Tuesday, 29 March 2011

Living with Fibromyalgia, IIH and Chiari Malformation

Living with these illness'es is tough to say the least, the Fibromyalgia (fibro) is  chronic pain ,it affects all the muscles in the body . IIH (Idopahtic Intercrainial Hypertension) this is where there is pressure on the brain,which cause's chronic headache's feels like your head is about to burst, ringing/whooshing/hear your own heart beat in your ears. and Chiari Malformation this is where your brain slips down the back of your neck and can press on your spinal coloumn there are a lot of syptoms with this including chronic headaches,pain in neck/shoulders/back,tremours in arms and legs, loss of balance, memory loss,ect ..... please see below for a list of syptoms of all these conditions.


http://www.ukfibromyalgia.com/

Fibromyalgia is a chronic condition that causes pain, stiffness, and tenderness of the muscles, tendons, and joints. Fibromyalgia is also characterized by restless sleep, awakening feeling tired, chronic fatigue, anxiety, depression, and disturbances in bowel function. Fibromyalgia is sometimes referred to as fibromyalgia syndrome and abbreviated FMS.While fibromyalgia is one of the most common diseases affecting the muscles, its cause is currently unknown. The painful tissues involved are not accompanied by tissue inflammation. Therefore, despite potentially disabling body pain, patients with fibromyalgia do not develop body damage or deformity. Fibromyalgia also does not cause damage to internal body organs. In this sense, fibromyalgia is different from many other rheumatic conditions.


Widespread PainMorning StiffnessFatigueVision Problems
NauseaSleep DisordersUrinary and Pelvic ProblemsWeight Gain
DizzinessChronic HeadachesCold Symptoms
Temperomandibular Joint
Dysfunction Syndrome
Multiple Chemical
Sensitivity Syndromes
"Fibrofog": Cognitive
or Memory Impairment
Skin ComplaintsChest SymptomsAnxiety
DepressionDysmenorrheaAggravating Factors
Myofascial Pain
Syndrome
Muscle Twitches
and Weakness
Memory Loss:
Is it Real?
Weather ChangesThe Menstrual CycleTroubles Breathing?


IIH Idiopathic Intercrainial Hypertension.
 http://www.iih.org.uk/

Intracranial Hypertension is a condition in which the body either produces too much cerebrospinal fluid pressure or doesn't absorb it well, resulting in increased cerebrospinal fluid pressure.

It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain, but the reason for the buildup or poor absorption are also unknown. The disorder is most common in women between the ages of 20 and 50. Being overweight seems to be a a possible contributing factor, but IH/PTC should not be ruled out based only on body weight, age, or gender.

Symptoms of IIH

The most common symptoms of IIH are:
 severe headache,*
 papilloedema,
temporary loss of vision, *
transient visual obscurations (blurred vision), *
double vision and decreased visual acuity, *
pulsatile tinnitus ("whooshing noise" in the ears in time with the pulse),*
 and pain behind the eye and with eye movement.*
Other symptoms reported by people with IIH include:
nausea,*
 vomiting,
fatigue, *
photophobia (dislike of and pain caused by bright light), *
problems with balance and spatial awareness,*
 aphasia (difficulty using or understanding words), *
disorientation, loss of short-term memory (sometimes also long-term memory loss),*
confusion,*
 feeling 'spaced out',
and lack of depth perception (for example judging the depth of stairs, steps, and curbs can be a problem)*. People with IIH may find unfamiliar (and even familiar) places, and traffic, confusing and overwhelming.*

Arnold chiari malformation.
 http://www.ninds.nih.gov/disorders/chiari/chiari.htm

Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance.  Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal).  When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation.
CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal.  The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF) — the clear liquid that surrounds and cushions the brain and spinal cord — to and from the brain.

  • Headache (esp. if daily or at lower back of head)*
  • Painful tension in neck *
  • Fatigue *
  • Migraines*
  • Dizziness *
  • Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus*
  • Tingling / numbness in the extremeties *
  • General imbalance / clumsiness *
  • Memory loss*
  • Restricted movement *
  • Intolerance to bright light / difficulty adjusting to light change *
  • Vertigo from position change or sudden standing *
  • Difficulty walking on uneven ground / feeling ground under feet *
  • Poor / degraded motor skills *
  • Difficulty driving
  • Difficulty negotiating steps
  • Pressure / pain in the neck *
  • Pressure / pain behind the eyes (soreness in the eyeballs) *
  • Back pain *
  • Neck spasms *
  • Insomnia
  • Ringing in ears (like the tone heard in a hearing test)*
  • Swaying *
  • Pain when changing position *
  • Tingling / crawling feeling on scalp *
  • Intolerance to loud / confusing sounds *
  • Decreased sensation to touch in extremeties *
  • Decreased sensitivity to temperature *
  • Pain & tension along ear / eye / jawline *
  • Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes *
  • Drooling
  • Spontaneous vertigo *
  • Hand tremors*
  • Poor blood circulation / cold hands & feet*
  • Sinus / mucous problems *
  • Sleep apnea *
  • Decreased muscle tone
  • Pressure in ears / ears feel stopped up *
  • Nausea *
  • Difficulty reading / focusing on text *
  • Depth perception problems *
  • Burning sensation in extremeties / shoulder blades *
  • Menstrual problems / severe cramping during period *
  • Fluid-like sound in ears (like water running) *
  • Loss of sexual interest / lack of sensation in pelvic area *
  • Pulling sensation while sitting / standing
  • Intense itchiness w/profuse sweating
  • Slurred speech*
  • Gag reflex problems / lack of gag reflex *
  • Pressure / tightness in chest *
  • Loss of bladder control
  • Frequent urination *
  • Dehydration / excessive thirst *
  • Electric like burning sensations*
  • Unequal pupil size
  • Loss of taste *
  • Popping / cracking sounds in neck or upper back when stretching *
  • Dizziness *
  • Loss of smell / problems with sense of smell *
  • Dry skin and lips *
  • Sudden / abrupt changes in blood pressure due to awkward position of head
  • Hiccups associated with drinking carbonated beverages *
  • Skin problems

Other: migraines, oscillopsia, lump in throat, colour blindness, albinism, visual floaters, astymosism, thinning hair, hear heartbeat in ears, throat closes when lying flat, vomit in sleep, swollen face, low body temperature, low blood pressure, legs feel heavy, "strangling" feeling, "floating" sensation, thickening of finger joints.

all underlined above are symptoms i have




here are some of the sypmtoms i live with evey day:/ including ones marked with a star above..

tinglin - in fingers, feet and somtimes in my arms
rollin / jumpin eyes
shakin limbs
stiffness / numbness in arms and legs
jerkin
headaches to the point where my head feels as though its going to explode
eye aches
neck aches
cant walk unadied as balance is non existant
dizzy
neausea
blurry
slurry words
back trouble
light headed
VERY senitive eyes to any form of bright light
achy joints - knees, wrist, ankles, all over body
more emotional
balance affected
memory useless , in fact almost non exsitant
very forgetful
no concentration
exploding head ache when i cough, snezze.
dizzy when i bend over.
get confused and nervous when in strange and sometimes familiar places
also noise : loud music/tv/ lots of people talking get very fstrated and cannot concentrate on anything....sensory overload.
Sleep............... have to have a nap most days. constantley tired, no matter how much sleep i get
this is just a few symptoms that i can think of, off the top of my head.

I have got to the point where i dont know what syptoms go with which  condition !!!!! as a lot of them overlap.

Sunday, 27 March 2011

£'s 4 lb's Challenge starts Monday 28th March 2011

Tomorrow is the start of the £'s 4 lb's Challenge :


These are my Before Photo's Above ......................................................................................

I have Alraedy Lost 26.5 lb's at Weight Watchers, but seem to have hit a brick wall ! and i have been struggling to lose the 1.5 lb's to hit the 2 stone lost target.. Hopefully this £'s 4 lb's Challenge will give me the motivation to carry on......... OH !!!!! and not forgetting the constant support from my IIH family xx
I have 29 points to use daily and 49 points to use through the week if needed:
WEEK ONE::
Day 1 : (28th march )::: a good start to the day thumping head and shakes but fully motivated for the challenge ahead :-)    
Cherrio's for breakfast,with skimmed milk 4
Weight watchers tom soup and garlic and herb croutons for lunch 4
sugar free jelly and pineapple 0
wight watchers meal salmon mornay 8
 home made potato wedges (garlic and herb flavour) 4
 baked leeks and cheese .7
Today i used 27 out of 29 points
and didnt feel hungry at all ,

Day 2 :(29th march):: still feeling Yuk today !!
frosties for brekkie today with skimmed milk   4
brown bread with cheese and onion  6
**bumped my head as getting into mothers car knocked me sick and light headed, ** really bad head went to bed at 7.00pm.

today i used 10 points out of 29

Day 3 (30th march_)
ill in bed got up at 2.00pm
Frosties 3
milk skimmed 1
boiled rice     6
chicken,mushrooms,onions,pineapple  sweet'n'sour sauce 6

today i used 16 out of 29 points

day 4  (31st march)

2 x weetabix 3
milk skimmed 1
chicken, mushrooms,onions and pineapple in sweet'n'sour sauce 6
sweet'n sour chicken and rice 7
snacks:
2 x bars  2 x 2= 4
crisps      2

23 points used out of 29.

Day 5    (1st april)

Frosties 3
milk skimmed 1

ww soup 2
2x bread  2
bar          2
pork loin 8
pots 4
cabbage 0
carotts 0
 22 points used out of 29

Day 6  (2nd april)

frosties 3
milk skimmed 1

2x bead 2
cheese 4
onion 0
2x bars 4
pkt crips 2
orange 0
sugar free jelly 0

chiken breast 4 (served on a bed of roasted veg)
pots 4
cabbage 0
carrots 0
onions 0
2 x bars 4

28 points used out of 29

Day 7  (3rd april)
2x weetabix   3
milk skimmed 1

beef casserole   8
bar 2

cheese sarni  6
bar 2
orange 0
crisps 2

24 out of 29 points



Week 2
Day 1  mon 4th april

2 x weetabix  3
skimmed milk  1

2x bread 2
cheese 4
crisps 2
bar 2

beef stew 4
bar 2
fruit  0

20 used points out of 29

day2 tue 5th april

2x weetabix 3
skimmed milk 1

w/w crackers 1
ham  1
cheese 4
fruit 0
bar 2

naughty nite after getting weighed.......
weight loss at end of week 1 :  3.5 lb's


all points used

day 3 wed 6th april

2 x weetabix 3
skimmed milk 1

w/w crakers 1
cheese 4
crisps 2
bar 2

sausage x2 = 8
potatoes  4
green beans 0


25 points used out of 29

day 4 thur 7th april

2 x weetabix 3
skimmed milk 1

w/w crackers 1
cheese   4
crisps   2
bar 2

jacket pot    4
baked beans   3
cheese          4
pork        5


29 points used out of 29

day 5  friday 8th april

frosties 3
skimmed milk 1

WEDDING;
tomatoe and basil soup with wholemeal bread roll
turkey, roast potatoes, carrotts, cauliflour cheese, pig in blanket, slice of stuffing
3 x porfiteroles drizzled with chocolate and 4 strawberries.

1/4 cheese sarni, 1/4 turkey sarni, sausage roll, potatoe wedges, and dips

pass on how many points i used.

day 6  sat 9th april

frosties 3
skimmed milk 1

salad:  2 x slice ham,2 x  slice of chicken, 4
cheese 4
1 egg  2
light mayo  1

potatoe wedges  8
light mayo with mint  1

24 points used out of 29

day 7   sun 10th april

frosties 3
skimmed milk 1

pots 4
steak 8
sprouts 0

bread x2   4
cheese      4
bar     2
crisps  2

28 points used out of 29


DAY 1 mon 11th april

frosties   3
skimmed milk  1

w/w/ tom soup 2bread roll 3

w/w salmon and broccoli potatoe wedge 8
jacket pot  4
cheese 4

25 points out of 29 used

DAY 2  tue 12th april 
frosties  3
skimmed milk 1

fruit   0
tom soup w/w  2

naughty nite  !!!!!!!

weight loss/gain this week GAINED 1lb

DAY 3 wed 13th april

frosties  3
skimmed milk  1

w/w crackers   1
ham    1
fruit   0
bar 2

chicken, mushrooms onions  8
pineapple  0

ice cream   10

26 points out of 29 used

DAY 4 thur 14th april

frosties   3
skimmed milk  1

w/w crackers  1
ham      1
salad   0
fruit   0

pot wedges h/m  4
pork loin      5
beans       3

ice cream  10

28 points used out of 29

Day 5    fri 15th april

frosties  3
skimmed milk  1

crackers w/w  1
cheese    4
ham       1
crisps 2
bar 2

salad    5

19 points used out of 29

day 6 sat 16th april

frosties  3
skimmed  1

chicken, onions,pineapple sweet n sour sauce 7
fruit   0

fruit 0
crisps  2
bar    2

15 points used out of 29


day 7  sun 17th april

frosties  3
skimmed milk  1

fruit  0

ice cream 10

pork loin chop 5
pot wedges  8

27 points used out of 29

day 1  mon 18th april

frosties  3
skimmed milk  1

bread 4
cheese  4
crisps 2

pot wedges 4
w/w lasange 8

bar   2

28 points used out of 29

day 2 tue 19th april

Thursday, 24 March 2011

My IIH story..............................So Far

I would like to introduce my self my name is Tracey Beamer, i am married to the most wonderful man Stephen, with 4 lovley children ,Katie-jayne,21yrs,Gemma 19yrs, Joshua 17yrs and Chloe 13yrs....... my journey with IIH. well i will start at the begining will warn you its a bit of a long one :-(...... i have suffered with headaches for a long long time, was told it was migrane's no treatment given just carried on with it then in august i was suffering with general all over pain,mainly in my joints i went to see my gp who sent me for blood tests thinking it was arthiritis they all come back clear so she refered me to a rheumotoligist (excuse my spelling ) who diagnosed me with Fibromyalgia Sept 09, my headaches seem to be getting worse so went for a eye test to be sent straight to eye hospital as the pressure was really high behind my eyes, the doc i saw at the hospital was brilliant ( i would reccomend him to anyone) he sent me for a mri scan which i had in nov 09 two weeks before xmas 09 i had a phone call they wanted me to have an urgent mrv scan an lumber puncture before i went back to see my doc, this was a worrying time as it was obvious they had found somthing but i had no idea what!! anyways march 2010 arrived still not had this urgent scan or lp, but time had come for me to see my eye doc, unfortunatley i didnt see him i saw his understudy, who told me i had pressure on the brain!!!!!!! WHAT !!! he then asked if i had any questions me and hubby were so gobsmaked as we couldnt think what to say he said bye and sent us on or way........the next day i rang the eye doc's sec explained what had happened and she got me in to see him the next day... he then explained it all to me that i had iih and what would happen from then on he put me on diamox for my eyes,April 2010 the time had arrived for my mrv scan and lumber puncture at the QE had my scan then after waiting around for 4 hours i asked when i was having my lp one doctor said didnt think i could have one as it would be too dangerous, i asked what do u mean apparently my brain had slipped down the back of my neck, they decided to do the lp anyway my opening pressue was 36, and was sent home, to try a cut the story short...... was refered to a mr matthews at b'ham eye clinic for my iih and a my g flint at qe for my chairi malformation, at the moment i am in limbo as they cannot do the op for the chiari as my icp is to high, but thay cant give me a shunt or an lp as it would bring my hindbrain hernia further down my neck..... HOW DO I GET MY PRESSURE DOWN.?????????? as i really need somthing going through a really rough time at min constant headache,constantly sleeping ...i slept for 21.5 hours straight through the other day and didnt feel as though i had had enough sleep, if anyone got any ideas please share them ...................oh by the way was told to lose weight by my iih doc so have lost 2 stone only for the headaches to get worse but still losing weight....
Thank you for listening ..... xxxx