IBM Inclusion Body Myositis PAIN Sleepless nights Weight loss

IBM Inclusion Body Myositis PAIN Sleepless nights Weight loss

not getting no where with IBM Only chronic pain, fatigue, and not sleeping for months as usual, and now large weight loss. lost around 25kg. the NHS Is a utter joke and seeing what they have done for me and what they did to my wife RIP. Its no fit for purpose the most useless institution in the UK, There good in A&E Though at giving water to dehydrated drunks. i farking detest the place. i would rather be dead than have to use the NHS. National Hopeless Service.

So for me its carry on taking Doz of tablets meds pickling my Liver thats the sum totyal of doing zip for my condition.

IBM Inclusion Body Myositis and PAIN.

NHS Tomorrow for Pain management a waste of time for me and them - Neuro doc sent this to the doc i see tomorrow . Inclusion Body Myositis its clear that the pain is more effecting the joints now and muscles i have more evident forearm Scalloping its easy to overcome long finger flexors, reanalysed biopsy showed COX Muscle fiber deficencey plus other supporting evidence thats been gathered  Its IBM i have pitting and sacral oedema to be checked for left ventricular but thinks this is due to my asthma and check for incipent right heart failure and no point it giving any other immunosuppression meds

Happy Birthday Louise

Happy Birthday Babe love you to bits I miss you so so much Louise its heartbreaking you not being here its over two months since you passed away its like two minutes it so lonely without you I love you more than ever Mrs sleep tight Beautiful Angel. All my Love. Xxxxxxxxxxxxx Chris.

Links.

https://www.facebook.com/groups/myositisfsg/
https://www.facebook.com/MFSGUK/posts/456782147805952

Constant inflammation PM / IBM – Polymyositis, Inclusion Body Myositis. driving me nuts NHS Not done anything to help the 24/7 pain

Pain Pain

having lots of trouble getting out of bed after a sleep if thats possible the pain is horrific using any muscles at all when they have not been used all night its bang ouch from the muscles its like what are you doing we've not been used all night leave us alone.

And the pain goes on. Polymyositis Daily Pain / IBM / Inclusion Body Myositis pain

Its continues chronic pain cant stand much more nothing helps really struggling to get out of bed im frozen in a morning. standing from the seated position now a real struggle, any walking is a no no its ponds the hell out of my muscles, again the only thing that slightly helps is do nothing don't move a muscle this causing other problems odema (water) on legs ankles because i'm not moving about, GP Pulling there hair out dont know what to do for me they not had any recent info from consultants on what to give me passed from doc to doc not getting any where fast apart from pain pain pain. grrrr.

Arthritis, Asthma, Chronic Joint Pain, severe sweating, Diary Of Daily Pain, Fatigue, Gout, Hair Loss, inclusion body myositis, morphine, Muscle Twitching, Myositis, polymyositis, Raised CPK, IBM.

Mothers Day

Happy Mothers day to all mums past and present this is the first time without Louise my wife this is so difficult having 3 Daughters and 9 Grandchildren lots of gifts and cards for remembering Louise Mum and Janet love you all xxxxxcxxxxxx

And the pain goes on

Condition driving me crazy. Polymyositis / IBM inclusion body myositis. My Gait already affected

Slower gait speed, cadence and longer gait cycle time were seen in patients with sporadic inclusion body myositis, according to newly published data.

A sample of 42 patients with sporadic inclusion body myositis (s-IBM) was assessed for gait alterations compared with results from prior studies of healthy, age-matched adults. Diagnosis of s-IBM was confirmed with muscle biopsy in patients with mean age of 61.8 years, only 12 of whom were women. Patients were excluded if cardiovascular or renal diseases were present or if muscular impairment or joint instability precluded regular travel. Nineteen participants used a gait aid such as a cane or walker during the assessment.

Patients’ gait characteristics were assessed using a portable stride analyzer, and muscle maximum voluntary isometric contraction (MVIC) was assessed using a quantitative muscle testing system. Included muscle groups were hip and knee extensors and hip, knee and ankle plantar flexors.  Participants were instructed to perform two walking trials at their normal speed and two trials walking as fast as possible across the stride analyzer and were divided into high-force or low-force groups based on the results.

Knee and hip extensors demonstrated the most relative weakness compared with prior studies the authors used as predictive norms. MVIC values in knee extensors were 14.9% of predicted values and 23.8% in hip extensors. Hip flexors were 32% and plantar flexors were 31.8% of predicted values. Overall, the values of all muscle groups was 27% of the reference values predicted, according to the researchers.

During both normal and fast walking speeds, patients with s-IBM had longer gait cycle time, slower gait speed and decreased cadence compared to reference values, and was not associated with age, sex, disease duration or age of disease onset. A significant but moderate association between MVIC values and temporal gait variables was also seen, and ankle plantar and knee flexors were most strongly associated with walking performance.

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http://www.healio.com/rheumatology/polymyositis/news/online/%7B684cdc01-0d82-414a-9ee3-f8eba4e8e8ae%7D/altered-gait-factors-seen-in-patients-with-inclusion-body-myositis

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

The pain

Lost my Darling wife Louise

“My Darling Louise Taken too soon after a long battle with ill health following Meningitis.”
Meet at School aged 11 Married at 17 had 40+ years together, Thank You for being an Amazing Wife Mum Nan Sister Daughter Best friend to many, You fought so hard to recover from meningitis in 2011 how ill you was 5 week in ICU plus Month's in Hospital amputation Charcot foot and more, you was never the same Darling Louise Page how i miss you babe. never forgotten forever in our hearts i love you so much
Survived by 3 Daughters and 9 Grandchildren sleep tight Angel xxxxxxx

Jack, Vera, Millie, Jack, Albert, Janet, Stuart, James,Look after this Beautiful Angel.

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 #15. Myositis on my Journey for Pain relief

Morning, after yesterday’s Day of Hell yep i had a Awful night stiff as a board had to lay perfectly still until i got some sleep, getting out of bed was funny to a degree trying to find a comfortable position to try and stand up lol, Legs are still red its like sunburn above the sock line and goes up to the top of my thighs, swelled legs and knees, awful joint pain still, shoulder joints and arms feel sore painful this morning morphine taken,its going to be a long weekend

Ramble #14 Myositis on my Journey for Pain relief

Well what a day. Worst day in months the joint knee pain is unbearble. eye watering pain, this morning i took the morphine slow release i’m due to take it again now, really fed up with this pain no hospital seems to know what to do, its Easter i’ll have to wait until Tue to try and ring people to chase appointments up. no one should suffer pain like this

Ramble #13 Myositis on my Journey for Pain relief

Tried a day of total rest, not helped at all same story this morning awful joint pain no further fowward awaiting for hospital respopnse to my E-Mail, been at this for nigh on 8-9 months now asking for help and pain relief.

Ramble #12 Myositis on my Journey for Pain relief

Very tired didnt get to sleep until 2am, legs red and unusable this morning Chronic knee pain as usual just got to hope Doctors do something WHEN I FINALLY get to see one that will deal with the pain and other problems, Myositis a pain for sure

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 #7

Another week another Doctor session waste of time. pain pain pain crazy 24/7
working up to taking 50mg of amitriptyline. Nerve test booked in a few week
Endocrinology app come for 2 months time arghhhh.

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.

Diary Of Daily Pain

Diary Of Daily Pain: About Me.  Diary Of Daily Pain, Chronic Pain, Arthritis, Gout, Sweating, Asthma, Hair Loss, Muscle Twitching,  Fatigue,

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 #3

Back to GP Chronic Pain continues pain in my hands Spine Wrists,etc
Severe sweating sweat just running down my face arms chest.
Feel so tired and washed out using a walking stick now cant stand or walk

Noticed Leg Calf's Muscles are twitching as are my ankles
and the back of my hands between the thumb and index finger.
it could one of many conditions CMT Disease to ALS, BFS. Etc

Crushed chest feeling and the Red legs continues.


GP Orders loads of more blood tests Thyroid, Calcium etc and gives more meds.

Amitriptyline 10mg, Naproxen 500mg, Quinine 300mg, Tramadol 50mg, Capsaicin 0.75% cream
Nothing stops the Joint pain

 Referred to Hospital Various dept Rheumotology, Dermatology, Neuro,

(Meds can be given to stop the twitching and sweating but i dont want that i want to know thge cause first)

Ramble #2

Sunday up since 7am Well Another wasted night Chronic pain in the Knees tossing and turning all night might as well just get up.

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