"the time has come" the walrus said "to talk of many things..."

[There is no Spoon]

Hi all just a little conversation about "many things".
I've been away for a while things were going well my sugar control was not as good as it once was but its a marathon not a sprint and things are almost back to normal again.

However the reason I re-joined these boards I needed a little refresher in many things as my daughter had just been diagnosed with PCOS, reading up on the condition insulin resistance is an strongly associated with the condition, I know a little about how insulin resistance, BUT as any parent out there knows, she wont listen to me.
In addition to my daughters POCS she was diagnosed with Coeliac disease in the same month into every life a little rain must fall, my daughter was diagnosed with Asperger's & Dyslexia many years ago during a prolonged period of illness; I had to take her out of school give up work and home school her for a couple of years. With or despite my help she was accepted to college worked her way to university and Graduated with honours. Obviously I'm very proud.

I mention her condition as I have seen a few posts on here recently about Coeliac disease considering the long term complication we have gone gluten free in the house, ever threw out the toaster. I have discovered that many of the Gluten Free products we have tried seem to give one or both of us an upset stomach any one else having this problem?

Brining the subject back to me and my new complication. Diabetic Neuropathy

I was diagnosed a couple of weeks ago cold hands and feet, to match my cold black heart. I say diagnosed I saw a Doctor who asked me what was wrong "cold hand and feet" what did I think was the cause "Diabetic Neuropathy" ok here's some pills, go away now. (Remember those mugs that used to say "Don't confuse your google search for my medical degree" they seem obsolete now.)

Pills = Amitriptyline Hydrochloride: there not very nice.
There a pain killer for nerve damage as well as being an antidepressant, just comes as part of the deal, I'm not depressed although I haven't had a good nights sleep in months.
Side affects: you might feel drowsiness and you will feel hungover in the mornings.

My experience restless nights hungover and extremely lethargic during the day with no noticeable change pain management.

 

[There is no Spoon]

My experience restless nights hungover and extremely lethargic during the day with no noticeable change pain management.

It seems I was too long winded even for my own post. The final part of this post was missing.​

My experience restless nights hungover and extremely lethargic during the day with no noticeable change pain management. So I'm off the meds now I'd rather be in pain.

I'll get in touch with the GP after I have done some more work on my Google Search/Medical degree.

There have been a few post lately about Neuropathy I haven't wanted to join in as I didn't have any, useful, experience to share but what's the point in being here it you don't take part. To anyone experiencing this I feel your pain, quite literally.

Dose anyone have any more positive experiences to share?
Any med or exercise routines which have been helpful for you?

Well done you made it to the bottom of this post, it was touch and go for a second, but we got there together; give you self a high 5 and a congratulatory pat on the back you deserve it.

 

[Antje77]

Hi @There is no Spoon , I'm sorry to hear about the new health struggles in your family.

No advice from me either since I have no experience with any of your and your daughters issues, I just wanted to say how nice it is to see you around again!

My experience restless nights hungover and extremely lethargic during the day with no noticeable change pain management. So I'm off the meds now I'd rather be in pain.

Makes sense to me, no use taking pills with stupid side effects when they don't really work either.

 

[Zhnyaka]

What happened to the good old way of treating polyneuropathy with alphalipoic acid? Berlithion is the only thing that helps me, but I've never felt pain, just cold hands and feet that sometimes go numb as if you were sitting on them.

 

[grantg]

Pills = Amitriptyline Hydrochloride: there not very nice.
There a pain killer for nerve damage as well as being an antidepressant, just comes as part of the deal, I'm not depressed although I haven't had a good nights sleep in months.
Side affects: you might feel drowsiness and you will feel hungover in the mornings.

My experience restless nights hungover and extremely lethargic during the day with no noticeable change pain management.

Dose anyone have any more positive experiences to share?
Any med or exercise routines which have been helpful for you?

a little useless info that drug can also be prescibed to help with epilepsy. have had that drug before for chronic pain (spondylothesis), didnt make a dent. are you taking co-codomal with it they can go upto 2x 30/500 pills 4x a day careful of constipation if you do ... it can take a wee while for pain meds to build up in system. Theres a few over drugs which are simular which was given ... nortriptyline that had little effect either, moved onto gabapentin in various dosages.. til maxed out, got given pregablin which i'm still taking 300mg at night 150mg daytime. walking zombie effect... when tried 300mg both morning and night. still pretty restless sleep.

i took diclofenac sodium for several months alongside the co-codomal and pregablin... that was not a wise idea due to rectal bleeding ... there is a brightside about that eventually had enough in january and went to hospistal got immediately removed off that drug and diagnosed with diabetes.

not too sure if pain patches maybe work at all for you? could ask dr to try lidocaine patches (12 hours no 12 off) maybe could help a little with any pain nearer the surface wont help at all with anything further in... if its pain nearer the surface theres another type of stronger pain patch buprenorphine wouldnt recremmend ton of bad side effects....its pretty much morphine on a pain relief patch same as taking 12-15mg of the stuff ...

lidocaine patches are fairly common to be prescibed to treat neuropathy pain.

sending hugs & best wishes

 

[KennyA]

Brining the subject back to me and my new complication. Diabetic Neuropathy

Nothing ij terms of pain relief etc worked for me. I had burning feet, pins and needles and stabbing pains for around six or seven years. I had naproxen for other reasons which I find is very good usually for pain/inflammation: it had zero impact on the neuropathy.

Bilous and Donnelly (Handbook of Diabetes) say "Positive symptoms of neuropathy are distressing, often at night, disabling, and difficult to treat....

[I've tried to paste in here a table of possible pain relieving drugs, but at the moment the forum isn't having it]

...Various topical and systemic therapies have been tried for painful diabetic peripheral neuropathy, but few have been subjected to well‐designed randomised controlled trials (RCTs). The U.S Food and Drug Administration (FDA) have received regulatory approval for the treatment of neuropathic pain in the U.S, Europe and Canada. Combination therapy, including combinations with opioids, may provide effective treatment for diabetic neuropathic pain at lower doses.... acupuncture may be helpful and the antioxidant, alpha‐lipoic acid, is used in some countries."

What solved it for me was reducing BG levels to normal. The pain cleared up within a few weeks, although I have been left with a very mild tingle.

Edit - table now pasted below.

 

[Resurgam]

@There is no Spoon Have you been tested for low thyroid function?
I was eventually diagnosed with a failed thyroid many years ago but the memory still lingers of the sensation of having my hands and feet in a warm bath after a couple of days taking Thyroxine.
Thyroid problems are notoriously hard to diagnose as it might flag and then recover several times before finally conking out, so it was about the 6th time of testing that I got it confirmed, with TSH around 5 thousand times the normal level.

 

[Melgar]

@There is no Spoon , I can't comment on your neuropathy as I do not have it. I can comment on a couple of your daughter's conditions. I have coeliac, so does my daughter. Have you been tested for it? It can run silently, without any symptoms, but still just as destructive. You or her mother maybe genetically susceptible. We have a gluten free house. I smiled at your toaster comment. We have two toasters, the regular toaster is stored away and only brought out when we have guests. My daughter is at college in LA, she lives with a couple of close friends. Their apartment is now gluten free , as x contamination was making my daughter sick. They chose to only eat gluten outside of their apartment. True friends.

Coeliac affects more than the gut. It causes my skin to react to gluten with significant mast cell activation and dermatitis herpetiformis mainly on my scalp. It's affecting the enamel on my daughter's teeth and can cause significant brain fogging, depression and ADHD symptoms.

I was diagnosed with combined ADHD and Dyspraxia. I also have quite a few ASD traits, I will not bore you with them, although I have not bothered myself to get an official diagnosed with ASD. I'm very glad to hear your daughter was able to get an ASD diagnosis, that can be a challenge especially if you are at the mild end, and I hate to say this, but female. As a young person a diagnosis can help you understand yourself and your inevitable life challenges. I have learnt to mask both my ADHD and my ASD symptoms. To meet me you probably wouldn't know. Although very wearing, because I can only be myself at home. I'm sure your daughter is masking too. I did very well academically, so I'm very happy to hear your daughter did too.

 

[KennyA]

 

[There is no Spoon]

I'm sorry to hear about the new health struggles in your family.

If you live long enough your probably going to run in to some health issue or other. If you don't live long enough you probably had one with out knowing.

 

[There is no Spoon]

What happened to the good old way of treating polyneuropathy with alphalipoic acid? Berlithion is the only thing that helps me, but I've never felt pain, just cold hands and feet that sometimes go numb as if you were sitting on them.

My feet usually don't feel that cold to the touch, however I am touching them with my own hands. On any given day my fingers are 10 Degrees Centigrade colder than the palms of my hands. On the up side I don't need ice cubes to put something cold down the back of my daughters neck.

My understanding is my brain, which has never liked me, is interpreting the lack of nerve input as cold; hot water bottles, heated slippers and painkillers don't work. Although how that translates to the hand issue I have no idea.

@Zhnyaka glad to hear you aren't in any pain.

 

[There is no Spoon]

pins and needles and stabbing pains

Ha, I forgot about that. Feels like electric shock or being stabbed with a dart attached to a pneumatic drill.

Don't get me wrong there is some pain it doesn't last that long an over all it is mild the hands don't hurt and the feet feel like standing on a cold bathroom floor, that one if fairly constant though. But as you said @KennyA night time is an issue its worse when you lie down, mostly that's how I go to sleep.

My issue is getting back to sleep, after the obligatory wake up in the night and go for a pee, with sub-Zero feet. Even if they don't feel cold to the touch.

I have had cold hands and feet in the winter for years with out putting 2 & 2 together. I have a feeling this is going to become my new specialist subject.
Thanks for the pain table.

 

[There is no Spoon]

Although very wearing, because I can only be myself at home.

Although it has nothing to do with my name @Malgar I am a firm believer in Spoon theory, I don't waste my spoons on the outside world I conserve most of my energy for my daughter.

I haven't been tested none of my health professionals who are payed a wage to think of these things thought to mention it.
I'll bring it up next time hell freezes over and I'm able to get an appointment.

 

[There is no Spoon]

Have you been tested for low thyroid function

Hi @Resurgam I quick google search, hope that counts towards my medical degree, shows I have some of the symptoms but not many; just enough to get a hypochondriac excited.

I don't think this is an issue for me but I will discus it with my GP, as you said its hard to spot especially if your not looking for it.

 

[debs248]

Hi all just a little conversation about "many things".

Hello from a fellow spoonie (ME/CFS and almost certainly ND as well). Only just seen this thread as I've been on holiday, but your situation is in parts very similar to mine, although I've only been trying to manage diabetes for a few months.

However the reason I re-joined these boards I needed a little refresher in many things as my daughter had just been diagnosed with PCOS, reading up on the condition insulin resistance is an strongly associated with the condition, I know a little about how insulin resistance, BUT as any parent out there knows, she wont listen to me.

I feel your pain. My daughter's 19 and has put on a lot of weight in her first year at uni. I have PCOS and my mum has many of the symptoms but no diagnosis, so I've been trying to get my daughter to see her GP and sort her diet out a bit, but to no avail. She's also recently been diagnosed with ADHD and is in a queue for an autism assessment.

With or despite my help she was accepted to college worked her way to university and Graduated with honours. Obviously I'm very proud.

And so you should be, both of her and your own efforts!

Pills = Amitriptyline Hydrochloride: there not very nice.


There a pain killer for nerve damage as well as being an antidepressant, just comes as part of the deal, I'm not depressed although I haven't had a good nights sleep in months.

I was offered amitriptyline for my ME, it's supposed to help you get into the deeper, refreshing stages of sleep. I turned it down as my daughter was still a toddler and I didn't want to be a zombie while looking after her.

Although it has nothing to do with my name @Malgar I am a firm believer in Spoon theory, I don't waste my spoons on the outside world I conserve most of my energy for my daughter.

I like that attitude. I know how hard it is when the rest of the world expects you to prioritise unimportant stuff. Family is most important.

I haven't been tested none of my health professionals who are payed a wage to think of these things thought to mention it.
I'll bring it up next time hell freezes over and I'm able to get an appointment.

Good luck. Enquiring about an autism assessment is now on my to-do list but I'll have to live past 100 to get down that far. No health professional so far has been interested enough to notice me, even though I don't *think* I'm masking. It's family members and a charity worker who suggested it.

I don't think this is an issue for me but I will discus it with my GP, as you said its hard to spot especially if your not looking for it.

Subclinical thyroid issues seem to affect a lot of women. The NHS don't get interested until you're really deficient in my experience. I also have just enough symptoms to excite a hypochondriac but two GPs have dismissed them. At least the new one agreed to retest bloods in a year's time in case it gets worse.

Sorry if I've rambled a bit, I ate a scotch egg while writing this post and it's made me sleepy

Best of luck to you and your daughter!

 

[There is no Spoon]

Hello from a fellow spoonie

Hi @debs248 Nice to meet you thanks for your response.
Sorry the name is a line form a movie. I've always liked it, to me it epitomise hope.

 

[AloeSvea]

Hi all just a little conversation about "many things".
I've been away for a while things were going well my sugar control was not as good as it once was but its a marathon not a sprint and things are almost back to normal again.

However the reason I re-joined these boards I needed a little refresher in many things as my daughter had just been diagnosed with PCOS, reading up on the condition insulin resistance is an strongly associated with the condition, I know a little about how insulin resistance, BUT as any parent out there knows, she wont listen to me.
In addition to my daughters POCS she was diagnosed with Coeliac disease in the same month into every life a little rain must fall, my daughter was diagnosed with Asperger's & Dyslexia many years ago during a prolonged period of illness; I had to take her out of school give up work and home school her for a couple of years. With or despite my help she was accepted to college worked her way to university and Graduated with honours. Obviously I'm very proud.

I mention her condition as I have seen a few posts on here recently about Coeliac disease considering the long term complication we have gone gluten free in the house, ever threw out the toaster. I have discovered that many of the Gluten Free products we have tried seem to give one or both of us an upset stomach any one else having this problem?

Hi @There is no Spoon. Dark poem! But enjoyed being led to read it.

I just split your post in half, to deal with each theme separately. And really interesting themes.

First of all, from my own experience, don't assume your adult kids won't listen to you! Especially re all-consuming dietary disease (s?) that has/ve an epigenetic component. (For readers - epigentics is the interplay between one's genetic makeup and the environment that directly affects your biology - perfect description for type two diabetes, and insulin resistence based diseases like Polycystic Ovary Syndrome (PCOS).)

I explain the genetic component as being a body type - in particular the tendency to store fat on the belly area/develop 'truncal obesity'. For me in my own offspring it's having a lean muscular body type on one side, and a more stocky muscular body type on the other. Both families/sides for my own adult children, have type two diabetes in them for the first time (a mother - me, and a paternal uncle), which of course is common in these toxic-food and drink environment times.

Quite early on I wrote prevention of insulin resistance and T2D worksheets for them, using my teaching and writing skills for their benefit, I hoped. My daughter really paid attention, and continues to do so 11 years later. Both of my adult children accept me using my BG meter to check their fasting blood glucose reading from time to time. I send them low carb recipe info fairly regularly just in case they want or need to fire up the food and drink environment that way, as in less sugar and carbs in their diet. I give them concrete numbers to keep an eye on, from blood and lipid tests.

Neither of them have been able to get C-peptide readings (ie is their body producing too much insulin to deal with too much glucose - the predecessor to insulin resistance (IR)) as part of their socialised medicine country health checks, something that I believe to be a grave error on the parts of modern testing and prevention. I suggest to both of them that they pay for this crucial IR marker and potential red flag. Neither of them do that, but my daughter pays attention to her HBA1c, which is testing higher end of normal. And she responds to that by cutting down more sugar and carbs. Which to my mind is the correct response to this.

Why should insulin production be a standard state subsidised test? Because a person is three times more likely to develop an IR based disease if one's parent has T2D as an IR based disease. Get it early, nip it in the bud - most reasonable thing to do, imho.

Your daughter, with PCOS has shown her susceptibility to IR and IR based disease, which the break down of fertility to subfertility is the first go-to by the body, is my understanding. It's a 'fix it quick' sign, not a sad fatalistic sign in my book! (Tell your daughter I said so if you like). The good news is she can fix it and prevent its development to T2D. Mine took 3 decades without me or any of my medical professionals understanding the diet-IR disease link. Your daughter, my daughter, have us! And the internet, and fantastic scientists, engineers, medical professionals to draw their attention to this. They are unlucky with the food and drink environment being what it is. But they are lucky to have this fantastic information at their disposal.

There is a male subfertility equivalent of course, with IR. And bound up with a blood flow issue! This is not my area of expertise, but I am aware of it. Have made my son aware of it, but we have a natural mother-son prohibition of discussing such issues. Any fathers with IR based disease, with adult sons - I leave this to you to discuss and share!

 

[There is no Spoon]

Hi @There is no Spoon. Dark poem! But enjoyed being led to read it.
First of all, from my own experience, don't assume your adult kids won't listen to you!

Hi @AloeSvea "BUT as any parent out there knows, she wont listen to me. "

That is a piece of intention nonsense, a predominant theme of the poem.

My daughter has Asperger's a helpful side effect for many who suffer from this is a veracious need to know things, kids with Asperger's are often referred to as little professors, when her interest is peaked she will devour the interned for information to educating herself.

It is irrelevant that I may know a little about the subject, I'm just dad.

You are right about POCS, IR and hormonal imbalances leading to further complications such as T2 she is on the right path for that now. But it had to be her choice to do so.

She would never listen to me when I try to help her changing her habits but now that a Nurse has said so.
Kids they never listen.

 

[Melgar]

Not wishing to derail your thread @There is no Spoon , I don't believe one suffers from ASD , you are not neurotypical you are neurodivergent. Others may of course think differently. I think it's more about feeling alienated and feeling different because your mind works differently than neurotypicals. The suffering comes about because of being constantly misunderstood or not understanding, and /or , being extremely sensitive to the world around you and this can create a great deal of trauma.

 

[There is no Spoon]

I don't believe one suffers from ASD

I live with it. Suffers is the right word. In ever sense of the word.

No derailment here, "to talk of many things... of shoes, and ships, and celling wax, and cabbages and kings …."

@Melgar you have an informed and compassionate understanding of ASD and how it impacts of people social and emotional development. It's not the same for everyone as you know there is a wide spectrum.

The best example I ever saw on TV was The Bridge Saga Norén the detective is high functioning/masking not some super genius or basket case stuck in a basement. Just someone who is a little bit off.