Feet/Ankle Pain + Fluid build up

[HassleHall]

Good afternoon all,

I was diagnosed type 1 in 2015 at the age of 21, I didn't take BG control too seriously until recently after a diagnosis of Maculopathy (no indication in any eye scan leading up to this previously). Since then I've been on top of BG with a high level of control (injections) bringing my average time in range form <20% up to 70% over the last few weeks. However, I've also started to notice a build up of fluid in my feet over the course if the day causing more pain as the day goes on. There's also a lot of pain when walking for more than 10 minutes or so in the ankle area which seem to be along the lines of posterior shin splints. The typical elevation of legs and compression socks to help the symptoms but I'm wondering if anyone has experience to know if the improvement in BG control and the symptoms described above could be related or just an unfortunate coincidence?

I'm also going to sense check with GP etc obviously but wanted to see if there's anyone else's experience to draw off?

TIA

 

[Inka]

Welcome @HassleHall 🙂 Sorry to hear about your foot problems. The pain you mention is a concern and the fact it’s affecting your walking. Are your feet red or hot-feeling?

I know you’ve said you’re going to consult a doctor but I’d do this as soon as possible. When you phone, do stress the pain and the Type 1. Hopefully it’s something fairly trivial, but it definitely needs checking out.

 

[rebrascora]

Hi and welcome.

Really sorry to hear you are experiencing issues with your eyes and feet. How high was your HbA1c prior to managing your BG levels better recently? I appreciate you say your TIR was 20% but do you have an idea of HbA1c. A CGM/Libre HbA1c prediction possibly if you haven't been having blood tests done. It may be that a sudden drop in levels is causing your peripheral nerves and blood vessels to complain and in fact a sudden drop can also cause your eyes problems too. Slow and steady adjustment is the safest option, when you are bringing your BG levels down.
I don't personally recall having any swelling when I have suffered shin splints and you are usually aware of the cause.... mine was daily marching in parade shoes that were not cushioned and it was notably aching in the shin without foot pain.

I would hope that what you are experiencing is transient neuropathy as a result of a sudden and dramatic reduction in BG levels but the swelling is concerning and that the body is effecting some repair work to overcome the damage to nerves and blood vessels, which can also be a painful process. I think I would want to discuss it with my DSN or consultant rather than a GP who don't generally have much knowledge of diabetes. It might also be appropriate to have your kidney function checked if you are experiencing swelling. You are very young to be getting diabetes complications so hopefully these are transient issues as the body adjusts to more normal readings but a very salient reminder to us all that none of us can afford to ignore our diabetes.
I would also like to say well done on now getting to grips with your diabetes management. It can't be easy being diagnosed at that age (I was a late starter and very grateful for that), so my heart goes out to you and other young people like you and I really hope that now that you are managing things much better, you can keep things stable and your body will be able to at least repair some of the damage. Sending (((HUGS))) and best wishes for the best possible outcome. Do let us know how you get on and if we can help in any way, please ask.

 

[HassleHall]

Cheers for the replies @Inka @rebrascora, not only for the advice but kind words. Admittedly to date I've not immersed myself in any kind of community and only really got one friend which I've met recently that has the same diagnosis - so as you can imagine it's a pretty misunderstood thing to have to explain to people - especially loved ones - and even harder to be able to get advice for!

I'll try to be succinct answering both:

No hot or cold feeling to touch barring sometimes on the inside of the calf/ankle area.

HBA1C sitting at around the 80-85 mark at last test. Using the libra - as it stands it predicts 64 / 8%. That's only been brought down by the most recent 3 weeks since I switched up my focus so I'd imagine this will continue to plummet if I maintain what I'm trying to achieve here for another 8 weeks. On the libre, the last 2 I've used have been the only 2 that have stayed in for more than few days (so you can imagine how inconsistent my measuring has been). I've had to buy some patches to stick over them to stop the adhesive weakening in hot water and ultimately coming off fairly easily. You may be onto something with readings going from regularly being in the mid-high teens to fighting off hypos regularly as I'm in range most of the time now.

On the kidney function, upon last test it seemed all was fine however there was mention of wanting to re-test my liver further down the line if my memory serves me correctly. I've only just been given my DSN contact last week as there's been lack of overall oversight as I've moved around a lot over the years.

Happy to keep you posted if that's something you're interested in, thanks so much.

 

[Inka]

Sometimes insulin itself can cause puffiness @HassleHall so if your improved control is due to an increase in insulin that might be contributing. Also, going from higher sugars to lower sugars over a fairly short period of time could perhaps temporarily affect your fluid balance.

If you’re after people who understand, then you’ve come to the right place. There are lots of friendly supportive people here and I’ve found the forum a great support.

Do try to speak to your doctor tomorrow and let us know how things are. There are a number of things that could be causing this. Hopefully they’ll identify what it is quickly and you’ll get some relief.

 

[rebrascora]

Great to hear you now have a means of contacting a DSN. Do use them for advice and support when you need it. I know some clinics are overwhelmed with new cases and have a heavy workload and you need to be be a bit persistent to get the support you need, so do keep pushing if/when you need help.
I have been diagnosed nearly 5 years so not far behind you and for me this forum has been a goldmine of knowledge, practical advice and emotional support. Diabetes is a tough journey and being able to compare notes and get feedback form people who have been there and got the T-shirt and are sympathetic to the challenges, is priceless in my opinion.

As regards Libre not staying on, skin prep is really important to make sure the site is clear of loose dead skin and any grease. I use an exfoliating glove to give it a good scrub with shower gel and water before then towel drying and then giving it a blast with my hair drier to ensure that it is completely dry before I apply each sensor. I also purchased an elastic arm strap off ebay which has a 3D printed plastic watch face which fits over the circumference of the sensor and holds it securely to protect it from clothing (sports bras are Libre's nemesis for us females) but I have pulled one off when I impatiently ripped off a sweatshirt after a run. The strap also acts as a visual reminder when I am in the shower, so that I don't catch the sensor when I am having a good scrub or towel drying. I tend to apply my sensor after a shower on a night before bed, so that the adhesive has all night with my arm strap over it to get good adhesion before it is exposed to the trials of everyday life. I have only lost one sensor early since getting the arm strap 2 years ago and that was very exceptional circumstances. The strap occasionally gets pinged when I am undressing but the sensor stays put. Other people find an over patch gives their sensor more security. You also get better at being more careful with it over time. I used to catch door frames and reach into cupboards and catch it but you become more aware of the need to protect it as you get used to it.
I hope you can find a solution to keeping it in place that works for you, because it is an amazing bit of kit and has been a game changer for many of us.

 

[everydayupsanddowns]

Well done on your great improvements in glucose management @HassleHall

Sorry to hear about the eye troubles you have had, and the more recent build-up of fluid, and the pain in your legs

I have no idea whether it is related, but it seems that in a few cases a rapid improvement of glucose management can rarely lead to a form of edema.

There‘s a case write-up here, in case you wanted to read into it to see if there seemed to be similarities with your experience?

Insulin Edema Syndrome due to Rapid Glucose Correction in a Diabetic Patient - PMC

Edema resulting from the initiation of insulin therapy or intensification of glycemic control is a rare and under-recognized complication. In this report, we present a case of a 46-year-old patient with insulin-dependent diabetes mellitus (IDDM) who ...

www.ncbi.nlm.nih.gov

In the intro it does make it seem unusual “The diagnosis of insulin-induced edema is made after other causes of acute edema are ruled out.” So it would be important to get the other possible causes of the swelling have been checked.

 

[MikeyBikey]

Having had an BKA amputation after over fifty years of diabetes I have developed a special interest in this and particularly PAD (Peripheral Arterial Disease). I feel the condition is not fully understood by many GPs, and also not diagnosed and treated early enough as the UK has a higher amputation rate than either the US or Germany.

Saying this I think it unlikely that you have this to any degree but having met amputees who have had (badly managed) diabetes for less than ten years you need to get this checked out. Contact your DSN and ask for a Doppler and ABPI (Ankle-Brachial Pressure Index( tests. Do not be fobbed off by a feely touchy "Your pulses are fine" as a (useless) DSN said six weeks before I was diagnosed with PAD. The narrowing of the arteries affects blood flow to the foot and by default its return causing swelling If you have any problems with your team any decent podiatrist can carry out these tests.

Good luck and let us know how it goes.

 

[HassleHall]

Hey all, so sorry I've not replied for some reason I didn't get the notifications of these responses @MikeyBikey @everydayupsanddowns, thanks for taking the time that's some really interesting information.

Definitely one for me to discuss with my DSN it seems. I planned to but after a month or so of decent BG control and being a bit less sedentary (I'm in a very sedentary job and spend most of the day sitting down) it seemed to stop happening so I lent credit to the theory my body is adapting to better BG control. I've also benefitted from buying some compression boots and using them on days where I'm less active.

Apologies for all the questions, crazy to think after being diagnosed 8 years ago I've never really engaged with the process I'm just trying to learn all this now! Also on the list for T1 and Me (was DAFNE) so I'm hoping to be a bit more clued up in the not too distant future. I've posted a new thread on another issue I'm having, if anyone here happens to have time would you mind taking a look please?

https://forum.diabetes.org.uk/boards/threads/bg-spikes-through-the-night-any-ideas.109584/

TIA
Mike