"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.