Do you have tremors? Please help!

Hi. I have found out I have SS this year and have a number of problems - eyes, gastro, etc. However the biggest thing that worries me is tremors that have developed. I have tremors in hands and legs, worse on left side. Feels like they go up into my back. At times, particularly with exercise, my legs tremor and spasm madly - and I am almost unable to control them. I am also woken from sleep by the tremors in my back. I am a 44 yr old woman with small children and am pretty scared by what is happening.

My doctors are not even sure the tremors are from the Sjogrens.

I would very much like to hear from anyone else with tremors, and details about; where they are, how frequent they are, what triggers or aggravates them, how quickly was the onset, how long you have had them and any successful treatments tried.

Looking forward to any feedback and suggestions.

Thank you very much

7 Replies

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  • Hi there,

    I have severe tremors in my hands and feet. I was diagnosed last year right before my HSC at 17 and could not write any of my exam as,my hand would shake erratically, turn blue then sting for hours. I was taken to the emergency room a few times because I lost all feeling in my hands. I was told to warm up my hands straight away and massage it slowly. I had to get nerve conduction treatment at the physio. Have you tried flaxseed oil? That helps to strengthen the mylein sheath coating around the nerves which is one of the causes of tremors. I find that if I write too much or carry heavy things that can induce a tremor.

    I hope that helps!

    Im still trying to find a solution as it is happening in my right hand now, which doesn't help as im studying law and writing is a must! Haha.

    I see a traditional Chinese medicine doctor and she is helping to try and tame the tremors, maybe that could help for you.

    Hope everything works out xx

  • Hi Andi93,

    I certainly feel for you - so young.

    I am not sure what nerve conduction treatment is, but did it help you?

    I am taking Fish Oil which I think has the omegas, similar to flaxseed (????) but will ask my doctor.

    Good luck with your Law degree - you must be a clever cookie.

    Aim4Health

  • I do get some spasms in my calves and feet but this seems to be related to low calcium. I had hyperparathyroidism just before my Sjogren's was finally diagnosed (I had so called idiopathic dry eye for 15 years before that!) and had a couple of my parathyroid glands removed. My calcium levels are OK when they test them but if I haven't had the equivalent of 3/4 pt of milk for a couple of days then I do tend to get spasms. It might be worth getting your calcium checked because that one is easily treatable.

    I would be suggesting a referral to a neurologist if your doctor cannot come up with any sensible suggestions.

    Good luck.

  • Thanks anhydro. Based on advice from this group am going to a neurologist soon. Will mention the calcium thing. have been taking lots of supplements but not calcium.

    Thanks

    Aim4Health

  • I was having tremors on my right side. My neurologist has diagnosed me with early stages Parkinsons. Luckily it's been caught early so the medication I am on is having some effect. See a neurologist straight away.

  • I've had hand tremors most of my adult life,described many years ago by a neurologist as "benign essential tremor" which means nothing much.

    It is getting consistently worse& has interferred with my life as an artist,writing & anything requiring fine motor skills.Heat & stress can make it worse.Sometimes I increase the medication,Propanolol 40( a beta-blocker) but prefer not to.

    I was told by the diagnostician of Sjogrens that my nervous system is caught up in it which made perfect sense to me.

    Moisture

  • hello :-)

    I've been finding that i have been getting them as well but in my arms and hands. My hands shake sometimes and my arms go all weak and tremor a little as if ive just been lifting weights. Sometimes my body will feel like the earth is moving under my feet even in shopping centres.

    Im not on treatments for that but im writing down the different things that have been happening, ive also been suffering memory loss a bit to and really itchy and dry skin. I've only been diagnosed the last month or so.

    Kellx

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