Middle getting very weak??

[JDB1964]

Hi Guy's.. I'm 55 and at a loss and so are the doc's? for the past few years I've been getting strange aches and pains mainly in my core, but sometimes shoulders, butt, legs, inside knees etc. I also sweat for fun and have fog, no stamina, memory issues and so on.

Before this I managed to split my 6 pack so also have a DR. if the DR came as part of the weakness thing, we'll never know... anyway, what ever it is I have appears to like the fact I have a weakness there and plays on it a lot.

Right now, my mid back is stiff and aches for fun.. slight nipping also. My bottom back aches and gives me pain when standing so can't stand or walk for long.. but I think the worst right now is my diaphragm which appears to be 1/2 strength or stiff like the rest of my muscles. but means I can't breath right, bend or twist much.

I also get stiff neck, shoulders, jaw, hands working at 75% a generally my condition is getting worst.

I exercise as much as I can on weights, cardio, pilates, but got to say, exercise does tend to make it worst?

I can't find a thing to ease the pain except maybe epsom salts...

but its getting to the point where it hurts that much and I'm now that weak, that I can't do much around the house.

I've had every test known to man, scans, MRI, bloods but they all come back fine. I look well and my muscles appear to be 100%, but they just hurt so much?

My CK if fine and my weight is constant.. I just don't work any more?

I do get burning around my spine which tends to come and go...

I've posted on here before (I must look back to see what I put).. but feel I'm going down hill and the doc's are coming up with nothing?

Anyone any similar experiance at all?

[Lisalou19]

Do you have a Facebook page?

There’s a lot more activity on there.

Others that can relate and tell you their story .

As with many of these they are rare. Have you seen a Myositis specialist?

X

[JDB1964 in reply to Lisalou19]

they have done a MRI of my back and looked closely at the area where the nerves exit the spine and say its all fine. they did say i had slightly de-hydrated discs in places but nothing abnormal for someone my age... ?

[Lisalou19 in reply to JDB1964]

if you head on over to the face book page, there are stories of people having normal MRI and other scans etc. I have suspected myositis but I don't feel I have muscle weakness, I believe I have muscle inflammation which is causes lower back issues , calve pain, hip pain sometimes speech problems . the list is pretty endless. I am waiting for my next rheumatology appointment and I am going to press for a muscle biopsy. Theres not much point in looking for weakness when all I feel is pain and struggle with some muscle groups. But hey im no expert. x

[JDB1964 in reply to Lisalou19]

will take a look, thanks.. I have no inflammation markers at all, so in my case I guess its not that and I did ask for a muscle biopsy at my last review. but the answer was, they need to know what they are looking for before they will do one?

I'll move along to FB.. thanks

[Lisalou19 in reply to JDB1964]

If you can’t find the page let me know.

It really does not help you with them saying they don’t know what to look for 🙄

I’m not sure on the spelling but one of my rheumatologists letter says:

Amiopathic Myositis

[gillianTS in reply to Lisalou19]

Hi Lisalou19

Your symptoms sound very much like my own, I have recently had emg test where the consultant was puzzled by my muscle inflammation and said it might be through my autoimmune condition and thinks my referring neurologist will do more testing and possible muscle biopsy. Now waiting for follow up from referring neurologist. Maybe he was puzzled because I already take Azathioprine for another condition, I was surprised/shocked by his reaction since my Neurologist felt confident the emg test would come back clear and that is how I felt going into the test, that it was just being carried out as she wanted to discount this...

I also noted on your other posts about frequent urination and bloating and I have this too. Have you been given any answers to the frequent urination? My bloating and wind I believe is mainly due to diet, cutting out all refined carbohydrates has helped greatly, no bread, cakes, crackers, no pasta, potatoes, not anything that includes flour. Recently through one thing or another I have slipped back into eating occasional bread and crackers and I know about it my body is complaining. A colonoscopy a few weeks ago was clear of everything including biopsies taken , the only thing was confirmation of diverticulitis something I was told about in my 20's but never confirmed through colonoscopy.

Interested you have a diagnosis of lupus too, this is what I was initially told I had as well as fibromyalgia, both since discounted.

[Maggie7171]

Hi JDB1964,

I am so sorry you are having such a rough time.

Not sure what tests you have had. Polymyositis and Dermatomyositis do not affect the hands or feet.

Those symptoms are usually with IBM which is much harder to treat. (Steroids don't work).

In order to get a true diagnosis, MRI's and muscle biopsy are needed.

I live in California and that is our protocol. I was diagnosed with Polymyositis in March or April. I am now weaning off predisone down to 7.5mg for 60mg.

I have much improvement with leg muscles, but upper back also still hurts and back of neck muscles. I know I will never be back to normal, but at least now I can get off of a chair, bed etc. The fatigue is the worst part.

Polymyositis affects core muscles, neck, shoulders and thighs.

Please let me know what treatments and test you've had so far.

Best,

Maggie