Background - I have ben taking Sinemet Plus for about 6 years, Amantadine for about the same and Azilect for about 4 years
Question - As I have seen many references to pains in the hip and knee (like arthritis) and thigh (like you've been overworking them) I wondered if these pains are a side effect of a particular Drug
Request - Could people with these specific syptomsle please tet me know what drugs they are on and for how long - to see if we can narrow this down?
Thanks
I have been on Amantadine for over 11 years and Sinemet for over 10. I have the same pains in my hips but I am also 12 years older. I'm 66 now and it could be just age??
Thanks Larry33b
I should have said in my Background that I am 68 at the end of July and should have asked if any respondents minded giving their age
I am not so sure that it is just age - but that is what I am trying to determine - is your pain only in your hips - nothing in your knees or thighs?
Bob (Froggatt55)
I am on Stalevo and Requip XL. I was diagnosed 6 years ago. I have pain in my hips and right knee. Have been told by GP, Consultant and physio that this not caused by the stage of Parkinsons I am at. One is lead to think it must be drug related. I am 69 and x rays have shown that my knee does not show any problems. I have slight arthritis in my hip. My knee is very painful and stopping me from exercising and walking very far. The pain is severe and I am not imagining it.
Thanks for asking this question. I have an appointment with my GP early next week to may be able to go with questions to ask. Am on holiday soon, so need help before then.
Thanks Court
I should have stated tht I was diagnosed just over 9 years ago - thanks for adding that to your response. This is good information - I am seeing my Neuro Physio tomorrow - yes, Sunday because she was away at a World Phsio gathereing last week and could noit give me my fortnightly massage and will ask more about "the stage of Parkinson's"
and it's implications
I too find my knees are so painful at times that walking the dog can be a nightmare - and she so loves her walks
My GP is lovely but totally ignorant of Pd so could only go to her to rule out any physical cause
I believe that People with Pd are the most knowledgeable followed by Neuro Physios and Pa\rkinson's nurses and then Consultants - whose knowledge varies enormously
We'll get to the bottom of this I'm sure with all our knowledge an experience
Bob (Froggatt55)
We have two dogs so know how difficult walking them can be. But I am determined to do it as it is something I really enjoy.
My GP is, like yours, really lovely, but is not very clued up on Parkinsons. However, I respect her opinions as we have got through many difficult ailments together. I am also on statins and know that joint pain is a side effect of them.
However, I do not feel that this is the whole answer, but would love to know what is.
I forgot to say - Have a great holiday Court
Bob (froggatt55)
Have been reading list of side effects for Stalevo and see that joint and muscle pain are listed. However, I am not sure that this is the cause of my various pains, Really need to get some answers and solutions before my holidays as I had hoped to be doing some walking. Hotel food looks good so I will need to walk it off. Don't want to gain any more weight. Can't lose the weight I already have! Parkinsons has a lot to answer for!!!
You are definitely not imagining this. I am 64, have been diagnosed and treated for 5 yrs. When treated with Amantadine my feet, ankles and chins became very swollen, discolored an painful. After being taken off they returned to normal. I have been on Stalevo since then with fairly good results.
I have been home bound for the past year with excruciating pain in my right hip, back and thigh. I have not been able to walk unassisted or very little at all over the past year. During this time I havev also had a spontaneous fx of my left hip, pelvis and L4 spine due to Osteoporosis and I have a severe Scoliosis. All this being said, it's been like which came first, the chicken or the egg?
Pain was not even controlled with Oxycodone, Duragesic 100mcg patch, Lyrica, Cymbalta and Ibuprofen 800 mg, all at the same time. Still I could not take a step w/o severe, crippling pain. My neurologist never seemed very impressed with the leg pain being related to the PD and I am not saying it isn't so you see my delima?
Finally my physiatrist recommended placement of a spinal cord stimulator internally placed along the side of my spinal cord. It works like an internal TENS unit and I must say althogh it is not 100% it has significantly reduced the pain level to the point that I can walk unassisted and can get out of the house for something besides doctor appts. One more interesting note; my Parkinson's symptoms seemed to have significantly abated as well. This has yet too be discussed with my neurologist who had already discussed having the DBS. I will keep you informed.
I have recently (yesterday) after a blood test this week, been told I have very low Vit D levels.
This can cause bone pain which I have been having a lot of for months now.
I realise being vegetarian may have a little to do with it, but I am careful with diet.
suddenly now, whenever they do blood tests they find something new.
whether they were there before the diagnosis and drug treatment I dont know..
So one has to concur with the fact I am ignorent in this respect.
<whether they were there before the diagnosis and drug treatment I don't know.>
If at all possible, get copies of all of your tests and keep them in a loose leaf binder in a safe place and check your own against previous ones.
One interesting aspect to US and UK medical treatment is you often get a printout of test results. ( I have a friend in the US who keeps them in a file) Here in the UK it is not that easy to get hold of such things.
Even though you are supposed to be able to see your medical notes. Again it is not routinely easy to do so.
I to was told vit D was low and put on50,000 units of vit D for 2 Months. Not any better my knees still hurt and now take 5000 units a day.
Thanks oldtyke
I think the issue of VitAmin D deficiency could be very relevan to the pains we are getting and intend to follow this up
Keep in touch
Bob (Froggatt55)
Thanks to those who have responded thus far and I would encourage others to do likewise. As I have stated we collectively know more about the condition than any medicos (no disrespect intended)
Thus far we have "the stage of Parkinson's"?; Drug Related?; Vitamin D deficiency?
I have also mentioned my growing interest in Nutrition and Supplements - which i have been thinking about (but doing nothing) for some time. Wel I don't know oif you saw the Horizon programme on Eat, Fast and Live Lnger - which you can view on You Tube. Well that has got my partner - who does not have Pd - and I very excited. She has started the 5 days eating normally and 2 days fasting (it is not a starvation 2 days but very restrcted calorie intake) and feels the effects already. I have been warned that it could be contra indicated for PwP so haven't really tried it yet
My exercise regime - primarily with weights - is ongoing but currently reduced because of pains.
I intend to beat this monster and welcome your involvement
froggatt55
Just an opinion, but perhaps the two days of fasting may upset the medicine absorption. would it be better to keep to a sensible diet seven days a week.
Just a thought
I wish you all the best with the experiment but please do be careful.
I have dx 8 years. On sinemet 6. I have excruciating pain in knees and one hip. I had one torn meniscus 7 years ago, the second 4 years ago, plus a tear in hip adductor. Lots of PT helped. Interesting note: After hernia operation with 2 days of no meds, I had NO PAIN. But I could not stand up! Then as I started to remedicate, pain came back. So go figure I walk everywhere with walker. Worst is abdomnal pain -- my worst symptom is constipation which AGGRAVATES knee and hip pain! Seeing new GI doctor in Sept. Praying for solution through diet and exercise.
That seems fairly conclusive PatV.
I would like to try coming off all meds just to see what happens to the rest of my body but that would require a stay in hosital. The beauty of that is I heard recently from one of the UK's top neurologists Roger Barker at a lecture during which he said that the ability to match those drugs most suited to you is available now - although not in practise. It would be a great opportunity to trial this - perhaps when I win the Lottery??.
Like you my worst symptom is constipation but I now have a large bowl of fruit - including dried apricots - every morning and 2 Senna tablets at night AND drinking lots of water addresses this successfully
I am assuming you are from the USA (the "go fgure" was the clue) and it is marvellous that we can communicate internationally on the topc of Pd. Good luck and keep in touch
Bob (Froggatt55)
Constipation is one of those constant problems many PD patients have and you may want to look into Plantago ovata - psyllium husk. It is a known constipation aid:
And it has been shown to help level out dopamine levels in PD patients:
A randomised clinical trial to evaluate the effects of Plantago ovata husk in Parkinson patients: changes in levodopa pharmacokinetics and biochemical parameters
"Plantago ovata husk administration caused a smoothing and homogenization of levodopa absorption, providing more stable concentrations and final higher levels, resulting in a great benefit for patients."
bmccomplementalternmed.biom...
55 here and PD for 5 years. I am on a all natural regimen and do not have the pains noted in this thread. Though I have old fashioned osteoarthritis and am doing a good job to control its symptoms.
I've been in pain for years now. I'd like to blame the drugs I take, but I think it's all Parkinson's. Last yerar my neurologist did shock treatment on my legs,He came up with this story, the nerve sheaths were coming off of my leg nerves, so he sent me to a blood doctor to check for any auto immune disease causing it. I had a huge number of blood tests done and he never mentioned it again, now my arm hurts he wants to do the nerve study again, this time on my arm. To be honest with you I think its all a crock. He feels better when he has answers for me.
I think we should all feel better if we could get answers, but this disease it seems to me affects everyone in so many different ways. What answers one question creates another.
Hello.
The pain is what sent me to a Back DR. I had pain from my right jaw, right shoulder, lower back,hip,calve and foot! So, I went thru all kinds of tests... Finally I ended up in a Neurologist office.. And DR diagnosed me with Hemi - Parkinson"s disease. But yes pain is my number 1 complaint and then my abnormal walk.
I am now having physio for my knee, hip and back pain. My lovely physio tells me that some, though not all, of my problems are Parkinson related and has given me some exercises to help. My posture has suffered and the pain appears also to be caused by degeneration to my hip. As I go on holiday in two weeks, I really can only hope for a miracle!
As my hip pain forces me to take frequent rests whilst walking, I caused myself another injury. I was sitting on a rock when walking on the beach - thought I had chosen a flat rock - when I slipped and fell onto another rock. Now can add cracked ribs to my list. These have been the most painful and,, unfortunately, I have to wait for them to heal themselves, Been 6 weeks now and still counting!! Aint life fun!!
Ow. Yes it is. Thanks all. PD & the meds play with ones mind & attitude. The less you do, the less you CAN do. &c. 
If I had the energy to work all day I think I would feel fine, when I have things to do to keep me busy my symptoms seem to lessen.(apart from the pain) once a project is done symptoms seem to come back with a vengeance.
I do seem to suspect PD and the drugs involved can play mind games.
At the weekend I had an awful swollen knee joint, and was told to rest it.
But the wood floor in the sitting room needed polishing, and if one thing annoys me it is neglected housework. I thought to myself ''bugger the knee'' and got down to polish the floor (on Hands and knees as I always do) The next day the knee felt much better.
Now it's moved to the shoulder of the Polishing arm.
Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!
I don't have joint pain and very little stiffness in my right wrist, BUT I've been having a weakness in my thighs for about 8 years but have had a diagnosis of PD for only 1 1/2 years. The pain goes from a 0 to level 8.
I do an elliptical exercise 5 to 6 days a week and am finding the pain I have to over come to do the workout is getting worse. I've complained about it to doctors but it is associated with just getting older (I'm 65). Having played baseball and volleyball for years, running 5 to 10 miles a day, swimming laps 5 days a week, etc for years, I'm familiar with pains... but the thigh pain isn't like normal exercise pain.
The pain is transient and variable. Sometimes a massage helps. Sometimes not. Sometimes a hot bath helps. Sometimes it seems positional. I've had a Doppler test, x-rays, CT, MRI, etc. I have gone off my Lipitor but there was no relief/change. My PD specialist didn't seem to associate the pain with PD but my family doctor does.
I am finding it a bit difficult to sit and rise from a toilet. A grab bar I had installed years ago after an ankle surgery, has come in handy.
Can anyone relate to this? Has anyone found relief from the pain?
Hi Rob1
I exercise a lot - have recently started boxing training and I too find that my thighs feel week - ding squats with / without weights are very hard. It seems like they are being over strained but that cannot be the case
I have got a recumbent bicycle to see if using that regularly helps.
We are off just now to look at a rescue dog - ours died last Year - which will get me walking again
I have ordered grab rails for the toilets - as I have the same problem
this isn't much comfort to you but I believe it confirms that the pain is Pd caused
Kind regards
Bob
I have severe hip, thigh and leg pain limiting me from walking very much. I am on Mirapex and Sinament for 10 years. Could it be the drugs? Need help
I am 69yo. Dx four years earlier. Amantadine for tremors only drug. Started Amantadine long after hip pain started so not med related. Asked my Neurologist. Does not connect PD with my hip pain. Since July I have had fight w/ pain. Two times on course of prednisone after ortho doc and xray saw no problem w/ hip joint, still pain. Wednesday I went for exam by family doc. Prescribed pain meds. Did not work as last night while turning over in bed the pain was so sharp I hollered loudly. Trying today to connect with my family doc and ask for help. Maybe MRi or Cat Scan.
My right knee locks up off and on. I have severe foot and leg pain. X-rays show arthritis
i had left knee replacement 2008 right knee 2010 been having pain in left knee nd hip wondered if its age factor iam 81 or pd
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