Totally unfair

[kazwbb]

I have been a diagnosed Type 2 for a year. I am really struggling at the moment and feel so very very down.

Despite making many changes to my lifestyle and diet I have now developed neuropathy.

My day to day bloods are well within guidelines (with the odd spike) Testing has really helped me find whats good for me and not. My long term bloods are excellent and my nurse is really pleased with them.

So why has this hit me and this early? My hands and feet burn/tingle or go numb. I have noticed random bouts of severe diarrhoea. Get indigestion even if I haven't eaten anything, especially at night time. I also get dizzy a lot and can feel faint even sitting down

I am taking great care with my skin as I am terrified of amputation but I also have chronic dermatitis on my hands which combined with diabetes scares me silly.

I also have osteoarthritis and have developed a curvature of the spine. To cap it all I have a recurring kidney complaint (seeing consultant in August)

Yes I am depressed and yes I am on medication for it. I am 43 years old and until a couple of years ago I was super active with a great social life. Now I hardly do anything. I feel older than my parents.

As the title says....so unfair....

Have any of you had such a rapid onset of complications despite being careful?

 

[kareng236]

Hello - I don't know that I can say much to help, but thought I'd send a reply as you sound really upset. I think we have all gone through dark patches and will continue to do so at different times, but try to keep hold of the fact that despite all the health concerns you are battling with at the moment, your blood sugar levels seem to be well under control. That doesn't just happen - you have obviously worked hard to gain these good results and you hear and read that good blood sugar control helps avoid complications. I don't want to give you false hope, but there again it might give you something to think about..........................for days on end a few months ago I would have terribly itchy feet - sometimes they felt really hot and I just wanted to claw at them. This disappeared for a while.....but recently the same complaint, but my hands were just the same - they were bright red and very itchy. I know that you have felt a tingling and burning sensation - but it turns out I am allergic to asparagus!!! Could the sensations you are experiencing, be something similar? It is maybe a silly suggestion - but worth considering. It does seem odd that you are developing such pronounced neuropathy considering you have good control. I am Type 2 also - but not all that experienced as I was only diagnosed in December 2010 - but I thought I should mention the possibility of an allergy - especially as you have noticed bouts of diarrhoea.

I hope that things get sorted out for you. Hopefully there will be some more people along to give you some advice and suggestions.

Look after yourself.
Karen

 

[donnellysdogs]

Have you actually been diagnosed with diabetic neuropathy?

The things that you have listed are not necessarily neuropathy...and personally, I would ask the GP which ones of these problems can be diabetic neuropathy and ask him to look more closely at the problems you are experiencing with the feelings of faintness, indigestions, loose bowels etc......

If you have a confirmed diagnosis of neuropathy, then have you asked your GP whether all the problems you are having are neuropathy?

Also, please don't feel that you are the only one that feels down after the diagnosis of diabetes and struggling with it etc.....I think from having read a lot of postings here, and from my own personal experience ...you are not the only one.....and as I have said a number of times.....our bodies and minds have to have time to accept the changes that we make to it with a diagnosis of diabetes....our bodies have probably had quite some time peiod of adapting to living with undiagnosed diabetes.....and it is a huge change for us to take....and not an easy one at all.
Taking tablets for depression can also have side effects on bodies.....and for me the best tablet I have personally been given is duloxitine.....which helps with depression and is nowadays being prescribed for diabetic neuropathy and fibromyalgia. Not all depression tablets suit patients.....and especially pain as well, there is a whole list of drugs that are out there to help.....so if you find you are still being down after taking medication for depression after giving them a chance to work..you may need to go back to the prescriber of the drugs and ask if there are any other ones you could try.

Also, depression is not all about taking tablets....I have been on a fantastic stress management course through my gp which taught me so much about stress, anxiety and depression I wish I had it years ago. I also got a fantastic counsellor who has really, really helped me fantastically. Even a diagnosis of diabetes can be helped by these persons..

On a positive note, you have found the best place to come for support and encouragement. We are all living with diabetes in one way or another. Either ourselves or family or friends....

Whilst contending with depression, one of the best things I was told to do was to list down things I enjoy and make an effort to do one of them a day...and try to build up....it is vry, very hard to do-depending on how 'down' you are feeling...but it is nice to go to bed and think...yes, I did that and I enjoyed it.....

Depression tablets can take 6 weeks to kick in properly, and if you have been on them longer than this then it may be that you need to go back to HCP and ask for different ones, and perhaps your GP may suggest alternative therapies too---don't think...what good can talking od, or what will listening to people for 2 hours talking about depressions, stress and anxiety do.....they can be good additional helps...

Please let us know how you are doing......

 

[Gappy]

I am just coming off depressants (citalopram) as I had a motorbike accident, my body got smashed up but it was the legal system for compensation that got me down. Anyway, I got through some dark times coz I have great friends and I turned my anger etc toward the legal system etc that were "out to get me". I'm always better when I have something to fight! I know life isn't fair but I fight back and try to prove people wrong, so don't let this get you down-you prove you're a better person by beating all of this, the social life you described as having means you have friends so even if it's only for half an hour get out and see them! My aim was to recapture as much of my previous life as I could, it takes time and effort butit's well worth it.

 

[WhitbyJet]

kazwbb, all of the above.
It is possible that your neuropathy symptoms are not diabetes related at all, have you had a full range of blood tests? It could be due to a side effect of medicines you are taking or a vitamin/mineral deficiency, it could be a food allergy, anaeemia, etc
Bouts of diarrhoea/tummy upsets and indigestion can have many causes, in my case it was candida.
What is your Hb1ac?
Please dont despair, dont worry ahead of things until you have the facts. Easier said than done when you are sitting there feeling really ill.

Fingers crossed for you, hope you feel better again very soon.

 

[Patch]

I have been a diagnosed Type 2 for a year.

That's not to say that you've had Type 2 for a year. You may have had it for years leading up to this, and, unfortunately, some damage may have already been done before you got it under control...

 

[bowell]

Have any of you had such a rapid onset of complications despite being careful?

Boo!!! Over here :wink:

Neuropathy you can also have this from your spine ? I do ,, You say you have spinal problems

My hands and feet burn/tingle or go numb.

This can also come from your spine in my case both legs and right arm all effected by spine


You need a plan of attack with GP to sort some of this out

1) Need to see a Neurologist will tell you if its spinal or diabetic Neuropathy with nerve path study
2) Orthopedic consultant have a look at your spine
3) Pain Consultant to give you some help with the Pain there loads of drugs to try 8)
just getting rid of the pain can pull you out of the depression
4) keep your BG under control will help the Neuropathy if its Diabetic
5)kidneys need to see the urologist

I had a Fall that mucked up my life a tad :? My diabetes has given me a stroke and some Neuropathy however 95% of my Neuropathic pain comes from my back and neck
however its the same drugs to treat both for pain

kidney complaint Snap !! mine was due to loss of feeling in that area and urine backing up into kidneys ,The fix was to self catheterize,, easer than you would believe

If you can just get a few things looked at you will feel something is being done
and your making some progress

Bob

 

[neilalastair]

it is desperatly unfair. i was dx in feb and since then my body seems to have fallen apart. the good news was that without the uti that led to a diabetes diagnosis i wouldnt have found out i had a raised calcium level and then i wouldnt have found out that i had hypereparathyriodism and vit d deficiency. so atbleast i am interesting to my consultant who has done many tests on me in the hope of finding out all my troubles. i too got neoropathy about 4 weeks after diagnosis. my hands and feet had pins and needles my feet burn like sunburn pain every day mostly worse on a night. i have this circle of pain in the small of my back. my legs muscles have definitly lost mass and when i sit down it feels like i am sitting on bone, no fat in my backside at all. i lost about 4 stone over about 6 months and my diabetic numbers are good and the gp is very pleased. my endo said that rapid good control can lead to nerve problems which eventually clear up. the good news is that my hands and nerves running round my elbow which was really hurting/ pinching has cleared up. it used to feel like i was walking on cobbles all the time with my feet but that has gone now. so i am left with the burning sensations still which i hope will dissapait and wont be here this time next year. i have given up on pain meds. i dont tollerate them very well, the tramadol gave me wierd tinitus. the amytriptyline made me too drowsy.

currently i am on this electrical device like a tens machine. i cant work out just yet if it is doing any good but am persevering as it doesnt make me feel any worse. i am getting a referal to a pain clinic and am tempted to look into accupunture. depression features fairly regularly but if i wasnt depressed considering how i feel i think that would suprise me more. i still manage to work, mostly from home, which is fortunate.

so i cannot offer much in the way of advice. on my good days i reason that at least i am not under some death sentance of an illness that i know others have to deal with. i can work, enjoy my family and look forward to many other things, of course my bad days has me nashing my teeth, in tears with the pain and hoping that my family are not noticing that it is a really bad day.

I wish you well and hope things turn (a good) corner for you soon.

 

[kazwbb]

Wow thank you so much for your replies. I definately feel less alone.

It has been confirmed as diabetic neuropathy but I take on board that I could have been diabetic for longer than I have been diagnosed.

The depression has been an ever present bogeyman in my life since I had a severe heatstroke about 9 years ago. It apparently caused a chemical imbalance. I worked with depression and had it well managed for years but now it seems out of control. It definately isn't as bad as it has been in the past though.

I actually damaged my back when I was 19 and of course over the years it has got gradually worse. I have also shrunk by 2.5", probably due to the curvature.

I now have an appointment with a urology and a muscloskeletal consultant (sp) next month so that at least is some good news.

Oh and Gappy, I used to love my motorbike but because of my back and the dizzyness I had to give it up. Now I am without transport as I never learned to drive a car, just bikes. This makes it difficult to get out and about.

I am honestly not a misery guts usually so thank you all for your suggestions and advice. My nurse recommended this website and I am so grateful to her for that

Karen x

 

[neilalastair]

an article that i found interesting was this
http://www.medscape.com/viewarticle/510707_3
it is better to google the term diabetic amyotrophy frank
wierd i know but going straight to the url makes to need to sign up and register.
it suggests that there are things that can be done in certain circumstances and possible remission of symptoms depending of the specific type. it is a bigger subject and when i asked my endo about it he basically said he would need to refer me to a neuro person to that end i have had an mri in preparatiob for that.
i suspect that by the time i have gone through the nhs it will have either resolved by itself or i will have resigned myself to the lot that i now have. i am visiting a pain clinic in the next couple of weeks which will be interesting.
feel free to pm on im or post again. best wishes and i hope today and tomorrow are better days.

 

[kazwbb]

Thanks for that Neil. Very interesting if slightly scary stuff!

I have to admit I had no idea of the possible issues associated with diabetes when I was diagnosed. I think the combination of all my issues has changed my life so quickly that it is no wonder my head is spinning.

I am feeling a lot more positive though and am still determined to follow the "rules" as the last thing I want is to make anything worse. Just reading these forums makes me realise that things could be a hell of a lot worse and yet all you lovely people are so helpful and friendly.

Thank you

 

[kazwbb]

I have been to see the urologist now so that is in process. The consultant seemed quite optiistic so that's one less worry

I also saw the muscloskeletal consultant, just waiting to see what the latest rounds of x rays show. Interesting thread viewtopic.php?f=34&t=17729 here. Seeing as I have the neurolurgy (saying it like that makes it less scary lol) I am kind of curious to see if my worsening back pain could be related to that too. I have been prescribed Gabapentin to deal with the pain in my hands/feet so it will be interesting to see if it helps my back too.

I have been trying to find support groups etc but there is nothing anywhere nearby (I live fairly ruraly ho hum) I wanted to be able to tell my doc etc how I feel but never seemed to pluck up the courage to do it as their time always seems so precious, so I kept a diary for a week about all my issues and then typed it up and handed it to him. He was suprised but it seemed to go down well. It certainly stopped me flapping and missing out the things I wanted to say.

This week I also went on a shopping trip, something I haven't been able to do in ages due to pain. I usually just do what needs to be done and then straight home to try and limit ouch time. I used the shop mobility scheme and had an electric chair and had a whale of a time. Met with friends, shopped til we dropped, watched a film, had lunch and apart from the "fizzy" hands and feet I felt good. Even my appalling steering in the chair was fun (I didn't kill anyone or knock anything over......came close tho lol)

I was seriously tempted to dump the diet and pig out on chips and pizza as I felt that I was doing everything right but not getting anywhere so why bother, but now I know sh** happens, there are worse things in life and if I carry on as I am with self care then at least I can slow/lessen what's going on.

So the sun is shining, I have my sense of humour back and long may it stay

 

[neilalastair]

Hi, I have just started on Gapapentin too.

So far no side affects, but i cannot say that I am cured, possibly it has dumbed it down a bit.
Let me know how you get on with the drugs.

I am also taking a DPN cocktail for what it is worth. I'll let you know how that is getting on too.

I am undecided about going for a blue badge as the pain is that bad, but I suspect I will fail their test anyway.

 

[yucww210]

kazwbb, all of the above.
It is possible that your neuropathy symptoms are not diabetes related at all, have you had a full range of blood tests? It could be due to a side effect of medicines you are taking or a vitamin/mineral deficiency, it could be a food allergy, anaeemia, etc
Bouts of diarrhoea/tummy upsets and indigestion can have many causes, in my case it was candida.
What is your Hb1ac?
Please dont despair, dont worry ahead of things until you have the facts. Easier said than done when you are sitting there feeling really ill.

Fingers crossed for you, hope you feel better again very soon.

That's what i think too

.

 

[kazwbb]

Hi again

Neil, I feel the same about the gabapentin. It does seem as there is a little less pain. There doesn't seem to be an improvement on the numbness though. Mind you I don't know if it is supposed to do that. I also still get the horrible feeling that insects are crawling on me yukkk. Also doesn't seem to help my back. Hey ho.

I am not sure what my Hb1ac is. My DN always says it's good. I am getting my latest results next week so will make a point to ask.

The tummy upsets etc are odd. A while back I went through the hoop with tests including cameras, xrays, MRI, even biopsies but nothing was found. Probably back to the old IBS, it's just the heartburn that is new. I have never had that before.

One of the things I find most annoying is fatigue. I feel so wiped out at times. I think I have turned into a cat lol.

 

[neilalastair]

Yes, you should get your Hba1c otherwise you could be 6.9 which isnt as good as 5.6 and only a minor tweak in diet / exercise might get you there.

The Gabapentin does seem to help with my back pain and that has certainly lessoned. My bum still feels like I'm sitting on bone or even tiny bits of glass sometimes. I am trying to do squats to strengthen the muscle and to avoid that saggy look old men seem to acquire.

I also take a cocktail of supplements like Evening Primrose Oil/ cod liver oil, B and C vitamins and Alpha Lipoic Acid. Allegedly they help or it could be a giant placebo, but I'll take it if it works.

Last couple of days have been the best so far regarding the pain etc. but this morning I feel like I am back to square one almost.

I suspect my human body wants to do the right thing and get better, but it just cant do it fast enough for my liking.

Hang in there and let me know how you get on.

 

[kazwbb]

I take vitamins and supplements too. Nothing to lose right? The worst pain I get is as if someone is poking a sharp knife into me. Mostly my fingers and toes but lower arms and legs get it too. The burning pain (worst at night when I am trying to sleep) is more constant and I get kind of used to it if you know what I mean.

I hope you get control of it soon too.

 

[kazwbb]

I just came back from seeing the DN and my Hba1c is 7.1. Apparently it was 7.3 6 months ago and before that it was 10.2.

So it is heading in the right direction as I understand it My cholesterol and BP were good too.

 

[neilalastair]

That is good progress, though I suspect that now you actually know the numbers and your potential then more improvements can be made. Do you know your bmi?

 

[kazwbb]

Good to know My BMI is 23