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.