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Wayne says hello

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.

Waynes

New Member
Relationship to Diabetes
Type 2
10 years ago I was diagnosed as a type 2 Diabetic. Over time I have controlled my high sugar levels through dietary restriction, then medication cocktails of various tablets and increased dose. Nothing seemed to work, averaging levels of between 16.5 to 30 mmol, until 4.5 years ago I decided to go onto a whole food plant based diet. six months later at my annual testing the results showing a marked improvement and the diabetic team saying excellent everything is normal. I had lost 20kg and was regularly taking 1.5 to 2 hour walks with my dogs.
March last year COVID struck, my team all decided for their own safety to work from home, this forced me into 12/14 hour shifts 7 day weeks with 1.5 hours drive each way to work. Simplifying the story my sleep patterns reduced, the physical demands increased and major stress levels crept in to my life. In July I felt unwell, my blood pressure and sugar levels rocketed, so I consulted with my GP. Over the next13 months the Doctor gave me either increased or new medication with each change asking me to return in 3 months for a blood test to see how effective the change had been. Nothing worked and I stayed elevated and started showing new symptoms, tingling in my fingers and toes developing in to pain in my foot, calf, thigh, buttocks, shoulders, chest, upper and lower arms. in early August I was diagnosed with autonomic and peripheral Neuropathy. There was more medication introduced to help get my blood sugar and pressure under control and help with the pain I was experiencing, whilst still holding down my Job. The Doctors sent a referral letter to the hospitals diabetic team to get me in front of a specialist on the 23rd. I have had the pain relief medication increased 3 more times and have had to sign off on the sick. Each night I get about an hours worth of sleep before my feet and ankles start to contract and twist into painful positions. I have been to the ACU, MY GP, CALLED 111, spoken with diabetic UK specialists, the hospitals diabetic clinic, the surgeries diabetic nurse and an out of hours Doctor about this intolerable situation asking for support in getting someone to take a look at my feet and ankles and suggest to me what is going on. The responses have been either, wait for your appointment letter, we don’t know enough about your condition so seek a specialists opinion or we are busy with other patients so wait your turn your appointment will come when it comes, we are catching up after the pandemics impact on our department.
My own research into my symptoms is suggesting something called Charcot foot syndrome but I cannot find any remedies or remedial actions that can help me manage whilst I await the letter. I am unable to walk without pain and I am barely managing to get from my lounge to my kitchen. My mental well-being is struggling with this constant torture and I am not sure how much more I can take. My positive approach to life is starting to fray at the edge, so if anyone has any thoughts or supportive suggestions please let me know.
Thank you for taking the time to read this message and I am sorry if it sounds like I am just complaining
 
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I keep my blood glucose under control eating low carb, so I can't help with diet, but when I had problems with the circulation in my lower legs and feet after the first covid jab, and needed two lots of antibiotics for swollen toes, I got some ginko biloba tablets.
They have sorted out my circulation - I was trying hot and cold water sprays, massaging - which helped a little but the ginko tablets made a difference in a few days. It would have been well known from the days when there was a herbalist on every high street. Do check with your GP for any adverse interactions with medications.
 
Hi @Waynes and sorry to hear about your troubles...you have really been in the wars. Covid has a lot to answer for besides the obvious. I think @Flower has Charcot's Foot but I'm not sure how it's controlled, so I've tagged her in case she can help. Hope you don't mind @Flower!
Sorry I can't be of help otherwise, I just wanted to wish you well and hope that your appointment comes through soon.
 
Hi @Waynes and welcome

I'm sorry to hear the problems you're having. Covid has delayed clinic appointments across the board certainly for diabetes services. Things are starting to improve so I hope you do get a referral as soon as possible.

Are your feet swollen, red/discoloured & feel warm to the touch? Did the pain come on quickly or has it been a long term issue, my Charcot foot happened very suddenly. Is the level of pain the same in both feet & have you lost sensation in your feet and toes? When you say they are twisting and contracting have your feet changed shape permanently or is it muscle cramp causing contractions that eventually go away? Often the level of pain experienced with Charcot foot is reduced due to loss of sensation from neuropathy. Sorry for all the questions!

This covers the symptoms of Charcot Foot from the Diabetes UK site

Get a gp appointment and ask to be referred to a diabetes podiatrist - again this is a service that has been affected by Covid but emergency clinics are still running. If it is Charcot foot it needs to be diagnosed and seen quickly, if it is neuropathy but not Charcot the best way to try and reduce the pain, pins and needles, overnight cramps is to get blood sugar reduced in range and as stable as possible and get blood pressure controlled. It is a tough job but it is the very best approach possible for trying to improve the situation and relieve some of the symptoms. Charcot foot usually requires immediate protection and non weight bearing in a cast to protect the damaged tissue/softened bones and prevent bone collapse, it is thankfully a pretty rare complication and I hope you do not have it. I think it doesn't usually hit both feet together at the same time although I'm sure that is possible, the issues I've had with Charcot fractures in different feet were about 1 year apart in onset.

What medication have you been prescribed for the pain you're experiencing? Amitriptyline, duloxetine, gabapentin, pregabalin are drugs often used for neuropathic pain but they take some juggling to find a dose/combination that works best. I find normal painkillers don't have any effect on my neuropathic pain.

If it is Charcot foot then you will be seen at a high risk podiatry clinic but until you know what is causing your issues getting an appointment is the starting place. Best Wishes
 
That sounds awful Waynes, has anyone suggested insulin for your high blood sugars? I can't help you with the pain you are in but have to say your lack of care by the HCP's is outstandingly bad imho.
 
Thank you for the kind words and suggestions, reading all your responses made me feel that I am not alone.
To @Flower
my feet are swollen my left foot is showing the worst symptoms and was the first limb to give me problems. There is a red / pink tinge from my ankle to my toes and red/purple discolouration to my big toes and the one next to it on both feet. To the touch there is a difference in temperatures on these toes (hotter) compared with the rest my feet. But this changes throughout the day. Initially I was showing systems of tingling in my toes and although my feet felt like ice, when I touched them they were warm/hot. These new symptoms and sensations have progressively gotten worse over the last three weeks. It is an unusual sensation of numbness and pain, with what feels like a strangulation from ankles to toes, the left is more pronounced than the right. My feet seem to be curling in on themselves, and I go through the whole day with this feeling of my feet being crushed progressively getting worse in the evenings. I get about an hour to an hour and a half’s sleep during the night before it becomes intolerable and I have to get up. Walking is becoming impossible and the stairs in my house have suddenly turned into a mountainous saga when ever I have to ascend or descend them.
By the end of June 21 i have been able to get my blood pressure and sugar levels down to normal 5.5 to 10 mmols depending on food intake and testing. (Sustained).
prescribed medication for the neuropathy is 60mg Duloxetine, 1mg lorazepam, 500mg naproxen twice daily, 2 co-codamol 4 times daily.
all of the above is on top of the other complications and dysfunctions I am experiencing. But like you say it’s about getting in front of someone who can give me a true diagnosis and help me to come up with a remedial plan. fingers crossed it isn’t Charcot foot. I’m thinking of just turning up at the A&E again and see if I can get some support from there.
thank you for listening and I am sorry if I seem to be ranting too much, things are just becoming intolerable
regards Wayne
 
Would a private podiatry appointment be an option for you? That will be a quicker way to get some advice about your feet but I appreciate it is an expense.
 
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I have had the same thoughts and I am going through the internet to see what options I have and who is available. Great minds
 
So sorry to hear what a difficult time you have been having @Waynes

Hope you can get access to the care and support you need, and get your feet looked at.

Have any changes been made to your meds to try to have a positive impact on your BGs - those levels you mentioned must be making you feel pretty grim in themselves, and may be exacerbating the discomfort from your neuropathy :(
 
Hi everyday

no one wants to take ownership of my meds plan. The hospital consultant told me they did not want to make any changes and that it would be safer to ask my GP.
My GP told me they did not want to make any changes until I see the Diabetic consultant.

can I please ask what does BGs stand for?
 
BG stands for blood glucose and refers to the readings you get from a blood glucose meter when you do spot tests.

Sympathise with you and the problems in getting somebody to own your problem. I believe that in the medical profession what you are seeing is referred to as patient ping pong. GP says it is up to the consultant, consultant replies its down to the GP who says it is up to the consultant, and so on. Sad to say, it's only by making a nuisance of yourself that you have any chance of breaking the cycle so pester both your GP and the consultant until things change. Such is the current state of the NHS.
 
BG stands for blood glucose and refers to the readings you get from a blood glucose meter when you do spot tests.

Sympathise with you and the problems in getting somebody to own your problem. I believe that in the medical profession what you are seeing is referred to as patient ping pong. GP says it is up to the consultant, consultant replies its down to the GP who says it is up to the consultant, and so on. Sad to say, it's only by making a nuisance of yourself that you have any chance of breaking the cycle so pester both your GP and the consultant until things change. Such is the current state of the NHS.
Try writing to the GP...snail mail. Print off your Diabetes UK posts and include them.
Do they have different GPs at the same practise you can do like wise to all. In that way they surely have to register your ill health predicament and attend to your problems. I have written to mine instead of phoning as it it easier for me to explain and I think easier for them to digest. I have always had a reply or response.
Don't forget to include your DOB, National Health Number and contact details so they can phone or write back. worth a try. Good luck.
 
Hi everyday

no one wants to take ownership of my meds plan. The hospital consultant told me they did not want to make any changes and that it would be safer to ask my GP.
My GP told me they did not want to make any changes until I see the Diabetic consultant.
Ugh! How frustrating for you! Hope you manage to break the cycle soon, and get some positive input or a least a decent discussion about your needs, worries, and wanting to find a way forward.
can I please ask what does BGs stand for?

Oops! Sorry… slipped into forum shorthand 😛

If you get a bit befuddled by any forum acronyms and shorthand, there’s a list of explanations here
🙂
 
Thank you all again for your support.
through various alternative searches I was able to obtain some senior diabetic consultants, within the NHS, email addresses and secretaries phone numbers. I got put through to Mike who arranged an appointment for Friday just gone, Heartlands diabetic department. The podiatrist team gave me a rigorous check up and have decided to admit me as an inpatient. The things we have discussed at the consultation have terrified me. The severity of my condition, the lack of a cure, the becoming a dependent, the impact on everything I used to do and what I can now do, the lose of my ability to work, the lose of my driving license. To be honest I have had a little cry.

I have decided I need to take things one step at a time. I’m not sure if I am correct but I decided not to share all of the doctors concerns with my family. I want to wait until I have got everything clear in my mind and go through the hospitalisation tests and conclusions, before I start to worry anybody else With what it all means.

I am not sure if I will be able to get WiFi whilst on the wards so I’m signing off for the next two weeks. can I please ask you if going forward I should move forums with this conversation?

kindest regards Wayne
 
I am not sure if I will be able to get WiFi whilst on the wards so I’m signing off for the next two weeks. can I please ask you if going forward I should move forums with this conversation?

Hope it’s a helpful stay @Waynes

Entirely up to you where you next post. if you think adding to this thread will prove extra context and mean you won’t have to repeat backstory, then carry on. Alternatively you might prefer to start a fresh thread in ‘General’?
 
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