Living in constant pain

Hello,

I’m here out of curiosity to ask what sort of pain medication people take. My husband has been feeling the effects of PK full force now for some time and the main problem (aside from all the typical PK problems) seems to be the amount of chronic pain he is in. He has seen countless physio’s, had laser treatment, steroid injections but nothing seems to help.

His man areas of main are in the centre of his neck (the rigidity pushing him forward), his shoulders (from constant tremors) and leg pain which we think is coming from his hip.

I know from life before PK that he has a high pain tolerance so for him to say his is a ‘9 or 10 out 10’ for pain almost all the time is really concerning. From the feedback he has had from his GP (who sent him away with Paracetamol!!!) he thinks that it’s just the way his life is now that along with PK he will live in constant pain - is he right? Should I stop nagging him to talk to more Doctor’s or do I need to push him to have a proper pain management structure in place?

He’s been referred for DBS about 5 months ago, but we’ve not heard anything yet.

Any advice or help or what pain relief you take would be much appreciated.

thanks
Andy

Hi theŕe I have rheumatoid arthritis everywhere in my body.plus PD and like your hubby I live in constant pain and recently I had emergency surgery for decompression of the spine. My Dr.is totally different as when he saw the pain I was.in he gave me pregabalin plus a tablet for depression but was used in extreme cases of pain plus the highest dose of paracetamol plus hydrocodone. And regular prescriptions of .morphine to take as required. This all together made me just about pain free.

Can you not go to another Dr. Hope all gets sorted soon as there is nothing worse than constant pain

Nobody in this day and age should have to live in pain.
Simple.

Hi hubby

You are so right but we do, and the more we look at ways to stop the something else inmy body hjets, it’s almost like tree roots, cut some off one side and the other grows and finds away to stop is doing something. I hope you can take pain killers that work you pain.

Kind regards
Raz

Hi Andy,

Obviously we are all different, but I can tell you what is working for me at the moment. I had mild but near constant pain. After advice from a cousin of mine and after my own research I started taking tumeric root extract (curcumin is the active ingredient). The first few days the pain increased coming to a rather excruciating head after day 4. Then day 5 on the pain has been mostly non-existent, and this is after two months so far.

Bit of background for reference I was diagnosed at age 40 last year and have decided to be reluctant about medication. I take azilect 5mg once a day (since February), vitamin D supplement (most of us are deficient especially people with PD), and the curcumin. Otherwise I am doing yoga twice a week, weight lifting twice a week, and running twice a week.

Hope this helps.

All the best,
Warren.

I’m sorry not to have replied sooner, thanks for everyone’s feedback.

Another visit to the GP where she just didn’t help him - made him feel worse and that he has no choices at all.

I’ve looked into this more and the NHS offer pain clinics, does anyone have any experience with PD and pain clinic? Are we wasting our time here if we ask for a referral.

thanks
A

Hello AMILLer
We are all different. But I can only speak from my experience. I can’t remember anymore what a good nights sleep was. But pain is worst when there is little to take your mind off of it. Taking pain killers is a two edged sword. It loses it’s effectiveness over time. In my USA we are an example of the end result. People take more and more.
I refuse to take it at this point. My pains are much like your husband. I take naps when ever and do everything possible to occupy my mind off of the pain.
It helps some. The pain comes in my opinion with progression. The tense muscles. Stretch more often and he may have to go to therapy to learn more coping skills that relax those areas. Accupunchire I heard can help. I have not tried it. Ins. doesn’t pay. My budget is at its limit.
But my main post is pertaining to pain killers and possible addiction. Parkinson’s effects our brain chemicals the way it is.
Pain meds will be my last choice. When I can not walk anymore and am forced to be unable to draw my attention in a other area but pain.
The reality of Parkinson’s for all in not the same. Previous injury and the work we did that may have worn out our body is not Parkinson’s. We can not blame all our pains on the disease. That is what makes treating us difficult.

Hi I’ve just joined the forum. I was diagnosed with Parkinson’s in 2008. I now go to bed and wake up in constant pain all over my body. My Parkinson’s Nurse doesn’t think it’s my Parky but I do. Does anybody have a similar experience with Parky?

Like I’ve run a marathon. Gone 12 rounds with Anthony Joshua and pulled a, coach from lands end to John o groats with my teeth.
Hubby

This is one of my major problems. Constant pain and discomfort, mainly in my neck, shoulder, hip and leg. Often leads to sleepless nights, which makes it harder to bear. Sometimes you just wonder if you are destined to a life of pain.

1 Like

Hello Gordo, I have suffered with varying degrees of pain since 1985 due to sporting and work injuries. Since dx 4 years ago the pains you are describing all got worse. Yes some are due to arthritis in previous injury sites. But the pains you are describing in your shoulders and legs I also get due to PD and not old injuries the worse being pain and overall tightndxx6in my shoulders and calf muscles.
I have tried many things including physio, pain management classes, swimming, changing diet and changing mattress away from memory foam to the good old fashioned coil spring. The latter giving some degree of initial relief.
In the last 3 months I have started initially with one or two per week sessions of Jingshen Qi Gong. I know attend 5 days a week via zoom 30 min sessions of this and each morning do the 10 minute warm. I am now doing the 10 min warm up everyday x5 classes and a further 4 - 5 sessions on my own each week for the last 3 weeks. I am NOT PAIN FREE, however the level of pain having also reduced dosage of Gabapentin is reduce to a level who h I find acceptable. Might be worth searching for something similar in your area?
Hope this help or gives you somethi g to think about and or explore :sunglasses: