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Muscle pain, fatigue and brain fog

Celsus

Well-Known Member
Messages
483
Type of diabetes
Type 1
Treatment type
Insulin
Dear fellow insulin addicts!
I have so far had a rather rich worldwide job/traveling/sporting and reasonable easy life with my diabetes. Always on top of it and in tight control. Here now a couple of years back (yep, sorry this took my surplus power away, so have not been here on the forum for some time), I started suddenly within just a few days/weeks time to experience drastic muscle pain and fatigue while at times having symptoms aka 'brain fog' with challenge to really focus on solving complex problems etc. which is part of my daily job. The kind of pain was not typical diabetic neuropathic, as it was in the large muscle groups in legs and later also in the upper arms.
Have over the past 18 months gone through virtually everything a human body can be tested for:
Neurology, psychiatry, brain/body cancer checks with MRIs scans etc, rheumatology, rare genetic muscle/neuro diseases, etc etc.
Nothing came out with any hints of anything wrong, except that I was low on D vitamins and that the electro myography indicated a lower amplitude but prolonged signal to the muscle cells compared to normal when contracting. So no fatal disease of any kind but also no real explanation or resolution to my misery. The rheumatologist recommend I started taking a few supplements to ensure all vitamin/minerals/anti oxidants were all boosted to the max, so done that for some 3-4 mths by now. The muscle pains have mainly gone, but the fatigue and occasional 'brain fog' still comes and goes. The werid thing is I have not been able to connect it with anything really regarding my life/activities as such. And it comes more severely in some unpredictable periods. E.g. as soon as I wake up I can say if this is going to be a tough day with fatigue or not. The muscles are getting this burning sensation like lactic acid building up, like when you run 10 miles or go downhill skiing on moguls. And it comes then very quickly, like when just running up 1 flight of stairs or holding your mobile phone to your ear for 3 minutes...
In my desperate search for answers I of course consider the IDDM Type1 as a possible avenue. I noticed that in same period I suddenly have become allergic to something (sneezing, running nose, without being positive in any of the allergy tests at the hospital) and also I suddenly had a rash of Vitiligo, where some minor spots on my skin now has no color pigment. Never had any of those before. But all has stabilized of this. It simply just started all at the same time, as like ones immune system went crazy for a period of time.
I then came across a couple of posts on this forum written 5-8 years back, where some had written about similar symptoms on muscle pain, fatigue and 'brain fog'. And that they had terminated using analogue insulins. As I am a sceptic realistic but sincerely willing to learn more, I would enjoy to hear from such individuals again today, to hear if their improvements were sustained after they switched to either human or porcine insulin?
Muscle pain and fatigue is unfortunately a very common symptom for many various diseases, so challenging to weed out the 'relevant from the noise'. But I am very eager and willing to try to drop my love for NovoRapid and Lantus, if old fashioned insulins can give me my life back!
 
I suppose the only way to rule out the possibility that your insulin may be the cause is to change it for a few months and see if there's any releif, you could return to your preferred regime if it turns out that it was not responsible.
The human body is a funny old machine, it can tolerate some things for years before it starts complaining. Good luck.
 
Give either Levemir or Tresiba a go as long acting insulin and Humalog or Apidra as short acting. They are the alternatives to what you currently have and you may be surprised at the outcome @Celsus .
 
Thank you all for your kind input above!

Responses in line:
@Bluetit1802, no I am not taking any statins. The only medicine I take is my insulin and then those generic vitamin/mineral pills.

@Guzzler, yep and that funny old machine is not getting any younger. I did actually read about some diabetics experiencing Lantus complications first after having been successfully using it for 8-10 years without any issues. So will take your advice and get on with trying alternatives. If no improvement, I can always go back as you say with no harm done.

@tim2000s, so you don't think I need to give up the analogue type of insulins?
Reading the past testimonies claiming they got rid of the pain/fatigue/brian fog, they all went back to either human- or porcine insulins. Even for an old veteran like me, that will pose some challenge to keep the bg as perfectly tight with those old stoneage tools. ;o)
 

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@Celsus - Is it fair to assume your thyroid and potential for Coeliac Disease has been ruled out?

I too have been through a massive raft of tests over the last several months. although for differing issues t you. On the upside, I have been delighted to learn that loads, and loads of bits of me seem to work pretty well.

On the downside, I still don't have a reason or diagnosis.

A few months ago, the Endo, having spent a long time going through a deep family medical history (and other stuff), recommended that I go gluten free. This was as he was ordering up the Coeliac screening. His rationale was he was pretty certain I had to have "something" AI, due to the historical family load, and to paraphrase his statement, "I'd recommend you go GF, and folks with AI conditions do very well on it".

All tests were negative or inconclusive.

To my point (honestly!), I adopted the GF way of living and there was no impact, until I realised I just felt a bit brighter and other, small room centric (ahem) things improved. No other changes were made when I went GF.

It can take several weeks, sometimes months, to see improvements, if there are going to be any. from a GF way of living, but these days I certainly know about it if I trip up and some sneaky gluten gets onto the scene. When I trip up, one of my symptoms is an utterly crushing fatigue whereby I really uncharacteristically just want to sit on the sofa and do absolutely nothing. My joints; hands and shoulders (mainly), also become rather sore, but the pain is a sort of arthritic type pain. I was negative for rheumatoid factor etc. It takes a few days for the very acute phase to subside, and a bit longer to get over the associated tummy issues; around 2-3 weeks in total, to disappear, for me. It has been a shockingly astonishing phase, but for now, I'm staying GF.

I'm not suggesting you dive headlong into GF, as it's a bit tricky doing it properly, and quite a big commitment, and for all I know it might impact on your diabetes management.

I'm now being transferred to the Rheumatology bods for them to have a go.

I really hope you get some insight soon.
 
Celsus said:
Reading the past testimonies claiming they got rid of the pain/fatigue/brian fog, they all went back to either human- or porcine insulins.
Click to expand...
There have been reports that moving off just Lantus can assist with that, so it's worth a try.
 
Hi @DCUKMod, yes indeed, the thyroid levels have been checked thoroughly, nothing wrong there at all.
Likewise unfortunately for the Coeliac Disease and gluten intolerance.
Been in this quack mire now for 2+ years and still no firm answers or hint of diagnosis. As you say, one should probably be very happy that all tests have come back negative so far, as some of the stuff they tested initially were indeed with rather short term end-of-life consequences.

Still frustrating though as not feeling back at the 100% one used to feel 24/7 despite the diabetes-monster as companion for life.
You wrote that your rheumatologist still proposed to go off the gluten despite the results came back negative.
Does that mean that a negative result alone cannot be trusted? Aka, a false negative? I thought you could only have false positives for that test, but happy to learn more? Can certainly see that several of the symptoms matches my situation. Personally I have no problem with the discipline regarding diet constraints, though perfectly understand it can be challenging especially as I travel abroad non-stop. But if that could help to eradicate the symptoms, I would go for it any day. I thought also you needed first a full genetic test of the HLA DQ2 and the DQ8 gene pairs, where you would need to have at least one of these being positive to have Celiac Disease? And if any of those came back positive, you should get a biopsy done of your small intestine to confirm? As far as I understand, my genetic testing came back with negatives on both genes. So no purpose to go onto the biopsy.

Fingers crossed also for your diagnostic.
The Rheumatologists are typically the most brainy and systematically thorough of any doctor, so you should be in good hands!
 
tim2000s said:
There have been reports that moving off just Lantus can assist with that, so it's worth a try.
Click to expand...
OK @tim2000s, as an old friend here I took your advice straight, made my note on what insulins are available here in pen-format in the country I currently reside in. Yep, they were not familiar with Tresiba, which otherwise was my personal favorite to replace my Lantus. And down to the local doc for the prescription and on to the pharmacy, where after a short-order delivery I now got all my new drugs.
So now Tim you even force me to have to chance my good old signature on this forum! ;o)

As already from this evening dinner I will go onto using Lilly's Humalog. And for the basal my compromise will be switching to Novo's Levemir. Only question is then, if this will be the 'magic game changer', how long will it take before it becomes evident?
Aka, how long before the ancient analogues are flushed out of the body and the muscle/nerve tissue restitutes...
Exciting times ahead !
 
Have you considered being low in magnesium ? The symptoms are a possible fit :
http://www.ancient-minerals.com/magnesium-deficiency/symptoms-signs/
Geoff
 
Sounds like fibromyalgia .... unfortunately. Your rheumatologist should've considered this when all other tests were ruling out conditions with similar symptoms. The allergic reaction too (though I've never had that) because it's an autoimmune disease....yet not lupus....
Amitriptyline and pregabalin are the meds that currently ease mine. Normal painkillers don't work.... mine came on after a bad chest infection as did my arthritis (yet it was ruled out as rheumatoid )

Not checked for ages but www.fibromyalgia .co.uk (I may be wrong but f you google it it should come up) a site in many ways like DCUK with info & forums
Hope this helps
 


Hi Celcus, I do understand how it feels leaving the consulting room with a list of 20-odd tests, then going home to look them all up, then thinking "Holy mackerel - I don't fancy any of that bunch!"

I have remained GF even with a negative test result. As a long term user of LC, I haven't had to give up masses and masses of food or drinks, but I have gone through a whole new learning curve on food labels. You'd be horrified where gluten lurks. Stuff like malt vinegar, soy sauce, Worcestershire sauce, but it's amazing how one just gets into the routine. It does make eating out a bit trickier, so it does mean I would tend to go for pretty simple dishes, and nothing with coatings.

By virtue of holidays and so on, it was a few weeks before I could see him again anyway, and I had recently noticed feeling a bit brighter, then he had a bit of a prod around my tum, and declared it "less tight", so on his further recommendation, I decided to stick with it. The period of strict abstinence does appear to have heightened, which is clearly less desirable.

If anyone were bored, we could have a poll on what I'd gone to the Doc for, because sure as heck it was nothing to do with my digestive tract.

Byebye Endo. Hello Rheuma. Neurology and body scanning likely awaits.

I really hope your change in insulin works for you. That would be so fantastic.
 
I was on Lantus when it first was introduced. And after a few month the pain in my legs was crippling. And many other users experienced the same. I moved to Levemir and all the pain disappeared. If your care team agrees ask them if you can try Levemir or something similar.
 
Thank you all,
@Brunneria, @librarising, @Sable_Jan, @DCUKMod and @maria030660 !

Changing insulin types/brands is of course an inconvenience but not really that hard if one has to. Don't no why I didn't do it earlier, as if that would do the trick then that would be the easiest cure to feel great again I ever could imagine! (don't know still if I really believe it can be that, but from all your testimonies I have to give an honest try. ;o) Read also a couple of studies where very few T1s had indeed been on Lantus for even up to 8 and 10 years duration with no issue and then suddenly started to experience similar malaise I have described. And that they after going off Lantus felt these went away. I have actually taken Lantus probably now for 15 years, so strange to think about actually. But yes, I changed beginning of this last weekend, so now I am no longer a sworn NoveRapid/Lantus lover, but gone to the 'arch enemies', using Lilly's Humalog and the Novo Levemir. Suppose I should give it at least 3 months or so before judging the result?

@maria030660, did you experience the pain when using Lantus from the very beginning or it didn't appear until after you had used it for weeks, months, or? So for how long did you use it before experiencing the pain and how quickly after you stopped did the pain go away? And I suppose you mean generic body/muscle pain/fatigue and not specific related to the injection site? I am aware that some unfortunate diabetics have experienced such local site complications with both Lantus and Levemir.

@librarising, I did get all vitamins and minerals checked out, so though some at lowish levels, it was really only the B12 and especially the D vitamins that really needed a boost to get into 'healthy levels'. I have also since then started to take a standard cover-all multi vitamin/mineral pill on a daily basis. Nutritional uptake is of course poorer with age but think I get what I need now of those. Subsequent blood analysis have confirmed certainly for the B12 and D vitamins.

@DCUKMod and @Sable_Jan, I cannot recall the reasoning by the neurologist and the rheumatologist for discarding the idea it could be Fibromyalgia or the Celiac? I think it was potentially because I did not have any raised inflammation markers in my system and certainly until recently I did not appear to have pain or stiffness in joints or ligaments. And no connection to worsening pain after hard exercises (payback), which I think FM would give? Your explanations of false negatives makes me of course intrigued if I have to go back and challenge them again regarding those specific potential diseases.

Strange thing is that with the symptoms I have and going to bed tonight, I cannot say with any certainty if it will be better tomorrow or worse. But it does change and then 'stabilizes' for shorter or longer periods of time, going from ok to worse or from worse to better, which also puzzles me a great deal. As no apparent connection to what I do, eat, bg, weather or anything else. I definitely promise to come back and shout it out loud and clear if getting off the Lantus clears the matter!!
 
I am very interested in your findings, for the last 6 months I've had awful problems with my legs and arms, joint pain, brain fog and severe fatigue, for periods I've been bedridden because the thought of getting up is so daunting! and just like you've I've had 101 tests and all that has come back is α lack of Vitamin D!! so I can relate to your problems extremely well, I felt oddly happy reading this as I too have been desperately searching for answers but have nothing.. I have turned on notifications for this post, please get back to me if you find anything useful or even drop me α message, these symptoms can't be α coincidence, all the best of luck x
 
Very interesting posts - I too have been desperate to find answers for similar symptoms. On a daily basis I suffer with muscle aches and pains. Particularly neck and shoulders. I get burning pain all over on occasions as well as nerve pain in legs and up shins and hands sporadically. Frequently I wake up with what feels like swollen hands and ache up my hands. I had what initially was diagnosed as frozen shoulder a cpl of months ago - but quickly improved with naproxen so I don’t think that is what it was. I have brain fog every day - it has improved a little with a lower carb diet but I am still slow thinking and spacey and forget what I am doing many times over throughout the day. I have so many food sensitivities- I’m sneezing and congested most mornings. For what I eat my blood sugar should be so much better (h1bc is 53%) I had been on Lantus until a few months ago and got switched to Levemir x 2 daily. Over all I’m taking less insulin in past cpl months - sometimes I really wonder about what’s in the insulin. I have so much faith in medicine and medication. I have a corn tolerance and the pharmacists solution is to go onto a brand with maize instead (instead of cornstarch) - so that’s probably poisoning me too. Is there any corn derivatives in insulin I wonder - it’s practically in most meds as some kind or other of filler. In my case it’s hard to say what’s causing all my issues as I have an under active thyroid too and about 2.5 yrs ago I had a severe DKA (wrongly diagnosed as type 2 eight years ago - am LADA) after a cpl of years of chronic burnout with my job and active alcoholism. My short circuits were well and truly blown up lol. I have been blessed that I am now 13 months sober and live a simple life where I continue to make big efforts with diet etc but I suffer a lot daily and it does feel overwhelming at times. I was put on Gabapentin but after a cpl of days I stopped as I was just too spaced and didn’t like it. I have been referred to a rheumatologist but it’s taking forever and I am dreading explaining all the things I have and a fear of not being taken seriously. I do apologise for going off track a bit here. I think I needed to vent there
 
If someone was diagnosed and had ketoacidosis at that point, how long would it be before they were supposed to be feeling not-****** at normal blood glucose numebrs?

I was told a couple of weeks. It has been a lot more than a couple of weeks and I still feel like I've been put through a mincing machine 2/3rds of the time.

When would be time to start connecting this with the problems described here? I take Lantus, I mean, could I be having some sort of reaction to it?
 
I was diagnosed in August and saw the consultant end of October who said it can take months to get over our accidental 'sugar addiction'. Basically we've got used to running with our blood full of sugar and once we start taking insulin and it drops we're asking our bodies to go cold turkey on the sugar drug. Everyone told me I'd have more energy when the insulin kicked in, but instead I feel like I could sleep for weeks!

Apparently our metabolisms need to get used to the new normal.
 
Yes that's exactly my experience.

I just don't consider novorapid my friend, I consider it a necessary evil...
 
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