Does anyone else have experience of these symp... - Myositis UK

Myositis UK

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Does anyone else have experience of these symptoms?

Verysorelegs profile image
4 Replies

At current I have poor mobility due to odd sporadic leg pains that follow no pattern but are bilateral in the calf muscles with muscle atrophy in both calves. My mobility is easier in the morning before breakfast and deteriorates as the day goes on.

I have Intermittent temperature change in both calves and feet leaving them freezing cold. And also occasional cramping.

I suffer constant stomach discomfort, only a handful of foods now tolerated. Meat. Celeriac. Swede. Courgette. Carrot. Now make up all three meals of the day.

I have weight loss. Insomnia. Scaling on my knuckles and knees. Elbow pain.

Depression and hair loss. Sudden body temperature changes and a very distinct pin prick type pink rash on my legs when I get out of the bath.

If new a food is added then leg pains increase, mobility decreases and other symptoms occur, urgent diarrhea, severe headaches, burnt mouth and tongue sensation with sore lips. Mouth ulcers. Severe stomach pain.

Does anyone else have these symptoms?

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Verysorelegs profile image
Verysorelegs
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4 Replies
Catpuss66 profile image
Catpuss66

Have you seen a doctor ? Think most people with either myositis or connective tissues disease can relate to those symptoms , but you need bloods taking especially with weight loss.

Verysorelegs profile image
Verysorelegs in reply to Catpuss66

Hi there

Yes, under medical investigation from a variety of different medical fields as they try and work out what’s happening

Catpuss66 profile image
Catpuss66 in reply to Verysorelegs

So have you any antibodies? I have a diagnosis of primary sjogrens with renal involvement but I have GI issues joint swelling & pain, rash on neck , and knuckles muscle weakness , I think I have Mctd , which is an overlap of lots of different AI issues . Join the myositis Facebook community forum very knowledgable & helpful group even if you havn”t got myositis. Can be a long road for some people.

Verysorelegs profile image
Verysorelegs

Nothing shows on bloods yet (didn’t think diagnosis would be that simple 😓) just the crippling symptoms . Under gastroenterology and rheumatology now while they try and work it out but am also doing a lot of research and looking at other ideas for diagnosis such as a functional medical doctor

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