Type 2 Do you know what I mean when I say 'maggoty' feeling?

[MissConStru]

Neither my doctor nor my diabetes nurse seem to know anything about this which is a bit dispiriting. After all, they're supposed to be the experts, right?

I get this sensation in my legs but occasionally in other areas about 2-3 times a week and it makes me feel really yucky, irritable and out of sorts.

My history is:
75yr old female
T2D for about 4 years
obese - (sadly not very good with diet, BMI 46)
Test blood every morning on arising and it's usually pretty good

Medication:

- metformin 500mg twice daily
- was on gliclazide 40mg daily but we're tampered with that over time, 80mg twice daily, then once daily and then 40mg once daily. This was because I kept getting pseudo-hypos (yes really) and yet my fasting BG were always pretty stable. When I'd have a hypo, it would plummet to 5 or even 3.5 (sorry I'm still on the old money!)
- was recently changed to linagliptin 5mg daily but have only been on that for a week​

My sister, who had been T2D for about 20 years insists this is a nerve problem but I, being a nurse, must of course know better! However, I'm open to any ideas.

Anyone got any comments, suggestions, ideas what this is?

 

[LittleGreyCat]

No idea what "maggoty" is.

Could you perhaps describe it in more detail?

 

[MissConStru]

A creepy crawly feeling all over my legs and sometimes my arms as well. Makes me want to stamp and wriggle my legs but doesn't really affect this sensation.

 

[Guzzler]

That sounds neurological in nature. I would mention it again to your GP. It may be unrelated to T2 but it likely needs investigating. Peripheral tingling, tightness or burning should be reported. Really hope that either you get an HCP to listen or even better that this is idiopathic and will disappear in a few weeks.

 

[Pinkorchid]

A creepy crawly feeling all over my legs and sometimes my arms as well. Makes me want to stamp and wriggle my legs but doesn't really affect this sensation.

Sounds like the restless legs syndrome but I do not know if you can get that in your arms as well I would ask your doctor about it

 

[MissConStru]

Really hope that either you get an HCP to listen or even better that this is idiopathic and will disappear in a few weeks.

What's an HCP - health care provider?

Thanks for your replies but my GP seems disinterested in it as does my diabetes nurse. And it's been ongoing for about 18 months thus far. It's not there all the time, just in phases and only lasts for a few hours. More irritating than anything. It's just my sister who keeps on about it being a diabetes neuropathy. But then she's not the nurse - I am! Lot of good that does me. My field is orthopaedic surgery!

 

[ringi]

I expect that you will feel a lot better in a lot of way if you reduce the number of carbs you eat (hence improving BG levels), so as to enable you to come off the linagliptin. Have you looked at LCHF?

Also write down your BG reading before, 1hr and 2hr after every mail, along with taking a photo of the meal, add on details of the days you get "maggoty feeling". Then look at what you have eaten on those days and the day before.

 

[MissConStru]

LCHF

What is this?

Also write down your BG reading before, 1hr and 2hr after every mail,

I've tried this but tend to forget to do the test after breakfast never mind the rest of the day! Yes I know, I'm stupid!

 

[ringi]

What is this?

see http://www.diabetes.co.uk/diet/low-carb-diabetes-diet.html to start with

But as you are on linagliptin reduce your carbs slowly checking your BG often to you know when to ask your doctor to change your meds.

 

[Resurgam]

LCHF is a low carb high (or healthy) fat diet.
By avoiding high carb foods and eating more fats than the 'normal' amount these days (that Ancel Keyes has a lot to answer for) it is possible to restore normal readings for blood glucose and Hba1c.
I just went back to doing Atkins as I always felt so well when eating the foods allowed - I use New Diet Revolution, the 2003 edition, and my last meeting with the nurse was rather gratifying. I don't take any tablets for diabetes, so you do need your meter as eating low carb is very effective and you could drop too low when pushed by medication.
I used my meter to check that I was staying low, and going lower, but after 6 months don't use it often as I am pretty well sorted out.

 

[LittleGreyCat]

What's an HCP - health care provider?

Thanks for your replies but my GP seems disinterested in it as does my diabetes nurse. And it's been ongoing for about 18 months thus far. It's not there all the time, just in phases and only lasts for a few hours. More irritating than anything. It's just my sister who keeps on about it being a diabetes neuropathy. But then she's not the nurse - I am! Lot of good that does me. My field is orthopaedic surgery!

I think you should make a clear distinction between your reaction to advice from your sister, and the quality of the advice.

You admit you are not a diabetes specialist nurse (have you even had any nursing training covering diabetes?) so you are not holding yourself up as an expert.

You are also asking our opinions and I don't think many of us are health care professionals fully trained in the treatment of diabetes.

It is quite possible that your sister is right (despite the fact that she is your sister).

 

[Sunny66]

A creepy crawly feeling all over my legs and sometimes my arms as well. Makes me want to stamp and wriggle my legs but doesn't really affect this sensation.

Restless leg syndrome?

 

[Chook]

Yes, I think it sounds like restless leg syndrome, too.

Have you changed washing powders, shower/bath products or anything else like that recently as I get a crawling feeling when I don't use my normal shower gel.

 

[jane d]

a crawly feeling under the skin is sometimes a sign of low iron levels, arms and legs. maybe get your iron levels checked. and don't get fobbed off with 'oh you're within normal range' .. normal is from 40 to 200. I was symptomatic at 60.

 

[Catlady19]

A creepy crawly feeling all over my legs and sometimes my arms as well. Makes me want to stamp and wriggle my legs but doesn't really affect this sensation.

I get this too, particularly when i am tired or high. I think it is restless leg syndrome.

 

[Hotpepper20000]

Lack of vitamin B12 also can cause nerve problems. Good to get that checked out.

 

[ringi]

Lack of vitamin B12 is a well know issue with metformin, so I think getting a B12 test would be well worth it.

http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Diagnosis.aspx
http://www.b12deficiency.info/b12-testing/

 

[Geminigirl]

I often get that too, it feels as though something is crawling under the skin. I also have had a sort of "vibrating" feeling. It's worse when I am really tired and then I can also feel "trembly" all over.

My GP put it down to restless legs and/or some nerve damage. My DN always does a six monthly dopla on my feet and ankles as well as the pricking while you have your eyes shut and the vibrating thing (bang them on table then place on your foot to see if you can feel it)

It is distracting, I find Ibuprofen and heat helps, my mum had the same and used to have Quinine tablets from her GP but don't think they prescribe them now?

I find it helps to keep well hydrated too, also, I have a tens machine (as I also have Sciatica) and that can help distract the discomfort too.

Hope you find a resolution. Xx

 

[lindisfel]

A creepy crawly feeling all over my legs and sometimes my arms as well. Makes me want to stamp and wriggle my legs but doesn't really affect this sensation.

You can get these feelings in your skin when you have liver problems. You should get your enzymes checked to make sure all is OK. My mother in law had similar problems some years ago with liver disease. regards Derek