Oh Night Divine

Can you remember the feeling of waking in the morning after a good night's sleep and feeling so good - you feel rested and have not a pain in your body. Well that is a very rare feeling for me and hundred's of others who suffer from chronic undiagnosed pain.
Better sleep is not about getting a better mattress, no matter what the salesman or The Better Sleep Council brochure will tell you. It also says on the brochure that a good night's sleep is essential for your mental health, your emotional health and your physical health and "If you think you are suffering from a serious sleep problem, such as insomnia, sleep apnea, narcolepsy or restless leg syndrome, consult your doctor or a sleep specialist" It does not tell you that your doctor may just add these symptoms/conditions to your already large list of symptoms and do nothing about it. If you think I'm angry, I am. I just want a good night's sleep...well that's a start anyway.
Apparently what I have is not life threatening - according to my doctors - I have no liver problem, no heart problem, no kidney damage (all the pain killers may have something to say about that soon!) so just give me something to manage the pain.
But I digress - the pain specialist - who is treating me as if I have fibromyalgia, as no other diagnosis has been offered, says all my symptoms may just be due to sleep deprivation. So did any one order a sleep study??? No one ever checked for tender points either!
See previous post 'Go To Sleep' Tuesday, May 1, 2007
I am not my disease - I have a life. (but it is getting smaller) Oh Sleep Divine.

PAIN

Note the capitals - PAIN, chronic pain is a strange thing. You start to live with it, you cope with it, you manage it but you do not see it is slowly changing your life. You stop doing certain things...maybe not going out at night or getting someone else to do the shopping, sitting more, exercising less...whatever. It is insidious. Then one day we have had enough and we try a new doctor, a new drug. We need to try other things but it is hard to think clearly when we are in pain and just trying to get through our day to day existence. I will try and place here links to things that help us - those in chronic pain. Maybe you could post something that has helped you.

I am going to try

• yoga
• massage
• emu oil
• hot baths

See more info on pain and a brief history of pain

"Pain is a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer,

Woke up this morning and I wrote down this song

I wish.
Woke up this morning with that old friend - cramp in the foot that does not go away for hours. This is being written for the 'Forget No Symptom Project' so that the next neurologist will get to know all symptoms a little better. (I hope) The FNSP was commenced on June 24th, 2007 with Thyroid but continued with more fervour on Friday, June 6, 2008 with Electric Lady Land

Back to this morning, before I forget. Once this cramp comes it is also followed by imbalance of a somewhat mild nature - the dentist barely noticed that i was walking like a drunk - and clumsiness ( i only spilled 1 whole cup of coffee on my sons school pants while he was wearing them and while he was on his way to school).

The other addition is the sloppy ankle feeling. Don't know how else to explain this. Will the doctor know what i mean? any help from others suffering from sloppy ankle would be appreciated. Thank you.

Woke up this morning and I wrote down this song just can't remember who to send it to. Thank you James Taylor

Where 2 ?

What is required? what is needed? The 7th specialist is sending me back to the 4th specialist! He did not have any answers then so why am I to assume he would have any answers now.?
The pain behind my left eye, the one that kept me sleeping upright for 3 months is coming back, otherwise I would not be looking for where 2 go. Yes I am on the medical round a bout - I can feel it starting to spin me now. Pain is a strong motivator but where 2?

Electric Lady Land

That's what I call myself when I get this particular set of symptoms (- it's what some call my weird sense of humour to make light of what is happening.) I feel electric all over but really it's just in my arms and legs and lower face particularly mouth, tongue and jaw.
I lie in bed going crazy with this tingling, burning feeling, combined with loud tinnitus and pain in my upper legs like the circulation is blocked off. It is on both sides of my body. There is also pain in my upper arms. Getting up and walking helps. I try to distract myself with the computer but sitting still is hard as the pain burns in my toes and calves and thighs - electric burning all over. Why do I never have these symptyoms when I see a doctor? I am writing them down now so I won't forget how to describe them. The endep does not help and I have taken twice my normal amount.

Good News keeps the news moving!

Steve said...
What a good idea, this can be interesting and grow,good news keep the news moving!

1:54 AM, September 23, 2006

Let's check out what good news, positive news has been in the mainstream news of late.
By mainstream I mean your local newspaper, your radio news and your television news - ABC, BBC, CNN etc
Please post any good news items you have seen or heard in the news lately.

Go to sleep

Or should I say turn out the lights and go to sleep.

Years ago I remember reading that the sleep you get before midnight is the most important sleep. (This probably came from an ancient indian script knowing my earlier life)

More recently there was a news report linking cancer and sleeping with a light on or even sleeping in a room with a street light on outside it all night! (Is this getting too weird for you? Well here is the medical link: Schernhammer E, Rosner B, Willett W, Laden F, Colditz G, Hankinson S (2004). "Epidemiology of urinary melatonin in women and its relation to other hormones and night work.". Cancer Epidemiol Biomarkers Prev 13 (62): 936-43. PMID 15184249. )

There is also the Melatonin connection much mentioned of late. Got me thinking about one of the first doctors I saw in 1999 and how she said a lot of my symptoms could be explained by sleep deprivation - muscle pain, poor concentration, poor memory, irritability and fatigue. Had my children trained me to be a light sleeper? No one has ever ordered a sleep study to be done on me. Some doctors have queried if I have had one done.

• I snore quite a bit especially when lying on my back
• my legs often jerk
• I talk on some nights.

I feel this needs more investigation but "I am not my disease - I have a life."

Sjogren's Syndrome

That is pronounced Show grins but I must say I don't have many grins to show this afternoon. Afternoons are usually the worst. I start the day positively and with lots of energy - well the most energy I have all day - but by 3. 30 I'm very tired. The rheumatologist says that is Sjogren's. Not many people know of it but it is quite common as far as auto immune diseases go. Trouble is most people do not get an easy diagnosis until after they have it for quite a while - 7 years it took me. Why? Well with me it was because the symptoms most doctors associate with Sjogren's were not my worst symptoms. Yes I had dry eyes, Yes I had a dry mouth. Yes I had more dental cavities. Yes I had dry skin. I did not go along giving these sypmtoms as they seemed minor to me compared to the muscle aches and the burning tingling in my hands, arms, feet and calves. But dryness is the main sign that doctors take note of to head them in the right direction. The version of SS I have comes with a neat little set of MS like symptoms just for fun. (Please note the sarcasim) If you want to know more about SS go to www.ratesites.zoomshare.com
This is not my disease - it does not belong to me - I'm not my disease
The rantings edited from what is going on inside my head about what is going on inside my body at any particular time.

Adie tonic pupil

I am not my disease.
I have adie tonic pupil. It is just another annoying symptom. No one tells me why I have it. They just make a note of it. What it means is that in the dark I cannot see properly out of one eye. It is not life threatening it is just annoying. I did not always have it - it arrived about 2 years ago - before I was diagnosed with SS. It sent my opthalmologist into a spin - what with that and the eye pain. He ordered an MRI of the brain straight away.
This is just a reminder to myself from eMedicine Anisocoria "The combination of an idiopathic tonic pupil with decreased deep tendon reflexes and/or orthostatic hypotension is termed Holmes-Adie syndrome. The symptoms of a tonic pupil tend to be self-limited. Aide pupil is believed to be idiopathic or viral in etiology.
Other causes of a tonic pupil include neurosyphilis, diabetes, herpes zoster, giant cell arteritis, and alcoholism." from Author: Richard Gray, MD, Assistant Professor of Clinical Emergency Medicine, Director of Undergraduate Education, Department of Emergency Medicine, University of Minnesota Medical School, Hennepin County Medical Center

Thyroid

I have an underactive thyroid.
It is called Hashimoto's thyroiditis (also called autoimmune thyroiditis and chronic lymphocytic thyroiditis). It is a chronic inflammation of the thyroid which is a condition of the endocrine system. That's why you visit an endocrinologist for thyroid concerns.

It means that the thyroid is attacking itself and making itself slow down.
I take 2 tiny pills every day and I have for many years. It is no big deal, except for when I travel as 1 of the tablets has to stay cool. One tablet is replacement thyroid hormone T2, the most commonly taken drug for the thyroid, and the other is T3 - tertroxine. This is taken as my thyroid needs extra help to absorb the T2. The thyroid causes many symptoms which can be confused with other diseases but it is suppoesedly easy to diagnose as it shows up in a simple blood test.