Muscle problems, advice needed


#1

Hi guys hope everyone is as well as possible. As some know I ws diagnosed in late May, and now  Iam getting terrible pains in the muscles in my left arm especially doing things like trying to use a fork, or if the arm has been relaxed for a while a lot of pin and stiffness trying to straighten the arm again. Now, I am in the middle of packing the house up and making good the painting etc as we are moving to a bungalow in the next couple of weeks. I,am finding it very stressful and tiring and I have to do it on my own as I care for my disabled daughter. Does anybody else suffer with this, and what is it called? Should I make an appt with GP in case he can prescribe anything for it?

 

Thanks for listening guys.

Tony in Cornwall.

 

Follow my Parkinsons journey; http://tjkernow.blogspot.co.uk


#2

Likewise. I wonder if my R.S.I. is responsible from years of work or meds have highlighted weaknesses. Left arm is very painful and right shoulder feels like its on  a ratchet. Now eat with a spoon. Sleep is interrupted and turning over in bed painful. Oh the joys of getting old.


#3

I did a little research on the net. This list below came from  'NHS choices' site. It details possible side effects of Madopar, which is my medication. It stresses everyone is different, please be aware of that, this is not gospel just possibilities.. Some of the list affect me. I have highlighted a couple which may interest you.

My course of action is always to contact my specialist nurse. I am not knocking GP's but if you want advice I always think it's better to contact specialists if possible. They deal with PD day in and day out.

My GP is brilliant and has done everything he possibly can for me. He has no hesitation in referring me to specialists when I get serious problems.

The list....... 

a drop in blood pressure on standing or sitting up
abnormal laboratory test results
abnormal muscle movements or problems controlling muscle movement - this may affect the arms, legs, face or other body parts
aggressive behaviour
allergic reactions
behavioural changes such as an urge to gamble, to buy or to shop, increased libido, hypersexuality, an unusual increase in appetite or binge eating. You or your carer should seek medical advice if there are any changes to your behaviour
blood problems
delusions
depression
difficulty sleeping
dose tolerance when Madopar has been taken for a long time - this may lead to periods of time where movement suddenly becomes difficult, where your symptoms return before you take your next dose of Madopar or sudden changes from good symptom control to poor symptom control
euphoria
feeling agitated
feeling anxious
feeling drowsy
feelings of disorientation
flushing
gastrointestinal bleeding
gastrointestinal problems such as nausea, vomiting, diarrhoea or a loss of appetite - you may reduce the chances of these side-effects from happening by taking Madopar with some food or liquid
hallucinations
heart problems
itching
loss of taste or taste changes
may affect the results for certain tests
neuroleptic malignant syndrome may occur when this medicine is stopped abruptly
psychiatric problems
psychosis or psychotic-like behaviour
reduced alertness
skin rash or rashes
sleepiness - this may be excessive or occur very suddenly at any time of the day. If this happens you must seek medical advice
sweating
urine colour changes - this may include the urine becoming red in colour

It seems to cover everything except the kitchen sink falling on your head.


#4

Hi Tony  and Orpheus

Tony i have just read your blog and can empathise with you ,  i too have major problems sleeping and can be awake up until 4 am  in a morning , i to suffer with painful arms and rigid shoulders  but more pronounced in the left which does make  doing daily things difficult raising my arms above chest level can be quite painful

Orpheus i to suffer turning over in bed at night  so have a uncomfortable and restless nights sleep age is not the problem for me  , not sure if the meds are the problem  i am only taking Azilect at the moment which do seem to be wearing off early evening , i do not have access to a pd nurse at the moment i am apparently on the waiting list to see her but i will mention it to my consultant at my next visit maybe a med change may help

 

Good luck with the move Tony


#5

Hi Orpheus and Shelly, thanks for responding.

Orpheus thanks so much for such a detailed reply, if it;s ok with you I will show the list to my GP tomorrow he is very good, a young chap who always gives me time and seems genuinely interested in my progress.

 

Shelly thanks for your comments re my blog, I'm still developing it, and not very happy with the layout, but it;s getting there. Do keep following and by ll mens share. Also, if there is anything you think I should do to change it do let me know.

Tony in Cornwall.

 

Follow & share my Parkinson journey: http://tjkernow.blogspot,co.uk

 

 


#6

By all means....it is from 'NHS choices', as mentioned, so it should be kosher. No doubt compiled from many years of problems. Ask your GP if you can get a specialist nurse. They are simply the best.


#7

Hi everyone, I am new to the Forum.  I live in Italy and have a super consultant at our local hospital.  My current medication is Neupro patches 10 mgs topped up with Madapar  and Jumex. I too experience restless nights, waking at 3 sometimes and getting up and reading or knitting for an hour then going back to bed for another hour, sometimes sleeping, sometimes not. Being retired I am able to get a siesta after lunch most days which helps. 

I also have severe cramps in my left toes,my foot goes into a claw and I have problems getting my foot to relax again - this can happen at any time during the day or night.  Any one had this experience and have they found a cure.

Generally my health is good and my  P is only known to a few folk, others are shocked when they realise.  So I guess what I am saying is that my meds seem good. 


#8

Hi Gertrudejan,

                         This is what I do. It is not a bonafide medical cure, it is simply adapted from my training in psychology when I worked with damaged children. I can't say it will work for anyone else.....but here goes.

I was given information on how to ease troubled minds. I must stress I am not a psychologist. I just employ what I learned.

One technique was distraction......

So, I go to bed......I wake up.....I can't get back to sleep.

Rather than lie there worrying I am not sleeping, I get up. I turn on my computer and distract myself. This forum is very useful for that. Take one of your interests and research it. Make a cup of tea, listen to some music, dance with the cat (LOL) or whatever.

Slowly you can train your mind to accept this and hopefully stop bothering about sleep.

After about an hour I have relaxed my mind and go back to bed. I then write a story in my head. A bit like daydreaming at night.

For this take an event you love. Past, present or future.

I wrote on here recently about my first love. I re-live this sort of thing and embellish it. Whatever you choose make it positive and something you really enjoy, would like to enjoy, would like to be or do.

Other days I am a young man who has just been discovered as a brilliant footballer. It takes imagination, but I find I fall asleep before the story is finished. It can of course be done in many other ways.

So what if we don't sleep continuously at night. The most important thing is to get enough sleep in 24 hrs for our bodies to function properly. I take sleep as and when I can without disrupting the whole day.

For cramp I would talk to your GP.

I have suffered extremes of it and had to have ultra sound to unlock muscles. I was also given medication and exercises to do. Now if I feel it coming on I sit down and rest.

On a brighter subject...

I visited your beautiful country 3 years ago and swam in Lake Garda. I paddled a pedalo round the bay of Rive del Garda, spent an afternoon in Malcesine and sunned myself in Limone.

This is one of my highlights I re-live to get to sleep. You live in a fantastic country.

One thing I noticed was people didn't rush about like they do over here in UK. They are laid back and very friendly.

On our trip was a young honeymoon couple. They went swimming with us. I mentioned to my wife that 35 years earlier that could have been us. We both agree out of all our wanderings Lake Garda stands out.

If possible, and fate allows it, I will get back there one day.

In my mind I am laid on Lake Garda's beach, the sun is warming my aching bones and penetrating tired muscles......tonights story.

Orpheus

                         


#9

 

 

Hi tjkernow

 

I used to have a lot of problems with cramps in my legs, ankles, feet and toes but touch wood since I started on meds of 4mg ropinirole it has eased off a heck of a  lot.

I still get a lot of what I call tension in my arm and shoulder if I am in a resting position i.e. watching television, but I get the ache in my shoulder when I have been on a long shopping trip  (that does'nt mean I have been shopping too much!!) I think it's because my arm does'nt swing when I walk it just hangs.

 

Good luck with your removals


#10

Thanks Orpheus for your comments.  All this info helps.


#11

Has anyone read the recent information regarding fungus and damp buildings maybe causing Parkinsons?  Interesting !!  If you haven't seen it, read it in the Independent newspaper today,  first page - half way down on left. 'Mushroom Alcohol' Any thoughts on this anybody?


#12

I found curling toes and cramp in foot(feet) resolved once I started on Mirapexin. To some extent it has come back recently, but this is after 10+years of PD and this time it feels different. Over the years the symptoms seem to change; when one symptom is successfully suppressed thanks to the medication, another one takes its place. The worst thing I find is, that without the medication (like during the night) I have not only great difficulty moving any part of my body, there is virtually no muscle power.

 


#13

Hi all 

Our research team have just posted a a news story on the 'mushroom' study Gertrudejan mentioned which you can read here: "Could chemicals produced by fungi increase Parkinson's risk?"

It also has a link to the Independent article. 


#14

Hi Shelly

Sorry for the delayed response! Thanks for your kind words, I picked up the keys to the bungalow today, its all a bit daunting and maybe its due to the Parkinsons that my enthusiasm isn't  there but hopefully come moving day next weekend it will feel more like home.

 

Tonyx

 

 


#15

My medication is for 24 hours, therefore I get no dips, unless I forget to take one or more of the tablets I take as extras.  My 24 hour medication is Neupro - a self adhesive patch which gets changed daily.  Currently I am on 10 mgs  which suits me fine.  I understand that this medication goes up to 24 mgs, lets hope its a long time before I get there !!!!  . 


#16

I had bad cramps and clawing in my left foot, and also very cold foot, it seemed to get worse when I was diagnosed last March!  Starting Requip helped to relieve the clawing but I still get very stiff in the ball of my foot and the toes are rigid. I was very lucky to be referred to an excellent physiotherapy unit at a local hospital and the physio taught me to massage my foot. We also do an exercise where I have to stand on a stability cushion and go up on the ball of my foot. Best to hang on to something when you're doing it. It really helps loosen up the whole foot and ankle.


#17

most of us get sore muscles after vigorous activity. this is because one of the uses of dopamine is to control muscles. muscles work in pairs, eg bicep and tricep, one contracting the limb, one extending. the lack of dopamine has more effect on the contracting muscle so the pair work against each other. this and the tenseness of the muscle cause the tiredness and pain. 

i couldnt move at all after our last house move. frequent breaks, good posture and stretching might reduce it and a paracetemol helps the next day.


#18

I have had a pain in my arm that is similar to RSI for about a year and a half.  I get shooting pains down my forearm and hand. My physiotherapist felt that my muscles in my right shoulder were tense most of the time and that could be the cause of the pain.  She recommended getting botox injections in my arm.  After some very long delays I eventually had the injections about 10 days ago.  I was told it could be about 3 weeks before I felt the effects, but even at this early stage,  I think it going to work  - I have relief from the pain. It is supposed to last for about 3 months. 

 


#19

Hi brex, I'm intrigued, what does the botox actually do, how does it help?

jjbxl


#20

if I may interject, botox is an acute poison that shuts down acetylcholine activity. acetylcholine and dopamine work together, so a balance is needed. In PD dopamine is short so either dopamine is increased or acetylcholine is diminished. botox does the latter in a very localised place. so the result should be a relaxed muscle rather than tense.