It's Hard

Really struggling with being alone very very hard indeed and after two years of tests and meds not getting very far with polymyositis IBM don't know what to do next moving on not that easy

Ramble #16 Myositis on my Journey for Pain relief

Sunday A Day of doing nothing resulted in nothing, as much pain as normal in my knees again my Left knee / leg is the worst for what good it is i might have well lose the Left leg, i cant stand up from the seated position i'm sure my calfs have lost some muscle mass, the right leg isnt as painfull as the left leg at all, the funny thing is my left leg pain is horrific but has little twitching, the right leg isnt very painful but the muscles in that leg do a Dance the calf muscles twitch wriggle all day. in that leg,
not a great vid my right Leg twitching from a while ago http://youtu.be/0FRjbitrFLc
So i'll continue with the regime tablets that dont kill the paim Amitriptyline can help me sleep if i dont move
too much when i get in bed statue sleeping lol.

Ramble #11 Myositis on my Journey for Pain relief

had a bad Sunday Chronic pain, Another day of using the walking sticks, sent a E-Mail to hospital chasing info up when will they do something for the pain, GP Said no more morphine, he cant up it no more feel awful bad chest cant breath, on antibiotics and prednisone steroids again, 4-5 hrs sleep so tired fatigued, legs painful just to the touch, another day of sat and doing nothing.

Ramble #10 Myositis on my Journey for Pain relief

Well what a morning Pregabalin, Amitriptyline, morphine, onboard last night, Pregabalin, morphine, prednisone, onboard this morning and i’ve never been in a much pain,nothing is controlling it.the only thing that helps the pain is stitting still like a statue,i cant believe myositis can be this painful ? yes the Emg Result suggested myositis, i just hope there going down the right track and its nothing more serious, i dont feel ill just in so much pain, no weight loss etc had lots of bloods and tests etc all clear,

Ramble #9 Myositis Journey for pain relief

Seen GP Yesterday no more morphine he cant up it now, GP phoned Neuro specialist Secretary for an Emergency appointment a waste of 20 mins got nowhere, the CHRONIC PAIN Continues its been 8 months of this now Chronic pain that gradually built up knee pain, red legs, sweating, muscle twitching, EMG results Suggest Myositis, (such a painful thing for me) been prescribed prednisone 40mg daily for a week. when will i every get the correct treatment for my condition morphine MST Continuos 60mg not helping any at all. i really bad night no sleep awful leg.knee.pain, been out for any hour with the camera, i’ll pay for it later with the pain. its my only thing to take my mind off the pain.

Ramble #8 Been a While Got a diagnosis Myositis.

well after weeks of chronic pain and tests
finaly been told i've got Mysositis and need biopsy to see which type of myositis i have and i'm on Morphine now. not that its doinhg a lot.

Chronic pain all over my body and my necks started to be stiff very stiff as i cant move without severe pain
ther journey continues. : (

Ramble #6

Another wasted few days
constant pain pure Agony
off for a CT

Ramble #5

24HR Urine tests nearly done
Trying Amitriptyline Tablets 4x a day for pain got to give it 3 weeks
wants to hurry up.

Ramble #4

hoping to get to the Doctors pain killers doing nothing feel so tired with thump thump pain every day

Ramble #3

Well another wasted Night pain pain pain
first of a 3 day urine night test done
onto the 3 day 24hr urine test.

Mrs not well another infection in her foot post amputation from 2013.
years on after meningitis nothing gets better what have we done ?
Give me strength.

 

About Me.

Diary of Daily #Pain. 2013-2014

About Me. 

Name.Francis, Male 50+ 

History of Chronic Asthma, Arthritis, Gout. Long term Meds with these conditions. Non Smoker 20+ years, Occasional Drinker, Virtually stopped the last 3 months to try and help Conditions. 

(not helped)

(Family history of Gout, Arthritis,Hormone problems,Heart disease,Auto immune problems.)

Overview. PAIN It Started about 6 months ago out of the blue Sudden Chronic Joint Pain everywhere hands, fingers, elbows, spine, particularly my knees loss of mobility, Sense of shaking, Cant Sleep, Chronic Fatigue, Headaches, irritable, Red Legs like mild Sun Burn, Crushed chest feeling, Shortness of Breath,Some Body and Eye itching etc etc

Severe sweating at any time particularly when a change in temperature i.e.moving between rooms etc, Cramp, and Severe Twitching of my Muscles Leg Calf's, Ankles, and back of the hands.

Since this started I'm suffering More Pain and now have hair loss on my legs, arms and down my back

(All symptoms Seen by Doctors)

History - Meds

Had Various Blood tests. Full bloods
Blood count
Red White Cells
Sugar
Liver
Kidney
Colestrol
Thyroid
Calcium
Vitamin
B12
Uric Acid
Everything Normal levels

Had Knee Scans Normal
X-Rays Showed mild Digenerative Joint Disease in every joint
Ankles Knees Hands Elbows etc


Regular Medication, Allopurinol 400mg, Montelukast 10mg, Uniphyllin 400mg, Prednisolone & antibiotics,
Ipratropium Inhaler, Symbicort inhaler, Ventolin Inhaler, Ventolin Nebulas. Paracetamol
still taking the above medication

and at this time I'm taking
Dihydrocodeine 30mg 2 tablets 4x daily and Paracetamol 2 tablets 4x Daily
with no effect on the continuing pain

Also tried
Diclofenac 50mg, (Stopped not Suitable with my Asthma Medication)
Amitriptyline 10mg, Nefopam 30mg, Naproxen 500mg, Quinine 300mg, Colchicine 500mg,
Tramadol 50mg, Capsaicin 0.75% cream, Etoricoxib 90mg Baclofen 10mg, Duloxetine 30mg.

Nothing has helped at all.

History #1.

6 Months ago BOOM CHRONIC PAIN
Thinking Gout was playing up 

(Gout i present with Red legs some swelling Joint Pain)  

i Waited just a couple of weeks then Visited GP

i presented with Redness to the legs and pain some sweating
GP continue with Paracetamol Ibuprofen
given Colchicine 500mg and Blood taken to check uric acid

(Hair loss had not started at this time)

Ramble 1.

This is Driving me Mad lots of Tests to come ONE Day it will be diagnosed.

History #2

Back to Doctors. Bloods are in Uric acid levels normal.
meds Nefopam 30mg and Steroids to try and help reduce Pain inflammation.

Still in Pain this is crazy where has this joint pain come from

History #4

The Journey Continues
after a few weeks i get to see Rheumatology
i give Doctor a full Med history GP Has sent good full reports results etc.
Doc says hes treating this as Gout,

Bloods are taken (Normal)
Scan of Knees (Normal)
X-Rays show degenerative joint disease in all joints
Knees,ankles,Elbows,Wrist,Fingers,

GOUT I'm not sure all bloods have shown normal uric acid levels.
Given Etoricoxib 90mg sent on my way.

See Gp
GP Not happy Gout ? uh Bloods say not.
so it continues.

History #5

3 months pass and i get to see Dermatology they have GP Reports and are sure its not a dermatology problem
(which we thought GP Wanted to be sure)

I Have an appointment in 2 weeks with Rheumatology Again.

by this time i have the same symptoms but im suffering more redness and Hair loss on my Legs R-Wrist and Back
Chronic Pain tried various pain killers 8 Tramadol 8 Paracetamol a day done nothing.
GP Notices Hair loss more bloods Hormone Vitamin B12 (Results Normal)
Had loads of bloods done over months now ALL NORMAL

Still waiting for Neuro appointment

History #6

Seen by a new Rheumatology Doctor
Doctor Had a good read of medical notes, GP Reports and studied Blood Results
This is not Gout

6 months on now
SEVERE Joint pain cant walk, red legs, severe sweating,Hair Loss, Muscles Twitching.
Headaches, Chronic Fatigue, and some family noticed i seem to be walking bow legged.

Doctor gives, Full Physical Medical
Sees the sweating, Twitching, Redness, Hair loss

Medical reveals Possible swelled Gland in Arm pit
(i cant feel any lump or had any pain in that area).
B.P Through the roof never had high B.P.
So more tests Doctors to see.
still waiting to see neuro
got to see Endocrinology
Have CT.? MRI.?
72 Hr Urine test
3 Night urine test
Nerve Tests.

taking usual meds and
Dihydrocodeine 30mg 2 tablets 4x daily and Paracetamol 2 tablets 4x Daily
nothing stops the joint pain .

it continues