Confused.com

Hey everyone,

I have suffered with chilblains for around six years now just after my first son was born but I have noticed that in this last year, since I've been ill they have got a whole lot worse. The chilblains are on every single finger and I can't understand why as chilblains only come when exposed to cold then warmed up quickly but due to mobility problems I haven't been able to go out so why the chilblains?

I may have a little clue as my hands and feet go freezing cold and turn blue like I'm dead so that might account for the cold, and then when the blood comes back it could be the warm up? I'm not to sure whats happening and when I went to the doctor he said he couldn't give me and medication to help because of the Intracranial Hypertension. The medication could cause me to have swelling as the medication keeps the blood vessels open.

So if any spoonie has an idea of what might be causing it I'll be grateful for any advice!

Thanks for reading xx

Being a #Spoonie

Hey everyone,

Sometimes I feel like the only people who understand me, understand my limitation and pain and who I can speak openly about symptoms even the embarrassing ones are other spoonies. I have been speaking to more and more people with chronic invisible illnesses through useing the hash #spoonie on Twitter, but when I speak to or are with people who don't have these problems I have trouble communicating and getting them to understand how I feel. Most people sort of ignore my limitations and are solely focused on what they want or need.

They don't seem to understand the fact that you haven't slept for three nights, in extreme amount of pain, low mobility and the fact that you had intense diarrhoea all day with stomach pains. Nope all their focused on is the fact that in their view you have made up and excuse of "illness" to not come to their party or missed lunch with them or haven't made the exhausting trip of going round their house. How selfish of you!

The only place you seem to have peace is when your talking to people who truly understand how you feel. The great thing is that they don't say your moaning and that someone is "worse then you are" they understand and give you support. I feel that some people in my life have tunnel vision and only think of themselves so that makes me more hardheaded and stubborn so I will survive with the help of my husband and we will say that we did it without there help!

So in conclusion I love being a #spoonie! I have people I have never met being more sportive them some people in my life. So I support and are thankful to all my #spoonie warriors who together we can fight against anything that is thrown at us!

Living with a chronic illness, running our own race, following our own path!

Love and support

Hey everyone,

When your whole world is turned upside down you begin to see the world and the people in it in a very different light. The strength and ability of human beings when their pushed to a limit always surprises me. My husband is a fantastic man and over the last year hasn't ceased to amaze me, he works so hard each day to look after us all.

In the last year my husband has loved and supported me through everything. He says to me "I vowed through sickness and in health" when I mention how much he does for me. Just as my life has changed dramatically so has my family's, my husband has become the main carer for all of us. He comforts me when I'm in pain during the night and still manages to get up with our baby and take our son to school in the morning leaving me to sleep. He takes care of them all day, does all the housework and makes sure we have our basic needs. He supports me through every test and appointment, makes phone calls to doctors and chases results. He has been my support through this last year and kept me sane, without him and my boys I don't think I would have the strength to carry on. In my worst moments he has been there by my side. Most of my family also have helped in the little ways they can.

There is also a wealth of support and love on the Internet and social networking sites. I met who I class as a good friend of mine through a support page on Facebook and a lot of faithful friends through Twitter. I have been on Twitter for a while but never really knew how to use it to my advantage until I followed the broken of Britain. From following broken of Britain which is a non-party political campaign for the rights of physical and mental disabled people and their carers, I was fortunate enough to read the "spoon theory" by Christine Miserandino (bydls if looking for her on twitter) which helped me understand and accept my disability as well as explain it to others. Through Christine Miserandino's work #spoonie has become a trending topic for all disabled people suffering any type of disease or disorder to confide in and support each other as well as sharing advice on disorders, medication and equipment that might help.

Through Twitter a lot of disabled people in the UK have found a voice to fight the cuts and to share information on it also sharing in the shock, disappointment and the feeling of being let down by their government.

What I'm trying to say is that no matter how lonely and desperate you might feel there is always love and support around you, you just have to tap into it, mine is through social networking sites whats yours?

Thanks for reading xx

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino

http://thebrokenofbritain.blogspot.com/

Idiopathic Intracranial Hypertension (IIH)

Hey everyone,

I want to talk about Intracranial Hypertension. Intracranial Hypertension isn't widely known among the spoonies of the world, let alone the non-spoonies but its something that can affect anyone, at anytime, at any age. Idiopathic Intracranial Hypertension (Idiopathic means of "unknown cause") is a serious neurological condition in which high cerebrospinal fluid (CSF) pressure within the skull that causes unbearable headaches, swelling of the optic nerves and can result in loss of vision or blindness. Diagnosis of IIH is made by ruling out other neurological conditions that might have the same symptoms. Neurological examination is normal (apart from my case because of the underlying neurological problem) apart from the presence of swollen optic nerves although it may not always be present. Definitive diagnosis of IIH is made by performing a lumbar puncture which shows the pressure of cerebrospinal fluid (CSF) to be above 25cm/H₂O.

 No-one knows what causes IIH, although blood clots in the veins draining the brain can cause Intracranial pressure. Withdrawal of steroids, large doses of vitamin A or intake of foods containing large amounts of vitamin A, use of body building type steroids and possibly, hormonal changes and certain drugs can also cause raised intracranial pressure. Caffeine and stress have been said to play apart in Intracranial hypertension. The most common symptoms of IIH are: severe headache, papilloedema (swollen optic nerves), 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 the pain caused by bright light), problems with balance and spatial awareness, aphasia (difficulty using or understanding words), disorientation, loss of short-term memory (sometimes long-term memory loss), confusion, feeling "spaced out" and lack of depth perception (e.g judging depth of stairs, steps, curbs). Also people with IIH may find unfamiliar (and even familiar) places, traffic, confusing and overwhelming. 

Treatment of IIH is the most commonly prescribed medication acetazolomide, which is a diuretic. It's thought that it acts by reducing the production of CSF. It's relatively safe but nearly all patients have tingling of the fingers and toes as a side effect of the medication, and patients are advised to increase their intake of potassium as acetazolomide drains the body's stores of potassium. As well as the standard acetazolomide, a sustained release form of the drug is also available, 'Diamox SR', and many patients tolerate this form of the medication better and find that the side-effects are reduced in comparison with the standard form of acetazolomide. Another diuretic commonly used is frusemide. Sometimes a short course of steroids may be given. Various analgesic drugs (painkillers) are used to treat the pain associated with IIH, with varying degrees of success, but as with all painkillers care must be taken as many drugs can be addictive and some can have severe side-effects. Some people need repeated regular lumbar punctures (LPs) to remove excess CSF, or if symptoms don't improve on medication, surgical treatments may be considered. 

My experience of IIH  have been that I had really intense headaches which made me puke, sleep all the time, have no idea where i was or what time it was and because of the sickness I couldn't take my pain killers so I was in extreme amount of pain. I spent days in my bed watching kids t.v (although my kids weren't in the room with me) to this day I have no idea what I watched. I began having vision problems in the sense of double and blurred vision, my eye began to become really painful and felt swollen (although you couldn't see the swelling), my head hurt like I had hit my head of the wall or the floor, I couldn't even lay my head on the pillow.

I ended up in A&E so many times begging doctors to help me with the pain and my eye, they all turned me away and told me to go to my GP. What they should have done is checked my eye seen that there was swelling in my optic nerves, asked about my other symptoms and sent me for an emergency lumbar puncture. Instead I had to wait six months of my symptoms getting worse to have a lumbar puncture (which was ordered to rule out other neurological problems). The lumbar puncture showed that I had high CSF pressure yet I didn't recieve acetazolomide till the 7/02/11.

Acetazolomide has been prescribed to me to reduce swelling in my eye and to reduce the pressure in my brain and spine. In this last week I have been taking them I have felt awful! I have felt sick and because of the sickness a loss of appetite, I have had a headache, a burning pins and needles feeling in my hands and feet, everything tastes disgusting, drowsy and a constant thirst and need to urinate, put all these side affects with the other symptoms I have, it hasn't been a very good week!

I feel like I'm in a catch 22 as I have to take these tablets and up them to 500mg twice a day to save my eye sight. If these tablets don't work or I feel I really can't cope with them then I will have no choice but to have surgery to save me going permanently blind. This makes me really angry as if the doctors had caught and treated me early on I wouldn't be in this position. My mum has Intracranial hypertension as well and goes to a different hospital to me, as soon as she has any experiences of the symptoms she is sent straight away to A&E where she is taken seriously, given a emergency lumbar puncture and kept in over night to make sure she is OK and prescribed medication. She only has to take the medication for a month to make sure the swelling goes down and is OK to carry on until the next flare up. In the differences of a matter of a couple of miles we are in two different positions.

I implore you all that if you experience regular headaches and eye problems go to your doctor or your local A&E. If your a caffeine lover this is a serious and rare disease and I might lose my eye sight and one of the main causes of IIH is caffeine and stress! Beware of your health as you never know when YOU might be affected.

I want to give up!

Hey everyone,

I know some people are going to be mad at me saying this but I want to give up! I'm tired of needing help and not getting any, tired of fighting for the simplest things, I'm tired of all the phone calls having to chase down doctors, secretaries, receptionists, occupational therapists but most of all I'm tired of the pain.

I'm in constant pain and I'm fed up of it, I want to feel "right" for one day. I don't want to be in pain or have all the other symptoms and I don't want to fight for help that I'm not receiving. I just want to give up on it all because I don't see the sense in fighting.

The doctors don't care what I'm going through as long as they don't have to deal with me for more the for 5/10 minutes every four months their fine to just leave me. A&E doctors don't care how much pain I'm in because as long as its not going to kill me they don't have to deal with me. Occupational therapy and my council don't care that I'm living in a second floor flat with no lift and don't get out much or the fact I can't get my wheelchair round the flat which would help my husband because he wouldn't have to carry me or the fact I'm nearly breaking my sink from having to lean on it to get on and off the toilet. I'm probably going to be kicked off of DLA for not being too "disabled" enough for them as I don't have a diagnosis and that's without the emotional stress I'm putting on my family.

So please someone tell me the point of still fighting?

Can anybody help?

Hey everyone,

I don't really know how to explain how I feel or how or what to talk to you about because being in limbo is a hard thing to describe or to convey how you feel. All I can say is I need help and I mean real help. I have been told recently from my lumbar puncture results that I "properly" don't have MS (multiple sclerosis). To explain my lumbar puncture shows that everything is normal in my spinal fluid (apart from the intracranial hypertension) but there is always a slim chance that it could be, they can't rule it out 100%. Also a friend of my mother-in-laws who has MS wasn't diagnosed with it until her second lumbar puncture.

This has left me uncertain to whether or not I have MS. If there is a chance, how ever slim could I be that percentage? 20% of asthmatics have allergic reactions to Diclofenac, I'm in that 20% and my asthma isn't that bad so why couldn't I be in that 10% in which the lumbar puncture doesn't show certain anti-bodies?

The other thing that is driving me crazy is that I have a lot of symptoms of Lupus. Lupus is called the "great impersonator" so my neurological symptoms that I think are MS could be Lupus. The reason I have thought about Lupus is the fact I have recently developed a rash on my face. My rash goes from one cheek to the other across the nose, it isn't scaly or pimply, it actually looks like I've been sun burnt. I have never had any facial rash or redness on my face until recently, my doctor has dismissed it as a fungal rash even though my rash isn't scaly or that I don't have a scalp problem. He dismissed it also because my ANA test (Antinuclear Antibody) came back negative.



seborrheic dermatitis



My face rash

 I'm in limbo with Lupus because there is a 5% chance of having SLE (Systemic lupus erythematosus) and having a negative ANA test. Can I be in that 5%? The other reason I'm in limbo is that my grandad and cousin have and had a form of Lupus.

I need an answer. My doctor doesn't know much about what I'm going through and the neurologist appointments are only 5/10 minutes long and they want you out as soon as possible. They don't want to answer questions or know what your going though, no-one has asked my family history or really listened to my symptoms.

I'm going to list my symptoms and if you can help me please do as I'm in limbo and its driving me crazy. I feel really isolated and want to give up, please help!

Pain
Burning- face, chest, arms, elbows, hands, fingers, groin, legs, knees, feet.
Aching/cramps- arms, elbows, hands, fingers, legs, knees, feet, toes.
Joint pain- elbows, wrists, fingers, hips, knees, ankles, toes.

Numbness- arms, hands, fingers, legs, feet, toes.

Low mobility- hard to walk like a weight on my legs that gets heavier with every step, knees give way, my feet dragging along the floor, legs giving away which makes me fall over and it can come at any time.

Vertigo- a feeling of walking on a steep hill which makes me dizzy and fall over.

Vision- blurred vision, double vision.

Facial rash- red rash that goes from one cheek to the other across my nose, is NOT scaly or pimply.

Fatigue- tiredness all the time at its worse i could sleep for over a 12 hours with a 2 hour nap afterwards, through fatigue my face has hit my dinner plate!

Bladder problems- needing the toilet quickly and nearly wetting myself if I didn't get to the toilet quickly, getting to the toilet and not having a lot of water coming out.

Bowel problems- constipation, diarrhea, needing to go really quickly, flatulence, trapped wind.

Memory problems- easy forgetful sometimes within minutes of being told something had a really good memory before symptoms started, hard to concentrate.

Spasms and restless legs- my muscles spasm and my legs have an uncontrollable urge to move can keep me awake for nights on end.

Heartburn and indigestion- they both can come out of no where without me eating or drinking.

Itching- I itch all over all the time.

Easy bruised- e.g a blood pressure test can leave bruises on my arm

Pain in chest- which can cause shortness of breath and a rapid heartbeat, feels better when sitting up.

Irregular heartbeat- my heart seems to skip a beat then pounds really hard for the next four beats which makes me short of breath and pain in my chest, palpitations.

Dry mouth- constantly feeling thirsty and my mouth being dry.

Smell heat- when my face is burning i can smell heat which is accompanied by my top lip burning.

Chilblains on every finger without going out into the cold and warming up quickly

Also the symptoms of Intracranial hypertension.

Please help!