Hospital Appointment TMJ

Had a hospital appointment yesterday for the pain in my jaw at St Helier.
Had an xray of my face and then saw consultant. Told not much they can do eat soft food, no chewing, no singing, no eating apples, try to stop jaws clicking and see if have any habit like grinding teeth or clenching jaw. Since she said that have become aware of clenching my jaw a lot but wasn't aware of it before. Have to heat up jaw each night with heat pack whether it is painful or not. It is more painful now because of all the manipulation. also have to go to dentist to sort out sharp tooth as nurse was concerned it could cause tongue problems.
Have fear of dentist but have made an appointment for January.

Another thing that they can't seem to do much about it is enough to make you get vety fed up but am trying hard not to let it happen and to stay up.

Feeling low after hospital visit

I felt very low after this last hospital appointment as felt was basically told you have tried everything and there is nothing left to try. Had a big bout of crying when I got home as felt totally hopeless which is not how I usually feel. Was very tired from the journey to the hospital on the tube and felt that it was a waste of time. I try hard to go for acceptance with hope for the future, but have had such a low few weeks spent mostly in bed that had a hard time keeping myself up.

Within a few days had talked myself round to feeling better as
a) need to keep in touch with hospital for when something new does come along and also for support for DLA if nothing else.

b)Will explore trying to go to private clinic in January if Benenden will pay for it.
c)Went out with some friends for evening, didn't feel like going but felt better when I went as they are very cheery people- so thanks Diane, Phillipa, Sarah,Lisa and Fiona.
d) am no worse off than before I went, am always worse in winter and it will pass soon enough and I will feel better.

Medical Appointment

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.

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.

CFIDS August topic- my response

I think I did have a major problem with this when I was younger always wanting to be the best, to do everything well and perfectly.

I believe it was mostly from coming from such a huge family I was always looking for ways to stand out to get noticed and this carried on into my work life and own family life wanting to be praised- usually more than once for my efforts.

Now the difficulty is doing much at all that can get noticed, I have had counselling and am aware of my need that I honestly think no-one can in reality fill except me.

So I am no longer working so that stressor has now gone and I set my own targets and am happy if I can fulfill them in any way and do not stress if I don't. That is I set targets that I can acheive and then I am happy.

My husband is aware of my need for praise and if he ever sends me a text saying well done like he did when I bought and furnished our house in Turkey- I keep it so that I get look at it more than once and get my praise fix that way.

love and hugs

Linda

CFIDS Monthly Topic- Unhealthy Perfectionism

There is a lot of pressure in our society to excel. It can start withgetting top grades in school or even earlier with parental expectations thattheir baby start walking and talking before others the same age. Soon weprogram ourselves that we should always do "the very best job we can." In this pursuit of perfection, we can wind up putting achievement before ourown welfare. Athletes are lauded for continuing in a competition even wheninjured, and employees are encouraged to do more and work longer hours.When you really stop to think about it, "just do your best" is a draconianmandate.Our topic this month will be recognizing and combating perfectionism. Onereason many of us fell into a push/crash cycle was because we let the"shoulds" drive us. We pushed ourselves unmercifully to accomplish tasks aswe thought they should be done, putting the task ahead of our own health.

So our topic this month is recognizing our unhealthy perfectionism when we are tempted to push ourselves too hard, and discussing alternate strategies.

New Symptoms -go to doctor

I think I wished it on myself but with all this talk about swine flu I stupidly said I never get colds and I never get headaches. Famous last words.

Last week I started sneezing had a bit of a tickle but no temperature so not swine flu. Not helped by my friend following me round the shop saying swine flu every time I sneezed- I was sure someone was going to bash me for daring to come out with sneezing.

Have become obseessed with washing my hands each time I blow my nose not always convenient and then found myself with a headache for the last few days and a hoorible taste smell up my nose and in my mouth. Was convinced I had bad breath but was assured that I didn't.

Decided to go to doctor as maybe you are someone that gets headaches with fibro - in which case - I am sorry that you do- but I don't so it is an unusual symptom for me.

Felt a bit of a fraud in surgery with just a headache and a bad smell but was told that I had sinusitis so was very glad that I went.

It's just a lesson to learn to always go with new symptoms as now I will get some relief and wished I had gone earlier.