Cfsandme.co.uk

Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
CAMBRIDGESHIRE AND PETERBOROUGH
CHRONIC FATIGUE SYNDROME/ME SERVICE
PRE – CLINIC QUESTIONNAIRE
PLEASE COMPLETE DETAILS IN CAPITALS:
Mr Paul Daniel Carpenter
ADDRESS: Seven Acres, Gull Drove, Guyhirn, Wisbech,
Cambridgeshire PE13 4BH
01945 450807
Wednesday 1st November 2006
Bold Blue How I feel Now
Bold Red differences Six weeks ago
Before attending the clinic, please complete the questionnaire. It might
be useful to have a partner or friend to help you. Question 1 allows you
to describe how the illness started. The other questions give you a
choice of answers and a space to add comments if you wish. Please tick
the response which fits best. There may be more than one response per
question.
There is currently quite a lengthy waiting list within the CFS/ME service;
it is therefore, most important that you return this questionnaire to us
with the shortest possible delay, so that you can be seen as soon as
possible. Until we receive this questionnaire we will not be able to issue you
with an appointment.
If you are unsure of how to answer a question or you do not understand
a question, please telephone Sarah ###### on 01733 ###### the service
Administrator. If however she is unable do deal with your query it will be
given to Dr. Mitchell or one of the team to deal with.
Do not feel obliged to fill up all the space left for your comments. If you
do want to write more please do so on a separate sheet of paper.
Many Thanks.
Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
Could you tell us how the illness started and progress, i.e. getting
better/getting worse/about the same. Please include the date of onset if
possible. Did you have a ‘virus’ at the start of the illness and were you
under any stress? Are you still at work or when did you stop work?
Write your answer in the space below:
My illness started in November 1987 aged 23 with a sore throat and flu
symptoms this lasted approximately 4 weeks and I continued working
during this time.
I was working as a Self-employed IT Contractor in the City of London my
work was both physically and mentally challenging as it included
responsibility for planning and executing office moves at weekend and
evenings involving upto 40 people and all their IT equipment.
The flu symptoms and sore throat subsided and I became increasingly
fatigued and unable to work with a general all over headache and
sensitivity to light and sound.
I had an ache in my lower back about the kidney area and other muscle
and joint pains which moved around I was drinking a lot of fluid and
basically stayed in bed for about 6 months, with occasional good days
when I was able to go out for short periods.
Memory and concentration were completely gone I often found myself
staring into space and unable to remember what I was about to do half
way up or down the stairs.
Occasionally when really bad I was unable to move my left hand and
arm and had a very strange feeling where my bones felt like rusty
metal/barbed wire and my body felt like jelly or dough covering the rusty
metal this would last anything from 10 minutes to a couple of hours.
I saw the doctor on a regular basis but was considered to be suffering
with depression and given anti-depressants which had no effect.
In May 88 I changed doctors and was given a complete examination at
which point a lump was detected in my neck and hodgekinsons was
suspected – my parents arranged a private appointment and I was
admitted to hospital within 2 days to have the lump removed.
It was found to be a reactive lymph node and assumed to be as a result
of a virus possibly Glangular fever.
Within 6 weeks of this operation I was back at work initially part-time
and full time within 4 weeks.
Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
Approximately a year later June 89 it started again in a similar way but
no lumps were found and again I was unable to work and all the
symptoms returned – at that time yuppie flu was the term used and I
fitted this as an IT Contractor working in the City of London.
After about six months of getting nowhere either with the symptoms or
the medical profession my parents arranged a private appointment with
an acupuncturist and homoeopathist after 3 months of treatment I was
able to return to part time work and subsequently full time.
Since this time I have had periods during colds where all the symptoms
return but generally this has not lasted longer than a month or 6 weeks
but has prevented me from working during those periods.
Also when tied or stressed the symptoms do return from time to time
approximately 2-4 days every 1-2 months.
The last major episode with all the symptoms returning started in
October 2004 and has lasted 2 Years, until about 6 weeks ago.
At its most severe it starts with overheating I cannot speak, I cannot
think and I have uncontrollable shaking and twitching I cannot move as I
am unable to cope with my surroundings, external stimuli and
completely disoriented this lasts from 5 – 20 minutes and is a new
symptom of the latest episode with the last occurrence about 4 months
ago.
************************************************************************
About 6 weeks ago I decided to look at the major problem logically i.e.
lack of energy the malfunctioning of the bodies aerobic energy system
and researched into what could help.
I came across 2 amino acid supplements one of which is given to
patients in French hospitals to aid recovery after operations (L Ornithine
Alpha Ketoglutarate) the other recommended for athletes and body
builders to aid exercising and recovery (L Glutamine)
I have now been taking these supplements for 6 weeks and am almost
what I would consider back to normal!
I am currently taking 3 times daily in fruit juice: -
A mixture of L Glutamine & L Ornithine Alpha Ketoglutarate 3g
and so far haven't noticed any side effects - apart from what I would
consider near normal energy levels.
If I am extremely busy such as a whole day of DIY (Proper DIY -
Plastering, cementing, Tiling, Plumbing, Coving, Painting - any one of
Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
which I was previously unable to do without at least a weeks rest before
and after and then only for a couple of hours) I have found that an
additional dose at night helps my energy levels for the next day.
QUESTION 2 – Diagnostic Criteria
Please tick the answer which fits your symptoms Memory and Concentration
Write your comments in the space provided:
Struggle to find words in normal speech, slowness in speech and a
reduction in conversation, can’t remember what I was about to do –
loose complete days where I don’t remember what I did – probably
asleep.
Please complete the following by adding the length of your concentration span, i.e. how long does it take you to get mentally fatigued: My concentration span on a good day is ___60____ minutes.
My concentration span on a bad day is ___0____ minutes.
Write your comments in the space provided: Do you have recurrent sore throats?
Write your comments in the space provided:
To the point where my voice became croaky and lower for 3 months
about 6 months ago.
Do you have tender or enlarged glands (lymph nodes) in the ;
Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
SomeTimes
Do you have muscle pain?
SomeTimes
If muscle pain is present where is it most? Write your comments in the space provided Around the kidneys/lower back area.
Do you have joint pains?
If yes, are the joints stiff in the morning? Did you have joint pain before this illness? ** Please distinguish between muscle pain and joint pain if possible**
Write your comments in the space provided
The muscle pain is like mild cramp like I’ve been exercising too much.
Joint pain is probably the wrong description it’s neuropathic pain more
nerve based and primarily in the hands, fingers and forearm.
Occasionally right in the funny bone and only my left elbow, very severe
lasts from 10 to 30 minutes.
Feet are very stiff and moderately painful in the mornings for about 30
minutes.
Pains move about and can occur anywhere including eyes, nose, ears,
face – just about anywhere!
I still get some pains but they are much reduced in number and level
and 30mg of Amitriptyline normally helps within about half an hour.
Sleep pattern – are you sleeping normally?
If the answer is no, which best fits what is wrong: Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
Constant waking during the nightWaking up earlyI wake up feeling as tired as when I went to bed Are you taking sleeping tablets, if so what are they called? Sleeping for extended periods of time as much as 16hours without
waking and difficult to rouse.
Headache- do you suffer from headaches?
Did you have regular headaches before you came ill? Write your comments in the space provided
Migraine once about 6 Months ago April 06 – Broken vision left eye
headache over left eye then moved to back of head – repeatedly sick
and disorientated lasted one day and night complete fine next day.
If you have new headaches, i.e. starting with this illness and
different from previous headaches, where do they occur?
Please describe
All of the above no particular pattern dull pain most days don’t take too
much notice. Sometimes tense when back of head and neck.
Please describe
Back of head and neck are tense elsewhere dull ache –some of this
could be attributed to my use of the computer.
If no relief, can you list the medication tried so far Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
Write your comments in the space provided
Paracetamol, Codene, Anadin, Aspro Clear used to help.
Can you describe what happens if you push yourself too hard, i.e.
how you feel and which symptoms are worse?
Write your comments in the space provided
At the moment no real problems.
Rapidly become exhausted and need to rest – increase in pains –
disoriented and totally indecisive – if out find it difficult to cope with
bright lights supermarkets particularly difficult, colours too bright
particularly green makes me feel sick – get shakes and twitches –
overheat – takes several days in bed to recover. Cannot cope with
objects moving across vision left to right or vice versa – feel sick if in
car and look out side window objects blur unable to focus.
QUESTION 3 – Other Symptoms
Individuals with chronic fatigue/ ME often have a wide range of symptoms, some of these are mentioned below.
Do you have a problem with:
Has there been a change in how your bowels work?
If yes, please describe what has happened Write your comments in the space provided Do you have a problem
Write your comments in the space provided Do you have a problem with temperature control?
- Cold hands and feet (not previously present) E.g. hot in a cold room or cold in a hot room Write your comments in the space provided
Mostly too hot especially when active very easy to overheat regardless
Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
of external temperature - always warm hands.
When bad the opposite in that regardless external temperature feel cold
and shivery going to bed in tracksuit, socks, jumper and even a woolly
hat.
Please add any other symptoms that worry you. Describe them in the space provided below.
QUESTION 4 – Activity Levels
Please select one of these two statements: Please describe a bad day, i.e. what time do you get up, can you
wash/shower, how do you feel afterwards, and what can you do during the
day. Please give as much detail as possible for each period of the day. BAD
DAY if you answered 4a or AVERAGE DAY if you have answered 4b.
Morning
Generally asleep only get up to use toilet and takes several
stages/attempts to get there – Making decision – sitting up and getting
half out of bed – standing and walking there – toileting – getting back to
bed collapse on bed – get back into bed.
May get up to eat again in stages.
Afternoon
Same as morning.
Evening
May be able to get up and watch TV for a hour then back to bed and
sleep.
Loose structure difference between day and night. Might sleep all day
and be able to briefly get up at night, whole days blur together.
Please describe a better or good day in the same was as above. BETTER
DAY. (If your days are much the same there is no need to fill in this section)
On a good day I can be almost normal get up about 7 eat breakfast have
a shower. Go downstairs and work on the computer or do some light
DIY.
Sometimes it starts off ok and then after the shower I’m completely worn
out and collapse on the bed and fall asleep for 2 hours then I can
continue but slower than I started.
Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
Afternoon
Eat lunch 12:30 – 13:00 – generally quite tired after this and sleep for
about 2 hours. Then probably watch TV or use computer.
Evening
Eat about 18:30 again can be tired and sometime sleep for what I think is
an hour an hour (actually 2-3 or more) then watch TV and go to bed
about 22:30.
How many good days do you get in a week (0, 1, 2, 3, 4, 5, 6, 7) How many bad days do you get in a week (0, 1, 2, 3, 4, 5, 6, 7) If there is a different pattern please describe below:
Sometimes I can have 5 Good Days but this is generally followed by 10
or so bad days.
Can you describe, in terms of activity, an average working day before you
became ill, i.e. how many hours at work, including work in the home, time
spent on family duties, time spent on hobbies/sport etc.
Write your comments in the space provided
Very active worked 10-12 hours including travelling then hobbies and
other activities including DIY and farming walking dogs etc
Can you describe what you were like before you became ill, e.g. life and soul of the party, bouncy, sporty, outward going, always a worrier etc? Often a friend or partner may be able to prompt you with this question.
Write your comments in the space provided
Very active and outward going. Enthusiastic, creative, inventive, strong
conversationalist – keen to be involved in local community.
Yes
Miles
If yes, can you describe the circumstances, e.g. in the house, just going shopping etc.
Write your comments in the space provided Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
QUESTION 5 – Medication
Can you list the names and doses of the tablets you are taking at present (or attach a list supplied by your own GP?) Amitriptyline started on 10mg increased to 30mg now only occasionally
when pains return. Twice in last 14 days.
Started on 10mg and gradually increased to 30mg Amitriptyline
everyday for last 8 Months until 6 weeks ago late September.
QUESTION 6 – Mood
In the past have you ever been depressed? If yes, describe when, and what were the circumstances, i.e. post natal, relationship problems, out of the blue, etc.
Write comments in the space provided
Pissed off, Frustrated, annoyed, irritated, irritable and definitely irritating
but never depressed.
If you had medication did it give you side effects? Write your comments in the space provided
Have experienced negative thoughts during extended periods of illness.
Has your GP tried anti depressive medication in this If yes what were they and what was the medication called? Write your comments in the space provided Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
Amitriptyline 10-30mg
Have you ever suffered from anxiety in the past? If yes, can you describe the symptoms, e.g. palpitation, irritable, over breathing, sweating etc? Write your comments in the space provided QUESTION 7
Can you please respond to the following set of statements? This will give some idea how you are reacting to your illness. The response to any chronic illness such as chronic fatigue syndrome/ME can be very important in putting together a treatment package to help you stabilise and overcome the problem.
Please try and complete question 7 in ‘one sitting’ if possible, do not take too long over your replies as your immediate reaction is probably correct. Just tick the response you thinks fits best.
Only one response per statement please.
I get a sort of frightened feeling as if something awful is about to happen I can laugh and see the funny side of things Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
I get a sort of frightened feeling like ‘butterflies’ in the stomach I feel restless as if I have to be on the move I can enjoy a good book or radio or television programme Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
QUESTION 8 – Past medical history
What physical illness, e.g. asthma have you had in the past. Have you had any operations? Write your comments in the space provided
Two operations on my ear which was perforated with discharge and
infection in bone behind ear at age 9/10/11.
Part of Cartilage removed left knee aged 16.
Lymph Node removed from neck aged 23.
3 Wisdom teeth removed Feb 99 aged 35.
Have you ever had an illness, similar to this one after a virus or when you have been stressed? If yes, please state when and where etc.
Write your comments in the space provided
All symptoms return when I am stressed or have any other illness
mainly colds/flu.
QUESTION 9 – Your view of the illness
Do you think you have chronic fatigue syndrome/ME? Do you feel you may have some other illness as yet Write your comments in the space provided
After over twenty years I just want this to stop so I can get on with all
the things I want or need to do!!!!!
Please answer one of the following questions Do you feel that this illness is physical? Do you think the illness is a mental problem? Please Note, for Clarity -This is my Medical information and I Paul Carpenter have given
permission for it to be published on my website (Obviously!), this statement and the removal of logos were made at the request of the Medical Director of Peterborough NHS
Do you think it might be a mixture of both physical and Please feel free to add any thoughts you might have on the last three
questions
Although this illness has symptoms which affect my mental functioning
I am convinced it is entire physically based/caused.
QUESTION 10 – What would you like us to do most?
Advice on the best way of managing the illness Write your comments in the space provided
I feel the Amino Acid supplements I’m currently taking are working and
worth further clinical investigation.
Find a cure or at least an effective treatment.
We should like to thank you for completing this questionnaire. We
realise it may have been very exhausting and may have taken some
time. It will however enable us to focus more precisely on the nature of
your problems and the possible way round them when we meet in the
clinic.
28 August 2002ME directory: questionnaire

Source: http://cfsandme.co.uk/docs/NHS-PCQ.pdf