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

You see, you cannot see.

"You cannot see what is going on inside my head. You cannot see what is going on inside my body. I see this as a plus - all good.

If you could see what was going on inside my head - the verbal diarrhea - oh it would be very, very bad.

If you could see what was going on inside my body:

1. it would appear grotesque, a major battle ground, cell against cell, body attacking it's own body - a very frustrating, confused battle where no one wins (or something like that)

2. you would feel sorry for me and I don't want your pity.

This way at least if you meet me in the street you will not know, I can pretend, keep up appearances. You see I am not my disease.

If you know me you may be one of those who sometimes say "Hi, your looking good".

I'm not my disease. "

This was my very 1st post back in 2007

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

I am a work in progress

(Grieving for the loss of who I was.)

The 5 stages of grief

DENIAL: At this stage I am unwilling to accept the truth. "I will soon awaken and it will all have been a dream - this is not happening to me - I can still dance, do my work, chase my children."

ANGER: I feel angry and may need to opportion blame. "Why me?" (in an angry voice) "It is there fault, they did .... , it made me stressed and that made me sick"

BARGAINING: "Maybe this will work. If I try this diet, remedy, religion etc and I will feel better and maybe it might even go away"

DEPRESSION: "I feel I cannot cope, there is no hope, it is all too much, there is no one who cares and no way out"

ACCEPTANCE: "I don't like what is happening but I have some level of acceptance - I can get on with my new life, it is a different life and I can cope."

I don't hold to the idea that we work through these stages in a linear way. I go back and repeat some of the stages sometimes on a daily level. That is what it is like for me dealing with chronic pain.

I think when I started this blog I may have been in angry denial - this is not my disease, take it away, I do not want it. It sounds like it could also be acceptance - that I do have a disease but it will not define me.

We are all a work in progress.

Thankyou jackiee1970 for photo

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