PLEASE READ: Muscle PAIN

Here is some Congenital Myopathy info

Hi Fynn,

Thanks your brave posts. Sorry you are having such a
tough time!

It will get on top of you at times. Sadly many on our
forum will understand how you feel. No easy answers I am
afraid or we all would have taken them years ago.

Often people come up with a range of “coping strategies” to
make the best of a bad situation. My Care Advisor back in
2010 came up with her “Alternate Day Strategy”, simply to
have a days rest inbetween days of activity. To never arrange
appointments on consecutive days. To have less full days
inbetween full days. It has worked! Really put it into practice.

The best strategy I have come up with in my own is to listen
and “take on board” the advice of the O.T.’s , the Physiotherapists
and the Care Advisors. Between then they have changed my life over
the last few years. I worked from home for many years. So many things
are possible on the internet these days. Maybe that degree you mention.

Thanks for sharing. There are always will be difficult times. Keep
chatting to us. We hope we can help.

Hi Flynn,

Your story seems similar to mine. I also have an unspecifyable myopathy, and I also feel this “lactic acid burn” (as I call it) when walking the stairs or drying my hair with a towel. I walk around the house, but more than 100 metres will cause great heaviness and fatigue in my legs, and my gait becomes irregular. Apart from this I also get muscle fatigue/pain when chewing, writing, and generally holding up my head. All this has deteriorated badly in the last year.

I have discovered that doing too much will cause constant muscle pain, especially in the evenings. Reducing my level of physical activity made me nearly pain-free. That obviously leaves me with the big problem of keeping as fit as possible, and so I try to exercise at a level that is below the pain-threshold. Have you tried this?

You say you are very fatigued. This enormous tiredness and general fatigue is also very familiar to me. It is not strange that you feel depressed when this goes on for a long time. I have learned that exhaustion will make you feel unable to deal with life, and therefore desperate. Please realize exhaustion and desperation are closely connected! So for me making sure I don’t get exhausted also keeps depression at bay. Fox’s idea about being active on alternate days really helped me!

Not being able to work is also very frustrating for me too. Still wrestling with that one I’m afraid… I am often so tired that my whole brain fogs over, and I can’t get it to do anything remotely complex. At the same time I’m craving some intellectual action

By the way: I don’t think you need a reason to be depressed. It just happens… And regardless of the causes something can be done about it. If it is there all day every day it may be time to ask for some help. Dealing with this alone makes it so much harder!

genista

Yeah that is great, but still there is the frustration of not being able to do something with your competencies…

I was trained as a classical singer/singing teacher, but I can’t perform or teach because I’m not able to make reliable appointments, and because I can’t work for more than an hour a day. For my intellectual stimulation I sing while accompanying myself on the piano. And I (slowly) read non-fiction books. Also I’ve recently started some creative writing. I’m hoping that will give me more of a sense of “output” as opposed to just “input”.

genista

Best of luck with your up coming exams. You’re doing better then me, I keep thinking about doing an online course (cannot get to a college) but my motivation is lacking, because there is no reason to do the course I lack the mental resolve to get on and do one.

Sadly it is the nature of this disease to slowly rob us of life skills, we can but adapt and manage to our best. Try not to compare your situation with others, the disease is unique to the individual, and each individual is unique within the human race.

This dang chilly weather does little to help either.

just wanted to add to this- sounds exactly like me! ive been told I have a genetic myopathy and more investigation is happening but it’s been a long wait so far.i study so I can achieve something but the brain fog is the worst part of the condition, it’s like cfs/m.e. on top of a muscle disease, according to my GP but until neuro knows what the md is then they can’t explain the fatigue.ive had breathing checked when lying down and it’s ok but am pushing to get a sleep study of my breathing done because many inc Drs have told me it may all be down to a short burst of apnea overnight due to respiratory muscle. so the carbon dioxide builds up and one gets sleepy. who knows. it’s been like it ten years for me! I thought I’d never work again but recently took part time work. it’s exhausting and I’m often off ill but I feel less depressed. I also had burning pain esp in my thighs for years. I was on so many painkillers. (amitriptyline was great but left me sleepier!) but…. I get less pain now. and was never explained to begin with- neuro always told me it didn’t fit with MD. others on here have disagreed with that! I think it’s got better because I naturally do less, I accepted I was mildly disabled and began the pacing as in one day busier than the next, and also perhaps the muscle is a bit more, I don’t know, dead now? again- who knows. I still walk and chase about after kids. I’m just slower and a bit wobbly and sometimes walk like a pirate! try to take each day as it comes. I know it’s hard to do that. if in doubt, sleep more and be kind to yourself! what are you studying? pippa

Hi my name is chantel for one year or more I’ve been having very bad muscle pain kind of like flu pain but times 1000 it’s very painful and I have had many painkillers but sometimes it works a little buy taking the edge of but most times it don’t do nothing I’m hoping someone goes through simaler pain so I can get help I need help I feel like I have no option but to live with this pain!

Well said RedBig.

MIke