Pain , normal in PD or not


#1

This is my first post , so hello to all on here , before i ask my question i should maybe give some background on myself. I am a 58 year old male , diagnosed just over a year ago.I am tremor dominant and apart from the pain i am about to ask about i am coping reasonably well.

On being diagnosed i decided a positive attitude and wellbeing may just give me a fighting chance with this disease . I set about getting fitter (kickboxing /gym /cycling) lost approx 14kg in weight and apart from the obvious PD problems i feel as well as i ever have. The biggest problem i am experiencing is pain , lots of it in lots of areas.I have particular pains in my front of neck area ( scapular ?) , lower and middle back , and recently developed pains in my hip joints and buttocks. I have asked my PD nurse and specialist about my pains and they feel they are not PD associated pains but when i read articles/forums it seems to suggest pain is a factor in PD.

As things stand i would live with my tremor all day long if i could  just get control of my pain but so far nobody can help. Could i ask if anybody recognises these symptoms , if they sound  PD related and can advise on any treatment . Thanks.


#2

Hi ratter,

Welcome to the forum. I'm sorry to hear that you're experiencing a lot of pain the moment. This is a good place to talk to other people in a similar situation. 

This info sheet looks at the types of pain associated with Parkinson's and how they can be managed which might be helpful.  

And please do remember that our Helpline team can give advice on the phone. Call free on 0808 800 0303, we're open Monday-Friday: 9am-7pm and, Saturday: 10am-2pm.

Take care,

Joanne

(Digital team)


#3

Hi Ratter and welcome.....Yes i have found that the pain i already had has been exacerbated by the Parky! I have prolapse discs as a result of an RTA  26 years ago plus osteoarthritis in several joints. The stiffness and pain is worse in the mornings and i find doing stretches in a warm shower loosens me up a little plus the meds ...of course!!!! also  my GP is wonderful and a qualified accupuncturist and eases the muscle spasms in my neck, lower back and shoulders regularly. Also i have worn (when needed) my faithful TENS machine for the past 17 odd years, which i prefer to strong painkilling meds. I have enjoyed all types of dancing over the years and my Husband and i still do what we can, it def helps with my co-ordination and balance. Getting down the stairs i am like a 200 year old!!! but get that music going and i am 18 again haha!  I hope you soon find some relief as pain really gets you down, do you have another PD nurse that you can discuss this with? We all have our own methods of dealing with the various symptoms of this *%^* disease, but this works for me.

Let us know how you get on and keep posting...all the best to you

Dolly x


#4

Dolly , thanks for your reply , obviously with your prolapsed discs on top of PD you have a recipe for pain and fair play to you for cracking on with your dancing. Prior to PD i was healthy and reasonably fit so clearly i feel PD is 100% responsible for my pain , even though my symptoms and pain areas match up to all known Fybromyalga pain points .

A quick update to developments since original posting may be worth doing . I have been reading about the PUK funded research into pain in Parkinsons by Dr Monty Silverdale at Salford Royal,Manchester. I thought it would be worth offering myself for participation in the research as that could be a good way to get information along with helping in research. I struggled to get a reliable contact for research participation so i have therfore decided to seek a GP referal to see Dr Silverdale in his private clinic . I figured it may be worth the £250 plus 250 mile round trip to get the chance to sit down with an expert in the field and ask some questions , it may be a waste of time , will report back after the appointment.

All the best 

Paul

 


#5

Ratter I too suffer from various pains that I can only assume are down to PD.  Prior to my diagnosis three years , I was fit and healthy.  I experienced pain in my shoulders , hips, hands, back, forearms , legs, neck ....in fact they are so varied and come and go so frequently , I just put them down to Pd and take paracetamol .

 Pain is one of the symptoms that I feel addressed , where your spirit down.  Be interesting to hear what you find out


#6

Moonandstars , i will certainly share my experience when i have had the consultation , watch this space .