Newbie. T1. Proliferative Retinopathy

[ajq]

Hello Everyone, I'm new here but not to T1. I was diagnosed 28 years ago when I was 25. I'm on Medtronic 780g with CGM. Use Fiasp insulin. Last HbA1C 58. I have proliferative retinopathy. I had laser a few years ago (about 4), but have had some a couple of months ago due to further blood vessels appearing. At the checkup last week, they said I needed further laser so am due to go in on Thursday. I'm a bit confused about what I should and should not be doing exercise wise and very disappointed about the lack of advice I get from my hospital. I read online that I should not be doing any exercise which could increase blood pressure (due to the danger of haemorrhage). Last year I took up Body Pump (involves lifting weights) but have now given this up. I love walking, cycling, swimming and have an eliptical trainer I use at home. When pushed the consultant said I could do 'gentle' exercise but I'm now nervous if I do anything other than easy walking. Does anyone have any experience of this sort of issue? As a woman in her mid-fifties I understand the importance of resistance exercise, but from what I've read, I shouldn't be doing any. I've never been given any advice by the hospital at appointments, just told what is wrong and what they're going to do.
I've also read that many people have had injections to help stop the activity in the retina. I asked the consultant this last week and she said that was for macular issues not retinopathy.
I'm due to be back at the hospital on Thursday, so anyone have any advice on questions I *should* ask would also be appreciated.
Thanks in advance

 

[Eddy Edson]

Just fwiw on exercise - this is what the American Diabetes Association says:

Retinopathy​

Caution!
Strenuous exercise, activities that require heavy lifting and straining, breath holding while lifting or pushing, isometric exercise, high-impact activities that cause jarring, head-down activities.

Beneficial Activities
Moderate activities that are low impact (e.g. walking, cycling, water exercise), moderate daily chores that do not involve heavy lifting, straining, or the head to be lower than the waist.

Exercising With Diabetes Complications | American Diabetes Association

diabetes.org

So according to that, walking, cycling & swimming should be fine.

 

[ajq]

Just fwiw on exercise - this is what the American Diabetes Association says:

Retinopathy​

Caution!
Strenuous exercise, activities that require heavy lifting and straining, breath holding while lifting or pushing, isometric exercise, high-impact activities that cause jarring, head-down activities.

Beneficial Activities
Moderate activities that are low impact (e.g. walking, cycling, water exercise), moderate daily chores that do not involve heavy lifting, straining, or the head to be lower than the waist.

Exercising With Diabetes Complications | American Diabetes Association

diabetes.org

So according to that, walking, cycling & swimming should be fine.

Thanks Eddy, yes, I'd read that one 🙂, it's one of the reasons I decided to stop the weights. I've also found this from the Australia Diabetes association which also suggests avoiding high intensity aerobic activity. I think I'm okay with walking but am concerned about cycling and swimming. I live in Yorkshire and it's pretty hilly here so difficult to avoid high-intensity cycling. I guess if I moved from the fast lap lane to the slow lap lane in swimming, I might be okay.🙂
:

 

[Eddy Edson]

Thanks Eddy, yes, I'd read that one 🙂, it's one of the reasons I decided to stop the weights. I've also found this from the Australia Diabetes association which also suggests avoiding high intensity aerobic activity. I think I'm okay with walking but am concerned about cycling and swimming. I live in Yorkshire and it's pretty hilly here so difficult to avoid high-intensity cycling. I guess if I moved from the fast lap lane to the slow lap lane in swimming, I might be okay.🙂
:
View attachment 26355

Tracing back the references, it seems the evidence for risks is pretty weak (the ADA gives its recommendations an evidence grade of "E", the lowest) and it's always a pity to have to reduce exercise.

On the other hand, I guess I would be pretty risk adverse when it comes to sight.

Anyway, good luck! Maybe if you push yr consultant you'll get him to give more detailed consideration.

 

[ajq]

Thanks Eddy, I didn't know that about the risk level, but you're right, it's weighing it all up. I'll see what the consultant says on Thursday.
Thanks again
Amanda

 

[everydayupsanddowns]

Welcome to the forum @ajq

Sorry to hear you’ve had less-than-clear suggestions about exercising alongside your management of retinopathy. It does sound like a bit of a mixed picture research-wise, without a particularly strong and clear evidence base.

Good to hear you have an appointment coming up.

Our former admin @Northerner had some mild laser surgery some yesrs ago, and was a keen runner - I’m not sure if he was given advice about exercise in the context of retinopathy / maculopathy?

https://forum.diabetes.org.uk/boards/threads/laser-treatment-for-retinopathy.87518/#post-982789

 

[ajq]

Welcome to the forum @ajq

Sorry to hear you’ve had less-than-clear suggestions about exercising alongside your management of retinopathy. It does sound like a bit of a mixed picture research-wise, without a particularly strong and clear evidence base.

Good to hear you have an appointment coming up.

Our former admin @Northerner had some mild laser surgery some yesrs ago, and was a keen runner - I’m not sure if he was given advice about exercise in the context of retinopathy / maculopathy?

https://forum.diabetes.org.uk/boards/threads/laser-treatment-for-retinopathy.87518/#post-982789

Thanks @everydayupsanddowns
I've read through the thread you pointed me to. Interesting stuff there. Yes, the lack of clarity on advice is annoying, but at least I will be seeing the consultant soon so can ask more then. Sadly, my laser treatment could not be described as mild. I've had a lots and the biggest issue they have is finding space to put more.
Thanks again for your interest and support
Amanda

 

[ajq]

Update.
Laser yesterday went okay. Not pleasant, but needs must. Had a good chat with the consultant. She reiterated that I should avoid anything that would cause a spike in blood pressure. I explained that my blood pressure is usually pretty good (less that 120/70). She was reluctant to advise on specific exercises so I asked 'if you were me, would you go cycling?' she said she would if it wasn't too hilly. Clearly it's up to me to make a decision on how much risk I want to take. I know the benefits of exercise, both mentally and physically and am reluctant to give everything up. My feeling is to take it easy with gentle walking for the next couple of weeks and then gradually introduce gentle swimming and cycling.
I am due another appointment in 6-8 weeks for a check up.

 

[EmmaL76]

so I’m thinking you need to keep in the kind of moderate zone when you exercise. Do you have an Apple Watch or similar ? This gives you the zones that you’re working out at. I have a gym at home, over the last 3 months I’ve gotten back into it big time after a 2 year long pity party after my diagnosis. I have treadmill , weight bench and water rower ooh and a punchbag for my inner anger issues. Now not the same thing I know but a couple of weeks ago I had 2 wisdom teeth out. My dentist (also a type 1) told me not to raise my blood pressure exercising as this could cause them to bleed too much. I asked how I would know and she said keep your heart rate to moderate levels. I worked out later that day paying particular attention to the intensity the different machines required. Here is what I learnt
Running is the clear winner when it comes to cardio vascular output. So I substituted for incline speed walking. Weights have a surprising effect in heart rate, but to be honest I’ve taken to Pilates twice a day for 10 minutes at a time, and I’m getting much better results than I would with weights. For me the resistance water rower is the best overall workout. I do around 30 mins of that a day. My heart rate never goes above 120 but legs and arms feel like jelly when I get off so it’s a really good workout. I don’t know if you know much about Vo2 max, but the better this is the easier workouts become so less strain/demand on the body. My Watch tells me this also. When i started working out again mine was 32 I scored a 50.2 this morning and my workouts are so much easier. You sound like you’re physically fit so in theory you should fair pretty well in the gym. All this being said short burst in the top cardio zones are really good for your heart so I suppose in moderation ? Not sure if any of that helps at all. Ooh and one last thing, today I discovered the best overall total body work out, chasing sheep! It’s was shearing day and I needed to get them all into a small pen, I would hate to think what my blood pressure was them fluff balls are fast !!!

 

[ajq]

so I’m thinking you need to keep in the kind of moderate zone when you exercise. Do you have an Apple Watch or similar ? This gives you the zones that you’re working out at. I have a gym at home, over the last 3 months I’ve gotten back into it big time after a 2 year long pity party after my diagnosis. I have treadmill , weight bench and water rower ooh and a punchbag for my inner anger issues. Now not the same thing I know but a couple of weeks ago I had 2 wisdom teeth out. My dentist (also a type 1) told me not to raise my blood pressure exercising as this could cause them to bleed too much. I asked how I would know and she said keep your heart rate to moderate levels. I worked out later that day paying particular attention to the intensity the different machines required. Here is what I learnt
Running is the clear winner when it comes to cardio vascular output. So I substituted for incline speed walking. Weights have a surprising effect in heart rate, but to be honest I’ve taken to Pilates twice a day for 10 minutes at a time, and I’m getting much better results than I would with weights. For me the resistance water rower is the best overall workout. I do around 30 mins of that a day. My heart rate never goes above 120 but legs and arms feel like jelly when I get off so it’s a really good workout. I don’t know if you know much about Vo2 max, but the better this is the easier workouts become so less strain/demand on the body. My Watch tells me this also. When i started working out again mine was 32 I scored a 50.2 this morning and my workouts are so much easier. You sound like you’re physically fit so in theory you should fair pretty well in the gym. All this being said short burst in the top cardio zones are really good for your heart so I suppose in moderation ? Not sure if any of that helps at all. Ooh and one last thing, today I discovered the best overall total body work out, chasing sheep! It’s was shearing day and I needed to get them all into a small pen, I would hate to think what my blood pressure was them fluff balls are fast !!!

Thank you so much for your message @EmmaL76 , full of useful info and made me smile!
Yes, I have a smart watch and am a bit of a gadget freak. I also have a gym at home including cable machine, water rower and elliptical trainer. I did a small experiment on the elliptical last week pre-20 min workout BP 117/70, post 142/70 so a significant increase. Looking at HR I was in 'aerobic' - (117-132bpm) for 83% of the time and lower for the rest. So still a significant BP increase whilst not a huge strain on the heart. I don't think I'm anywhere near as fit as you (must be all the sheep chasing!) as my Vo2 max is only 35! I haven't tried the water rower for while so maybe I'll give that a go. I agree with your thoughts about 'moderate' exercise so am thinking I could just start with 5 mins of gentle rowing and gradually build up as I get better, and, like you say, the fitter I get, the less strain on the body.
Thanks again for your message and have a fantastic weekend
Amanda

 

[EmmaL76]

So was mine a couple of months ago, so don’t worry about that. Glad you found my message useful, you have a great weekend also. I might post some sheep pics if your lucky 😉

 

[ajq]

So was mine a couple of months ago, so don’t worry about that. Glad you found my message useful, you have a great weekend also. I might post some sheep pics if your lucky 😉

Wow! that's an impressive leap in cardio fitness! Yes, please post sheep pics! I could do with more smiles at the moment 🙂

 

[EmmaL76]

there we go ! 🙂

 

[ajq]

there we go ! 🙂

Gorgeous