LUPUS UK
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Tremors

Hi everyone feeling down at moment not sure if it's because I have been off work sick last week and had time to sit and think think it's the tremors have started to wonder if they have made the correct diagnosis does anyone else on here suffer with these would love some feed back please x

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Hi Hodgson

I can't help you about the tremors but I can suggest that if you have any problems with your employer about being off sick then go to your local Citizens Advice Bureau who will help you. I hope you feel better soon.X

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I to suffer with tremors & the jerks do I no how you feel with everything else I find it hard to cope.hard to get to see Dr phone at 8am can't get through then when I do see him he looks at me as if to say "WHAT NOW" in fact he once said you will never get back to work he didn't think I heard him wish I had of said something.I get to see my consultant on the 24th he is great.you have my sympathy all I can offer from the heart take care

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I occasionally get the tremors and we usually just laugh at them. I also often get muscle twitches which can make any part of my body jump, they can be unnerving :)

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yes ive been getting them more often than not lately , im waiting for dr to ring me back as we speakx

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Hi,

I get tremors and twitching.

Mostly this is as the day goes on. Strangely the twitching increases when I ie down.

X

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Yes, i get tremors inside my abdomen, which is so weird that I can't even explain it. Twitches too. You're not the only one. If they bother you a lot, ask your doctor about anti-convulsants, they could help. Steroids can help too.

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They are awful really don't like how they feel thanks for taking time to answer

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I get tremors inside my abdomen too, strange.

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What does your doc say about it? I'm yet to mention it to my rheumatologist...

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I get them very occasionally so I have not mention it to him yet. Will mention it next time - in December but I don't expect anything from it. I think it is again one of those things. I remember the first one I noticed was about 15 years ago and since then I just got it here and there not too often.

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Hi Hodge son, I have awful tremors at times, even my head does it. I was worried but believe it is part of lupus. My whole Bobby jerks sometimes as well. Take care x

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Thank you it does put my mind at rest take care

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Hi, I have a tremor in my right arm and both hands and a lot of muscle twitches which are active at night.

I have an undifferentiated connective tissue disease; limited scleroderma with elements of lupus. I was told my 'shaky self' was due to fibromyalgia. I am realising that no autoimmune disease is clear cut! I wish you luck and good health.x

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Go see ur consultant they may send u for an MRI or CT scan. Then u can ask ur office to send u to occupational health to access. But u need to get better first b4 u think about work. Takecare

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Thanks it helps so much when people take the time to answer think you feel a bit lost at first or it takes some time to sink in take care

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Did you spend any of that time on the internet? You must be your own advocate as you care more about yourself than does anyone else. I have actually reversed my fibro with diet, cleanses, myofascial release techniques and now systemic enzymes. All of this I discovered by spending a bunch of time digging around on google.

I am following the AIP (auto-immune protocol) paleo diet. Sounds like you would benefit greatly from it. Dr Wahl was in second stage MS, in a wheelchair and she reversed her MS with it. Now she is out riding bikes. Impressive story. You can find her talking about it on a youtube video. Just search Dr Wahl. Good luck to you. If you do the work you will improve. All is not hopeless.

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Hi hidgson, funny you say your having tremors, ive just come back from my doctors just now, my hands are shaking like crazy and my whole body is shaking like on a vibration plate in the gym...doc rung rhumy, i have lupus sle, serousitus lupus, raynards etc and im on steriods, planquinell, antriptaline, omprazole the list goes on, doctors just done a tpt test, full bloods, b12 etc she calles rhumy whos given me emergency amp for next tuesday as they are concerned, im also starting imuran even thought my tmpt levels are low as they think my situation needs to urgent controll so they are going to start it asap.....with the tremors its awfull i shake when im holding anything....it looks like im very nervouse in work with the shakes and trying to still hold down my job, cant afford to take time off as i dont get paid...hows your tremors have you seen your doc yet

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Hi willow wag thank for taking time to answer doctor has referred me to see a neurologist so just waiting for appt doctor has put me on sick for another 2wks so let's hope I get some answers I am a bit like yourself cannot afford to be off work but what do we do when you don't feel well enough to go into work hope you get sorted as well take care x

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Hi,

Yes I get tremors left arm and hand in particular. Worse when I flare obviously, when Im tired or have tried something too physical.

Hope you feel better soon. Xx

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Thank you doctor put me on sic for another two wks so fingers crossed take care

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Hello, I have quite bad tremors in both hands, especially when I am tired or unwell, (that's a joke as I always feel unwell) I also have muscle jerks, especially when I am falling asleep. I used to think it was familial tremor as both my parents had it, but it is getting worse, and you have to follow the dropped tea trails around my house now. My husband says I need a two handed cup with a lid, so I don't make such a mess!

It is also embarrassing when eating, especially peas or rice, they end up all around my plate.

I do try to laugh at it, but sometimes it can get me down. The Dr's always ask me why I am so shaky, but don't seem interested

Hope you get some good days, and your workplace understands.

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Thanks it's just nice to know your not on your own and theirs people who understand how you feel take care

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I believe my tremor is caused by mycophenolate that I take. Not sure if you are on any medication, but could it be a side effect of medication? Good luck :)

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I was diagnosed with SLE 6 months ago, almost notmal labs, but all the physical symptoms. Am taking cortisone and Plaquinal. The tremors started with the fatigue in the beginning, but have now progressed to almost constant shaking hands occasionally feet, leg. I had brain mri, shows lesions, but no lupus spread. Neurologist just gave antisiezure meds. Confered with second rheumy and he is questing the lupus diagnosis with such normal labs. meanwhile, very fatigued, shaking hands, not much life! Anyone with idea?

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Hi I have just been referred to see neurologist doctor said they will test for MS and Parkinson's I have been having body tremors for about 2 wks was diagnosed with S L E about a year ago said they were checking that have not misdiagnosed fingers crossed not sure what would be worst at this moment in time I hope you go on alright take care

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Over the last 12+ month my tremors seem to be getting worse as are the twitches - is there a connection with the two? I await results from MRI to see if I get 'any' diagnosis. Would be interesting to know if your (or anybody else's) tremors are more prominent at any particular time of day. How long do they last for? Is there a pattern??

I can tolerate the twitches, but the shakes sometimes last a number of days - though I would describe it more of a 'vibration', I find this uncomfortable. Mine will start either at the rear of the knees or the inner side of the elbows.

I have no resolve, so too look forward to suggestions (unless the doctors help in the meantime)

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