Excessive Hand shaking: I have a list of symptoms... - PMRGCAuk

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Excessive Hand shaking

Yellowbluebell profile image
50 Replies

I have a list of symptoms from pred and pmr but over the last couple of weeks my hands have started to shake excessively. It became very noticeable when I tried to put a cookie my grandson had made in a paper bag. The whole family jumped on it so wondering if this is normal or just me?

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Yellowbluebell profile image
Yellowbluebell
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PMRpro profile image
PMRproAmbassador

Well - it's not normal, is it? However, corticosteroids can lead to tremor or make an existing one worse. Are you on any other medications that might contribute?

Blearyeyed profile image
Blearyeyed

Although the tremors ,or shaking of hands, can be useful at this time of year when sifting all that flour and icing sugar for baked goods , if it is noticeable and affects your ability to do everyday things it is worth having it checked out .

PMR pro , always spot on , some people can get tremors or shakes with steroids or big changes in the doseage .

But if this is new , it is unlikely to be a simple steroid side effect .

And again , as PMR Pro says , it can be because of the interaction of steroids with other medications or a side effect to them .

Have you started any new medications or increased their doseage?

I regularly do a Medicine Check , now my meds can fluctuate so quickly , I check if any of my older , long taken drugs are known to interact with new ones or can cause side effects after they have been taken for along time.

Doctors regularly prescribe certain medications and don't think to check your older medications but I have had to make changes because of these sorts of side effects and found the interactions .

There is the possibility of other non PMR / GCA related issues or new developments in the PMR/ GCA so it is important to check with your Rheumys office first , and then they may choose to see you or give you recommendations on what to do. Contact the Rheumys secretary by phone and give her a message for the doc and ask for the Rheumy or her to ring back with a response as soon as they can. If you don't hear back in 48 hours ring back , she may have the answer but in busy mode had forgotten to call.

If non PMR in their opinion , or non steroid related they will recommend you go to the GP for a check and mightvorganise a quicker routine Rheumy check. Get it on your records

( always best to get any new symptoms on your records , if it isn't written somewhere the consultants have a habit to ignore it)

They will probably just want to get you to keep an eye on it , but do the usual MOT as things like tremors can be a sign of something simpler , like a UTI or kidney and bladder infection , especially if you have noticed you are having more lower back and hip pain and going to the loo more at the moment.

Take care , and keep warm , we can't have our Mighty Chocolate Mouse going downhill , the PMR / GCA Avengers League need you!!

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

I replaced my tail and whiskers with Apple laces and got jumbo chocolate button ears now so ready for anything the PMR/GCA Avenger can throw at me!! Also got choc supplies restocked so I don't feel like chewing my tail at night. Mighty chocolate mousexx

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

Yes but as I have put on my serious hat today not your coconut one , was the advice helpful and what do you think you will do?

Can't have us both falling apart!!

With genuine worry and concern , often shaky BEE xx

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

Yes you were helpful, very helpful. With my serious hat/head on I am fine. Oldest daughter nearly had a breakdown over the shakes and then the others started. I hadn't really taken much notice but watching me put a cookie in a bag was too much for them. It's not all the time and it hasn't stopped me doing anything but am ringing doctors in the morning just to check.

Love from Debbyxx

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

Super my Lovely ,

Got to keep you in tip top condition for all that leaping buildings in a single bound that we have to do to keep Doomsville safe from the PMR Nasties ( after serious increase of Pred , Brandy , or Both!!)

Just come up with a new plan off how to explain / show to Doctors where my head and joint pain of different types is using pictorial aids , in the hope that it can get through their simple ABC mindset in a way they understand.

Sort of felt pen and crayon version of an MRI !!

Better watch it the way the Health Service is going they might bring it in as common medical practise.

Gentle Hugs , and don't overfill those coconut mushroom bags or if you get the shakes you might loose valuable confectionary to the back of the sofa!! xx

( To anyone who doesn't know YB and myself reading this reply , we love a bit of

' Gallows Humour' to keep the stress at bay and the last comment is part of our daily therapy and not meant to cause anyone offense !)

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

Not sure if "gallows humour" really covers the things we have covered in the last few days but it is very good for the soul and the fact that we were already half way to being sectioned helped!!

I checked the sofa looking for lost chocolate a couple of days ago just before I ate my whiskers in desperation. Zach hasn't been here for a day or two so not much chance of finding anything interesting. Plus I have restocked the empty chocolate stores (and hidden some in my new secret stashes) so should be alright for a couple of midnight snack runs (nearer to 3am usually but there isn't a name for that time)

Diagrams might be the only way to get through to some doctors. Remember they have been molly coddled by the NHS from the age of 21. The staff in many hospitals treat them like gods. Most doctors I ever worked with have needed.a diagram for tying their shoelaces. They don't get any better with age!! They just yell louder and stamp their feet more often.

Have you got everything ready for your appt? You should get some sort of diagnosis this time if every one has done their work. Keep strong and refuse to leave without them resolving this mess.

Big hugs

Yellowbluebell

PMRpro profile image
PMRproAmbassador in reply to Yellowbluebell

"The staff in many hospitals treat them like gods."

None I worked in...

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

I have got some stuff sorted as much as I have been able to with today's bout of fatigue but need to reserve the last of my energy to brave the shower , can't go stinky can I ?

I will try and get those answers and not allow my Seek and Destroy Mode to kick in if they delay yet again and force me to wait and jump through more hoops. Although it is so far beyond ridiculous now I am surprised my Doctors haven't been signed up for Christmas Pantomime season.

If they don't confirm what's going on I will have to insist they do something about the pain management and steroids as the head and eye issues are beyond a joke .

It may not be the Midnight , 'Witching Hour' but how about calling the 3am binge , 'the Wispa hour' instead?

Bee xx

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

Might call it the wisps hour because at the moment it's called " debby/mum/ Nanny has eaten it all" so anything else would be great.

Daisychain12 profile image
Daisychain12 in reply to Blearyeyed

The day you offend me is the day I know I’ve lost the plot xxxxx

Yellowbluebell profile image
Yellowbluebell in reply to Daisychain12

Both Bee and myself have got a slightly warped sense of humour but the last thing we want to do is upset anyone. We find, for us at least, laughing at ourselves makes our illness a little easier to cope with. If we can make others laugh as well we love it. We are serious when we need to be and will always help anyone if we can especially Bee who has had more experience at this PRM/GCA than me.

Have you sorted out you tablets now. Hopefully if you use a pill sorter it should help keep things organised. Debbyxx

Daisychain12 profile image
Daisychain12 in reply to Yellowbluebell

Yellowbluebell

Darling I feel for you. It’s enough to deal with everything else we don’t want any issues with new stuff. Pls can you tell us how you get on with doc. Xxxx

Yellowbluebell profile image
Yellowbluebell in reply to Daisychain12

I will do. Just getting an appt is an achievement at our practice. Unfortunately our receptionists decide whether I am ill enough to see a doctor urgently. Into battle I go!!!Debbyx

Daisychain12 profile image
Daisychain12 in reply to Blearyeyed

Oh what wonderful advice xxxx

Yellowbluebell profile image
Yellowbluebell in reply to Daisychain12

Bleary eyed does give excellent advice doesn't she. YBxx

Daisychain12 profile image
Daisychain12 in reply to Yellowbluebell

Darling it’s obscene that you have bloody strife with receptionists about whether you “ merit” an appointment. I know you are up to the challenge and am thinking of you. I Love any off beat humour and speaking for myself I can assure you that you would have to work very hard indeed to offend this old chook!!! Pls don’t either you or Bee ever change one bit. Now let’s get this “ shakin’ All over” sorted!!!!

Yellowbluebell profile image
Yellowbluebell in reply to Daisychain12

Seeing him tomorrow so will have an update by the time you come back online tomorrow.

I am glad you are not upset by our mischief as I don't think we could change to be honest!!

I am really stroppy and get annoyed by the receptionists so I dread to think what others feel when the dragons don't warrant someone's needs as important or urgent. They don't realise for some people it's an ordeal just getting out the door.

Love and hugs Debbyx

PMRpro profile image
PMRproAmbassador in reply to Yellowbluebell

And when exactly did they sit their medical degrees???????????????????

Daisychain12 profile image
Daisychain12 in reply to Yellowbluebell

Debby they can be a******es. I had a right cow try to intimidate me last week. She just kept talking over me and I couldn’t get a word in. Awful tactics. They hold so much power when people are sick I try to be lovely to them as it’s a hard job but some of them seem actually sadistic. Xxxx

Snookerball profile image
Snookerball in reply to Blearyeyed

I've had them for the past 3 weeks or so and I kept it quite from the wife. Only small shakes so if they get any shakier which I hope not and up to now haven't I shall seek doctors advice. Iam on steroids pedal 20 m a day.

Blearyeyed profile image
Blearyeyed in reply to Snookerball

Good so glad you asked , if you are worrying about it , it won't help the shakes so talking to someone will help.

Keep an eye on it, best thing is to monitor when it happens over three or four days , and I know it might sound mad but write down what you were doing when it happens and if you had anymore pain anywhere else or you were generally feeling more tired at the time. As muscle fatigue in the shoulder or back can also cause hand or leg tremors.

If it happens from the same sort of movements or doing the same jobs it can literally be to do with your nerves responding more because your muscles are not too strong or your fatigue means that your body is not responding as quickly as it should.

Drinking more water , but the mineral kind helps too , and getting your satsumas at this time of year. Nerves and muscles like fluids , potassium , magnesium and vitamin C.

If it is still a worry or gets in the way with your day to day things , or happens for no apparent reason or while you are still , message back on the post , let's talk again and please don't be shy of going to the GP to let them know , even if it turns out to be nothing serious it is better for them to have a record of it in your notes in case it happens more regularly in future.

Thanks for feeling you could speak to us on here , and always do ask a question when you feel a bit concerned it will probably put your mind at rest and as they say,

' Better out than in '

Take care and let us know how you get on. Bee

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

Hi snookerball, my shakes have been over a about a month or so. I didn't say anything to anyone and just blamed the pred. It's only when I had a bad shake and family saw it that I said anything. Like Blearyeyed has said it's important we tell someone about it. I asked on the forum and was told to get myself to gp. I wouldn't have gone if the guys on the forum hadn't said to. My gp is keeping an eye on it and I am happy with that. He didn't think it was time wasting or the likes and didn't panic either. There are so many people on the forum to help advise and reassure. See your gp and let us know how you are doing. YB

Patience47 profile image
Patience47

I had hand tremors when my dose exceeded 12mg. ; no tremors under 12mg. ATB

Yellowbluebell profile image
Yellowbluebell in reply to Patience47

Mine is 15mg so it may just be about the dose but will ring in the morning.x

Patience47 profile image
Patience47

Good luck and best wishes

Yellowbluebell profile image
Yellowbluebell in reply to Patience47

Thanks. Hoping it's just a glitch in the journey.Yb

Grants148 profile image
Grants148

I have not had any hand tremors as severe as yours,but l do find my hands are unsteady,especially when l am writing things down,it affects my handwriting .l also like painting in watercolour but cannot paint the small details like l used to.Best wishes for a good outcome ,l hope that something can be done to help you with this.

Yellowbluebell profile image
Yellowbluebell in reply to Grants148

Thanks, fortunately it hasnt stopped me doing my quilting. I still have a quilt to get in the post before the 19th and its not finished yet Yikes!!

I will demand an urgent appt tomorrow as I can't get an online ordinary one till January!!

Hopefully it's nothing major.YB

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

No wonder you need the sweet stash with all that sewing.

Glad you are going for the emergency appointment , and don't be put off if they tell you they have none and you need to ring back tomorrow.

If you ask them to tell the GP and ask if it possible to squeeze you in they will probably do it without asking or if not tell them you would like a phone up from the GP at end of surgery.

I only say this as I have spent so long in the various surgeries over the last three months that I earwig.

People hobble in with injury or phone ( only 2 of us in Waiting Room )

All appointments full for three weeks , ring tomorrow at 8 am.

No , no spaces until then .

Ten minutes to by thinking GP has a person , no they call in next patient .

They come out , ten minutes to by , I get called in . Come out either no patients waiting in the doctor queue or just one.

Same happens with the Nurse , who you can also ask to see if there are no GP appointments as emergency , they can assess if you need to be fitted in with the GP, GP usually sees you.

May I point out after I saw the poor lady hobble incident with an injured knee (sent out , no patients for Nurse , extra GP in doing paperwork, looked out of window after 15 minutes she was just managing to get in the car!) I chose to be a little naughty went and sat back down , the same happened for an hour . All those ten minute appointments with no patients , they may not have called at 8 am but they could have been fitted in.

I see it all the time , and as I have been to both the busy and the quiet surgeries in our GPs Juli centre practice it is obviously not unusual .

Yes , city practices can be packed but the system is the same and you can all ask for Nurse Emergency Assessment or GP call back in UK if you feel you need it.

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

Thanks for all that info. I am quite happy to complain and even happier to wait until the VERY busy practice manager can be found. I especially love complaining in reception so that everyone can listen to what the doctors have done wrong. No personal details just a long list of why they are inept.

I had an early appt the other day at 8.40 yet there was still a queue in front of me.!! How for Christ's sake can there be a queue when I was the second appointment.??? Luckily before I could bring my temper to the boil I was called in. I will go in armed and dangerous thanks to your advice.

Hugs

YB

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

It was probably the queue of people trying to get an emergency appointment during the 8.30 window , hoping turning up would get them on the list rather than getting an engaged tone for an hour then being told you didn't ring by 9.30 so you can't come in.

How cynical do I sound? Sad , but with our experience we know Im probably right.

Enjoy your sewing , I am off to try to sleep before the big trip to clinic , eek !!

Grants148 profile image
Grants148

Please let us know how you get on xx

Yellowbluebell profile image
Yellowbluebell in reply to Grants148

Will dox

SheffieldJane profile image
SheffieldJane

I have noticed a slight tremor from time to time. Often related to low blood sugar or even upset. Mention it to your GP if it is that noticeable. Nobody has ever mentioned it to me, it is so slight.

PMR2011 profile image
PMR2011

My hand tremors ended up being due to hyperthyroid and went away once thyroid under control. My OH’s hand tremors were due to his statin which went away when it was reduced. Best to follow up!

AliDeJ profile image
AliDeJ

Hello! I developed shaking hands when on 40/30 mg of pred. My handwriting was dreadful and the tremors affected my voice too...operatic! Better now at 11 mg. Best ask your doctor though.

Wishing you well

Theziggy profile image
Theziggy

I have had hand tremors too - some days quite bad.

Yellowbluebell profile image
Yellowbluebell in reply to Theziggy

Its a relief when someone else had the same thing. It shouldn't be reassuring but It is. Thanks. YBx

EscapedtoWales profile image
EscapedtoWales

I don't know if this is the same or similar to you Yellowbluebell but I had shaky hands on 30mg - usually it felt related to low blood sugar (I called it my sugar shakes). I am now on a lower dose (15mg) and on a low carb diet. Both have helped the shaky hands however I do find that when I reduce I get the shaky hands back intermittently for a few days. I am seeing the rhuemy for the first time next week so I was going to discuss. Hope you can get sorted :-)

Yellowbluebell profile image
Yellowbluebell

Thanks for you message. It might be low sugar related. It seems to be bad one day then not the next and even when It is bad it doesn't hamper My thing I do. My rheumy appointment was for Jan but has been moved to march! When I eventually see my gp, the doctor that referred me I will let him know it's been postponed but as I was referred as urgent and they have still moved it later i doubt I can do much about it. Let us know how you get on with yours, especially as it is your first. YBxx

PMRpro profile image
PMRproAmbassador in reply to Yellowbluebell

Urgent only means sooner than routine. If you need to be seen quickly the word required is EMERGENCY - or a phone call...

Yellowbluebell profile image
Yellowbluebell in reply to PMRpro

Apparently if it's an emergency then that's what 999 is for, according to the dictator I spoke to today. Urgent like you say gets me seen earlier than normal. Problem arises she even their normal is about 3 weeks and that's without a holiday factored in!! The dictatorship was informed I would be coming down to complain in person if she didn't get me seen before the end of this week at the very latest. I now have a appt for tomorrow afternoon with a senior doctor??? I wonder how they managed to suddenly free up an appt!! My next step would be to say I will call 999 and make sure they know my practice receptionist stopped me from seeing a doctor as she didnt deem me urgent. I will also complain tomorrow with the doctor but will not expect this to have any effect unfortunately. Thanks for your help as even though I am not usually upset by anything the practice does just lately I feel like having a breakdown in reception and then the dreaded tears come. Debbyx

Daisychain12 profile image
Daisychain12 in reply to Yellowbluebell

Oh Deb. That’s awful. I know how you feel that feeling of being beaten down and not heard. It’s horrible. I am a Violent Daisy right now. What’s happening????? Linda cxxxx

PMRpro profile image
PMRproAmbassador in reply to Yellowbluebell

Cobblers - and there are emergency referrals too. Like GCA would be - you wouldn't call 999 for a query GCA case but you WOULD make an emergency referral. And you would need to see the GP as an emergency to know that...

I'd be making a clear complaint about receptionist staff who think they have medical degrees...

Yellowbluebell profile image
Yellowbluebell

Being a little bit angry at times helps. When you went to your appointments all feisty will help from some of the people on the site you felt better and it put you in control not them. So a feisty Linda is ok. As long as we don't end up permanently angry we should all be ok. There are some very strong women on this site, like pmrpro, dorsetlady, blearyeyed and many others and they have met this disease full on. Don't be too angry because it would change the Linda we know and she's fine just the way she is. Debbyxxx

Daisychain12 profile image
Daisychain12 in reply to Yellowbluebell

Oh how lovely of you Debby. I am by nature a very gentle girl. But I can and do fire up if I have to. It exhausts me tho. Xxxxx

Yellowbluebell profile image
Yellowbluebell

Well finally got to see doctor and he was stumped!! It's not a pred thing and he doesn't think it even a pmr issue either. I am used to being being different but this is stupid. He wants to wait and see if it's just a blip and that I am the only patient on steroids he has at the moment that has developed shaking hands as a reaction to pred or it may be it's just a reaction to stress (let's face it this is a distinct possibility).. Seeing him again in two weeks unless it turns into constant shaking or it stops me functioning (stopped functioning properly a long time before pmr struck). So for now no answers but as he doesn't seem worried and it isn't all the time o am not going to worry either.YB

Blearyeyed profile image
Blearyeyed in reply to Yellowbluebell

Glad you got in.

I left a message to Snooker ball further up your post with some tips on how to keep an eye on it and make a record so you can work out if it is a nutrient , nerve reaction or muscle thing , sometimes those simple changes can help solve it , or you will be able to give the GP a better picture of when and how it happens when you go back.

Keep an eye out for any other twitches that make you notice too , like eye twitches or muscle spasms in the legs or back they can all be part of the same package and related to a trapped nerve or even the need for more minerals in your diet .

Take care . bee x

Yellowbluebell profile image
Yellowbluebell in reply to Blearyeyed

Strangely I have had a few eye twitches. Will make a note of times and so forth for when I see gp again. Thanks for the advice.YB

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