Muscle pain

[2georgepheobe]

I have started with muscle pain in top of both arms really bad and make's my arms feel really week, I'm newly diagnosed so don't no what to expect anyone with advise.

[Yanno]

Hello Pauline

I think this is what they call 'coat hanger' pain because it spreads down each shoulder. Jax suffers from this and has had some massage to try and relieve it. Others may know what causes it, we don't.

Have you contacted your local hospice? Many such as our local one are all about 'living well' and have classes to help. Jax also does seated tai che there which I call Kung fu much to her annoyance!

Take care, Ian

[2georgepheobe in reply to Yanno]

Thanks for reply In I have no contacts for anything except this site even my GP is useless no idea what is coming just going to go to bed with some relaxing music see if that helps .thanks again Ian

[2georgepheobe in reply to Yanno]

Hi Ian one of the nurses has rung me with some advice about my pain ,thinks it could be coat hanger pain and connected with my blood pressure I normally have low pressure so advised to go back to GP .They are also sending my pack first class today and info to GP ,so thanks again for advice. Pauline.

[Glenn2014]

I'm two and a bit down the road . Yes your limbs are going to feel different you need to speak to the doctors about fiseo therapist. It's important to keep your strength in your limbs ,not only legs but upper body as well . Your Going on a strange journey that for sure don't worry about what can't do just concentrate on what you can do.

[2georgepheobe in reply to Glenn2014]

Thank you I am trying so hard and will Carry on but I have no support from GP or treatment .

[2georgepheobe in reply to Glenn2014]

Hi Glenn just thought I would tell you I have had a phone call today from physiotherapy, they have found a lady who would to start working with me so that's good hopefully I will let you no .Hope every thing is OK with you

Pauline

[LouiseMSA]

Hello,

If you'd like to talk about your muscle pain with one of our MSA Nurse Specialists please email them on at [e-mail] . They will be able to give you advice and support.

Best wishes,

Louise

[2georgepheobe]

I went to my GP yesterday and she told me to take co codamol that certainly doesn't work I will get in touch with nurse thanks

[FredaE in reply to 2georgepheobe]

Everyone expects GPs to know all about any disease they are presented with - and so do they. Some of them feel really terrible if they don't know MSA and try to pretend that nothing is happening.

It sounds silly but in that case it is your job to make your GP feel better by making sure he/she knows that MSA is a very rare disease and most GPs will only see one case in a lifetime of work and this is a learning expeience for all of you

The MSA Trust can give them professional information on MSA. Give them contact details and anyone else like the physio. Ask the MSA Trust for some suitable leaflets if you have not already done so and hand them out to anyone who is part of your care team

Always ask them to explain SIMPLY what they are doing and what they hope to achieve. If you are not sure about the explanation ask them to try again. It is very good for people to explain things. It helps them to understand better.

A lot of things with MSA are different from from other diseases because the problem is in the part of the brain which does things automatically.

If that gets it wrong if it very confusing for people looking after you. For instance EVERYONE knows that if you have an infection then you will have a temperature. This is not always the case with MSA - how confusing is that?

Everyones MSA is different and you will find that you get to understand your own particular version sooner than you think. You already know more than you did when you were first diagnosed

This is the worst bit

Bestwishes Freda

Sorry if this is a long post

[2georgepheobe in reply to FredaE]

Thanks for your reply your right I need to go back as pain is worse I have decided which doctor to see and I have always been able to confide in her and she listens and knows my daughter's so I think we might be good together.

Pauline

[FredaE in reply to 2georgepheobe]

So your team is starting to come together - you are doing well

freda