, along with some answers from the guys on here! Metformin strips it from the body. I take 4 B12 Vits a day, as I was feeling incredibly tired. I have noticed some difference, but sometimes people need injections.
 
AngelaY9847 said:
Welcome to the forum.

Could it be a B12 deficiency? It's something I have researched a fair bit recently, along with some answers from the guys on here! Metformin strips it from the body. I take 4 B12 Vits a day, as I was feeling incredibly tired. I have noticed some difference, but sometimes people need injections.
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Thanks for that. Had my B12 checked and was told by the doctor my B12 was at acceptable levels.
 
Tony Lumsden said:
I was on statins but stopped them about a year ago.
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Ok then that rules out statins as a cause of the problem.
If you have been tested for everything under the sun then perhaps look at the insulin you are using, some people and it's not many though have a problem with fatigue when on certain insulin's.
 
Welcome to the forum, Tony, and sorry to hear about your fatigue and muscle weakness.

PENE, or "Post-exertional neuro-immune exhaustion" (exhaustion after any exercise) is the primary symptom of Myalgic Encephalomyelitis (ME) so that might be something they should consider if they have eliminated everything else (there's no standard diagnostic test yet so it's diagnosed by a process of elimination). Most GPs don't know very much about it so it's possible yours may not have considered it, or may not realise ME specialists now consider it to be an auto-immune disease.

But, having said that, ME causes a lot more symptoms as well as exhaustion - do you have anything else which isn't explained by the diabetes, such as muscle pain, headaches or migraines, regular sore throats, disturbed sleep, problems with memory or concentration (the list of possible symptoms is much longer but those are the most likely)? If so you might want to have a look here (this is my own site and the news bits are very out of date, but the links and other info. should still be relevant): http://me-pages.blogspot.co.uk/

I hope they can find out what's causing the exhaustion for you - it certainly doesn't sound like diabetes if yours is well controlled, so hopefully it will turn out to be something they can fix by something as simple as just changing your insulin. The only other thing I wondered is, have you done tests of your BG at the times when you're exhausted, just to make sure you're not having random plummets or anything like that which are later correcting themselves, as in this case they might not show up on the averages?
 
Thanks for your info. It is reassuring to hear experiences from diabetics who have normal energy levels. ME is something I thought might be the problem, but I am still hoping it is something more fixable. I am waiting for an appointment with the endicrology department at my NHS hospital, when I eventually get to see them (minimum 3 month wait) I am hopeful we can narrow things down a bit.
 
Best of luck. One thing to bear in mind though - I found NHS diabetes consultants knew less than nothing about ME (they tend to call it Chronic Fatigue Syndrome - which has different diagnostic criteria - and not take it seriously at all) so NHS endocrinologist might not be the best person to discuss that with, unless they happen to have specialised in both (I have come across someone who did specialise in both, but only in private clinic).
 
In my experience NHS consultants who work privately have referred to mine as Chronic Fatigue Syndrome even though I meet the ME diagnostic criteria - from what I read the NHS prefers to use the term CFS. All three of the consultants I saw who all agreed with my diagnosis - a rheumatologist, a neurologist and a neuropsychologist - I saw privately but I also saw the rheumatologist on the NHS. As well as fatigue and pain and difficulty walking etc when mine was at its worse I couldn't mark assignments that I had written for students or other things that required cognitive thinking and I couldn't concentrate. I had to take ill-health retirement from my academic post - I was only 43. Fortunately for me as long as I pace myself I have a reasonable life and I'm even going to try a second degree on a part-time basis. I really hope that the endocrinologist can help you.
 
AJLang said:
from what I read the NHS prefers to use the term CFS.
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You are right, of course, but the NHS guidelines are very out of date, and many ME specialists as well as patients are campaigning to get it changed - the International Consensus Criteria call for the term CFS to be dropped in reference to ME as it's so inaccurate and confusing. I generally (politely) correct anyone who refers to mine as CFS and explain that the criteria for CFS are completely different, and have found that they do take it more seriously as a result. I'm thinking diabetes specialists who know nothing about it here, though, not ME specialists who are just used to the old terminology and already take it seriously.

From what you've said in other posts as well as that one, Amanda, it's clear that what you have is ME, whatever they call it
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I have met people who had CFS rather than ME, and they were much less ill, and tended to recover quite quickly (within a year or two of diagnosis).

I've found most ME specialists, as well as some of the ME charities, tend to talk about ME/CFS - when chatting with the doctor at the ME clinic I attended (whom I knew outside of the clinic already because he'd spoken at the ME group I helped run), he said that if they did not see people with CFS as well as people with ME, then no-one else would, and they were ill and needed help too, which is perfectly reasonable. Our ME group also welcomed people with CFS, PVFS, and Fibromyalgia.
 
Thank you Juliet. That's really helpful. I think the one thing that confuses me is my MRI brain scan was normal x
 
That helped me too @TheClockworkDodo, I'm still coming to terms with the diagnosis and learning (slowly) how to count the spoons, it's hard dealing with something even the 'experts' can't understand. I'm lucky my GP takes it seriously at least and I have good support from him. I'm not even sure how long I've had it since the symptoms were all lumped in with the Diabetes stuff and it's only now that's better managed that they realise there was more going on all along. I know I've been whinging about exhaustion, and brain fog, and pain for years.

Is it just me, but some days, I can't even get out of bed, let alone do anything else. There are days when the least noise upsets me and I just lie in bed in the dark with me earplugs in cos all I can handle is silence. Sounds like I'm feeling sorry for myself and I'm not really, I'm just completely baffled by the whole thing.
 
AJLang said:
Thank you Juliet. That's really helpful. I think the one thing that confuses me is my MRI brain scan was normal x
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It's not really something I know much about, as the knowledge about brain scan abnormalities in ME is quite new and I haven't managed to keep very up-to-date with research recently. But I think it's about 80% of people with a diagnosis of ME who have abnormalities in their brain scans, and then only if the person doing the scan is looking for specific things. So it may be that you are in the other 20% - and we don't yet know why some people have the abnormalities and others don't - or it may be that they just weren't looking for the right things, if they were investigating you for MS, for instance, and didn't know about the most recent research into ME and what to look for for that.
 
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