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

[Molly56]

Just a quick update following visit to the pain management clinic today….it appears this was as a result of a letter from the GP asking about change in medication for pain….was currently on Amitriptyline for nerve pain and co-codamol for general pain.

Outcome was to stop the Amitriptyline over the next week reducing to 20mg from 30mg and to stop these in a week’s time…guess this reduces any side effects of withdrawal…this will then be replaced by 30mg Duloxetine (with potential to increase this to 60mg if needed)

Am a little sceptical about the Duloxetine having read mixed reviews but guess will need to give it a try….am guessing that this is perhaps better than some of the stronger types of painkillers that could be offered with potentially much worse side effects.

Was also prescribed Capsaicin cream to be used on knee and hip areas….need to be careful with this one as evidently it is derived from red-hot chilli peppers…could be nasty if applied in the wrong places…

Follow up consultation is in about six week’s time after appointment with knee / hip consultant (mid Nov) so will have to see if it has helped.....and what their verdict is on treatment for knee and / or hip...

@graj0 Also saw physiotherapist who has suggested strengthening exercises for leg muscles…am very sceptical whether or not he will do these but I did take the opportunity to ask the question / mention that this would be important if being considered for any future knee replacement surgery and she backed me up on this…perhaps this will be the incentive I can use when asking him whether he has done his exercises…

On diabetic front............Blood test for HbA1c has been booked for next Monday….next appointment to book is with diabetic nurse in a couple of weeks time….....diary filling up with appointments....

 

[graj0]

Was also prescribed Capsaicin cream to be used on knee and hip areas….need to be careful with this one as evidently it is derived from red-hot chilli peppers…could be nasty if applied in the wrong places…

This is rather obvious, but easily overlooked as I know to my cost, "WASH HANDS THOROUGHLY AFTER USING CAPSAICIN". As you say, it's derived from chilli peppers.

 

[Molly56]

This is rather obvious, but easily overlooked as I know to my cost, "WASH HANDS THOROUGHLY AFTER USING CAPSAICIN". As you say, it's derived from chilli peppers.

@graj0 ...thanks for the word of caution...have got some disposable gloves so will encourage him to use these..
Did you find that the capsaicin cream helped you...so far he has only applied it once but it seems to have alleviated some of the pain so early indications are positive..
Am still very doubtful that he will do the physio but will just have to keep giving him gentle reminders of the benefits of doing this.....have left cream and physio leaflet together in a prominent position...

 

[Molly56]

Just a quick update following visit to the pain management clinic today….it appears this was as a result of a letter from the GP asking about change in medication for pain….was currently on Amitriptyline for nerve pain and co-codamol for general pain.

Outcome was to stop the Amitriptyline over the next week reducing to 20mg from 30mg and to stop these in a week’s time…guess this reduces any side effects of withdrawal…this will then be replaced by 30mg Duloxetine (with potential to increase this to 60mg if needed)

Am a little sceptical about the Duloxetine having read mixed reviews but guess will need to give it a try….am guessing that this is perhaps better than some of the stronger types of painkillers that could be offered with potentially much worse side effects.

Was also prescribed Capsaicin cream to be used on knee and hip areas….need to be careful with this one as evidently it is derived from red-hot chilli peppers…could be nasty if applied in the wrong places…

Follow up consultation is in about six week’s time after appointment with knee / hip consultant (mid Nov) so will have to see if it has helped.....and what their verdict is on treatment for knee and / or hip...

@graj0 Also saw physiotherapist who has suggested strengthening exercises for leg muscles…am very sceptical whether or not he will do these but I did take the opportunity to ask the question / mention that this would be important if being considered for any future knee replacement surgery and she backed me up on this…perhaps this will be the incentive I can use when asking him whether he has done his exercises…

On diabetic front............Blood test for HbA1c has been booked for next Monday….next appointment to book is with diabetic nurse in a couple of weeks time….....diary filling up with appointments....

Changed from Amitriptyline to Duloxetine today......hoping that there will not be any unwanted side effects from change in medication....will watch out for any signs...
Seems the capsaicin cream is having some effect so fingers crossed it keeps doing it's job.....other than that no real changes.....all is much the same as before in terms of activity or should I say lack of activity!
Next appointment on the agenda is with diabetic nurse...HbA1c blood test done / awaiting results......possibly / probably more changes in medication to add to the current mix....
....how all these medications have any effect I will never know given the contraindications etc when you start to look into the various combinations....in fact some say they potentially raise blood glucose levels which will then mean more diabetic medication to bring it down....it's crazy....am checking each one with the pharmacist as we go if in any doubt...

 

[Molly56]

@graj0 ...thanks for the word of caution...have got some disposable gloves so will encourage him to use these..
Did you find that the capsaicin cream helped you...so far he has only applied it once but it seems to have alleviated some of the pain so early indications are positive..
Am still very doubtful that he will do the physio but will just have to keep giving him gentle reminders of the benefits of doing this.....have left cream and physio leaflet together in a prominent position...

@graj0 ....just a quick question about the Capsaicin cream....
...it seems to be working it's magic as the pain seems to have eased considerably - in fact he told me yesterday that it is a lot better and he seems to be able to move more easily without complaining of any pain...so some good news for once
It also seems that he has not used it in the last couple of days....so my question is....as it is a topical cream should it just be used as and when required....I am assuming this is the case and that there are no added benefits in applying it on a regular basis ....it says apply four times a day on the packet but I think he was only using it two or three times a day when he remembered to do it....
The other question is ....just thought of it....would it be ok to use in other areas such as the joint pain he gets in his thumb joint (presumably this is arthritis)....should probably check with GP I guess but wondered what you thought being a previous user of the product....

 

[graj0]

....so my question is....as it is a topical cream should it just be used as and when required....I am assuming this is the case and that there are no added benefits in applying it on a regular basis ....it says apply four times a day on the packet but I think he was only using it two or three times a day when he remembered to do it....
....would it be ok to use in other areas such as the joint pain he gets in his thumb joint (presumably this is arthritis)....should probably check with GP I guess but wondered what you thought being a previous user of the product.

The following comes from an NHS Pain Management website, although in my case it wasn't prescribed by a GP, I just tried it.

The capsaicin is thought to work by decreasing the amount of pain transmitting chemical from the nerve cells where pain is experienced. Initially this causes a burning or stinging sensation, which happens because the capsaicin causes the pain-transmitting chemical to be released into the skin from the nerves and the body senses this as burning or stinging.

It is also thought that the capsaicin is absorbed by nerve cells, is transported all the way to the spinal cord and decreases the amount of pain transmitting chemical that is sent on to the brain. If you are getting benefit then carry on applying it as long as you like.

I think there is a cumulative affect so possibly better to apply regularly y problem was always remembering to apply it. I was trying other things as well including something called Flexiseq which is mega expensive, but very effective. I also used to get the feeling that their recommendation might have been to make sure you used the stuff quickly, but I'm probably wrong. I suppose if twice a day works, do twice a day, but maybe see if a more disciplined application four times a day works.

I think the only real side effect would be the burning sensation which is more tolerable than arthritic pain.I would certainly try it on other areas.[/user]

 

[Molly56]

The following comes from an NHS Pain Management website, although in my case it wasn't prescribed by a GP, I just tried it.

The capsaicin is thought to work by decreasing the amount of pain transmitting chemical from the nerve cells where pain is experienced. Initially this causes a burning or stinging sensation, which happens because the capsaicin causes the pain-transmitting chemical to be released into the skin from the nerves and the body senses this as burning or stinging.

It is also thought that the capsaicin is absorbed by nerve cells, is transported all the way to the spinal cord and decreases the amount of pain transmitting chemical that is sent on to the brain. If you are getting benefit then carry on applying it as long as you like.

I think there is a cumulative affect so possibly better to apply regularly y problem was always remembering to apply it. I was trying other things as well including something called Flexiseq which is mega expensive, but very effective. I also used to get the feeling that their recommendation might have been to make sure you used the stuff quickly, but I'm probably wrong. I suppose if twice a day works, do twice a day, but maybe see if a more disciplined application four times a day works.

I think the only real side effect would be the burning sensation which is more tolerable than arthritic pain.I would certainly try it on other areas.

@graj0 thanks for the info....think I will suggest that he continues using it a couple of times a day or at least as often as he remembers to do so...have also suggested that he uses it on his thumb joint to see if it helps to alleviate some of the pain there..

Interestingly though he does not seem to get a burning sensation on application though I did expect he would from reading the precautions on the enclosed leaflet........I am wondering if this is a sign of nerve damage / loss of sensation in that area caused by his diabetes....I asked if he could feel hot water in the shower on that part of his body and apparently he doesn't or at least not to the same extent as elsewhere....

...this also links to the fact that he can't feel the water is hot with one of his hands.....I consider this to be a worrying sign (potential for burns and scalds either now or in the future) but he doesn't seem bothered by it...

 

[Molly56]

Made an appointment today with the diabetic nurse for the results of latest HbA1c test......unfortunately the earliest appointment they could offer was Weds 26th Nov.......am assuming his medication may be reviewed in light of his recent results but won't actually know until the appointment....

Am not sure how this will affect or impact on his appointment with the hip / knee consultant which fortunately / unfortunately is for the week after next (18th)......I was hoping that we would have seen the diabetic nurse before that to agree any alterations to diabetic medication and have HbA1c results with us when we went to see the consultant....

......Personally I would want that information but of course the surgery won't give me that (as I am not the patient) and as my partner doesn't want to know he won't contact the surgery to find out...

....it seems that the consultant will have that information (as it will be on their system)....so effectively this may already determine the outcome of the appointment and if the blood sugar levels are high (which they probably are) then nothing will be in place to be bringing those down..
..and further to that I have a feeling that any suggestions to up medication / change medications will be resisted....

Anyway, am not going to stress over this as nothing I can do about it....(awaiting criticism for that last comment as everyone now tells me i can)....will just have to wait and see what the outcome of the two appointments is and support any decisions as and where appropriate...

Have made the diabetic nurse appointment and will make sure that he attends but other than that it is ultimately down to him....

 

[graj0]

Interestingly though he does not seem to get a burning sensation on application though I did expect he would from reading the precautions on the enclosed leaflet........I am wondering if this is a sign of nerve damage / loss of sensation in that area caused by his diabetes....I asked if he could feel hot water in the shower on that part of his body and apparently he doesn't or at least not to the same extent as elsewhere....

...this also links to the fact that he can't feel the water is hot with one of his hands.....I consider this to be a worrying sign (potential for burns and scalds either now or in the future) but he doesn't seem bothered by it.

There is the very real potential to burn when you don't have the normal feeling that non diabetics have. The need to avoid burns is obvious to most people who don't want to spend any time in their burns unit receiving skin grafts but there is the added complication of infections, amputations and death.
I never realised how serious infections can be and they're not always localised to the wound. In my father's case the infection in his toe which he tried to ignore actually affected his whole body and he was lucky to only lose his toe and not his leg or his life.

 

[Molly56]

Changed from Amitriptyline to Duloxetine today......hoping that there will not be any unwanted side effects from change in medication....will watch out for any signs......

It is now two weeks since changing pain medication and it seems that there are no major adverse side effects to speak of....am guessing that if there were going to be any they would have shown up by now....
....in fact the change seems to have had a few positive effects in that he seems a bit brighter than he was before and much more inclined to do things and generally less tired / less inclined to go back to bed......perhaps the months of not wanting to do anything were just down to the medication he was on.....who knows....

Anyway, this week sees the long awaited appointment with the knee / hip consultant so will just have to wait and see what they have to say....and next week an appointment with the diabetic nurse to review medication ....don't know results of latest Hb1Ac test yet - may see if I can get it when we see the consultant on Tuesday so that we know where we are with blood sugar levels but if not will find out from the nurse the following week....

.....would like to think that there will be some more positive news to add to the positive signs already noted at the beginning of this post....will just have to wait and see what the next couple of weeks bring.....

 

[DeejayR]

One day at a time, make haste slowly etc. Haha, I'm a fine one to talk. Let us know how it's going.

 

[Molly56]

Just a brief update following visit to knee consultant today....following examination it was suggested that physio should be the first port of call to strengthen leg muscles with follow up consultation in three months time to reassess how it is then....am hoping that recent improvement in mood etc will be encouragement to do this....he seems much more positive and has suggested that he feels able to walk round to the shops to get the papers and lunch for tomorrow....

Next appointment is with diabetic nurse next week....still don't know results of recent HbA1c but expect that it will be high.....reading before dinner tonight was 16.0 if that is anything to go by.....

As @DeejayR said above....One day at a time, make haste slowly.............but I do feel that some progress is being made....

 

[graj0]

Molly,
sounds like things are moving forward, and that medication had created someone that you didn't know and I think I've been there. Keep your head up and "don't let the bastards grind you down" as they say (not sure who or where, but you get the picture).

 

[Pip16]

Hi Molly. Great news that your oh now seems a bit more positive and not so tired. Hopefully it was the medication and now he's off it you will continue to see improvement in him, However gradual and slowly it may seem.
Unfortunately I've been told I'll be on the amitriptyline for life. Or at least until something new comes along to control the ibs. I've asked quite a few dr's if it can be changed. Whenever I tried to come off it in the past, I go through 4 weeks of hell getting past the withdrawal effects and then all my symptoms return with a vengeance. Not good!

My fingers are crossed for you and your oh continues to improve.

 

[Molly56]

Was just giving some quick thought to the appointment this week with the diabetic nurse....at this stage we do not know the results of the latest HbA1c test and what this will show or what the recommendations of the nurse will be....but just thought it would be useful to be prepared to ask relevant questions when the time comes...
I guess my main question will be to ask why the current medication is not bringing his blood sugar levels down and whether the current level of medication is sufficient given his current circumstances.....and yes, I am aware that there are other alternatives before someone mentions them....but I have to work with what I have got...at least for now...
So....if the metformin and gliclazide are not doing the job then I am guessing that perhaps insulin may be offered.....this is something I have no idea about so just wondered if someone could explain in straightforward terms what this would involve on a day to day basis for my partner...I know there are perhaps web pages that would tell me this but thought a personal view from a forum member who has been there would help me to understand it better .....
.....perhaps it may not come to that but I would like to be prepared if it does...thanks

 

[daddys1]

Hi Molly,
I understand that you need to be prepared, but I do think (personally) you are jumping to far ahead. The medication as far as I am aware is only a help for this condition it does not relieve all possible symptoms. The correct Diet (Low Carbs) & exersize are what will help get these numbers down, there is no miracle cure.

I don't know too much about Type 1 but you still have to be ready to test and eat the correct food and I'm sure exersize is in there somewhere.

He has to acknowledge what he has.

Neil

 

[Molly56]

Hi Molly,
I understand that you need to be prepared, but I do think (personally) you are jumping to far ahead. The medication as far as I am aware is only a help for this condition it does not relieve all possible symptoms. The correct Diet (Low Carbs) & exersize are what will help get these numbers down, there is no miracle cure.

I don't know too much about Type 1 but you still have to be ready to test and eat the correct food and I'm sure exersize is in there somewhere.

He has to acknowledge what he has.

Neil

@daddys1 ..I fully agree with everything you say....just to correct though my partner is Type 2 (long term over 15 years), not Type 1, so the moving to insulin part is just the next step (as I understand it) if the other medications are not sufficient given all other factors.

I wish he would acknowledge what he has and want to do something about it.....I try wherever possible to encourage the right foods and cut down on the carbs where I can.....over the time I have managed to cut back on some of the bad food habits but he will still insist on some.....skipping breakfast being one (he rarely gets up before 11 o'clock) and a bowl of porridge in the evening being the other (despite my look of disapproval)...

As for exercise ...his lack of activity is the problem and once again I have suggested on numerous occasions that this would help but he still fails to do anything.....for at least the last few medical appointments with the diabetic nurse (over the last couple of years) and other consultants (pain management / hip consultant) I have sat there whilst he has said that he will do more exercise and has mentioned the exercise bike / cross trainer that I have.....he has not used it once to my knowledge and I even moved it to a more accessible place in the house so that he has no excuse of it being inconvenient....I know for a fact he will tell the nurse he will do this but it will just not happen.......
....lack of activity is I think one of the key issues but if he just won't do it / makes excuses why he can't do it then what....even walking is kept to a bare minimum because of problems with his knee / hip....

Perhaps thinking about it I need to ask the nurse to explain what the next step will be in terms of medication and exactly what it will involve....perhaps that will make him acknowledge that he has got to do something about it and spark him into some action....

Some info from forum members would also still be useful in the meantime though just so that I can get a proper understanding of where this may be heading...

 

[Molly56]

So....if the metformin and gliclazide are not doing the job then I am guessing that perhaps insulin may be offered.....this is something I have no idea about so just wondered if someone could explain in straightforward terms what this would involve on a day to day basis for my partner...I know there are perhaps web pages that would tell me this but thought a personal view from a forum member who has been there would help me to understand it better .....
.....perhaps it may not come to that but I would like to be prepared if it does...thanks

Perhaps thinking about it I need to ask the nurse to explain what the next step will be in terms of medication and exactly what it will involve....perhaps that will make him acknowledge that he has got to do something about it and spark him into some action....

Some info from forum members would also still be useful in the meantime though just so that I can get a proper understanding of where this may be heading...

It seems that we have now reached this point so any words of advice or experience from Type 2 who have moved from oral medication (metformin and gliclazide) to insulin would be extremely helpful to me......

...am guessing it will all be explained by the diabetic specialist nurse when we get an appointment but nothing beats hearing personal experience of someone who has been there........that is the great thing that I love about this forum.....

Thanks

Current HbA1c (results today) = 74 or 8.9%....hope I have got that right...
Current medication 2000mg metformin 320mg gliclazide