My husband has had bad pains since April and I have been the doctors with him a few times but nothing has been done, they said it was stiffness due to parkinsons, sent him to physio and that made him worse last month I had had enough of this it seems no one wanted to sent him for a MRI, the physio said i should ask his parkinsons consultant but trying to get an appointment at the Walton Centre is impossible they said I should ask our GP to write to the consultant, have you ever heard of anything so stupid. Anyway I did demand an MRI and low and behold my husband has multiple fractures and a bulge around a disc. I am annoyed this was not found earlier Tom has been in so much pain, GP is now testing to see what the cause is, up to now there is nothing in bloods or urine, we are waiting on Bone density.
Can I ask can someone with PD have fractures like this because of the way they tend to stoop, the physio still gives Tom light exersize and we all do try to make him stand up straight but I worry that this might not be good for him if his bones are so rigid perhap phsio is making the fractures, he has not had any recent falls.
Anyone out there had same or similar problems
Hi im not answering your question above sorry,just asking for some advice ive started to suffer with really bad shoulder pain at night time.i take at 8.00pm 1-125mg sinemet plus & half a 62.5mg. think its wearing off to quick when i go to bed at 9.30pm-10.00pm in bad pain ,can not up my sinemet at 8.00pm as really sensitive,thats why i take half a 62.5mg, weird. and cannot take another half 62.5mg at 10.00pm as again really sensitive,have spoke to my pd nurse and im going to try replaceing the 8.00pm 125mg sinemet plus / with a slow release 125mg sinemet cr. so it will stay in system longer & slow release, any advise & how good ,& what to expect with sinemet cr/ ie. i also have deep brain stimulation. sorry to but in missmo.
Missmo. PD can certainly cause back pain, chiefly because of a stooped posture and muscular rigidity (dystonia). Don't think PD causes fractures unless it is as a result of falls. More likely it is osteoporosis (brittle bones) but this is more common in women, although by no means unknown in men. A scan should confirm if this is the case.
Gus. Can't offer you any advice regarding medication I'm afraid.
i have also suffered with lower lumber back pain,which i have regular bilateral lumber facet joint injections every 12months ,need them every 8 months really tho,but dorset pain clinic not that good.also have athritis & two crumpling disc, from my plumbing days. thanks tho
My mother suffers from severe back pain too. She is currently under a Pain Specialist for this and currently takes gabapentin and has had trigger point injections. She also has osteoporosis and her spine is curved, the GP says due to vertebral collapse from fractures of the bones. The PD stiffens the muscles and thus causing pain. We too have requested for an MRI to see if there is any other damage to the spinal cord which may be adding to the back pain or causing her burning/cold feet. We are awaiting to hear from the pain specialist if he is willing to order one as GP can't and the PD nurses can't although they have suggested one. I will let you know if we have any news.
i also take gabapentin thats for my nerve pain in legs.hope all works out for your mother
Hi Gus does the Gapentin give you much relief?
YES I STARTED OF ON 4 THEN 6 NOW ON 9,ALSO TAKE 8 CO-CODOMOL & 2 AMITRIPYLINE AT BEDTIME,AND WHEN PAIN REALLY BAD IE WAITING FOR PAIN CLINIC TAKE DIPLOFENICS AS WELL.RATTLE
Hi Gus how are you getting on with the slow release Sinemet - my mum has that at night to help with stiffness and constant getting up to go to the loo - she finds it fine? Oh yes the Gabapentin is kicking in now and she's taking it 3 times a day so helping a lot with the back pain.
hi sharon. Started off on 125mg cr worked really well,then my dbs parkinson nurse phoned to make a appt. So i told here, but said i feel like i could do with extra boost ,she said try another 125mg cr so making it 250mg cr slow release now i feel really good upto 1.00pm then i have a off period to about 4.30pm.How many gabapentin mum on ,i am on 9, 3 times 3 aday you can go upto 12. I think they are one of the best meds i have.Still waiting for pain clinic so slow down here,phone call needed again i think,also my gp has wrote to them .So lucky to have two pd nurses, got my normal one i have in feb going to ask what she thinks about taking 125mg cr at 1.00pm. Were see hope your mum stays feeling good,its nice when its right!
Hi Gus my folks couldn't believe how many meds you were on! My mum at the moment only takes one 300mg tab in the evening and one 100mg in the morning and afternoon. She also says the Gabapentin is really helping with the pain and I guess it's good to know she could have more later if she needs it.
My mum is struggling with the wearing off periods too - finding the hour leading up to the next dose difficult and then half an hour or so for it to kick in. After failing with Stavelo I think the PD nurses might try increasing her PD patch to see if that works - her next appt is Feb also. They've not mentioned cr for the day but we might mention that to see if she could try it.
I'm finding that PD is so unpredictable and changes all the time and what works for a while may not last, so we'll see how it goes but fingers crossed she gets some relief however short it my be. It's awful watching someone in constant pain and you are unable to do anything to help x
YOUR RIGHT THERE ONE DAY YOU THINK YOU CRACKED IT! NEXT DAY BACK TO NORM.THATS GOOD TO HERE YOUR MUM BENIFITS ON A LOW DOSE OF GAB! JUST THAT I HAVE FELT REALLY GOOD PUTTING UP MY CR DOSE 250MG.I HOPE IT WORKS IN THE DAY TIME AS WELL, ITS WORTH ASKING I THINK IM GOING TO LET YOU KNOW HOW I GET ON APPT ON 4TH FEB. SHARON HOW LONG HAS YOUR MUM HAD PD. NEVER TRIED PATCHES DO THEY WORK !
My mum likes her 250mg cr at night and says she feels fine throughout the night, just usual stiffness when getting out of bed but nothing too much - she just wishes the day especially afternoons and evenings could be better. She has a 24 hour patch originally 2 mg and now 4 mg - she's not sure if it does make a difference or not as it's hard to tell with all the other meds - it's such a low dose my guess is she might be better off with extra cr in the day but we'll see what the nurses say - she goes on the 14th.
she was diagnosed with advanced PD about 2 years ago after a scan however we had asked her GP to test her for years prior as she was shaking and walking with a shuffling gait however GP put it down to antipsychotic meds she was on and wouldn't refer her to a neurologist. It was only when she completely froze he finally decided to refer her! We think she had had it for 10 years prior to diagnosis.
Yes let me know how you get on with your appt and what your nurse suggests x
ok will do send my love to your mum.keep fighting
Hi Gus how did you get on with your appointment with the nurse?
hi there ,pd nurse said it would not be a good ideal to have any cr meds during the day as they are unpredictable ,and said if im only having about a 3hr off time out of 24hrs thats good ! had back injections on the 27th feb and my pain level as gone from a 8 to a 2 so all is ok at mo.thanks for remembering hows your mum ! sharon
Hi Gus, 3 hours off is good - no off time is good - it's distressing :o( Ill let you know what our PD nurse suggests when we go next week. I'm glad your back pain is better - did you have a steroid injection or trigger point? My mums waiting for her second trigger point x
We have just got back from our PD nurse appt. My mum likes the Gabapentin but as she is going for her trigger point injections we have decided to keep to the same dose for the time being to see if her pain improves with the injections but we can still increase the dose next time if it doesn't.
Funnily enough I was looking through her med list before we went in and couldn't see Omeprezole, so I queried this with my folks and they said that my mum hasn't been taking it - so this may be one of the reasons she is getting bloating ??? not sure but we have made sure the nurse asks the GP to re-prescribe it to protect her stomach! (it was on her list of meds requested by the PD nurses but she hasn't taken them for months now).
The down period between 2 pm and 9 pm our nurse says that my mum could try taking a CR midday (as well as her Sinemet) to see if this helps or she could increase her patch. My mum has opted for the patch to be increased (as she doesn't tolerate tablets well) and will see how this goes. If it doesn't work then we will try CR in the day next time we go and discuss things with them.
So it seems they all have different ideas (or no idea at all and just trying what they can!) lol