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

There is no Spoon said:

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?

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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

@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.

There is no Spoon said:

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

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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.

There is no Spoon said:

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.

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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.

There is no Spoon said:

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

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

There is no Spoon said:

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.

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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.

Melgar said:

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.

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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.

Melgar said:

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.

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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.

There is no Spoon said:

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.

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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 said:

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?

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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!