Tinnitus embarrassing teens

I'm not much fun at parties

Apparently I talk really loud at parties according to my teenagers. That is caused by the constant ringing in my ears. (It is really embarrassing to teenagers who don't give a damn that you have tinnitus or that they may get it soon if they keep listening to loud music on earpieces)
Standing at parties, in the festive season, increases my pain. You are not a very good party guest if you are in pain.

Sitting for too long at parties makes me really stiff and I cannot get up out of the chair. This is not a good look in one so young; it seems to be accepted in frail 80 year olds but not young robust people.
I end up being the kitchen staff as constant doing and moving works best for my body. If I join in a conversation it is not very long before the pain makes me need to move on and I look quite rude and uninterested.
I use to love to dance at parties but now know that if I do my pain will be extremely bad for 3 days after.
I and many others in pain, may be the one offering you the hors d'oeuvres, making a pleasant comment and moving on. But only if the plate is not too heavy!

I'm not alright

Sometimes I get so sick of pretending that everything is alright.
How are you? Good, good, How are you? Good thanks!
Well guess what I am not good. I am in constant pain and living on pain killers and still I feel pain and sometimes I can't even walk up the stairs and my hips ache all the time and the muscles in my upper arm are swollen, my eyes are dry and my tongue is burning, I drop things, I can't chop the veges without difficulty and everything seems like a struggle but I go on pretending that everything is alright.

Why? Because people do not want to know.
Who am I pretending for? My family, especially my kids and my mother.
Hi, how are you? Fine thanks for asking.

Hear no evil

An illustration of one of the three semicircular canals of one inner ear and associated structures

Soon I may not be able to hear any evil - well I suppose that is putting a positive slant on it. I seem to be going deaf, well more deaf. It actually feels like the ears are blocked full of something. It's like when you are at an altitude and you need to blow your nose to unblock your ears, but this does not unblock.
Is it part of Tinnitus? One specialist said it sounded like Menieres Disease and said "but that is the least of your worries."
When people, especially my husband, are not talking in my direction I cannot hear what they are saying. I'm not sure if this is because I am lip reading and not knowing it, or because of the pitch of his voice or what?

DIAGRAM: An illustration of one of the three semicircular canals of one inner ear and associated structures from Author United States government from Wikipedia public domain

Dear Doctor,

Re: my diagnosis

I am writing to let you know I have finally been diagnosed and I was hoping you could give me back a few years.

I have had symptoms for over 10 years and I have finally been diagnosed with polymyositis. This is an inflammatory myopathy that causes muscle weakness and muscle pain in the muscles closest to the body. It is an auto immune condition.

I was diagnosed from a muscle biopsy. I have been to so many specialists and I hope that maybe you would remember me so that if someone else comes into your office saying they have muscle pain in their arms and legs, and a feeling that their muscles won't relax and difficulty with fine motor skills and an elevated CPK, that you take the time to listen and try and work with that patient to find out what it is. For 8 years no one offered me a muscle biopsy.

Merry Christmas,
yours sincerely,
G. N.

P.S. I am not my disease (but knowing what it is has helped me greatly)


TO: the endocrinologist, the pain specialist (who said it was fibromyalgia), the psychologist (that said I had cognitive defects and referred me to the immunologist), the neurologist (who gave up after finding out it was not MS) and the rheumatologist (who diagnosed and treated me for 2 years as having Sjogren's syndrome).

PHOTO BY bwavobunny

Well you got me on a bad day

"Pain is a more terrible lord of mankind than even death itself." Dr. Albert Schweitzer, the French medical missionary, 1931
Pain is called The Universal Disorder as we all get it at sometime or other I suppose - even babies. It is just part of being human and I suppose I would not like being one of those rare people that feel no pain as that could cause all kinds of complications. Living in constant pain, as I and many do, is not fun though.
The pain I feel (I refuse to call it "My Pain") is caused by muscle inflammation due to autoimmune dysfunction. I know what causes it but that does not really help - stopping the pain helps and that means using drugs prescribed by the specialist. Acupuncture and homeopathy have not helped with the pain as much as I had hoped. Today I have a lot of break through pain and need to take extra tramal. I do not know why this is, why I have extra pain, as there never seems to be any rhyme or reason.
They have started me on a new drug to dampen down the immune system and hopefully prevent future muscle wasting. Did you know that exercise will not bring back the wasted muscles but it will help prevent further wasting. This I found a bit depressing!
I am going to go and take another pain killer as I cannot sit here any longer - tomorrow will be a better day.

THANKS lilcougerchic10

A merry go round that is not fun

Many diseases may be clear cut but if it is one thing I have learnt in the last 10 years it is that diagnosing an autoimmune disease is not. I have been to so many doctors and specialists who just pass me on to the next specialist - the medical merry go round - and I have almost given up many times. I have been given a few diagnosese over the years but when treatments do not work - after a year or so - they decide it may not be what they first thought. I have also been told it might be MS or Lupus or Fibromyalgia or Chronic Fatigue or Ankylosing Spondylitis (this is a real disease, I did not just make that up). I have been shocked that many well respected specialists are happy to give suggestions of what it might be. A lesser person might have become very scared but I am not my disease. This mantra has helped me as no one else has.

So, what is the upshot of all this? If you are not well and you do not have a good G.P. on your side, you must be your own advocate. This is very hard if like me you are being told that it is definately autoimmune in nature. Why? Because there are so many autoimmune conditions and it is very hard to narrow it down, especially if the doctors cannot. One place to start is autolist, where they list disorders in sections such as Neuromuscular (affects nerves and muscles) or Vasculitic to (do with blood vessels and veins) etc. They also have an alphabetical list of over 80 immune disorders and their symptoms and recommended links.

Also consider that only you know your symptoms and how you feel and maybe you are not explaining them in the way that the specialist expects to hear them. Take pain for example how many kinds of pain are there and how do you explain them? Many diseases have specific measurable signs that show up on EMG's or blood tests but many do not. People with these symptoms are often left undiagnosed - put in the too hard basket.

Be strong. Do not be afraid. You are a detective on an interesting and difficult case and above all remember You Are Not Your Disease.

Thanks mel2u for drawing

What I've learnt lately

Listen to my body and don't let others convince me otherwise. This is some thing I have learnt lately.
It was a simple beginning - the physio said "Do not let your pain go higher than a 5 out of 10". Seems simple, it is simple but it has had far reaching affects for me.

Firstly I realized I always push through the pain. How does this help me? It doesn't.
Secondly I allow other high acheivers around me convince me I should keep going. This also does not help me.
So listening to my body has had a profound effect - I feel in control. Yeah! I am not my disease. It is not controlling me. I am only taking pain killers as I need them instead of like clockwork. I am doing positive things to help myself :

• resting or changing activities when the pain gets to a 5


• walking - even for just 10 minutes a day


• going regularly to physiotherapy


• going to sleep at a regular time 'cause it does matter


• not pushing through the pain


• asking for help (to bring in the groceries or cook or whatever) when I need it.


• reading others inspiring blogs ... Living-with-MS ... help autoimmune ... fibro files ... Girl, Interrupted by Polymyositis

I am NOT my disease and neither are you.

A new phase begins

Finally I have begun physiotherapy at my local hospital. The physiotherapist seems good and understands my condition. Today is the first day after my first treatment and I am in so much pain just in 1 leg. I know this is good pain to help the muscle tightness and lateral hip pain in the long run - that is what I am hoping anyway. She did very specific massage in just 3 sore points in my right buttock, laser light treatment and taping. This is all to treat the lateral hip pain. Very early days but I am happy that this treatment has begun. 好

The wheels turn slowly

Yes, I have a diagnosis, of sorts - inflammatory myositis...possibly polymyositis but I am still in limbo land. The prednisone - 1st line drug in myositis and many other autoimmune conditions - did not work according to my rheumatologist. I'm not sure if I agree as the large muscle mass above my right knee has miraclously disappeared after years. The rheumy did not know this and she went by CPK and muscle strength and muscle pain which had not changed enough.
(The prednisone had side effects even after 2 weeks - my eyes were a bit blurred and dry, I could not get to sleep for hours, I was very hungry all the time and on the last few days my hair seemed to be falling out more than normal)

So what did she recommend? Pain medication, which I have been living on for years and physiotherapy. My problem is I still cannot get into physiotherapy at my local hospital and I am still on the waiting list. This is very frustrating to me as after having a muscle biopsy and being given a diagnosis I am still not doing a thing different than before my diagnosis. Well I suppose I am doing one thing which is to learn a bit about Myositis and contacting others who have it. Please comment here if you do also have one of the forms of Myositis as I would love to hear from you.

Finally Diagnosed with Myositis

Finally Diagnosed with Myositis OR No I am not Crazy.
I overcame my fear of a muscle biopsy (due to a bleeding disorder) and have finally been diagnosed with "inflammatory myositis" - which is a muscle disorder with all of my symptoms - muscle pain, muscle weakness, swollen muscles, difficulty swallowing etc etc etc. It affects the muscles closest to the body - upper arms, thighs, neck, shoulders and makes them ache and tire easily. It is an autoimmune condition, a connective tissue disorder and comes under the heading of neuromuscular disease.
My new rheumatologist was the person who diagnosed me but it could have just as easily been a neurologist ( Goodness knows I have seen so many! )

So the moral of the story is Never Give Up. Fight for yourself as no one else will. Do not accept the doctors who tell you 'it is in your head', 'it is menopause' or 'just your age' or 'because you are putting on weight' or 'just mild fibromyalgia' or 'you are not taking your thyroid meds properly' or 'if it was really bad you would be in a wheelchair' or 'just take these tablets' (and now these, and these and more of these). Only you know your body and your symptoms. Some times I started to think I was imagining it and I was going crazy.
I am pleased to finally have this diagnosis but will also fight to get better as I am Not my Disease.
P.S. I could name each doctor and what they said but "you know who you are"

LINKS : Facts About Inflammatory Myopathies (Myositis)

Myositis Directory

Current symptoms

Just a little review of my current unexplained symptoms for my own personal records. This seems timely as it is the first day of the 11th year with some of these concerns. The last symptom on this list is the very first one I had. I realise that most of these are subjective which makes diagnosis difficult, especially when doctors want to see results.

Tingling

• lips - left side


• chin


• toes of left foot


• arms - both - vague

Aching

• shoulders


• hips


• ankles


• wrists


• jaw

Pain behind right eye with pupil staying larger than left eye

Tinnitus - ringing in ears

Pain on use eg computer hurts arm, chopping veges hurts arm

Headache in temples

Slight sensitivity to light

Stiffness from sitting

Feeling of heaviness in limbs

Weakness in muscles of upper arms and thigh

Feeling that muscles will not relax

open your eyes

Every night when I walk up the stairs in the dark it is as if someone has but a blind fold over 1 of my eyes - just 1.

I don't quite understand this phenomenon even though an opthalmologist has given me a name for it - Adie Tonic Pupil.

Sometimes in a semi dark room you can see that 1 pupil is large and 1 pupil is small. Always the right 1 is large and I'm not sure if that is the eye with the Adie or the left 1.

What I do know is that when I got that bad migraine last week it was a pain behind my right eye and my right pupil was enlarged.

I also know that it is an autonomic nervous system sign. The ANS is like a control system and is involved with heart rate, digestion, respiration rate, salivation, perspiration, pupil, urination, and sexual arousal.

Links:

Holmes-Adie syndrome at Washington University Neuromuscular

HealthLine

CYBER-SIGHT

Adie's as a manifestation of Sjogren's Syndrome

Pain pay off

There seems to be a decision when living with chronic pain. How much do you put up with the pain? How much can you distract yourself and what quality of life do you have?

When I take medications (and I have taken Topamax, Endep, Lyrica to name a few) there is always a pay off. Usually part of me, the part that relates to others, disappears a bit. Sometimes I get new symptoms like weight gain or I can't think clearly and I wonder is it all worth it. At the moment I am not taking prescribed drugs for pain and have coped for about 6 weeks using over the counter pain killers. I start to wonder what is worse - the effects of prescribed drugs or panadeine, codeine etc. Then I wonder about quality of life as I can't seem to judge if I am better off.

I want to talk to my pain specialist about my pain treatment options, maybe trying TENS or something else but the way I am feeling today just GIVE ME THE DRUGS.

P.S. I am also very frustrated at not being able to talk to anyone or make an appointment for 3 days with the pain specialist. I find this totally unacceptable for people living in chronic pain. Don't you?

IMAGE Thanks to UnderworldStargazer

Ningling and Tumbness

My symptoms are so distinct tonight i thought i better record them.
Tingling and numbness are not new to me - just the pattern of where it is.
A new symptom - tingling in just the left side of my tongue goes now together with tingling numb feeling in all my left fingers and all my left toes. At the same time the night sweats have come on very strong - i am someone who never use to sweat .
Also the pain and bubbling in both my calves is severe. The neck pain and shoulder pain has not subsided for 3 days. It usually weakens overnight.
i know this all sounds a bit depressing but i am still here banging it out on the computer.
Today I had 1 coffee and went for a nice walk.

Good News No shoes

Some days I am only good for sitting on the computer to distract myself.

I don't want to bring myself down so I look for humour or good news.

I often visit the Network for Good to see positive news updates from around the world or Good Giving which allows me to help others, and not focus on myself, right at my computer. (There is always some one worse off. As my father use to say "I thought I had it bad 'cause I had no shoes until I saw a man with no feet"

Thanks JMeganSnow for the art

Listen up.

There are a thousand chirping birds in my head most nights - in the day they reduce to a high pitched group of crickets singing in unison. I am a nature lover but this is ridiculous.

Some people might think it would be lovely to listen to these constant companions but I wish they would get out of my head and leave me in peace and quiet. They are sometimes so loud it is difficult to hear other things like what the children are trying to say to me.

I think people who have tinnitus may become lip readers without really knowing it. I noticed this when a new doctor was speaking and I had to work really hard to listen as I could not read her lips - she had a strong accent which makes lip reading difficult to the novice. I have only had tinnitus constantly for 6 years now. It is just added to my list of symptoms and no doctor (in the many that I see) has ever investigated it further.

To tell the truth it is only really annoying on those nights when I cannot get to sleep easily and I lie there listening to the sound of a thousand chirping birds...

(BREAKING NEWS: Henry Ford Hospital offers hope to the more than 50 million patients with tinnitus. )

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?