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.

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

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. : (