To rest or not to rest?!


#1
Hi everyone, to people who havent seen my previous posts I am not diagnosed but have lots of the symptoms of PD, got a neuro appt next week, but had what seems to be a mini-stroke a few weeks ago resulting in me losing my speech as well as extra weakness etc. Everyone is always telling me I need to rest and let me brain recover etc and Ive spent most of the last 3 weeks in bed apart from a short walk down my road and back almost every day since coming out of hospital, and managed to venture to the shops once. I have had problems with pain, stiffness, weakness etc for years and know I have to push myself because if i just lay around at home obviously the weakness etc will get worse and worse so I make myself go out and do things but in this recent situation im not sure whats best, any ideas? Im in so much pain being in bed a lot but i am so weak and tired and was a bit confused already but yesterday i had another funny turn and what seemed like fits in my sleep which woke me up, and today I am soooo confused, its making me so stressed and upset. Ive just stayed in bed not knowing if i should stay awake or sleep, have my tv on or off, if i should eat or not, I literally cant make the simplest of decisions so I dont feel I should be going anywhere but my back especially is so sore and my legs feel like (painful) jelly cos they are so weak... whats best?! I know about stretches and pacing myself but I dont know if it applies to this situation. HELP!

#2

 

I suffer from fatigue Suzy, there are days when i can do a little for a few hours and there are days when i can do very little for many hours, those days I know its best for me too rest, I never know which day is going too be which, i got out today, i drove too a shop, while i was there i was very wobbly i drove back and spent a couple of hours with friends, but that was my limit, home and sleep, i have too know my limits and try not too over do it. a little is good a lot is bad and i pay for that with other days.

But i do worry about you Suzy, and the turn you had, a neighbour had a T.I.A which is like a little stroke as i understand it, its a serious thing if that's what's happened so do please take care and seek it if your not at all sure your ok!!. sleep when your body tells you need it, eat a little, drink a little and exercise a little, but do take care , And most of all i hope you get a little further along next week.


#3
Thank you Sea angler, i appreciate your comments. I have bad fatigue too, im sure we all do, the symptoms and disrupted sleep are exhausting! Before the bad funny turn a few weeks back Id been getting out quite a bit, I sometimes overdid it and would pull my leg muscles and stuff but generally getting on well but since this happened, ive hardly been out apart from my daily short walk and i can feel its not doing my body any good but then I can't manage going out much either! My brain seems like it needs to not be used at all which is obviously impossible! Ive always found it a bit difficult to know my limits cos im so up and down but especially now with this confusion, ive no idea what im doing of! I was sleeping a lot when it first happened and i still feel like i want to sleep a lot but my sleep at night is so bad anyway and if i nap in the day i can barely sleep later. Yeah it has been a bit concerning, at first A&E thought it was a full blown stroke but there was no obvious bleed or clot on my ct scan but they reckon my brain was somehow disrupted for a bit so along the lines of a TIA but they werent 100% sure. I didnt feel i could handle going to hospital today, i called the non-emergency 111 number but was too confused to tell them all the history and everything and i get stressed on the phone anyway cos of my hearing issues so in the end i said not to worry about it cos i couldnt handle it. Im just so tired if fighting my body all the time! I know you all understand that one. Hope you are doing ok x

#4

 

My sleep is broken up as well Suzy, well before i was aware i was ill i started getting vivid dreams, i would lay awake for hours tossing and turning trying too get comfortable as soon as i'd fall asleep i would awake because i felt  compelled too the need that i needed too move i used too call it horizontal climbing,

the vivid dreams were  always the same violent episode and as soon as i closed my eyes it was there, eventually i have learnt too get rid of that one, but it has been replaced by a lesser one that occurs less at least on some nights where i am at the top of the stairs and i dream i am about too fall down it, it is at that point i awake  almost jumping off my bed trying not too fall, like a myclonic jerk i spose??, the thing is when i am actually at the top of the stairs i actually feel like i am going too fall down them so i hold myself back, i also bite my tongue at times as well.

I take a small dose of amitriptyline which helps a little too help me sleep.


#5

Dear Suzy

Every time I read your posts I feel for you so much. What medical care or investigations have you had? A dat scan for example which would show evidence or not of Parkinsonism? Have u got family support?

Thinking of you

samdog

 


#6
I wonder if the bad sleep and nightmares is like a precursor to PD, although i know other disorders cause sleep disruption too. Im pretty sure ive never slept through a night in my life and used to have lots of nightmares, I still have lots of vivid dreams that wake me up and confuse me, and pain wakes me up too, or cramps, or Ill just wake up randomly. I bought a proper sleep monitor thing once and it showed that some nights i woke up 14 times and didnt have any deep sleep at all sometimes! Im gonna ask about a sleep study at this neuro centre, especially cos of these fit type things, ive bit my tongue cos of them. Sorry you have such terrible sleep too SA, its so annoying when your are ill and exhausted, all you want is a good sleep! I think its a myth people can sleep well hehe. I was put on amytriptyline before but it made things worse, i was only on it four nights and three of those nights i punched myself in the face! I can tell my brain is struggling at the mo because i was sleeping on and off from 11pm last night til 1pm today, my poor head is worn out! Damn my hand just twitched and i pushed the back button on my phone and I thought id lost all id written, thank god I got it back! I deleted all my work a while back at work cos my hand twitched, damn touchscreens! Hi Samdog, I feel for all of you too on here, its good we can relate to each other but so sad we are all suffering in some way. Well recently Ive had an mri of my brain and blood tests and my neuro seemed to think that was enough, and then I had a ct scan after this recent dodgy moment. 10 years ago when i started getting paralysed a lot I had quite a few tests I think but Ive got almost no memory of most of my life so im not sure what was done, i know they thought it was psychogenic though and I know thats a hard diagnosis to accept for anyone but I genuinely dont think it is! I get ill whether Im happy or sad, stressed or relaxed. Stress etc can agrevate things I think like my tremor but Im sure theres an underlying cause. At least Im seeing movement disorder specialists next week. Yeah I have the support of my mum, shes great although she does find it difficult because she has to care for me, my brother (who has tourettes and depression) and my nan and she has her own health problems. I was in an abusive relationship til last year so that didn't help things but ive got more friends now who try and be understanding x

#7

You have above and beyond your fair share and your Mum must be exhausted. Have they tried you on any PD medication?

don t know what else to say except keep on pressing them for a second third or fourth opinion if you don t think it s psycho genic

i m sending you all best wishes

 

samdog


#8

Yeah my mum is worn out bless her. No Ive not tried PD medication, my local neuro I saw said I didnt have PD based on an MRI and blood tests but I didnt think those tests would diagnose it so how can he rule it out? I think once they get psychogenic in their heads they put the blinkers on and they dont look at m with an open mind. My mum even tells the docs shes sure theres an underlying physical problem in my brain because shes seen what happens, when, how etc and that theres no pattern, no certain mood etc and how much its affected most of my life but they dont seem to listen. I really hope these doctors next week are more open minded. Its annoying because I always feel if a doctor thinks its psychogenic and then you keep asking for a different opinion and want to see more doctors etc it makes it look like you attention seeking and will make them think its all your head even more! Ah I dont know, Ive tried everything I can, Ive done CBT, cognitive hypnotherapy, councelling etc all just in case there is a psychological cause but none of it made any difference, Ive done a pain management course for a month, Ive tried acupuncture and massage, pilates, I take multivitamins and supplements, I keep active as much as I can, i really try so hard to help myself but nothing seems to work and Im tired of trying! Thank you for your best wishes x


#9

Selfish though it sounds I'm so relieved to hear any comments on fatigue. I've just had an awful weekend unable to do anything and it's reassuring to know I'm not alone. Sometimes feel I'm pushing an elephant up the stairs! I don't have a p nurse and didn't find the consultant on my wavelength at all.so good to talk with others. 


#10
Thats not selfish Susie, thats good if it makes you feel a bit better x

#11

Hi, Suzynola --

I've just returned home from a long trip and am catching up on the forum.  Your posts make me ache for your sufferings but make me angry when I read of those doctors (typical in every country, I think) who know it all and do not listen.  Here's an idea: do you think it might be of some help if you emailed your doctor some of your posts (with or without the responses from other forum members) prior to your appointment?  He or she might get the point, just as we have by reading your articulate and poignant entries here.  It's a thought, anyway.  I don't know if in the UK you even have access to your doctors via email.  (You could mail print-outs, too.)  But if a doctor would read one or two of your last posts, I don't see how he/she could approach you with a closed mind!

Wishing you well,

J


#12
Hi J, did you have a good trip? I dont know if we are able to email doctors here or not, I think it would just go to their secretaries. I saw a specialist in movement disorders at a neuro hospital last week and he actually took me seriously and believed me that I dont think its to do with emotions/stress etc and said he wants to help me, especially cos im still young. Hes going to redo tests I had 10 years ago and he thinks ill benefit from this intensive rehab kind of thing where ill be admitted for 6 weeks, im not too sure what it entails yet. Hes going to get epilepsy people to see me too cos he thinks i might be having dissociative seizures. But im just glad he's going to try and help me, i dont feel too hopeful anything will make me much better but we'll see! Thanks for the well wishes, I hope you are doing ok x

#13

I'm not on any medication as yet, having early stage p.d. However as I've said before it's the fatigue that gets to me. Has anyone been prescribed amantadine for help increasing energy levels? It's currently a possible for me in a mild dose but no one seems too sure if effective. I'd be grateful for anyone's experience of it. 


#14

So very sorry to read how unwell you have been - I wish you well with your neuro appointment and will hope that you at least get a diagnosis to help you to start to move forward.

Good luck!


#15

Suzy,

Do you respond to the PD meds well?

I found a drug ropinerol was causing alot of my jerks like you suffer from .I think sinemt also plays in this but is unknown how much

I would feel confident if the drug helps and call it PD. Doctors will always disagree ,but so what.You dont need scans as they are not definite just money makers for the system.

I would definitely avoid long hospital stays,they are very bad for PD from personal experience. 

If you suffer from confusion don't be alarmed.We can avoid frustrations  leading into confsion simply by making a decision,I always ask myself if in doubt in the decision woul cause problems further down" .A firm decision steadies the nervous system."

I am so glad i have the ability to be self reliant and wish i could give it to others.I can show you how to acquire it then it's up to you..

Thanks for responding earlier on the jerks.Mine are minor now since i got off ropinerol and mainly in control using concentration.

best

john


#16

coolbig grin 

Hello  my  dearest  buddies,  well  I am  waiting  for  high  tide  at  my nearby  Seaton  Sluice  Suzy  and  Lady  J,  the   wind  is  NorthernbyNortheast,, and  this produces  big  waves  even when no  wind,,  but  today  oh  boy  its  a  force  22 million  so  good  pics  to be  had,  worry  not  friends  as I  always  fill  my  wellies  with  molten  lead  and  though  it  stings  a  bit it   keeps  me  anchored to  my  chosen  spot,,,,oh  dear    being  silly  again,  I  dont do  any  of  the  previous  in  fact I  am  impervious  to  all  windspeeds  due  to  my  sitting  in  my  car  at  all  times.

      Suzy  I  have  welcomed  you  elsewhere,  but  wellcome again  ,  and  lookin  good,  as  are  you   Lady J  your   journey went  well  I trust ,  you may  have  picked  up  on  a couple  of poems  which  were  c??p  and  sillier  than  normal ,  also  my  ON    time  is  7.30  to  2.30,  after  that  I have   no  choice  but  to  rest  Suzy,,though  its  a  test  (of my  patience)  as  I  still  want  to  do  things  but  cant,  I am having  all the tubes  feeding  the   Dopa  Jell  into  me  changed  soon  which    may  or  may  not  give  me  yet  another  fleece  of   life,, (same  as  lease  of  life  only you  have  to  take a  orphan  lamb   every  where, oh  what  fun  in  the  supermarket,  they  wont  accept my  excuse that  its  my  sheepdog  for  the  bewildered ),  well  off now  to  get  the  invigourating  Sea  Air,, now  where  did  I  put  that  Lead

                                                          FED


#17

Glad to see you back with sense of humour intact, fed!  (Oops!  Had to go back, as usual, and put the U in "humour."  The spell-checker is British.)  It sounds as if you are up and about and enjoying life a bit.

I had a fine trip to Seattle, yes.  And I am working daily on the manuscript for my next book, hoping to have it on Amazon by January at the latest.  I don't think I'll be finished before Christmas, unfortunately.  One long narrative poem is short its last 40 or 50 lines, and the book's cover is an area in which I always need assistance.

By the way, I tried the last email address I had for you, and I don't think the message reached you.  Did you receive info on my travel plans for July?

J


#18

Hello J long time no speak, i remember a conversation we had a while ago re Donald Trump you said if he got elected you would be coming to live in England.

I am sure you was joking but if not I recommend Lincoln it is a nice city without being to big and has lots of history about it and of course it is where I live.

When Colin woke me up this morning and said Trump had won apart from saying your joking you was the next thought that came to mind. i am very surprised he has won but i suppose it prove's the US is not ready for a female leader I really thought she would win, after all who would back a bigoted sexist bulling idiot like trump whom also has a really doggy hair do as well. So my message to your fellow Americans is thus,

If you can support yourself or go out to work and are willing to integrate speak our Language and enjoy our rubbish weather then come and live in old blighty just chose where to live carefully.

J I would love to show you around but not in March / April time DBS going ahead then. When the last normal person unlike Trump leaves the US make sure you turn the lights out please. Trump will do everything in his power to put the US back into the dark age, so you might as well give him a helping hand as you leave.

TRUMP as president good god hell yes it has happened.

BB xx


#19

BB, it's just unbelievable, isn't it?  But it teaches us never to underestimate the gullibility and downright stupidity of the rural voters of America.  The man demonstrated every negative character trait you could name, and they still thought he would be a good President.  Really, try to find one bad character trait he doesn't have.  Dishonesty? bigotry? vengefulness? disloyalty? selfishness? pride and boastfulness? chauvinism? bullying? ignorance? simple-mindedness? lechery? And, yes, he has a crap hairdo, too!  Furthermore, don't listen to those who claim Trump will surround himself with good advisers to make up for his mental shortcomings.  Hah! We've seen the criminal types he chooses:  Rudy Giuliani?  Chris Christy?  The latter was just last week convicted of involvement in the scandal we're calling "Bridgegate."  He lied to the public and the court about his role in the affair.

The Canadian immigration website crashed during the tabulation of votes last night!  Seriously, it did.  But I suppose we'll get used to being the laughingstock of the world for four years.  We had considerable practice when George W. Bush was in office.  (Compared to Trump, though, he was a genius.)  American teenagers traveling overseas used to put Canadian flags on their backpacks!

Ah, the good old days, when our President was a halfwit.  Now we've elected a quarterwit.

By the way, I am coming to England next July.

J


#20
Hello J, I could not agree with you more re Trump a complete and utter moron. I was a little worried after I posted my post that some of your fellow country folk might have thought I was taking the mick out of them so was please to see your reply. As you coming to the UK in July it would be lovely to meet you where will you be based or are you travelling around the country. If you are based no further than London i can travel down to meet up with you I would need a couple of months notice as I would pre book my train tickets in advance I get a better deal that way and then tend to travel first class. If you are touring would you be travelling anywhere near Lincoln at all? Either way I will do my best to get to where you are going to be. Really looking forward to meeting you. Kindest regard's BB (Karen). Take care xx