many thanks for your replies where im up to next. at 20 weeks since onset of this thing

my next stuff is podiatry and phisio but i do get conserned about the toes going red and the weekness in the mussles of the leg like with dematomyositis some times like now my toe ends are throbbing like mad today because ive been to the swimming pool in water walking up and down little swim on back then later on i had a little walk and later like now my toes are having a flare up again at the ends.

i dont know but if i put orthotics in my feet they feel like they would rub away not to mention teeth that have to be pulled. You wonder how all this will end its weird from something that started as an ankle strain as an onset But i am keeping as carm as possible and only doing what i need to do. yeterday i fitted our new fridge in. i now know that was a bridge to far i think down on floor on side and all that.

This little lot has very similaritys to dermatomyosits The more i try to get strength back in legs ie quad and vmo the more problems arise.

plus still the bad sweating at nights

regards john

6 Replies

Hi John. Your problems always seem to ring a chord with me although I'm not nearly as physically affected as you are. I need to take more exercise - your posts always put me to shame!

Are you diagnosed with Dermatomyositis or is it still Lupus? I don't know that much about the myosotis diseases but I do have some of your symptoms such as the sweats, muscle weakness and trouble with toes (mine go white) and I share some of your sensory issues I think although yours are more musculoskeletal - mine seem to affect my small nerve fibres mainly. I have just learned that I do definitely have Sjogren's Disease so it helps to read up and learn more about this but also to find out what else could be overlapping.

What medications are you on and has your doctor been helpful? It's great that you keep going with the swimming but could the chlorine be affecting your skin badly perhaps? Have you tried doing some dietary experiments such as cutting out gluten completely? Just some thoughts. Twitchy


dont think the poolwater is affecting me ive just walked back from the garage and my feet on the bottoms was like walking on marbles and the other leg the better one im leaning that bit more today compensating the rumi appointment well she thought i was a bit over the top and was looking at shoe insert for tibia tendonitus but that wont give me any mussle power in this ankle and leg it feels like i need a new knee after all i did have a clean out on that and they said i would need half a knee but i pulled it back without on perhaps that was the pred i dont know I am not diagnosed with demymyosotis but the profile is verry similar to this in deed.

the teeth gums seem to have receded more since i whent to dentist and i know i need some teeth out now which i put down to somthiong to do with bone as they started bits breaking off regards exersise I BLOODY PUSH IT i sometimes dont want to do it but i do it and pay after. what started out as a ankle i thought sprain must have been this lot coming on their was other little things i dismised as old age thaqt i should have taken notice of and didnt. And i also belive the rupture operation started this off again could be disks in the back but i never had any problems before this. Takes me a bit in a morning for the body to wake up if you know what i mean sit their let it wake up I didnt swet as much last night but i was certainly sore on the feet after the day glowing red and clubbing Now rumi says no clubbing of feet well their is dont know why she said that. how is your walking distance? how far can u go without wanting to sit.


I can walk a really long way John but it becomes very sore after a few miles. If I'm on uneven ground my brain gets in a muddle so I just have to stop until I can work things out properly. Strongly patterned flooring is a disaster for me! The urge to sit down is really much worse when I'm standing still. The pain is worst when I'm still too. I can last about minute max standing then have to lean or even sit on the floor! I think it's my ankles but I just feel faint and like I'm going to fall if I have to stand up for any length of time. I don't have any deformities yet apart from one very large knuckle and fingernails on right hand all facing east!


Good god a few miles I dream of a few miles oh how I would love that again doing me walks round the lake near us and take me classes that is really good

If been using 2 walking sticks today to get round I can stand longer than 2 mins but walk distance hell no my feet right now are killing me and knees they don't know which way to walk propped I have to think about it as I go then sit down for someone as active as I have been for 4 years free of it it's hard to take in really is I've never felt bones that feel so dry and I'm still taking my ASCAl d3 suppliment


We all have things that we can do to make ourselves feel better John. I wish I could swim regularly but I can't bear the cold or the chlorine - which I'm allergic to. I'm not good in artificial lighting and get totally disorientated in changing rooms.

You should ask your rheumy about demymyosotis if you think it sounds like the right fit for you. I knew as soon as I read about Primary Sjogren's that I had this disease rather than RA. But it's taken five long years to prove it!

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ive noticed today that the things i had on my fingers are not as prominent with inflamation that dosnt affect my hands from gripping not flaired as much but we will see later on in the day but im a bit bushed today body wise whent to the gym again few lenghts back stroke to gep the leg mussles going. but that left hand knee and ankle feel like hard skin in ther with some sort of mash that dosnt feel like part of my ligaments and a bit head dizzy but hey im able to go to gym aint i which is good i suppose I just keep wondering if its the predistone that im still withdrawing from as ive not taken any for about a month and im not producing natural cortisol yet who knows I belive this can make you week as can your thiroid gland. But i notice sonme of the things you can do i cant i feel like having a rest on the bed at the moment but i wont do that. and i can climb the stairs which i could not do before 17 weeks ago. im at podiatry on 26 so will have to see what she says about my feet. It could be i picked somthing up a bug or somthing or when i have been walking picked up lime desease i dont know but each time i get this it is sort of stronger than the last time it hit ie it gets more powerfull in damaging me.


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