Appointment with diabetic nurse / pain management clinic / hip & knee consultant

[graj0]

Will have to see how it goes on our holiday....more or less packed now and ready to go tomorrow...dropping cases off at airport tomorrow and flying on Tuesday morning...fingers crossed that all is well while we are away....

Have a great holiday, let us know how the butterflies and birds are. Are you a book reader or Kindle fan?

 

[Molly56]

Have a great holiday, let us know how the butterflies and birds are. Are you a book reader or Kindle fan?

@graj0 ...thank you...will definitely let you know about the butterflies etc....and yes I do read when I am on holiday......prefer proper books as have never got on with the idea of Kindle...is not quite the same as reading a proper paperback book - I think it is The White Princess by Philippa Gregory that I have this time ...Philippa Gregory and Barbara Erskine tend to be the ones I read...
...if I finish it i have a few options on my ipad that I can read...

@graj0 .....have also got an audiobook with me.....Nelson Mandela's autobiography ..."Long Road to Freedom"....has been a book that I have been meaning to read for some time but recently got it on CD....

 

[Molly56]

Just noticed it is three months since I started this thread.....seems that some progress has been made but still a way to go...
Am probably due for a return visit to the diabetic nurse ....will probably be a letter when we return from our holiday...hope that the holiday will not undo some of the progress made but can be difficult ....seemed to be easier to steer along the right tracks when at home and in a routine but by its nature the holiday is a break from the norm and more difficult to keep on track....am trying not to get too stressed about it though and will just have to review when we get home.....

 

[Molly56]

Just noticed it is three months since I started this thread.....seems that some progress has been made but still a way to go...
Am probably due for a return visit to the diabetic nurse ....will probably be a letter when we return from our holiday...hope that the holiday will not undo some of the progress made but can be difficult ....seemed to be easier to steer along the right tracks when at home and in a routine but by its nature the holiday is a break from the norm and more difficult to keep on track....am trying not to get too stressed about it though and will just have to review when we get home.....

Thoughts are just turning to forthcoming appointments when we return........an initial appointment in a couple of weeks with the pain management clinic....a follow up appointment with the diabetic nurse from last appt three months ago....and appointment with knee consultant in mid November...has also been referred about hip pain but waiting to see if same consultant will deal with this as knee...

Am not sure quite what the pain management clinic is aimed at.....am assuming this is about all types of pain and methods of dealing with it...

Am guessing it would be useful to go prepared to some extent and have suggested we give some thought to this before we go to get most out of appointment...perhaps making a list of the different pains such as neuropathic / joint pain etc that he currently suffers from...

Does anyone have any experience of going to this type of clinic and the questions they will be asking at an initial appointment?

 

[connie104]

I went to the pain clinic for a year before my hip replacement op . As I have had 2 strokes and diabetes the consultant thought I was high risk for surgery and so sent me to the pain clinic
After two doctors examined my leg they diagnosed two different pains one from damaged hip and the other pain from neuropathy. Over the coming months I was prescribed a cocktail of opoid pain killers which mostly sent me to sleep completely killed my appetite and turning me into a complete zombie! I lost so much weight and was not overweight to start with that I looked terrible . Once they signed me off and I went back to see consultant he decided the only answer was to operate. I feel this was a year wasted of my life but now I have had hip done I notice the neuropathic pain much more so you just can't win !

 

[Molly56]

I went to the pain clinic for a year before my hip replacement op . As I have had 2 strokes and diabetes the consultant thought I was high risk for surgery and so sent me to the pain clinic
After two doctors examined my leg they diagnosed two different pains one from damaged hip and the other pain from neuropathy. Over the coming months I was prescribed a cocktail of opoid pain killers which mostly sent me to sleep completely killed my appetite and turning me into a complete zombie! I lost so much weight and was not overweight to start with that I looked terrible . Once they signed me off and I went back to see consultant he decided the only answer was to operate. I feel this was a year wasted of my life but now I have had hip done I notice the neuropathic pain much more so you just can't win !

@connie104 ....this is partly my concern....am hoping that pain clinic will not be suggesting more medication as was hoping to cut back on some of the adverse side effects, especially as some are not helping other problems /symptoms...
Hopefully they will be able to review the ones he is on....amitriptyline for nerve pain and cocodamol for joint / general pain ...and suggest what is best for current level of pain....
...will try to avoid anything too addictive as want to minimise possible side effects...will review any suggestions thoroughly before agreeing to anything...
Am sorry to hear of your experience but hope that your new hip has brought you some benefits despite the resulting neuropathic pain...wishing you a better year than the last...

 

[connie104]

You are right to be anxious regarding the pain clinic as from my experience they hand out heavy duty painkillers like sweets ! Remember I live in Spain but a friend had a similar result in the UK .
Please try and enjoy your holiday and have a few days off from worrying about your partner. Hope you have managed to get to see the butterflies x

 

[Molly56]

You are right to be anxious regarding the pain clinic as from my experience they hand out heavy duty painkillers like sweets ! Remember I live in Spain but a friend had a similar result in the UK .
Please try and enjoy your holiday and have a few days off from worrying about your partner. Hope you have managed to get to see the butterflies x

@connie104 ....was just wondering what painkillers you were prescribed if you don't mind me asking....just wanted to check out some of the options before we go to the appointment in case any are suggested...I always think it is best to go prepared....must be the Girl Guide in me!
Had a return visit to the butterfly farm today ....went on my own...it was lovely...

 

[connie104]

Hi Molly. I was prescribed Oxicodone ( brand name Targin) 40 mg twice a day and I also tried Tapentadol can't remember the mg. they also prescribed Duloxetine for the neuropathy to be taken with the oxicodone this combination nearly killed me never been so Ill in my life. When I told the pain clinic they just said oh you better not take it then !
I have just been to my doctor as I in pain with my knee and she said she could only offer me Oxicodone as I had been on it before for so long every other pain killer would be less effective . I refused them and got a perscription for tramadol which has not made any difference at all so she was righti
Glad your enjoying your holiday x

 

[Molly56]

Hi Molly. I was prescribed Oxicodone ( brand name Targin) 40 mg twice a day and I also tried Tapentadol can't remember the mg. they also prescribed Duloxetine for the neuropathy to be taken with the oxicodone this combination nearly killed me never been so Ill in my life. When I told the pain clinic they just said oh you better not take it then !
I have just been to my doctor as I in pain with my knee and she said she could only offer me Oxicodone as I had been on it before for so long every other pain killer would be less effective . I refused them and got a perscription for tramadol which has not made any difference at all so she was righti
Glad your enjoying your holiday x

@connie104 ....thanks for the information...have looked these up and can see that they are quite strong painkillers and perhaps ones to be avoided for now, at least until some of the other options have been tried out first...

Am doing a quick bit of research before the appointment next Monday just so that I am aware of the different drugs available should they mention any options....am not sure how far they will get as this is only the first initial appointment at the pain clinic and am guessing that this will just involve taking a history of symptoms and arranging any tests or investigations...

I have noticed that other members of the forum are taking Gabapentin....I seem to remember that my partner was given this a couple of years ago but that he gave up with it as it didn't seem to have any effect...don't think we really understood what it was supposed to achieve...

He has recently been on Amitriptyline for neuropathic pain which I guess must be doing something..
...the GP did suggest at one point Duloxetine but think that this would mean stopping the Amitriptyline and the Sertraline to prevent any conflicts or contraindications..I think the appointment with the pain clinic has come about by the GP writing to them for advice about moving to the Duloxetine but will have to see when we get there...

Am just trying to get my head around all of this so that hopefully we will get the best outcome from the appointment next week...

 

[connie104]

Good luck Molly I came away with a script for tapentadol on the first visit. They phoned me every week to see if tablets were working and when I said no they just increased the dose. Review every 6 weeks and would change medication or add others.
This was my experience in Spain maybe the Uk is different.
My husband says I was expecting too much but when in pain and having to wait nearly 3 months for appointment you think they can help you x

 

[Molly56]

As expected a letter arrived whilst we were away for his next review with the diabetic nurse...three months since last appointment and increase in medication.....will need to go before next months repeat prescription is due otherwise they may not issue it as review date is now overdue.
The letter asks for a HbA1c blood test to be done first but the form doesn't mention if this is fasting or non-fasting......what is normally the case with this type of blood test?...I am assuming that they will tell him when he books the appointment but thought it normally specified this on the form...
Unfortunately I don't think he fully realises what this will show and that the over excesses of our recent holiday will somewhat skew the results....anyway we will have to wait and see...

 

[Bluetit1802]

An HbA1c test does not need to be fasting. However, if a cholesterol/lipids test is also being done, that will require fasting.

 

[Molly56]

An HbA1c test does not need to be fasting. However, if a cholesterol/lipids test is also being done, that will require fasting.

@Bluetit1802 ...thanks for reply....is only the HbA1c test this time...

 

[graj0]

As expected a letter arrived whilst we were away for his next review with the diabetic nurse...three months since last appointment and increase in medication.....will need to go before next months repeat prescription is due otherwise they may not issue it as review date is now overdue.
The letter asks for a HbA1c blood test to be done first but the form doesn't mention if this is fasting or non-fasting......what is normally the case with this type of blood test?...I am assuming that they will tell him when he books the appointment but thought it normally specified this on the form...
Unfortunately I don't think he fully realises what this will show and that the over excesses of our recent holiday will somewhat skew the results....anyway we will have to wait and see...

Hi Molly,
don't forget that measuring glycated haemoglobin (HbA1c), clinicians are able to get an overall picture of what our average blood sugar levels have been over a period of weeks/months. That's straight from Diabetes UK and I believe it's about 3 months, so like a 3 month average. The excesses of a couple of weeks will affect that number, but maybe not by a lot, if the rest of the time was more disciplined. Although the HbA1c may look good it's those periods of going off course that does the damage. Another good reason for type IIs measuring regularly. Might be worth asking your surgery if they intend to measure total cholesterol although I see that you say it's only HbA1c. My surgery used to do that, say come for your HbA1c and do the cholesterol at the same time which requires fasting, without telling me.

 

[Molly56]

Hi Molly,
don't forget that measuring glycated haemoglobin (HbA1c), clinicians are able to get an overall picture of what our average blood sugar levels have been over a period of weeks/months. That's straight from Diabetes UK and I believe it's about 3 months, so like a 3 month average. The excesses of a couple of weeks will affect that number, but maybe not by a lot, if the rest of the time was more disciplined. Although the HbA1c may look good it's those periods of going off course that does the damage. Another good reason for type IIs measuring regularly. Might be worth asking your surgery if they intend to measure total cholesterol although I see that you say it's only HbA1c. My surgery used to do that, say come for your HbA1c and do the cholesterol at the same time which requires fasting, without telling me.

@graj0 ...this is what I understand that the HbA1c shows (average over 3 months) so know that the results may not be too good based on the over indulgences on holiday...the rest of the time was better but do not know if i would go as far as describing them as disciplined...anyway will just have to wait and see...

Blood sugar reading today, taken before dinner was 14.4 so definitely on the high side at the moment and obviously needs some work to bring it down to acceptable levels...do not know what it went up to after eating as didn't test.....(at least I am getting him to test some of the time which is an improvement on three months ago)..
..as you say it is the periods when thing go off course that the damage is done and I am aware of that / do worry about that....

i seem to remember that he had more general blood tests just recently which I think would have included cholesterol levels so think it is safe to assume that it is just the HbA1c they are interested in this time in order to be able to review his diabetic medication.

 

[Molly56]

I'm having a knee replacement in November and another one in March and I'm like a kid a Christmas, I can't wait.

Again, in my case, TKR as it's known in the trade (Total Knee Replacement) can have different outcomes because of the way different people approach physio. I personally know someone who didn't do as they were told physio wise and is still in discomfort and walks with a limp. I also know a lady (a very determined positive lady) who had her surgery a bit later and can jive like it's going out of fashion. I think it's fair to say that we have to make all sorts of effort to stay on top. With diabetes, we certainly know how true that is.

@graj0….noticed these replies on another thread and hope you don’t mind me asking you a couple of questions…

As you may have gathered my partner has been referred to a consultant for a potential knee replacement….his appointment for the initial consultation is in mid November…
I am somewhat doubtful if he will be considered for surgery given both his current weight (approx. 19 - 20 st) and high blood sugar levels but will have to see what the consultant has to say…
I know it probably varies from one area to another to some extent but just wondered what criteria you were given in order for your knee surgery to go ahead..

Also picking up on your comments about the physio…. this is another area that concerns me if he was to be offered the surgery as I cannot see him doing the required physio in order to make the operation successful and worthwhile…
….this is based on a couple of previous bouts of physio (one of which was following a cartilage repair in his knee) when he went for a couple of sessions and I know for a fact that he didn’t follow instructions and do the required exercises at home to strengthen the muscles in his leg….he very quickly decided that it was a waste of time and was quickly discharged from future appointments
….I fear that this and his general level of inactivity will sadly render any knee replacement surgery a waste of time and money….sorry if this sounds negative but I can already anticipate what will happen…

Anyway enough of the negative thinking……in case I forget, may I take this opportunity to wish you all the best with your knee replacement in November….hope it goes well and that you have a speedy recovery…
….and a final question for now…… have you booked your transatlantic voyage yet?...if I remember rightly this is one of the items on your post operative wish list….

Wishing you all the best..

 

[graj0]

@graj0….noticed these replies on another thread and hope you don’t mind me asking you a couple of questions…
As you may have gathered my partner has been referred to a consultant for a potential knee replacement….his appointment for the initial consultation is in mid November…
I am somewhat doubtful if he will be considered for surgery given both his current weight (approx. 19 - 20 st) and high blood sugar levels but will have to see what the consultant has to say…
I know it probably varies from one area to another to some extent but just wondered what criteria you were given in order for your knee surgery to go ahead..

You're most welcome to ask. In my case I have spent the last 12 years being told that I'm too young (62 now) to have TKR because they might only last 10 years especially with my weight (19st ish), as far as theNHS are concerned, that is still the case. The NHS used to see me every year to monitor the situation but as it's been bone on bone for a number of years they don't bother unless my GP refers me. Fortunately my BG has always been good and never a problem. I actually went and found a prosthetic that has a 30 year warranty which is being paid for by insurance. I had to write to Smith & Nephew, the manufacturer, to get the name of my surgeon as being someone expert in using the particular prosthetic. I've got a good one, his first words to me were "Mr Jones, your knees are totally ********, we need to replace them as soon as we can". I like him! LOL Should there be any issues with my weight or blood pressure, I'll have an epidural. Seems the noise is OK but burnt bone isn't great.

Also picking up on your comments about the physio…. this is another area that concerns me if he was to be offered the surgery as I cannot see him doing the required physio in order to make the operation successful and worthwhile…
….this is based on a couple of previous bouts of physio (one of which was following a cartilage repair in his knee) when he went for a couple of sessions and I know for a fact that he didn’t follow instructions and do the required exercises at home to strengthen the muscles in his leg….he very quickly decided that it was a waste of time and was quickly discharged from future appointments
….I fear that this and his general level of inactivity will sadly render any knee replacement surgery a waste of time and money….sorry if this sounds negative but I can already anticipate what will happen…

The physio is CRUCIAL, sorry for shouting but if you don't do it right you'd be wasting time and money and would have very poor mobility after the surgery. I have done a lot of exercise already and to be honest it's kept me on my feet although I do suffer at airports and use a wheelchair. I'm lucky because I know two physios very well, so I'm hoping to call in a favour or two to help with additional physio staying aware that too much is as bad as too little.

….and a final question for now…… have you booked your transatlantic voyage yet?...if I remember rightly this is one of the items on your post operative wish list….
Wishing you all the best..

I shall be leaving the UK on November 14th 2015 for a weeks "shake down" with the other 5 crew members. The Atlantic Rally for Cruisers as it's known starts on November 22nd and arrival in St Lucia should be December 10th (ish). I've met the skipper and first mate (husband and wife, both qualified RYA Yachtmaster instructors, nothing shabby LOL). So, I'm all signed up.
Thanks for your wishes, so long as all goes according to plan . . . . . . . . My fingers are crossed just in case. So are my toes.
Take care
Graham

 

[Molly56]

You're most welcome to ask. In my case I have spent the last 12 years being told that I'm too young (62 now) to have TKR because they might only last 10 years especially with my weight (19st ish), as far as theNHS are concerned, that is still the case. The NHS used to see me every year to monitor the situation but as it's been bone on bone for a number of years they don't bother unless my GP refers me. Fortunately my BG has always been good and never a problem. I actually went and found a prosthetic that has a 30 year warranty which is being paid for by insurance. I had to write to Smith & Nephew, the manufacturer, to get the name of my surgeon as being someone expert in using the particular prosthetic. I've got a good one, his first words to me were "Mr Jones, your knees are totally ********, we need to replace them as soon as we can". I like him! LOL Should there be any issues with my weight or blood pressure, I'll have an epidural. Seems the noise is OK but burnt bone isn't great.

The physio is CRUCIAL, sorry for shouting but if you don't do it right you'd be wasting time and money and would have very poor mobility after the surgery. I have done a lot of exercise already and to be honest it's kept me on my feet although I do suffer at airports and use a wheelchair. I'm lucky because I know two physios very well, so I'm hoping to call in a favour or two to help with additional physio staying aware that too much is as bad as too little.

I shall be leaving the UK on November 14th 2015 for a weeks "shake down" with the other 5 crew members. The Atlantic Rally for Cruisers as it's known starts on November 22nd and arrival in St Lucia should be December 10th (ish). I've met the skipper and first mate (husband and wife, both qualified RYA Yachtmaster instructors, nothing shabby LOL). So, I'm all signed up.
Thanks for your wishes, so long as all goes according to plan . . . . . . . . My fingers are crossed just in case. So are my toes.
Take care
Graham

@graj0 ..Wow...didn't think when I asked the question that you would already be signed up for your transatlantic voyage but what an incentive to get back on your feet and back to full health after your operations...sounds really exciting and definitely something positive to aim for....I look forward to hearing about your adventures...

Thanks also for the other information...at least it gives me some ideas of what lies ahead when we get to see the knee / hip consultant in November...am hoping I am not being too pessimistic but I do have some real concerns about this.

The difficulty in part will be that I am not the patient so whilst I will be able to go along to support my partner I am not sure how much I can or should say...whilst I have a hundred and one questions that I would like to ask it will ultimately be for my partner to discuss this and to agree any future treatment options....I doubt though that he will have questions he will ask (as he doesn't seem to be giving it any real thought or looking into / researching what is involved as I have done) and will just accept the consultants verdict....guess I will just have to see how the initial consultation goes and then take it from there...

I have suggested that strengthening the muscles in his leg could help to ease the pain he is feeling ....and I guess this would help in preparation for any potential surgery / recovery....but this falls on deaf ears.....in my opinion his total lack of activity / inactivity is not helping the matter at all...but what do I know!! Am hoping that someone else will point this out to him as he is certainly not listening to me

Apologies for sounding negative but I can't see him achieving the same positive outcomes that I am sure that you will achieve.

All the best

 

[graj0]

I have suggested that strengthening the muscles in his leg could help to ease the pain he is feeling ....and I guess this would help in preparation for any potential surgery / recovery....but this falls on deaf ears.....in my opinion his total lack of activity / inactivity is not helping the matter at all...but what do I know!! Am hoping that someone else will point this out to him as he is certainly not listening to me:(

All the best:)

I replied to the video on another thread, the guy who turned his life around, it is inspirational, I drew a lot of inspiration and encouragement from it. I had been told so much rubbish over the years that I would have tried anything to improve my health. The one thing I realised was that it was totally down to me and nobody was going to do it for me. I know people personally, including a very recently diagnosed cousin (type II) who just don't get it.
The work I have done to strengthen my leg muscles hasn't been as arduous as it could have been, I'm a bit lazy really, but what I did do was enough to help me walk more and without as much pain. There are some days that are worse than others and amazingly days that are absolutely fantastic with very little pain. The thing with bad knees is that they set other things off as well so in my case my back goes into spasm and the sciatica can be pretty nasty. I'm lucky that the last time the x-ray'd my hips, they were OK, it's my one great fear, or is that one of my great fears? The exercise has helped a lot and I'm determined that I will do what's essential for a good outcome, physio wise. I've got another knee to replace after this one, as well as an ocean to cross and a pair of skis to get back on. Hang gliding and parachuting I'll just have to give up. LOL
I truly believe that we all have immense power over our health, we know what has to be done and we have to do it without discussing the pros and cons in our own heads. Part of the reason I'm writing this is to keep re-enforcing the idea in my own head, I am a frail human after all.
I'd like to think that I'm realistic, my plans could go any which way, but at least I'll have tried.
As someone who has tried to lose weight for the last eight years, doing ALL the right things and failing, I know frustration and disappointment, but I tried and I still haven't given up. I've been learning all about the Krebs Cycle recently and ATP, fascinating. LOL
Take care Molly, all the best. You will be surprised where this journey takes you.[/user]