Hello Everyone,
I need some help and advice as I am not getting any were fast with my own consultant or doctor, or my diabetic nurse.
To give you some background I was first diagnosed with fibromyalgia in 2006. I have a lot of the symptoms, some more constant than others. Each year it gets worse and I have opiate patches and pills and muscle relaxants for it. In early 2008 I was diagnosed as type 2 diabetic put on the usual medicine metaformine etc. My blood sugar was controlled quite well until I gave up smoking. Which was two and half years ago. I put on three half stone before I gave up smoking, due to being glicktide. I asked to come off it because of the weight and they put me on “actos (janvita)”, I also had to come off the metaformine because it caused me such bad wind and diarrhoea and affected my fibromyalgia very badly indeed.
It is at this time my blood sugar started not to be controlled as well and getting worse. My nurse changed and unlike my old one which I got on with very well, changed to a very unlistened too, nurse and patient relationship. The new diabetic nurse just wanted to up my medication all the time. Then I had to spend a year with seeing all the diabetic nurse team attached to my local hospitals, This was infuriating process to say the least. My diabetic nurse never explained anything to them i.e. my fibromyalgia. So I would use up ¾ of the appointment trying to explain what it is and the severe impact it has on my life to nurses to be honest who had no clue or experience, but would never admit it to me or to my diabetic nurse.
So at the end of one year with all this going on, I asked to go to see a diabetic consultant. Again my diabetic nurse for what ever reason did not make a report or send any results, or any conversation notes to the consultant. He was very angry to say the least, so that ruined the first appointment. The two appointments after was spent trying to explain fibromyalgia, the severe diarrhoea (1 year) I was having. Trying to understand why he was so adamant that when I said, I think my insulin ( insuman comb 25 100 units for injection solo star(sanofi) was not working he just refused to talk about it and said it was like all the rest. As for what was happening at my back end, he just recommended that my GP do something. The letter with that in got to my door but not my GP's practice. They then photocopied it and lost it and nothing happened. It has got better in time but not the same as I was. I was then put on Dapagliflozin and told to lose a lot of weight i.e. two stone over a year or so. I had such reaction to the side effects of having to go to wee all the time, it built up over time and had to wait until next appointment which was 6 months.
I was taken off Dapagliflozin and left with no other add-in. My FMS was not really understood had to explain all over again and my GP had to ask for the report as I turned up at the surgery complaining my blood sugar was between 16-24 most of the time. On top of this I have had my recent eye test and they told me my eyes have been damaged. I now need glasses for everything which I did not before, I am 46.
Another weird warning flag was the pharmacist last time I picked up my drugs. Asked me how much insuman comb 25 100 units for injection solo star, I was on. I told her I was on 148 units a day and she told me she was concerned as that was a large amount. I said I was told by my diabetic nurse that it was common insulin and the pharmacist said she had never heard of it before. Even the pharmacist assistant whose grandfather takes it said that he has only 10 units and the hospital asked her to bring it in as they do not stock it. I am just coming up to another consultant appointment angry and very apprehensive because they are not listening and I am getting damaged in the process. To be honest, I am not sure what to do even. As a side note I am very nice patient as my mum is an ex-nurse and I say please and thank everyone for their help. Also, to give you an idea my FMS makes me sleep 1-4 times a day. I have pain in most of my body head to toe. I have a problem with my rib muscles contracting. Fibro fog on the worse days. So putting a hoover around my small front room 14ftx8 can put me in bed for a day or two or at least make me sleep and ache for a while, to give you an idea.
So my questions are….
1. Does anyone here have experience of insuman comb 25 (good or bad)?
2. Can anyone put me in the right direction or explain my rights to seeing another consultant?
3. My diabetic nurse has been so bad I really loath to see her, what would you do in my shoes ?
Thank you just for reading and any help you give.
All the best Stefan
I need some help and advice as I am not getting any were fast with my own consultant or doctor, or my diabetic nurse.
To give you some background I was first diagnosed with fibromyalgia in 2006. I have a lot of the symptoms, some more constant than others. Each year it gets worse and I have opiate patches and pills and muscle relaxants for it. In early 2008 I was diagnosed as type 2 diabetic put on the usual medicine metaformine etc. My blood sugar was controlled quite well until I gave up smoking. Which was two and half years ago. I put on three half stone before I gave up smoking, due to being glicktide. I asked to come off it because of the weight and they put me on “actos (janvita)”, I also had to come off the metaformine because it caused me such bad wind and diarrhoea and affected my fibromyalgia very badly indeed.
It is at this time my blood sugar started not to be controlled as well and getting worse. My nurse changed and unlike my old one which I got on with very well, changed to a very unlistened too, nurse and patient relationship. The new diabetic nurse just wanted to up my medication all the time. Then I had to spend a year with seeing all the diabetic nurse team attached to my local hospitals, This was infuriating process to say the least. My diabetic nurse never explained anything to them i.e. my fibromyalgia. So I would use up ¾ of the appointment trying to explain what it is and the severe impact it has on my life to nurses to be honest who had no clue or experience, but would never admit it to me or to my diabetic nurse.
So at the end of one year with all this going on, I asked to go to see a diabetic consultant. Again my diabetic nurse for what ever reason did not make a report or send any results, or any conversation notes to the consultant. He was very angry to say the least, so that ruined the first appointment. The two appointments after was spent trying to explain fibromyalgia, the severe diarrhoea (1 year) I was having. Trying to understand why he was so adamant that when I said, I think my insulin ( insuman comb 25 100 units for injection solo star(sanofi) was not working he just refused to talk about it and said it was like all the rest. As for what was happening at my back end, he just recommended that my GP do something. The letter with that in got to my door but not my GP's practice. They then photocopied it and lost it and nothing happened. It has got better in time but not the same as I was. I was then put on Dapagliflozin and told to lose a lot of weight i.e. two stone over a year or so. I had such reaction to the side effects of having to go to wee all the time, it built up over time and had to wait until next appointment which was 6 months.
I was taken off Dapagliflozin and left with no other add-in. My FMS was not really understood had to explain all over again and my GP had to ask for the report as I turned up at the surgery complaining my blood sugar was between 16-24 most of the time. On top of this I have had my recent eye test and they told me my eyes have been damaged. I now need glasses for everything which I did not before, I am 46.
Another weird warning flag was the pharmacist last time I picked up my drugs. Asked me how much insuman comb 25 100 units for injection solo star, I was on. I told her I was on 148 units a day and she told me she was concerned as that was a large amount. I said I was told by my diabetic nurse that it was common insulin and the pharmacist said she had never heard of it before. Even the pharmacist assistant whose grandfather takes it said that he has only 10 units and the hospital asked her to bring it in as they do not stock it. I am just coming up to another consultant appointment angry and very apprehensive because they are not listening and I am getting damaged in the process. To be honest, I am not sure what to do even. As a side note I am very nice patient as my mum is an ex-nurse and I say please and thank everyone for their help. Also, to give you an idea my FMS makes me sleep 1-4 times a day. I have pain in most of my body head to toe. I have a problem with my rib muscles contracting. Fibro fog on the worse days. So putting a hoover around my small front room 14ftx8 can put me in bed for a day or two or at least make me sleep and ache for a while, to give you an idea.
So my questions are….
1. Does anyone here have experience of insuman comb 25 (good or bad)?
2. Can anyone put me in the right direction or explain my rights to seeing another consultant?
3. My diabetic nurse has been so bad I really loath to see her, what would you do in my shoes ?
Thank you just for reading and any help you give.
All the best Stefan
