Hi, i've just recently been diagnosed with pd a month ago. Im 39 a full time mum to 3 children all have special needs. Life is very difficult but now with the added pd diagnosis!! I've been getting symptoms for over 18 months and my Dat Scan was negative but my consultant said this can happen. Ive just been put on madapar and Neupro patches. Just wanted to ask is pain a usual symptom as this seems to be getting worse.
Hi Woody and welcome, there's a great community here. Sorry to hear about your pain. Do you have a nurse that you go and see? It cam be useful to make a note of symptoms and discuss this with them so they can recommend the best medication and also any physio or exercise you may benefit from. :)
Hi Woody - Sorry to hear about your diagnosis. You have such a lot on your plate! Keeping a diary with the time you take your medication and when you feel your pain is at its best/worst may be helpful in finding the correct medication for you. If you have been given the name of your local Parkinson's nurse then do get in touch with her - you need all the help you can get. The disease can be slow for a very long time so try not to lose heart. Is there any additional help you can get looking after the children so that you can get some rest? Fizzy.
Unfortunately pain is a part of PD for a lot of people. That is not to say it is untreatable. I used to get a great deal of neck pain. GP gave me a low dose of Amitriptyline and it really helps.
See your neuro / gp / PD nurse and ask for help.
It may be that you are slowly increasing your meds, as you get to your correct dose the pain just goes (well, mine did anyway)back now but I know I am under medicated as I don'y want leva dopa yet and have a very low tolerance to Dopamine agonist.
I work with children with special needs so know how difficult that can be.. Hope your pain eases soon.
Hi thanks for all your messages. I am finding it difficult but Im a fighter. I have recieved an appointment for physio and i rang my p.d nurse Fri so should get to speak to her tomorrow . Im glad i know pain is part of P.D i just need to sort out stronger pain relief now. Does anyone else get restless leg syndrome? It drives me crazy lol x
yes i get the legs thing! drives me crackers!
Hi Woody, Welcome to the forum and sorry to hear of your plight. I too have early onset PD and three children but am older than you, dx at 45, now 46 yrs. I'm presuming that your symptoms must be quite pronounced if your first drugs are levodopa and a dopamine agonist. Hope they start to work better for you soon. I used to get Restless legs (especially badly premenstually) but since starting Requip XL (another DA) the restless legs have stopped and my shoulder pain has improved. My "frozen shoulder" type pain was my first symptom so yes pain can be part of PD. I also take Azilect though not sure it does much for symptom control. My difficulty now is insomnia, which is causing strain with managing my family schedules when I'm so tired by the afternoon of the next day as they come in from school! Feeling slightly anxious re the impending 6 weeks HOLS. Can you access any respite services for your children with special needs? Depending on ages might be worth investigating via your HV, school nurse or GP. Not sure if my sleeplessness is PD, drug side effect or perimenopause! Hey Ho! What fun!
Hi Silverkins you also have 3 children...hard isn't it!! My symptoms started with the restless leg and frozen shoulder and pain in my neck. I had acupunture which eased it a little and had regular massage on my neck which helps. I now have a restless tremor in my right hand which i can feel through my arm. It does go numb and i get pins and needles. My left leg drags slightly and i do become very stiff. Its great fun. I rest when i can when my symptoms are bad. I have a great husband, family and amazing friends. Did you say you get the restless leg?
I do get rest bite for my eldest but my middle daughter has only just got diagnosed and my youngest my mum has for me so i do get help but thanks. Its nice to know how friendly people are on here. Thanks
hi Woodywoodster, welcome.
I too am newly diagnosed, and I am also a full time carer to my daughter who has a learning disability so I can fully understand how you are feeling. The support here is excellent, if you have any niggling worries just ask, someone will have the answer, or know where to signpost you.
Tony in Cornwall.