Hi all. I've been off the forum so long that I forgot my username and password so I'm once again a new member!!! I've had Parkinson's for 9 years. No I haven't, I've had it longer than that but was diagnosed 9 years ago. Just recently (over the last year) I've developed pain in my legs at night and it has now reached the extent that it wakes me up and keeps me awake because it hurts so damn much. I'm am naturally a side sleeper but after 10 minutes the pain in my hip and knee is unbearable and I have to sleep (or try to) on my back. I sleep badly anyway, courtesy of PD and the meds - oh for the days when I could sleep for 8 hours - but I can't get to sleep on my back and when I do finally drop off it's for 2 or 3 hours, then I'm awake for 2 or 3 hours, then I sleep fitfully for another hour. On the whole I get 5 hours a night - if I take a sleeping tablet I still only get 5-6 hours but it is less fitful. I would just love to wake up in the morning and feel refreshed. But the leg pain is becoming a real problem. Even sitting down in the evening it starts and I have to get up and move around to settle it down. I presume it's RLS, only my legs aren't restless they just hurt. It's a deep aching pain inside the bones rather than a sharp stabbing pain. I've tried sleeping with a pillow under my legs and although it seems to help it means I can't turn over, which is getting harder anyway. Anyone out there got any words of advice?
Hi Dolly, Is it a muscular pain like cramp? I started taking 6000 IU vitamin D3, 150mg trans-resveratrol and 600mg n-acetyl cysteine per day, and the leg and foot cramps went away in three weeks.
Most UK elderly are badly D3 deficient by USA/Canada criteria, and chronic pain is linked to that:
There is a lot on there about D3 and PD too.
And D3 will keep the flu at bay !
Do not take D2.
I take melatonin 3mg before bed to aid sleep, and it has a neuroprotective action/
Peter
Hi dolly
Yes I can relate with that, it drives me crazy at night, usually starts after tea an slowly gets worse ,in the end take a painkiller,and rub gel into ankles and knees, ,I've read peters comments with interest think I will give that ago , where do you purchase them or are they prescription thanks
Thank you both for your responses. No Peter, it's definitely not cramp although I do take Magnesium Citrate to help guard against it. It is a definite pain in my hip and knee from lying on it which then spreads throughout my whole leg. Like you Laney_star, it starts in the evening and gets worse. I've just starting thinking about rubbing in a gel before bed and will try that tonight. I took paracetamol at 4am the other morning but that just didn't touch it. I'll take ibuprofen tonight and rub in some gel and see how that helps. I went to my Chiropractor today because, to cap it all, I've got a really bad back and the moment and she is going to see if there's anything she can do once she's sorted my back out. I also wonder if it has been exacerbated by a change of meds. I was on Madopar but found that by the afternoon I was starting to get very 'sticky' and stiff so the Consultant added Entacapone to my regime. When I didn't appear to have any ill effects they two tablets were substituted with Sastravi which I've been taking for a week. Could be the Entacapone that is causing the extra pain although I had told the Consultant that I was suffering leg pain so I'll be pretty miffed if that is causing me all this grief. I'll report back in a couple of days to see if the gel has helped. Again, thanks.
Amazon.
It will take 2-3 months to get D3 in blood up as it is buffered in adipose tissue. So dont expect isntant relief.It is possible to take a very high dose to fill up the fat cells ina day or two/ BUT note the wiki advice on taking a very high dose -check you are not allergic first.
Peter
Hi,
I have experienced similiar pain at night. Mine was as a result of walking a little 'lopsided' causing extra pressure wear and tear on knee and hip. A few physio sessions on walking heel down first etc, sounds simple but need to think about movements now. My brain forgets how to walk correctly !,, also had sciatica type pains neuropathic pain on other side was prescribed gabapentin and thus had plus of reducing tremor. Now stopped taking meds and ok for now, fingers crossed.
Take care x
Hi
D3 good advice as usually prescribed D2 as D vitamin by gp as cheaper. Lots on internet about vit D deficiency being part of Parky, I had mine checked on a blood test and yes, mine very low despite milk yogurt intake and sunlight when I see the sun out. Worth checking , reminded me too to have a further blood test to ensure at correct level.
Xx
In the last year (12 years post diagnosis) I've developed shin pains, usually immediately after getting up. I put this down to dystonia. Taking, in my case, Stalevo helps.
I find that waiting 6 months to see a medic is not frequent enough to get the optimal drug regimen: the underlying condition is changing all the time, your environment is changing all the time, and your activities are changing all the time. So, I'm prepared to tweak the doses and their timing.
John
I would never take D2. It is less efective than D3. Work from Univ Surrey:
And the wiki site is on the ball too:
A 2000 IU D3 capsule costs around 2p retailed to the public.
Peter
Hi dolly
I take co-codimol and voltarol gel from the doctor ,and my daughter in law bought me a heat pad put it in microwave heat it up smells lovely and helps with the aching and discomfort,she got me a sleep box for Christmas and put all sorts in , bless ,it all helps also a good book , "what's shaking" by John Brissette ,a humorous insider's look at Parkinson's anyone else got it, hope this helps regards laneystar.
Thanks Peter
I will have a look,is it ok to take alongside your meds.
Agree Peter, D3 superior lots of information on the net, just that nhs can prescribe vit D supplements but these are often D2. I am suggesting that if a blood test is done by gp surgery and deficiency found. It may be that you are able to obtain a prescription for D3 dependant on nhs area funding etc.
I appreciate not expensive but it is another expense in managing Parkinsons. An annual prescription card would make D3 as an additional prescription free.
Free is better.
From what I've read it should be an essential addition to meds. VitD switches on genes for key anti-oxidant pathways. And as we know oxidative stess kills nerve cells, especaiily those that die off to cause PD. So D3 is neuroprotective. And should allow our remaining compromised neurones to function better.
I now take D3 6000 IU pd, and shall continue to do so indefinitely whatever meds for PD I need to take in future. USA Inst of Medicine recommends 2000 to 4000 IU pd, far more than UK bodies.
My specialist a geriatrician had not heard of VitD and PD......you might be luckier but the scince is well ahead of the clinics.
Peter
If you look on PD UK website under DIET advice, it refers to evidence that vit D is essential and recommends that vit D levels are checked. Should your GP, other medical staff be relunctant to do a blood test can refer them to this or if you have a PD nurse they should be aware of importance.
There is some advice to take vit K to avoid potential problems with taking above recommended daily dose of vit D, ( this recommended dose is for all, not as a specific guide for PD) I take it as a routine but forgive me I have not retained the information as to why and am unable to reference the source from memory.
I am sure it will be accessible on the net, vit K /vit D. I take 2000 IU and will review this and may increase in view of USA guidelines and of course , blood test results.
Why take D3:
Low serum D3 level shows a modest corrrelation with early PD progression
http://europepmc.org/articles/PMC5676984
However the D3 signaling pathways is so complex that there are downstream possibilties for D3 being less effective in PwP at protecting nerve cells from oxidative stress
http://europepmc.org/abstract/MED/26009175
So PwP might need higher serum D3 than the population at large. The science hasn't reached that far yet. However raised brain dopamine levels adds oxidative stress so taking D3 makes sound sense to me
It take 6000 IUs pd
Peter
Hi Dollydlollop,
I hope you are well.
You've received a lot good advice on this thread which is great and as TeeHee suggested, we have a 'Diet' section on our website which goes into a lot of detail about vitamin D. You can find all this information here.
However, I would advise that you contact your GP if you are experiencing pain as described in your message on an ongoing basis or do feel free to contact our helpline on 0808 800 0303 to speak to a Parkinson's specialist.
I hope you find this information useful.
Many thanks,
Reah
Thank you Peter
Your very informative, definitely going to look at trying D3.
Morning all. Thank you all for your responses and offers of help. We are in the process of moving into the house we have built so things are manic. As a consequence I have been taking a sleeping tablet every night because I need sleep. Therefore, I haven’t had the pain in my legs. I am trying to get an appt with my gp but that takes time, but I will certainly ask him about vitamin D. I’ve also stopped taking magnesium and that seems to have stopped some of the pain, weirdly. Also, in March I’m going on a yoga/nutrition weekend with a nutritionist who has an interest in Parkinson’s. I will keep you all informed. Thanks again…
I see a chiropractor on a regular basis and it makes a huge difference however, not helping my leg pain at night.
Would love to know what you learn. Really pleased things are improving and hope you are settled really soon.