Help pain for 3 years: I'm 69 been... - Cure Parkinson's

Cure Parkinson's

26,574 members27,880 posts

Help pain for 3 years

Shol profile image
Shol
14 Replies

I'm 69 been diagnosed 8 years

I'm on 4 250/25 a day and 4 comtan a day

The problem is I have excruciating in spasms after taking the medication which can last up to 2 hours I was told by a gp they are off periods

The pain is so bad I'm off endone and I take panadol osteo

The more stressed the worse it is

Hope u all will have a good 2016

Shol

Written by
Shol profile image
Shol
To view profiles and participate in discussions please or .
Read more about...
14 Replies
beauxreflets profile image
beauxreflets

I know we are all different and progression varies - I was diagnosed 11 years ago and I am on a far lower doses of Stalevo etc. -

WOW 3 years in pain! How often do you see the Neurologist?!

paddyfields profile image
paddyfields

If it is wearing off, then the answer would seem to decrease the interval between doses of meds,, whilst possibly reducing each actual dose? I am not a medic so the reducing the individual dose part of my comment is speculation. It is easy to conclude that the symptoms are do to with the taking of the meds whereas the last meds are still wearing off and the new sinemet plus tablet takes at least half an hour to reach the maximum in your bloodstream.

The management of PD can be complex and the average GP really does not have the knowledge. The fact that he offered no suultion in an apparently "like it or lump it" way would seem to confirm this in your GP's case. .Do you have a nurse specialist in your area ? You can find out on the Parkinson UK website. You should not have to suffer this degree of discomfort and it is worth trying to get an earlier appointment with the neuro.

metacognito profile image
metacognito

I hope you can find a way to get another, better qualified opinion on the meds you're currently taking. It's possible that some adjustments in type/dosage can improve your situation.

Shol profile image
Shol in reply tometacognito

Thank you for your kindness

Yes I have suffered ,I have been to two of the considered best neurologists in Sydney

I was told the pain was not parkinsons

So I went to a pain specialist,and several specialist and I was hospitalized twice ,some of my family and I was beginning to think it was allin my head,but when I went to the mental health clinic ,at 69 I have never suffered so much even after 3 bouts cancer this is the worst , I try to be positive sorry to ramble on

christymw profile image
christymw

I question whether you are experiencing side effects from too much medication rather than wearing off. 250/25 is a large dose. Sometimes a smaller dose of sinemet take more frequently is a better option.

Shol profile image
Shol in reply tochristymw

Thanks I will try nice of u to reply

dreem profile image
dreem in reply tochristymw

agree

Beckey profile image
Beckey

Shol, 3 years of excruciating pain is 3 years too long. The GP didn't recommend trying another med or another dose (or another doc)? What does your neuro say? Keep us posted!

Shol profile image
Shol in reply toBeckey

Thanks Becky

My neuro has reduced my sinemet

Beckey profile image
Beckey in reply toShol

Any results yet?

Hikoi profile image
Hikoi

Shol

That sounds very much like dystonia from too high a dose.

You are in Australia I see. I have contacts there who may be able to advise. You can post here or private message me.

Shol profile image
Shol in reply toHikoi

Thank you for reply

I went to the urologist yesterday and funnily enough he reduced my meds he said I could half the dose in the morning, as I found if I halve it and take the remainder later I don't get so much pain .

Yes I would appreciate any help or referral in Australia . I live in Sydney with a livein helper but I am very stressed my helper left to go home and I am unable to find a replacement as I have these spasms and then I'm normal .i am considering going to re sprite for a few weeks but I'm in fear to go to a nursing home as I'm. Only 69 which is young for a home still ill wait and see if I can make it for a while still

Thank you so much

Shol

Shol profile image
Shol in reply toHikoi

Thanks Hikoi

It's so nice to receive your replys

I've just had enough it's so tiring. As I'm not getting much help withdrawn from my friends and I was always out and about but now tied to the house

Have u tried dance with Parkinson I went for 2 years but not able to attend which is sad

Never mind be positive and that's how I have survived

Love to all.

Hikoi profile image
Hikoi in reply toShol

Hi Shol

I don't live in Aussie but have regular contact with people there. I will PM you

Not what you're looking for?

You may also like...

Need help please

Hi I'm a new member. I joined because I don't know where to turn..My husband diagnosed with PD for...
emv2016 profile image

Help Needed! Selegiline?

I am on Sinemet/ Zandopa 4 times a day, including 3 times during the day and 1 before bedtime. It...
LauraYu profile image

HELP

I never thought I would say this but I feel like I'm losing this battle! Wife wants a divorce! kids...
Stevenmast profile image

Help!

I feel like I am sinking into despair. This is the 4th neurologist I've been to. I'm on sinemet...
michaela13 profile image

Suggestions For Reducing 'Off' Time

I sent this message to my Neurologist from Mayo Clinic who works under Eric Ahlskog who wrote “The...
tandolino profile image

Moderation team

See all
CPT_Aleksandra profile image
CPT_AleksandraAdministrator
CPT_Anaya profile image
CPT_AnayaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.