Diary Of Daily Pain Myositis, IBM, Inclusion Body Myositis,
Saturday, 13 June 2015
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.
Monday, 30 March 2015
IBM Inclusion Body Myositis and PAIN.
Saturday, 28 March 2015
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.
Wednesday, 25 March 2015
Links.
https://www.facebook.com/MFSGUK/posts/456782147805952
Tuesday, 24 March 2015
Monday, 23 March 2015
Pain Pain
Thursday, 19 March 2015
And the pain goes on. Polymyositis Daily Pain / IBM / Inclusion Body Myositis pain
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.
Sunday, 15 March 2015
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
Wednesday, 11 March 2015
And the pain goes on
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
Monday, 9 March 2015
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
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