Have got an appointment tomorrow at Guys to see Dr Aslam she is Professor Davies Registrar. I have seen her once before in March and like others who go to the support group at Guys my main complaint is the length of time between one appointment and another.
Here are my notes I am taking to regarding the things I want to discuss with her but it is rather lengthy so hope will be able to say it all. I always make notes before I go for any appointment in case I get an attack of fibro fog and can't speak.
Am giving ansers as given as well as have now seen doc but not docotr Aslam a new registrar Sarah Medley
Q. Clonazepan Last saw you in March and was given clonazepan quarter then half, unable to tolerate half went back to quarter but didn't do much so stopped it. Then am left till now before I see you again
A Could ask my doctor to write to say this and they could suggest something else.
Q Pain Clinic am not willing to go to this at St Thomas's have been to many courses and can't see what I would achieve having had bad experience with Dr Duncan,
A Dr Medley had no knowledge of this complaint iof mine but agreed it would bot be suitable for me.
Q fibro pain clinic Is there going ot be a dedicated fibro pain course? none planned at present but planting a seed.
Q plantar fasciitus and TMJ Have had plantar fasciitus since April, had physio and acupuncture which had bad reaction to leading to TMJ pain. Not sleeping, pain not controlled and fatigued. Taking paracetemol, acupan, st johns wort, valerian. What else can you offer?
A Have tried most things available try going back to cymbalta to see if it helps with sleep.
Q vitamin D can I try vitamin D for pain relief or B12?
A have to have blood test and then it can be given if deficient. Given blood test at hospital wait 3 weeks for result.
Q NHS and Private as it is so long between appointments can you go to Prof Davies private clinic as well in between appointments (am hoping Benenden will pay for this)?
A Yes you can do whatever you like to help alleviate your symptoms.
Q DLA have received DLA but only for two years although was given it for three before. Is it possible to get a letter in support of claim to see if can get it for longer without having to refill form?
A Yes will send you a letter to whom it may concern. Have recieved this letter aand will forward it to #DLA to see if can get it extended or no.
Showing posts with label flare ups. Show all posts
Showing posts with label flare ups. Show all posts
Monday, 7 December 2009
Sunday, 6 December 2009
Apology
I'm so sorry that I have not posted for a while. I know how maddening it can be if you follow a blog and then you don't get any updates for a while. Unfortunately just haven't really been up to it. Have been able to keep up the 101 blog because it doesn't need as much thought as this one, its more like a diary of what I am doing but will try to blog on this one much more now.
Tuesday, 21 July 2009
Hello and sorry
I don't know why but have just got out of the habit of posting since I got back from Turkey. I guess it was having the six week break and unfortunately since coming back have not been great but I will get back into the habit of posting again I promise.
Will post again tomorrow with hopefully some more interesting topics
Will post again tomorrow with hopefully some more interesting topics
Monday, 11 May 2009
Flare up -it was expected
I knew it would happen and after spending a week sitting at the hospital trying to offer support it all caught up with me last Friday and I had no choice but to go to bed and stay there.
Even though I knew it would happen it was very hard to cope with the feelings of being useless because of this damn illness but you just have to get yourself over that or it will only bring you down more.
The pain and tiredness have been intense but luckily my DH has noticed and made sure I rested well he ordered me home and to bed. He has been bringing me breakfast in bed complete with tablets and coming home lunchtime to make me lunch if he can.
On top of it all by trying to run into the hospital I seem to now also have plantar fasciaitus which is very painful and has meant I have had to use a stick for the last few days which i find quite cumbersome and heavy to use. The only treatment is the medication I am already taking so am just resting being kind to myself. I think I did a good job while I could and am trying to help out as much as I can but not so much hands on. Just allowing other people who have more energy to help instead of me.
Taking care of myself first now like on an aeroplane you can't look after others until you look after yourself.
Be gentle to yourseves if you need it love and gentle hugs
Even though I knew it would happen it was very hard to cope with the feelings of being useless because of this damn illness but you just have to get yourself over that or it will only bring you down more.
The pain and tiredness have been intense but luckily my DH has noticed and made sure I rested well he ordered me home and to bed. He has been bringing me breakfast in bed complete with tablets and coming home lunchtime to make me lunch if he can.
On top of it all by trying to run into the hospital I seem to now also have plantar fasciaitus which is very painful and has meant I have had to use a stick for the last few days which i find quite cumbersome and heavy to use. The only treatment is the medication I am already taking so am just resting being kind to myself. I think I did a good job while I could and am trying to help out as much as I can but not so much hands on. Just allowing other people who have more energy to help instead of me.
Taking care of myself first now like on an aeroplane you can't look after others until you look after yourself.
Be gentle to yourseves if you need it love and gentle hugs
Friday, 20 March 2009
Its a Right Pain
I'm not sure why I keep getting an odd pain in my face which is very disconcerting. Unfortunately I find it very hard to deal with and have to stop myself from getting in a panic when it comes on.
Am worrying now in case it comes on tomorrow when I am at my Mum's 95th birthday party.
So am planning how to deal with it in case it does happen.
I am going to make sure I have the right medication with me need to go for a stronger one in the first place because if go with paracetamol can't then take co-codamol. Don't take these often becuase of side effect of constipation. Make sure have extra medication with me.
Have been looking for microwave heat pack that I made with a tube of material and rice but Ellen has promised to make me one if still can't find it by the morning. I have just remembered that they sell them in the chemisr round the corner so I can buy one if necesssary. I find heat is the best form of pain relief for this pain.
I am going to take a big scarf to wrap around me for the journey home and am going to make sure I rest before I go tomorrow and also that I have a really good rest now.
So my friends I am off to bed with more medication and an electric heat wrap and tomorrow will be better because I've planned for it to be fine and whatever happens I will cope with it.
goodnight and gentle hugs
Am worrying now in case it comes on tomorrow when I am at my Mum's 95th birthday party.
So am planning how to deal with it in case it does happen.
I am going to make sure I have the right medication with me need to go for a stronger one in the first place because if go with paracetamol can't then take co-codamol. Don't take these often becuase of side effect of constipation. Make sure have extra medication with me.
Have been looking for microwave heat pack that I made with a tube of material and rice but Ellen has promised to make me one if still can't find it by the morning. I have just remembered that they sell them in the chemisr round the corner so I can buy one if necesssary. I find heat is the best form of pain relief for this pain.
I am going to take a big scarf to wrap around me for the journey home and am going to make sure I rest before I go tomorrow and also that I have a really good rest now.
So my friends I am off to bed with more medication and an electric heat wrap and tomorrow will be better because I've planned for it to be fine and whatever happens I will cope with it.
goodnight and gentle hugs
Saturday, 14 March 2009
Flare-Ups
Had a terrible night Wednesday night couldn't sleep for pain in face had taken all medication possible and then just got up to come downstairs to be alone to pace.
Felt very bad and not consciencly deciding just trying to report how I dealt with it. Not saying this is a good way but only what happened. Had a good cry for ten or so minutes and a bit of a rant poor me, why me why won't it stop to myself. Then I gave my nose a good blow told myself to STOP put on the telly and a heating pack for my face and laid down on the sofa with the dog for a while. Paced up and down for a while telling myself well you've had this before you managed. It will go away had a play on my ipod still can't get good score made a cup of decaf tea and waited for next time tablets due. Eventually dozed off on sofa.
Then I went back to bed reviewed available tablets decided to have breakfast and then take tablets that I know will make me sleep.
When feel better think about is this a new pain? is it dental? do I need to see doctor?
Have had quite a few bad days in a row so will think about logging days to see if can work out cause but also accept there may be no cause. But am glad that day is over
Felt very bad and not consciencly deciding just trying to report how I dealt with it. Not saying this is a good way but only what happened. Had a good cry for ten or so minutes and a bit of a rant poor me, why me why won't it stop to myself. Then I gave my nose a good blow told myself to STOP put on the telly and a heating pack for my face and laid down on the sofa with the dog for a while. Paced up and down for a while telling myself well you've had this before you managed. It will go away had a play on my ipod still can't get good score made a cup of decaf tea and waited for next time tablets due. Eventually dozed off on sofa.
Then I went back to bed reviewed available tablets decided to have breakfast and then take tablets that I know will make me sleep.
When feel better think about is this a new pain? is it dental? do I need to see doctor?
Have had quite a few bad days in a row so will think about logging days to see if can work out cause but also accept there may be no cause. But am glad that day is over
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