Pain

[Annie11]

Hi I was wondering if anyone has had pain , type and how you medicate. Do you get relief?

[Serenity_finaly-1]

Yes I do have some pain....

youtu.be/wUJccK4lV74(Not working as expected?)

I use cannabis.....

only thing that helps.

[Xenos]

Hello Annie,

two things helped me for muscular pain

- gym (weight lifting and fitness) I know it's weird but instead of adding to pain, it is as if it suppressed it ;

- amitriptyline ( tricyclic pain killer and antidepressant ).

Disclaimer: I'm not a doctor, I'm an aviation engineer, and not a very good one

[Hidden]

Upping my dose of sinemet and adding cymbalta has really helped my pain. I still have muscle pain but not severe like it used to be.

[Bailey_Texas]

Good morning Annie

I agree that exercise helps with pain.. I have pain so bad at times that i can not bear it i walk through our house yelling and screaming at the top of my lungs. My PD pain is not like any other pain i have had. I have ran a drill bit through my hand and not even complain. But PD pain is more annoying than pain, For me the pain is deep inside my hands, feet, arms and legs. I t can be on one area or any combination of areas. The only thing that stops the PD pain is Carbadopa/ Levadopa (Senimate).

[Annie11 in reply to Bailey_Texas]

Hi Bailey.. I am sorry to hear you are going through this. You would think that with all of the great minds in the world they could at least solve the pain issue even though we are all individual. I gree that for me as well I will take 1/2 tab of Sinemet mostly at night which does kick in and gives me an ok sleep. My neurologist has suggested a duodopa pump. I have spoken to a patient and his wife who say he has had a much better quality of life. I don't feel this quality of life and it needs to be....

[Bridielena]

I have excruciating pain in one shoulder from the Dyskenesia constantly jerking the whole left side. Pain with Dystonia in both feet upon getting out of bed. It goes after 10 mins or so.

My GP has given me a very strong 💪 pain killer...1 only at night. Worked brilliantly in the beginning but not so effective now.......resort to Deep Heat rubs or similar. I also grind my teeth day and night and subsequently I have broken teeth....more pain.

Arthritis and low back pain but I would have had these anyway....nothing to do with Parkinsons.

Cannabis I tried with no effect whatsoever....

I intend to use our Gym but procrastinate., as for our swimming pool it’s nice to look at. It would be of benefit no doubt but I need a helper as husband works 24/7 and can’t be there with me.

Only other pain is mental anguish dealing with this monster.

I wake up in the morning and realise...yes...it was only a dream.

[Annie11 in reply to Bridielena]

Thank you for the info. How old are you and where do you live. I'm 63 and live in Alberta, 🇨🇦. It's seems the only thing that's helps with pain is taking an extra half of Sinemet. I usually do this at night.

[Annie11 in reply to Annie11]

Are you saying you were only dreaming?

[Bridielena in reply to Annie11]

I meant , in my dream life is normal , and then , I wake and realise it was only a dream and reality is I HAVE PARKINSONS.

[Bridielena in reply to Annie11]

I’m Australian. Just turned 70. Awful night . Can only stay prone for about 4-5 hours. Leave the bed for my chair in sitting room, somehow willpower takes over to get me there without falling. Pain everywhere although I could describe it as a cold numbness also. My shoulder pain can bring tears but Deep Heat massaging really helps. I can just reach the area without asking for help.

It’s now 5 am so I’m about to start my meds .....they will kick in in about 30 mins. All pain generally should be minimised.

[Annie11 in reply to Bridielena]

Hi..it seems to me that you should be able to have some relief from your pain? I will break and chew a Sinemet if my pain gets worse and take it with club soda..that helps to dissolve the medication quicker.

I'm so sorry you are having to go thru this.. I know exactly what you mean by cold numbness. I get that as well..

How are you feeling now...do you have anyone with you

[Bridielena in reply to Annie11]

Oh yes...a husband who sleeps through . He is very very difficult to wake...also has loss of hearing....at 1.am this morning could no longer stay in bed so into walking frame which i propelled backwards down the hall until near my chair where i fell into it. I wish someone could video me doing it..quite inovative. Im not comfortable there really but im upright and dont feel so trapped. My ipad is great then where i play Solitaire or do a jigsaw or research on everything Parkinson's.

What i haven't mentioned ...i am on my own Trial of Byetta... a weekly injection. into 4th month. Have had some really good days interspersed with the mostly now ordinary days. Im hoping the good days will pass the bad of course but how long it will take is unknown. It is Trialling in the US for Parkinsons. As the drug is already on our permitted list for Diabetes my Neurologist was happy to let me try.

Im now into my 13th year.

Its a relief to talk things over with people going down this journey with me.

[4000Nights]

My pain is worse when I first get out of bed in the morning but abates as I stretch and move. It seems to me that the more frequently I exercise and/or if I don't sit too long... if I get up and move, the pain is far less or gone.

Otherwise I treat pain like others without PD do... hot shower, ice packs, Advil. Others who are my age have pain too. It is not necessarily PD caused.

[laglag]

I used to have pain in my legs & groin area. A friend suggested Emergen C and after about 3 weeks the pain was gone. It has worked for some on this site, and for some it has not. It's worth a try. It has 1,000 mg vit C, B vitamins, magnesium and electrolytes.

[bassofspades]

Curcumin relieves pd pain but is short acting.

[Annie11 in reply to bassofspades]

Yes I do take. Stopped for a couple of days..will restart

[DianeJ in reply to Annie11]

I do have quite a lot of back pain. Because of being on a blood thinner, I can't take regular pain meds. I use Tylenol arthritis strength, two capsules daily. This seems to give relief and is safe to use according to the Dr.

[sharron2]

Anyone on blood thinners needs to read about drug interactions with herbs and spices. My husband is on Coumadin and lots of stuff that may work well for others is contra indicated for people on blood thinners.

[Jogger20June]

I started a vitamin and mineral supplement regime over the winter in order to help with colds and took them for three weeks straight which I usually never do, as I used to be sensitive to them. I am a different person now, and I feel hope coming back. I could hardly walk, was shuffling side to side, in constant pain, and over three months am doing very long exercise sessions of over 20 kilometres per week. Which of the components are doing the trick, I don't really know, but all I know is life is worth living again, I could shout it from the rooftops. Ask me for details and I will tell. It is just a supermarket supplement, nothing fancy but it has a lot of stuff in it. Costs $20 a month.

[bibsie in reply to Jogger20June]

Hi Jogger,

I just found your post. I am looking for ways to combat pain for my sister who is 8 years into this disease and has miserable pain. What supplements are you taking?

[Hidden in reply to bibsie]

bibsie,

This is a copy and paste of a post which I recently put up that discusses pain a bit and may be helpful for your sister. The links don't work in this copy and paste and it will be easier to use the links by going to the original post here if you want to see the links :

healthunlocked.com/parkinso...

It is difficult to try and make suggestions without a diagnosis of what is causing the pain. You mention lower back and right leg pain which can be caused by many things. The fact that he is doing very physical work is going to make the healing process long and slow.Here are a few suggestions for things I have used for back issues in the past and you should run these by his doctor to make sure they will be safe for your husband to try.First try topical magnesium chloride oil in a spray bottle(mag oil). Apply to the entire back, neck, butt, stomach and legs. If the feel of it on the skin is not comfortable, apply a small amount of body lotion on top of the mag oil. The mag oil can do several useful things. One, it is anti-inflammatory, two, it helps relax the muscles which can relieve pressure on the spine and nerves and three, it can relieve some nerve pain in some people. Fourth, magnesium has other benefits to the body, especially the heart and brain and can help to relieve muscle cramps related to PD. With body wide application of this type, it can also have a mild laxative effect if constipation is also an issue as is often typical in PWPs. I have never noticed a difference from one brand to another so the cheapest is likely to be similar to the most expensive. Here is a link for a fairly inexpensive one :amazon.com/Life-Flo-Magnesi...This less than $10 bottle will be enough to find out if mag oil will offer your husband significant relief. If it does, you can then make your own mag oil much less expensively as I have outlined in the following link. I should mention that even though oral magnesium is very good, it can not do what topical mag oil can do in terms of pain relief. I have written about mag oil here for more information:healthunlocked.com/parkinso...Another effective topical pain reliever you can try is to take an ibuprofen softgel and puncture it with something pointed like a toothpick. Squeeze the contents into about an 1/8th ounce of body lotion in a small container like a shot glass. Use the leftover toothpick to mix the lotion and ibuprofen together. Apply the mix to any painful areas. I have outlined this in the following post :healthunlocked.com/parkinso...Another consideration if you and your husband ever decide to test HDT is that some users have gotten pain relief from using HDT along with the other benefits associated with its use in PWPs! I have written about HDT here for further explanation on its many benefits in some PWPs:healthunlocked.com/parkinso...More recently I have been experimenting with a couple of homeopathic remedies which are also quite helpful, but a bit more expensive, so the first two options may be a little easier on the pocketbook and the magnesium is good for the body and PD overall so if it is effective for your husband, that would be easiest and sufficient until he gets a proper diagnosis! Remember to get his doctor's approval before using any of these and good luck! Please keep us posted on his results because "pain" is a very common symptom in PWPs and your feedback could potentially help others who are in pain!Art

[bibsie in reply to Hidden]

Wow! What a comprehensive reply. The magnesium looks/sounds promising. Definitely worth a try. Many thanks.

And Happy New Year.

[Jogger20June in reply to bibsie]

They were regular vitamins and after a few months I stopped taking them. It was making me overactive. I have decided to continue the exercise and not take any supplements.