INerves and Restlessness - extra dimension to Parkinsons!


#1
Having been diagnosed for 2 years (but probably had it more like four) have had plenty of time to think about my symptoms. Most of these are as you would expect,
stiffness, slowness and coordination issues plus the typical Parkinson shake... Add to this a certain amount of fatigue and I think my symptoms are similar to most people who have Parkinson’s. I find that the levadopa(Mado's par 100/25mg) that I take three or four times a day helps with the stiffness slowness and coordination but not at all with the shake.

I have taken counselling for the last two years as I believe that there is a mental struggle that doesn't get much attention yet I find it's crucial to me. So the final symptom that I would add to the list above is a more or less constant sense of physical
discomfort which becomes entangled with my mental state so that I have a mild sensation of restlessness/discomfort/anxiety most of the time. Sleep gains in importance for me because it's the one time that I usually get relief from this feeling.

I'm interested in talking about this because it affects me quite deeply and I'm wondering if other people share my experiences or whether they’re unique to me.

Basically I find that my system is on a sort of red alert presumably a fight response
(adrenaline-flight or fight) to my condition... The moment I get out of bed I am activatingmy muscles which particular in the left arm are shaking.... The physical stress if of using my body and arms seems to result in a tensing up effect ..... To give it a metaphorical image it feels like my nerve endings have left their positions on the skin and have elevated themselves above their housings.... I feel pregnant with anticipation, not relaxed , my brow furrows... And I spend most of the rest of the day in a state of discomfort.... As I go about my business I am trying to find a comfortable position.... In a chair, on the floor, going for a walk or a coffee . If I'm working
at my desk!! It's not murder but it's difficult and it distracts me from the things that I
enjoy doing... I.e.: Work, musical pursuits, engaging socially with people and so on
... For example I was at a dinner party on Saturday night enjoying the food and conversation but constantly my body was aching and twitching and I spent the last hour until 1230 trying to find a comfortable position to sit in..... Eventually I decided
enough was enough and went to bed.. And whilst it was a good night it could have been better..if I hadn’t been so restless/uncomfortable and as a result anxious.


As yet the NHS service I have received has not touched upon this sort of area and it seems to me that if I can become less restless and uncomfortable and and able to allow myself to relax mentally and physically that life would be more fun and also
I would be to get more done and live better.

So if anybody in the forum can relate what I'm talking about I would be interested in hearing from you.. To know whether it's just me or whether other people feel like this too ?


xAndy (Ojalahey)
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#2
Hi Andy
I am newly dx but probably had symptoms a few years now one being restlessness, sitting for long periods is sometimes impossible gotta move around and in the evening its so irritating I just go to bed. When in my office sitting gotta get up after a while and move around, sometimes I just give up and do something else then go back to office, I find it worse when tired. I know how you feel its not devastating just a nuisance, I think tiredness does make it worse.

Sb

#3
Hi OjalaHey

You have described how I have been feeling 24/7 for the past 2 years. I find
this aspect of PD the most difficult to deal with. I hsve tried various things
to try and calm this constant restlessness of mind and body (tai chi,relaxation
techniques, meditation,antidepressants, anti anxiety meds, et al) but I still
can't get any peace.

I'm sorry that I don't have any answers for you but I can say I know how you
feel. I hope that there are some members of the forum who have some useful
ideas that may help.

Best Wishes

Toots.

#4
Hello OjalaHey I was dx 2 1/2 years ago and am also on 100 mg Madopar x3 daily. You describe how I feel exactly.Sleep is a welcome respite from the daytime twitchiness. I also find daily exercise very beneficial in order to get rid of the excess adrenalin pumping through my body. I also try to engage my brain in other things to try not to be thinking about Parkinson s all the time. The obvious I suppose - Tv, computer, reading, housework, whatever distracts you. Every day is Groundhog Day!
Good luck and best wishes
Samdog

#5
hi andy,

i dont know if i can help at all but i do have the same feeling of being restless and the constant feeling that something bad is going to happen my stomach churns and nothing seems to help but then i read a post on the forum can,t remember from who but they would get a problem with the pd and would just tell the problem to go away or words to that affect and found it worked i know it sounds silly but it actually works for me i suppose its a bit of mind over matter, i am not saying it will always work but its ok for now anything is worth a try, as you say sleep is the only release, sue.

#6
Hi Ihave just read these posts out to my husband . He says he is exactly the same . Long before his diagnosis I use to tell him He wasn't happy unless he had something to worry about , and his glass was always half empty . of course I understand why these days .

I also agree with everything you have written about your feelings .

Although I am not the one who has Parkinsons for very many years Suffer an anxiety state and couldn't leave the house . Fright flight ,

Would always welcome sleep and dread when waking up how I would face the day . So in another way I also understand .

It's why now I use the methods that helped me overcome my problem , help and support my husband . When something is worrying him on his mind I write it down , talk about it ,then cross it out , . When he is low I remind him to sing . we sing together or I distract him in another direction
It does help if only for a short time .

#7
Thanks everybody to your responses, it's fascinating to compare notes. I think that if we can define and recognise what most troubles us we're part on the way to dealing better with it. This nervousness/restlessness that I experience is rarely talked about
but as Tootsie described it can be the aspect "most difficult to deal with " .... Well the more classic symptoms of slowness/stiffness/non-– coordination are pretty difficult to deal with too but crucially the drugs help with these whereas the nervousness/restlessness is barely recognised at all.. And maybe it doesn't affect everybody.

But it affects me and makes it difficult to relax. Having said that I find sleep is a sanctuary from it... Also walking and playing tennis help..... As well as some creative pursuits, perhaps everybody has things that work for them.

Ironically the things that most people relax with like going for a drink, or Coffee or sitting down to a nice meal in company stress me out.... I struggle to find a comfortable position and feel more self-conscious about my shake.... I find it more relaxing when I can change position and move around a little but this is hard to do in social situations. So I try to combine social stuff with light activity like walking
Or tennis or a board game or similar.

It seems to be a vicious circle… Starting with the shake ... The physical symptoms have an impact on my mind making me less relaxed… That in turn seems to tense up my body a little bit more physically... And hence vicious circle. It seems to be a subtle thing ..... I wake up relaxed and the first few purposeful jobs of the day can tense up my muscles (something like making breakfast perhaps) and before I know it I am getting stressed .


I’d be interested to hear other people's accounts of what goes on physically and mentally when they feel restless/nervous.


All for now

Andy (ojalahey)
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#8
Hi again just to say your description of pd symptoms mirror mine exactly. I had to drive to the dentist yesterday and the combination of the dentist s chair, appalling weather conditions and roadworks sent my legs into tremble overload and my stomach a flutter. I got through it TG but, instead of giving myself a pat on the back, was immediately looking for something else to worry about! It s madness and I have been referred for cognitive behavioural therapy as I have tried two different medications which had horrible side effects. I am looking forward to see if this helps.I have been reading a website called No more panic which I think was recommended on this forum. It is well worth a look. Common sense advice to get yourself back some control and talk yourself through situations. I m also going to up the exercise if I can

Good luck and bw

Samdog

#9
I also suffer from nerves and restlessness, especially after operations (the last 3) involving a general anaesthetic, particularly in the first few days. Is it the side effects of the anaesthetic or its interreactions with the PD drugs. Any simple remedies?

#10
Hi, I think your very descriptive post sums up very well how I also feel daily. It is exhausting and debilitating living in this way. I have had PD since I was 15 and am now 46. The effort of coping is now taking its' toll mentally as well as physically. I don't want to type much but if you have anything specific you'd like to ask I would be happy to answer. Sally

#11
Thank you for your replies.


I raised the issue of feeling restless/discomfortable//anxious(RDA) because it hasn't been raised
much in my knowledge as an acknowledged symptom of Parkinson's.

Personally I get the usual suspects.... Stiffness//slowness/un-steadiness, tiredness and shaking
and these are well known.

In many ways I'm doing quite well and managing to keep my head above water, enjoying life and not
too depressed... Keeping up with hobbies and managing to work(part time).... Things are okay broadly.


But this RDA is an extra dimension... I feel restless unable to relax.. Difficult to find a comfortable seat
or position to sit in...... my insides are churning and I just can't relax..... This wouldn't matter so much
if it was a couple of hours a day but its most of the day..... From breakfast through to late at night
and even in bed sometimes. When I'm in company i get very conscious of this restlessness and obviously
it's harder to readjust your position, walk around the room or do exercises when you're socialising.
The idea of having a drink in a pub and breaking off to do some exercises is surreal. But it all seems
worse when I'm in company..... And my mind is on the edge of panic some of the time... It seems ironic
the situations that I used to find relaxing like having a meal in a pub or having a nice coffee with a friend
now seem like big challenges.... And it's a mighty struggle to enjoy them.

I get a little dyskinesia(at least I think that's what it is) resulting from my 3X125mg levadopa ...
These manifest themselves as slight compulsive writhing movements..... Not very pronounced but anxiety inducing
as well.
And I wonder what causes the RDA symptom..... Is it physical or is it mental..... I suspect more the former in that
my body isn't allowing me to feel comfortable very often and the mind reacts to that feeling with anxiety
which may be causes more physical discomfort...... un circulo vicioso(as they say in my Spanish class).


Forgive me if I'm repeating myself but I'm trying to find out if a large number of people suffer with this
restlessness/discomfort/anxiety symptom whether it's just me and a few others. If you don't get this
symptom I would be interested to hear from you as well as if you get it. And if you do get it ..
a short description of how it manifests itself for you would be interesting.


If it's just me and a few others then although it's important it's maybe something more individual that
is causing it.



If it is common then we should be raising it with doctors and specialists in the medical establishment
because it's not recognised at the moment!





rgds

Andy (ojalahey)
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