First time on the forum

hi there not shaw wether this is wright so i will keep it short, my name is jim i am 64 years old , i have had pd for about 7 years my job is a hoticultural fitter , wich in the last year has become very difficult to the point that i have cut my days down to 2. the drugs i am are sinimet and repinerole, my main problems are musle pain and stiffness more so at night,causes me to have bad sleeping nights, just wondering wether any body else is thesame, i am at my wits end the drugs i am on dont help much with the pain.

Hi James, and welcome to our community forum. We just wanted to make sure you’re aware of the resources available to you here. Namely our website at Parkinsons.org.uk, and our free and confidential helpline on 0808 800 0303. Between these two services you should be able to find some assistance with your medication, etc.
We hope you’ll take advantage of these options, and with our warmest welcome,
Jason

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hi there been a long time getting back not been to well find it difficult to work computer ,any way .here goes hope am doing it right. i have a problem witch is causeing me alot of consern, in the early hours of the morning i seem to get really bad leg pain in both legs this stayes with me untill the morning when i take my first lot of parkinsons med , is this nomal and is their any thing i can do does any one else suffer the same .will try and keep in touch a little more freqent

Evening James3 … I’m 70. I have Parkinson’s diagnosed last June. I am on Sinemet.
Up to 55% of people with Parkinson’s have Neuropathy. I also have Neuropathy.
I had swollen feet & extreme discomfort in my legs. Very tight muscles. It feels like
I weigh a ton when I walk. It may be that you too have Neuropathy. I take Amitriptyline for it & find it helps. Obviously ask your medical team about Neuropathy. Amitriptyline is also a good pain killer.

Best of luck.
Steve2

hi thanks for getting back to me with that informasion, i to am on sinimet and ripinorol ,i all so seem to get very bad kramps in my legs during the night witch does nothing for my sleep, it is very good to talk to you as where i am from there is very little help to get.and find useing a computor not easy, not shaw wether i am useing the forum corectly

No problem james3 only too pleased to help. I have also found that Sinemet may give me nightmares & poor quality of sleep. A lot of moving around as I sleep. This also doesn’t help my legs. Yes you are using the forum correctly.

Do use the free helpline if you need further help. 0808 800 303

Best of luck.
Steve2

hi here i am again hope iam not a bother, i am not very good with this condition, if i were to ring one of the numbers you gave me they would be aingittingitble to help with some of the problems i am haveing i get a number of times a day when i carnt sit still but when i move about i am very unconftable and i get very confused, and when i am walking i seem to sway about alot bit like i was drunk, carnt walk through a door way with out hitting the sides, alot of the time i feel prety crap i dont seem to be getting on very well, is this normal is there any thing i can do

I’d phone the number James. I’m not an expert just a sufferer like you. Or contact your local doctor.

Best of luck.
Steve2

Hi, my name is Peter but I might have put Cedric when I signed up!
I have been lurking for a few days as I wasn’t sure where to go to leave a message!
I’ve not used a forum like this before, bit baffling ain’t it?
Anyway, I was diagnosed with PD about 8 weeks ago, my heart sank!!
I thought it might be a bit of back pain causing my trouble walking!
Well the Xray led to an M R I and that was it! But I seem to have been thrown in at the very deep end so I’m glad I’ve found you lot!
Starting at the beginning as I should have done, I am English but for the last 22 years I’ve lived in Thailand. Nice if you’re on holiday but not so good if you have to talk to doctors at the hospital! Actually, Ive seen the inside of the hospitals a few time since moving out here but usually for something more easier treated.
Sorry if I’m not getting to the point, but that’s it, is the PD that’s stopping me getting to the point?
I have seen 4 or 5 doctors going from 1 t’other on recommendations and I can tell you it’s not cheap as I self-pay, not having insurance!
I’m writing this today because my wife doesn’t understand why I don’t know what I want for dinner especially when I tell her I don’t know if I’m hungry!
She’s an angel really but she cannot understand my mood swings!
Amongst the meds I am taking is Sinemet, conTAB and another. I seem to think I’m taking too many but it’s difficult to speak to the doctor who prescribed them as I have to go about 65 miles to a hospital in Bangkok to see him! He’s the last of the 4/5 that I started with.
I’ve typed my first message so hopefully I’ll be back, see you soon!
Peter or Cedric.