Anybody? Please help!

[Frenchfancyxoxo]

This is my first ever post, please help

Hi All,

Here goes for a super long post but I urge you to please read and help me with any tips that you may have if you have experienced the same. I am 27 years old, I was diagnosed with T1 in 2012 at the age of 21. I have 3 children. Since becoming diabetic, I have let it take over my life. Last year I developed an eating disorder through trying to lose weight and for around 1 1/2 years I refused to look after myself and do insulin, I would only inject when I was so tired that I knew my blood sugars would be through the roof. I went to the doctors to seek help. I was admitted to hospital 3 times last year for an infection that no body could find the cause of. Eventually I was told but a Dr that it was probably a urine infection because they aren't detected on blood tests. (RIDICULOUS because I had NO symptoms for a urine infection whatsoever). I cannot fault the NHS, they have been amazing but I am at a loss. My last hospital admission was 29th August last year, temp of 40, heart rate 153 BPM. again, no cause of infection, not sepsis. Anyway, I have been signed off from work since October last year due to intense chronic pain in my legs, I have had multiple blood tests done, MRI, CT scan and X-rays. Cannot find the cause for the pain, I have also had a nerve conduction study done and that came back fine (which I am really grateful for). However, that has lead me back to square one. There is no cause for the pain, its so intense my children have seen me screaming into towels, biting pillows and sob daily for months. I am still signed off of work now. About 10 days ago I made the discovery the long acting insulin I was taking (toujeo) is closely linked to Lantus, which has been known to cause pain in the lower limbs. I instantly switched back to my Levimere. I haven't experienced the extreme pain since last Tuesday, however, it came back yesterday and I am devastated. My body is truly exhausted, mentally I am exhausted trying everything I possibly can, researching all I can, eating the right foods, keeping blood sugars stable. I cannot exercise because the pain has caused my legs to weaken. I read tonic water can help but it hasn't. Has anyone else experienced this with Toujeo insulin? Even Lantus? Its ruining my life, when the pain comes, I want to give up and stop fighting, selfish I know but I see no other way out. I cannot afford to get help privately, I have looked but just for a consultation is £150-£250. My children are suffering, I am suffering. If anyone can please help me, even if they have experienced it and can give me some hope that it will go away. I don't know what else to do anymore and I am extremely desperate. Thank you x

 

[Juicyj]

Hey @Frenchfancyxoxo and welcome to the forum

Firstly would you like me to move your post to type 1 so it's more visible with t1 members ?

Sorry to hear about your pain, no wonder you're feeling so desperate. Can I start by asking you what your control is like currently ? So are you taking insulin to cover your food eaten and keeping your blood glucose levels in single numbers ?

Do you have access to a diabetes nurse ?

Diabetes is a horrible condition and when you don't maintain control it can literally take over your life, so sadly by not taking insulin and managing your levels then complications start to unfold and creep into your life, you can have a healthy life living with t1 but it involves taking care of yourself, I am pretty certain you would much prefer to be healthier than slimmer and i'm sure your kids would also want a healthy mum, is there any other reason that's driven your desire to lose weight ?

Lots of friendly t1's here to help support you, sounds like you're ready to take control of things and improve your quality of life, so hope we can help

 

[Frenchfancyxoxo]

Hey @Frenchfancyxoxo and welcome to the forum

Firstly would you like me to move your post to type 1 so it's more visible with t1 members ?

Sorry to hear about your pain, no wonder you're feeling so desperate. Can I start by asking you what your control is like currently ? So are you taking insulin to cover your food eaten and keeping your blood glucose levels in single numbers ?

Do you have access to a diabetes nurse ?

Diabetes is a horrible condition and when you don't maintain control it can literally take over your life, so sadly by not taking insulin and managing your levels then complications start to unfold and creep into your life, you can have a healthy life living with t1 but it involves taking care of yourself, I am pretty certain you would much prefer to be healthier than slimmer and i'm sure your kids would also want a healthy mum, is there any other reason that's driven your desire to lose weight ?

Lots of friendly t1's here to help support you, sounds like you're ready to take control of things and improve your quality of life, so hope we can help

Yes please that would be great, this is my first time posting so I wasn't sure how it worked! Current control is great, no higher numbers than 9 over the last 6 months. I really changed my ways after I came out of hospital last August. I take my insulin regularly and glucose levels are good. I am yet to get a recent hba1c but I know it would be at least half of what it was. I have access to a great GP and a great diabetes nurse but they are at a loss as to what the pain is and could be.

I am now not fussed about my weight, I calorie count and I am a lot happier mentally. but physically I am a bit broken. I have weak muscles in my legs because I am not able to be as active as I used to be. I became obsessed with the scales, how I looked but now I just want to be myself. Feel myself and to live pain free. I am currently laying in bed at the moment because my legs are sore and hurting.

Im incredibly desperate. I try and think positive as much as possible. I have been to see the GP every single week since last September. No solution to the problem, no tablets have helped and nothing seems to work, more so they cannot find the cause for the pain as I do not have diabetic neuropathy!

 

[Juicyj]

Hello @Frenchfancyxoxo That's moved now

It's really good to hear your managing your blood glucose levels much better now, as this will help if you had started to develop complications. In regards to your current pain levels, I can't offer any advice, we have a diverse membership so hope someone can come along soon to comment and support you.

 

[Bluey1]

Hi Frenchfancy,
Welcome. Diabetes gets very jealous of other medical conditions, but always isn’t responsible for all our ailments. No one here has the skills or the knowledge to be able to diagnose a cure. We all have a lot of experience with medical professionals and I think you really need to find another clinic and different Drs.
If you are concerned that the long acting insulin is the culprit, maybe you can get a loan pump to prove it, the pumps only use short acting insulin. You seem to have many issue and although D has had a hand in them, it may not be the root cause.
I wish you the best and hopefully your problems can be cured or at least managed.

 

[DCUKMod]

Yes please that would be great, this is my first time posting so I wasn't sure how it worked! Current control is great, no higher numbers than 9 over the last 6 months. I really changed my ways after I came out of hospital last August. I take my insulin regularly and glucose levels are good. I am yet to get a recent hba1c but I know it would be at least half of what it was. I have access to a great GP and a great diabetes nurse but they are at a loss as to what the pain is and could be.

I am now not fussed about my weight, I calorie count and I am a lot happier mentally. but physically I am a bit broken. I have weak muscles in my legs because I am not able to be as active as I used to be. I became obsessed with the scales, how I looked but now I just want to be myself. Feel myself and to live pain free. I am currently laying in bed at the moment because my legs are sore and hurting.

Im incredibly desperate. I try and think positive as much as possible. I have been to see the GP every single week since last September. No solution to the problem, no tablets have helped and nothing seems to work, more so they cannot find the cause for the pain as I do not have diabetic neuropathy!

Frenchfancy - You really are going through the wars, one way or another.

Would you feel comfortable to tell us what medicaltion you take, in addition to your regular insulin? Do you take a statin at all?

Have you had a wide range of tests done for this pain, looking at things like rheumatoid arthritis (RA) or fibromyalgia (FMS)? There are some blood tests to help with diagnosing RA (it's another autoimmune condition, so they look for antibodies), although one can have RA without antibodies. Fibromyalgia is more a diagnosis bases on the exclusion of other things.

Obviously, I'm not suggesting you have either of those conditions, but more asking if the investigations have gone any wider than your diabetes.

 

[kitedoc]

Hi @Frenchfancyxoxo, You are sending a clear SOS ! we hear !!! As a T1D myself, but not as professional advice or opinion (which professional opinion I know you really need in the extra competent variety):
There have been two cases reported and others suggested by forums that Novorapid injection (and on the forums other short-acting insulins) can cause severe pain due to the insulin causing a sudden drop in potassium in the blood.
In the report http://www.nbci.nil.nih/gov/pmc/articles/PMC5622161 they measured potassium, magnesium and calcium in the blood just before, and 30 minutes, after the patient took an injection of novorapid under the skin (subcutaneously). The person developed severe muscle aches. Only the potassium level dropped.
If this patient took a potassium-rich supplement (over the counter from chemist), before injection the pain did not happen or was much less. Only 2 reported cases of this , so rare. And both had a degree of neuropathy but in your case although the nerve conduction studies are used to diagnose diabetic neuropathy there is not always agreement, yes or no to neuropathy, even by experts reporting of the nerve conduction studies. (from my reading).
Now could this potassium drop also apply to long-acting insulin? No reports of it but then have you or anyone been measured for it and could the drop happen perhaps later with the long-acting insulin ? A question for your doctors *
With some forms of neuropathy (and again the question of whether the nerve conduction study rules out neuropathy for you) there can be an inflammation of the nerve when previously poorly controlled diabetes is brought back quickly under control.
The nerve trouble seems to flare when the change is sudden compared to when the change is more gradual. It comes under the heading of 'insulin neuritis'. I guess they might need to take a small sample of your skin to work this out (by looking at some of the nerves in your skin under the microscope)). A question for the docs. **
As regards your fevers:
Are your leg pain and the fevers related? : I cannot even begin to guess but when the cause of your fevers is worked out then a connection, if any, is likely to appear.
If the following repeats things you have already been asked or tested for I apologise. I am just trying to think about everything.
It seems unlikely that you would not have had your urine tested for infection. And the 'throw away 'line you mentioned from the doctor deserves a report against him/her. But i assume that each time when you have been admitted to hospital that, after some tests, you were likely put on antibiotics even though a cause for fever was not identified before or after.
Doctors I have noticed are knowledgeable about the area, country they live in as regards usual medical conditions but not so much about other countries, so UK in the temperate zone compared to say, Africa and Asia, where tropical disease usually not seen in UK happens and where doctors there are much more familiar with tropical medicine and how to test for those conditions..
So from my reading-up:
#If you have travelled to other countries it is important to let your doctors know (especially if if they have not thought to ask you). accomodation (cities, countryside), exposure to animals there, food eaten, any illness whilst there or after returning home
#All medications, legal and any illegal , which you have taken or think you might have been exposed to is important for your doctors to know.
# Occupations and pastimes: e.g. exposure to caged birds, to bats, particular insects, to animals, metals, abattoir work, cattle work including calving, same for sheep, goats and the like; fishery work etc.
Sometimes a test result comes back showing that there is a low, medium or high level of inflammation in the body but not what the cause or location of the inflammation is.
Some doctors might report these initial results were not helpful. And then that further tests looking for a cause were 'negative' or not showing a particular cause.
Others might say that the initial tests confirm that there is inflammation but not what or where it is. And that tests to chase after a cause so far have not found the causes they were looking for. They would need to consider what other, perhaps more rare causes, to test for.
From the two different ways of being answered you can see how much or little your impression of hope in finding an answer can depend.
Further there are specialists in infectious disease who also know about tropical disease, but who will not know as much about other inflammatory (non-infective) causes of fever etc, the latter is part of another speciality
These days it is rare to find the all rounder physician, the diagnostician, who has sufficient grasp of all areas of medicine to be able to piece together the cause or causes - the Dr House, without all the quirks and other problems!!
I have confidence that matter will eventually be sorted.
But you need help now.
# Can your GP arrange some form of disability pension or sickness payment to help you whilst you cannot work? And some way to help give your children some care whilst you rest.
#There is a law that patients are to be treated appropriately for their pain. Yes, it is easier when the cause it known but pending that your GP and any specialist involved have a duty to provide you with some form of pain relief to allow some respite, ability to rest and sleep etc. Often the pain can be characterised enough to know what type of medication may be most suitable to try.
Sometimes the symptom, pain, has to be treated before the cause is found. Just as an example, palliative care doctors are quite skilled at this. Whilst you are in no way in need of palliative care itself, the expertise from that area to manage undiagnosed pain is often very useful. So:
1) ? may be tests for potassium level based on the info above *
2) Query for the diabetes and neurology specialists about 'insulin neuritis'.. and if there is anything to do about your diabetes management **
3) can your GP 'chat up' the local Palliative Care Specialist about pain relief for you.?
4) Failing that, the next cab off the rank is GP to 'chat up' the Pain specialists.
Ask about use of a substance called PEA, which is made in Holland, I think. it is reported to be useful for nerve and other pain.
A drug called ketamine is used in pain medicine and palliative care for temporary relief of nerve and other pain.
(and experimentally for depression but that is another story).
5) pain management also involves psychologists and psychiatrists, NOT anything about it all being in your head, but that pain affects us mentally and help in that area can add to the effectiveness of other measures.
I too apologise for the long post ! If I think of other things I shall post them.
Sincere Best Wishes with you in obtaining pain relief, with your situation improving and causes and remedies being found.

 

[wiserkurtious]

This is my first ever post, please help

Hi All,

Here goes for a super long post but I urge you to please read and help me with any tips that you may have if you have experienced the same. I am 27 years old, I was diagnosed with T1 in 2012 at the age of 21. I have 3 children. Since becoming diabetic, I have let it take over my life. Last year I developed an eating disorder through trying to lose weight and for around 1 1/2 years I refused to look after myself and do insulin, I would only inject when I was so tired that I knew my blood sugars would be through the roof. I went to the doctors to seek help. I was admitted to hospital 3 times last year for an infection that no body could find the cause of. Eventually I was told but a Dr that it was probably a urine infection because they aren't detected on blood tests. (RIDICULOUS because I had NO symptoms for a urine infection whatsoever). I cannot fault the NHS, they have been amazing but I am at a loss. My last hospital admission was 29th August last year, temp of 40, heart rate 153 BPM. again, no cause of infection, not sepsis. Anyway, I have been signed off from work since October last year due to intense chronic pain in my legs, I have had multiple blood tests done, MRI, CT scan and X-rays. Cannot find the cause for the pain, I have also had a nerve conduction study done and that came back fine (which I am really grateful for). However, that has lead me back to square one. There is no cause for the pain, its so intense my children have seen me screaming into towels, biting pillows and sob daily for months. I am still signed off of work now. About 10 days ago I made the discovery the long acting insulin I was taking (toujeo) is closely linked to Lantus, which has been known to cause pain in the lower limbs. I instantly switched back to my Levimere. I haven't experienced the extreme pain since last Tuesday, however, it came back yesterday and I am devastated. My body is truly exhausted, mentally I am exhausted trying everything I possibly can, researching all I can, eating the right foods, keeping blood sugars stable. I cannot exercise because the pain has caused my legs to weaken. I read tonic water can help but it hasn't. Has anyone else experienced this with Toujeo insulin? Even Lantus? Its ruining my life, when the pain comes, I want to give up and stop fighting, selfish I know but I see no other way out. I cannot afford to get help privately, I have looked but just for a consultation is £150-£250. My children are suffering, I am suffering. If anyone can please help me, even if they have experienced it and can give me some hope that it will go away. I don't know what else to do anymore and I am extremely desperate. Thank you x

Massive cuddles

 

[Frenchfancyxoxo]

Hi All,

thank you all so much for your replies. Luckily I haven't had the fevers anymore and after the last spout in hospital in August I haven't had those symptoms return. I have read in several places that insulin can reduce your potassium levels which can cause pain in the legs. Toujeo (old long acting insulin) has been known for this so I stopped taking that and I went back to Levimere. So I take Levimere for my long acting insulin as I didn't have any leg problems until what looks like I swapped insulins and for short acting I use Novarapid and I haven't ever had/discovered a problem with this. When you look at my blood tests (if you didn't see me in person) I am a healthy 27 year old, who had poor diabetic control but is now doing so much better. My mum works as a doctors receptionist and she has managed to organise an appointment with one of the best diabetic consultants in the area, that appointment is tomorrow, maybe she will hold some answers for me. Do you all think I should specifically ask for a blood test on my potassium levels? I wonder if, even if they have dropped slightly that can cause this to happen?

 

[Frenchfancyxoxo]

At first my doctor thought that it was due to mental side effects, as I suffer with anxiety but I take medication for this regularly and I don't feel or haven't felt anxious for months. Once she had then discussed this with the other doctors is when she put me forward for a Neuropathy appointment. I have an appointment with same GP who has been dealing with this since last September on Tuesday next week, maybe I need to be a little firmer and start asking for more extensive testing to be done. Maybe another MRI and CT scan? Potassium levels to be checked? She has been great but I am at a loss now and whilst trying to discover what this pain could be, im driving myself slowly insane. Today I feel more sane than usual, this forum has really helped already. I don't feel as alone. My DR doesn't think I have Fibromyalgia, although all symptoms I have do lead to that. however, it also leads to a lot of other things it could be too! I am stuck lol xx

 

[Frenchfancyxoxo]

Last night, was an incredibly bad night. 3 days straight the pain has been with me again and I was ready to give up. I have thought of everything I possibly can that it could be. I eat a well balanced diet 1200-1500 calories a day, I eat plenty of fish, vegetables, meat and fruit! Whilst maintaining a good blood sugar. It dawned on me last night that this could be a number of things rolled into one. Since changing my insulin I no longer have the sensitivity I once had in my legs, although extremely painful, it would hurt to simply touch my legs. ONE good thing has happened. Then I started researching an L5/S1- disc bulge. I had this confirmed by a doctor last year in April, I saw a physio therapist who told me the pain In my legs wouldn't have been caused by this, I since then haven't had another MRI or CT scan of my back. I think the problems in my legs maybe a mixture of things, I am determined to figure out what it is and get back to full health. Last night, I told my other half that if this pain doesn't leave me by this time next year, that I was going to do the unthinkable. Today, I have a tiny amount of hope. After reading on the NHS the symptoms and the pain that a disc bulge can cause, again I have ALL the symptoms and BETTER yet, I KNOW I have a disc bulge. Could it have gotten worse? I couldn't walk up the stairs last night. I feel slightly sad that I am having to make these discoveries myself but I am determined NOT to give up!!! I will beat this and I will get back to my health (you can see it in my profile picture). Time to start getting some serious answers!

 

[Juicyj]

@Frenchfancyxoxo Sorry to hear this, don’t give up hope, you have so much to live for

 

[kitedoc]

Ni @Frenchfancyxoxo, By all means explore every possibility. Pressure of a slipped disc on a nerve is called radiculopathy (and there is nothing ridiculous about it !!
Looking this up, just be aware that if both legs are involved sometimes the bladder becomes involved as well.
Not often but sometimes. You need to know and be alert to it.
An inability to pass urine or difficulty passing it or feeling full and urine leaking out when you are not dehydrated etc is something that is serious +++
mayfieldclinic.com Cauda Equina Syndrome.

 

[Frenchfancyxoxo]

I did read about that, and I will keep a very close eye. Although I am not going to the toilet as much, I don't have difficulty but I put that down to well controlled blood sugars so I don't drink as much as I used to! I will try and keep you guys updated!

 

[kitedoc]

Hi All,

thank you all so much for your replies. Luckily I haven't had the fevers anymore and after the last spout in hospital in August I haven't had those symptoms return. I have read in several places that insulin can reduce your potassium levels which can cause pain in the legs. Toujeo (old long acting insulin) has been known for this so I stopped taking that and I went back to Levimere. So I take Levimere for my long acting insulin as I didn't have any leg problems until what looks like I swapped insulins and for short acting I use Novarapid and I haven't ever had/discovered a problem with this. When you look at my blood tests (if you didn't see me in person) I am a healthy 27 year old, who had poor diabetic control but is now doing so much better. My mum works as a doctors receptionist and she has managed to organise an appointment with one of the best diabetic consultants in the area, that appointment is tomorrow, maybe she will hold some answers for me. Do you all think I should specifically ask for a blood test on my potassium levels? I wonder if, even if they have dropped slightly that can cause this to happen?

Hi @Frenchfancyxoxo, see my post above re potassium levels and about a thing called 'insulin neuritis' and if you can take any CT/MRI scans and reports about your back along etc Best Wishes and Luck !!

 

[Frenchfancyxoxo]

Hello,

The all that had wrote on my post. I had my appointment with the diabetic specialist, she is positive that the pain I have has nothing to do with my Diabetes, which is a good sign, however, she strongly believes it is to do with a disc bulge I have in my back. I felt positive and quite hopeful that after speaking with my work occupational therapist and getting some tips on how to relieve the pain that I would be seeing some light at the end of the tunnel. However, I returned back to my usual GP on Tuesday, she doesn't think it is to do with my back. she doesn't believe that my back is causing the leg pain and she basically told me to just wait for the appointment I get through for my follow up with the neurologist. I mentioned that the OT recommended acupuncture and although she doesn't believe that it is anything to do with my back, she said acupuncture is a good idea and she "backs me up" on that. I felt incredibly sad and deflated leaving there. After reflecting on my appointment I realised that the way my GP said certain things and also hoe defensive she got when I told her it was to do with my back, is because I think she may have missed this all along. My original MRI/CT scan showed a minor disc bulge, however this was back in August last year and I haven't had a scan since. I believe and so does the GP at the other surgery that it is to do with my back, she also lifted my legs and did a small prick test on my lower back. MY GP however, didn't do anything. Basically said to just keep going with the investigation. So I am still in pain everyday, its excrutiating. I have no pain meds that were given to me to cope and I am praying that acupuncture really does help when I go next week!

thanks again for all the love and will keep you guys informed. Dr also told me it wouldn't be my potassium levels as my Kidneys have been well and truly tested lol.

xx

 

[Juicyj]

Sorry to hear your still in pain, I do hope the neurologist can work this out, the positive news is knowing it's got nothing to do with your diabetes, hopefully now there is at least a light at the end of the tunnel for you with this so try to stay positive despite what your GP says.

 

[DCUKMod]

Hello,

The all that had wrote on my post. I had my appointment with the diabetic specialist, she is positive that the pain I have has nothing to do with my Diabetes, which is a good sign, however, she strongly believes it is to do with a disc bulge I have in my back. I felt positive and quite hopeful that after speaking with my work occupational therapist and getting some tips on how to relieve the pain that I would be seeing some light at the end of the tunnel. However, I returned back to my usual GP on Tuesday, she doesn't think it is to do with my back. she doesn't believe that my back is causing the leg pain and she basically told me to just wait for the appointment I get through for my follow up with the neurologist. I mentioned that the OT recommended acupuncture and although she doesn't believe that it is anything to do with my back, she said acupuncture is a good idea and she "backs me up" on that. I felt incredibly sad and deflated leaving there. After reflecting on my appointment I realised that the way my GP said certain things and also hoe defensive she got when I told her it was to do with my back, is because I think she may have missed this all along. My original MRI/CT scan showed a minor disc bulge, however this was back in August last year and I haven't had a scan since. I believe and so does the GP at the other surgery that it is to do with my back, she also lifted my legs and did a small prick test on my lower back. MY GP however, didn't do anything. Basically said to just keep going with the investigation. So I am still in pain everyday, its excrutiating. I have no pain meds that were given to me to cope and I am praying that acupuncture really does help when I go next week!

thanks again for all the love and will keep you guys informed. Dr also told me it wouldn't be my potassium levels as my Kidneys have been well and truly tested lol.

xx

Could you transfer to this other GP you seem to feel more comfortable with?

 

[Frenchfancyxoxo]

Although I would absolutely love to, I just couldn't. The hospital associated with that DR's surgery is nearly a one hour drive for me and I just wouldn't want to risk being so far away yet not being at my normal hospital! I am however going to see if I am able to see a different doctor at the surgery I am currently at. I am probably going to speak to the Dr that actually first referred me for physio. I would like to think that they don't share their opinions, as I think if I expressed that the current DR had my MRI scan all along he may side with her and say that the disc bulge is not causing the pain and that its still in investigation. That is the only thing I face at the moment! I am booked in to get a call in a few weeks as she dropped the dosage of meds and wants to see how I am getting on! I still haven't heard from the Neurologist and I am going to give it until the end of the week, as then it would've been a good few weeks since he received my results!