Complications impacting MH

[T1Mumto1]

Hey everyone,

So happy to join but hate to start this forum journey so negatively.
I’m really going through it right now with complications.
Im a new mum, had some pre existing complications but since pregnancy and the birth, they got so much worse. (Unplanned pregnancy but v wanted and happy)

I had stable retinopathy and macular oedema pre pregnancy, treated with injections and laser. During pregnancy, fluid built up but injections are contraindicated. This led to multiple vitreal haemorrhages.

I recently had a vitrectomy in one eye to clear the blood and the other eye is actively bleeding therefore requiring urgent treatment.
In the process of all this, Iv developed neuropathic pain which is currently being investigated (very slowly). This pain has led me to A&E numerous times where I feel as soon as Drs see my other complications it’s just brushed off as “another complication”.

I’m taking lots of pain meds now, cannot care for my baby alone, have vision of half an eye and quite frankly Iv had enough. Diabetes is so awful and I just want to rant/gain support from others who have come out the other side.

Poor undiagnosed (now dx) mental health and neurodivergence led me here and now I’m starting to lose hope which I thought I found when I finally got good control a couple of years ago.

I want to be around for my baby’s future. I’m honestly petrified of this not getting any better and the quality of life il have.

Again sorry for so much negativity like I said I’m just really going through it right now and hoping for some advice, success stories etc.

 

[gail2]

love and hugs to u You will come thou it

 

[Inka]

Welcome @T1Mumto1 Sorry to hear your story. It must be doubly upsetting for diabetes to spoil a wonderful time. I know @Flower has had eye issues, and there are others here too who’ve had bleeds and injections. If you use the Search bar (top right of the page) and put in a relevant word, eg vitrectomy, you’ll get a list of threads where that word is mentioned while you wait for others to come along who have experience.

You could also phone Diabetes U.K. for support (number at the top of this page).

Where is your neuropathy? How was your control during pregnancy? And now? I had neuropathy briefly after my 3rd pregnancy. I think it was because I was testing less (No Libre then) and putting down feelings of weakness to low blood sugar. I used to get up, feel weak and have something sweet before breakfast. After I started testing more, I realised and stopped, but the neuropathy went on for a few months on and off. It then went. I think maybe pregnancy sensitises us to things a bit, or else it’s the changing sugars. I was never in pain like you’re describing though {{hugs}}

There are natural supplements that can work for neuropathy but you’d have to check they were suitable for you.

 

[BobbleHat]

I'm glad you've found your way to the forum - and please don't apologise about starting with negativity. I think everyone on the forum would probably acknowledge that being able to say 'this is rubbish actually' to people who 'get it' is a really valuable thing the forum provides.

Congratulations on the birth of your baby.

 

[everydayupsanddowns]

Welcome to the forum @T1Mumto1

Glad you have joined us! And as others have said, absolutely no need to apologise - being able to vent and offload about the frustrations and struggles of life with diabetes is what the forum is here for.

We all have times when our diabetes gets too much or our situation feels overwhelming. Diabetes is hard.

Congratulations on making another human, while having to do the job of a major organ. That’s an amazing achievement.

Pregnancy is such a huge change for the body, it can take a little while for things to settle after all that effort and upheaval. So hopefully some of the changes you are experiencing at the moment might resolve in time.

Hope your eye can receive urgent treatment for the bleeds, and your pain subsides.

Do give the DUK helpline a call to chat to them and get some advice and support.

Diabetes UK Helpline

Get specialist information and advice on all aspects of living with diabetes. Call us for answers, support or just to talk to someone who knows about diabetes. What is the Diabetes UK Helpline? Our helpline number is 0345 123 2399. It is a dedicated diabetes helpline for all people with...

www.diabetes.org.uk

 

[Flower]

Hello and welcome @T1Mumto1

Glad you've joined us, I'm so sorry you're having to deal with a lot at present.

Has the vitrectomy helped stabilise the vision in your one eye? It can take a while for things to settle and the vision might not be lovely clear stable vision but I hope that it has helped you. Vitreous haemorrhages are so very tough to deal with, you can't look away or do something to distract yourself but have a ringside seat to watch it happen. The waiting is so difficult to manage, waiting for new bleeds to disperse enough to allow treatment or waiting for the next check up in the hope the clinic can see the retina when all you just want is for the blood to disperse immediately. That affected me so much, it is incredibly tough to deal with.

Please don't despair. I'm living with the aftermath of proliferative retinopathy and neuropathy, I'm still here, I do have serious complications but they have become more stable over time. Having to deal with it all as well as doing the normal diabetes stuff can feel overwhelming. I physically couldn't see and felt like I was sinking in complications & my MH was at rock bottom. Like you anything new was brushed off as another complication/what did I expect which led to a misdiagnosis. It is tough to keep asking for help but complications are a mix of so many things some of which we can't control including genetics and a helping of really bad luck.

Slowly for me things started to calm down post eye and leg surgeries, trying different medication for neuropathy & I started to feel less overwhelmed, less in pain and some found hope that I could find a way to a more stable and less frightening future.

I really hope things start to settle down for you as your body and hormones settle back into equilibrium and that you get the very best help and reasurance from the eye hospital. Ask them how they see your treatment progressing so you know what the time frames are. As suggested above the Diabetes UK helpline is so helpful for advice and to talk to someone who understands & can offer support.

Best Wishes and congratulations on the birth of your baby.

 

[T1Mumto1]

You could also phone Diabetes U.K. for support (number at the top of this page).

Where is your neuropathy? How was your control during pregnancy? And now? I had neuropathy briefly after my 3rd pregnancy. I think it was because I was testing less (No Libre then) and putting down feelings of weakness to low blood sugar. I used to get up, feel weak and have something sweet before breakfast. After I started testing more, I realised and stopped, but the neuropathy went on for a few months on and off. It then went. I think maybe pregnancy sensitises us to things a bit, or else it’s the changing sugars. I was never in pain like you’re describing though {{hugs}}

There are natural supplements that can worneuropathy but you’d have to check they weresuitable for you

Welcome @T1Mumto1 Sorry to hear your story. It must be doubly upsetting for diabetes to spoil a wonderful time. I know @Flower has had eye issues, and there are others here too who’ve had bleeds and injections. If you use the Search bar (top right of the page) and put in a relevant word, eg vitrectomy, you’ll get a list of threads where that word is mentioned while you wait for others to come along who have experience.

You could also phone Diabetes U.K. for support (number at the top of this page).

Where is your neuropathy? How was your control during pregnancy? And now? I had neuropathy briefly after my 3rd pregnancy. I think it was because I was testing less (No Libre then) and putting down feelings of weakness to low blood sugar. I used to get up, feel weak and have something sweet before breakfast. After I started testing more, I realised and stopped, but the neuropathy went on for a few months on and off. It then went. I think maybe pregnancy sensitises us to things a bit, or else it’s the changing sugars. I was never in pain like you’re describing though {{hugs}}

There are natural supplements that can work for neuropathy but you’d have to check they were suitabl

Welcome @T1Mumto1 Sorry to hear your story. It must be doubly upsetting for diabetes to spoil a wonderful time. I know @Flower has had eye issues, and there are others here too who’ve had bleeds and injections. If you use the Search bar (top right of the page) and put in a relevant word, eg vitrectomy, you’ll get a list of threads where that word is mentioned while you wait for others to come along who have experience.

You could also phone Diabetes U.K. for support (number at the top of this page).

Where is your neuropathy? How was your control during pregnancy? And now? I had neuropathy briefly after my 3rd pregnancy. I think it was because I was testing less (No Libre then) and putting down feelings of weakness to low blood sugar. I used to get up, feel weak and have something sweet before breakfast. After I started testing more, I realised and stopped, but the neuropathy went on for a few months on and off. It then went. I think maybe pregnancy sensitises us to things a bit, or else it’s the changing sugars. I was never in pain like you’re describing though {{hugs}}

There are natural supplements that can work for neuropathy but you’d have to check they were suitable for you.

So it’s (to me) a strange one… it’s a shoulder nerve condition that is still being investigated. The best way I can describe it when it was at its worst was the hulk hitting my neck and shoulder then squeezing the top of my arm lol. A mixture of strong short term pain relief and amytriptiline have got on top of the worst and it’s now just more of a constant ache, sharper at night and constant pins and needles in hands. Everyone Iv seen is pretty certain it’s nerve related but I am awaiting a lot of tests (MRI, nerve conduction etc).
It’s positive to hear your story, thanks for sharing. Pregnancy can do some crazy things to our bodies.
My control was not perfect (couldn’t really get below 8% old money) until I started HCL 18 months ago. I then saw a great improvement to the mid 50s roughly. During pregnancy I managed to sustain hba1c around 40. I think there was definitely an increase due to the much higher target levels postnatal (so frustrating). I’m 6m post partum so feel things are levelling off control wise. Positive to hear your neuropathy went. I always had this idea that nerve damage is irreversible but even I saw a drop in my kidney function during pregnancy to now be back to normal so you’re right, I shouldn’t underestimate what pregnancy can do.
Thanks again

 

[T1Mumto1]

Hello and welcome @T1Mumto1

Glad you've joined us, I'm so sorry you're having to deal with a lot at present.

Has the vitrectomy helped stabilise the vision in your one eye? It can take a while for things to settle and the vision might not be lovely clear stable vision but I hope that it has helped you. Vitreous haemorrhages are so very tough to deal with, you can't look away or do something to distract yourself but have a ringside seat to watch it happen. The waiting is so difficult to manage, waiting for new bleeds to disperse enough to allow treatment or waiting for the next check up in the hope the clinic can see the retina when all you just want is for the blood to disperse immediately. That affected me so much, it is incredibly tough to deal with.

Please don't despair. I'm living with the aftermath of proliferative retinopathy and neuropathy, I'm still here, I do have serious complications but they have become more stable over time. Having to deal with it all as well as doing the normal diabetes stuff can feel overwhelming. I physically couldn't see and felt like I was sinking in complications & my MH was at rock bottom. Like you anything new was brushed off as another complication/what did I expect which led to a misdiagnosis. It is tough to keep asking for help but complications are a mix of so many things some of which we can't control including genetics and a helping of really bad luck.

Slowly for me things started to calm down post eye and leg surgeries, trying different medication for neuropathy & I started to feel less overwhelmed, less in pain and some found hope that I could find a way to a more stable and less frightening future.

I really hope things start to settle down for you as your body and hormones settle back into equilibrium and that you get the very best help and reasurance from the eye hospital. Ask them how they see your treatment progressing so you know what the time frames are. As suggested above the Diabetes UK helpline is so helpful for advice and to talk to someone who understands & can offer support.

Best Wishes and congratulations on the birth of your baby.

thanks for sharing your experiences and I’m glad you feel there is light at the end of this awful tunnel. I really hate that assumptions are made sometimes and therefore misdiagnoses like you said. I feel so lost in all the discussions also. My endo sent me to see a rheumatologist who was very helpful but I (maybe naively) thought neurologists dealt with nerves. No MRI slots until mid December either so just feels a bit bang head against wall sometimes. All meanwhile I feel I’m missing out on raising my baby

I’m one week post op with the vitrectomy and cannot see anything clearly at all. The eye clinic is usually good with seeing me if I’m concerned. I assume this is just part of the healing, I was told 1-2 months. My injection for the other eye is happening next week. Iv been receiving treatment for around 8 years unfortunately.. I thought this was the norm until I read other posts! My eyes respond well to injections which always kept them at bay … obviously until pregnancy.

I will reach out to the helpline definitely.

Thanks again

 

[Flower]

it’s a shoulder nerve condition that is still being investigated. The best way I can describe it when it was at its worst was the hulk hitting my neck and shoulder then squeezing the top of my arm lol. A mixture of strong short term pain relief and amytriptiline have got on top of the worst and it’s now just more of a constant ache, sharper at night and constant pins and needles in hands. Everyone Iv seen is pretty certain it’s nerve related but I am awaiting a lot of tests (MRI, nerve conduction etc)

That sounds like it could be carpal tunnel, I had agonising pain from my shoulders all down my arms much more intense at night and chronic pins & needles in my hands constantly. I had surgery on both wrists to relieve pressure on the median nerve& the surgery relieved the agony. I hope you get help & relief from it. Carpal tunnel can affect the whole arm from shoulder to fingers & is more common with diabetes

 

[T1Mumto1]

That sounds like it could be carpal tunnel, I had agonising pain from my shoulders all down my arms much more intense at night and chronic pins & needles in my hands constantly. I had surgery on both wrists to relieve pressure on the median nerve& the surgery relieved the agony. I hope you get help & relief from it. Carpal tunnel can affect the whole arm from shoulder to fingers & is more common with diabetes

Good to know, I have a close relative with bilateral carpal tunnel affecting their wrists. Didn’t know it could be in the shoulder too. Was it a long process getting through tests/diagnosed/treatment? I don’t think all my investigations will be done this side of Christmas unfortunately.
Glad the surgery worked for you - nerve pain is simply awful.

 

[Flower]

Didn’t know it could be in the shoulder too. Was it a long process getting through tests/diagnosed/treatment? I don’t think all my investigations will be done this side of Christmas unfortunately.

It took well over a year of going through the various steps, nerve conduction tests, wrist splints, steroid injections whilst the hideous nerve pain carried on every night down my arms. By the time I saw a hand surgeon I’d lost the muscle mass at the base of my thumbs which happens in advanced carpal tunnel & was put on a list straight away. I had both wrists operated on about 6 weeks apart, it was an instant improvement.

I hope it doesn’t take too many months to get through the investigations. Best wishes

 

[stephenS50]

Hello there @T1Mumto1 ..so sad to read about the serious problems you're been having and I hope and pray that your health drastically improves.