Some days I can't even make a fist

Hydrotherapy and why it helps myositis

My twice weekly hydrotherapy lessons have been helping my myositis. I thought it was but this was not proved until I had to miss 12 days and started getting more tingling in my arms and legs, upper back pain and general aches and pains again.

I am no doctor or physiotherapist but I have asked the physiotherapists running the classes why hydrotherapy helps myositis and this is what they had to say...

What I'm learning about myositis and muscles

Today the physio explained a few things to me clearly in ways that I could understand:

- that proximal muscles also means core stomach muscles which is why my stomach muscles are weak.

- that by exercising I should not expect to increase muscle tone, like ordinary people, but just prevent further muscle deterioration

- that the reason my joints and tendons are suffering is that the muscles are not working properly and therefore putting undue work on these other parts.

I hope this has helped someone else understand a little about muscles and myositis. If so please let me know here in comments. I would love to hear from you. This is apparently a rare condition so it would be great to catch up with others who have it. 

I don't understand Myositis

Is it an inflammatory myopathy?
Is it a muscular dystrophy?
Is it an autoimmune condition?
I don't know and I don't know why one day the pain in the shoulders is SOOOO bad and 3 days later it is the wrists or the thighs. The frustrating thing is accepting that treatment is limited to pain management and expensive physical interventions.  The pain is so bad it makes you want to...

It is all about the muscles

It took me 3 days to recover from 4 hours of work. My arms ached all the way down, my shoulders ached in front and back, my legs ached from hips down to toes and my head and neck ached.  I actually felt like I had been run over by a bus. So the idea is to rest but the pain in muscles makes it almost impossible to lie down and relax. So what do you do when you are having one of these days?

Feeling physically strange

Sometimes I feel like a fish out of water: I have a body but it is not working right. Actually being in water is about the only place I do feel like all my muscles relax - especially if it is warm water. Then I feel so good I have to remind myself not to overdo it as I start jumping around and exercising and swimming and the next day my muscles are too fatigued. Soon I will start hydrotherapy exercises at the hospital pool. I am looking forward to that.

Knowing what it is helps

On January 1st, 2010 I listed my most concerning symptoms to tell my specialists,  as still no diagnosis after many years.  It is a long list of 18 symptoms. It is interesting to look back as after over a year of trying prednisone, acupuncture and most recently Azathioprine , a drug that suppresses the immune system, all these symptoms still persist.

This may seem depressing but there has been a major shift in me just knowing that I have a correct diagnosis this time, from a muscle biopsy. I can most days not concern myself with the symptoms, just take my pain killers and get on with my day. 

My pain specialist says she has seen a great change in me just knowing and not searching for answers anymore and also understanding this is for the long haul...so I think we call this acceptance.

I am a work in progress - I am not my disease.

Essential Exercise

Went in the pool again today as it is what the physiotherapist suggests to help build up muscles again. Mainly walking sideways - I think it is meant to build up the glutes. I also do specific arm exercises and squats and leg stretches daily. They are kind of like exercises for seniors, but hey I'm getting there. The rehabilitation specialist says it is more important to do exercises for a person with myositis than a person without, to build up the muscles that have not wasted. There is a large inward mark on my right thigh which is muscle wasting as large as the palm on my hand. It took me ages to find out what it was as the G.P. and rheumatologist did not know.