Every day i get out of bed i feel as though ive done ten rounds with thysen i ache every where & can barely stand up & feel terrible if ive done excercises the previous day i ache worse does everyone with pd feel like this or is it just me gps say could be the pd could be the meds could be getting older (im 68) can someone tell me please
do most pd sufferers feel like this - Cure Parkinson's
do most pd sufferers feel like this
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daveyno9
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74 Replies
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i am in pain every day, mostly in back and my left leg and toes. I can't sit
and eat my meals in comfort or work my comutputer. I have dystonia in my leg and it is very painful. The only relief I get is when I am in bed asleep. I keep telling my neurologist and Parkinsons nurse but they are not listening.
I'm in chronic pain with my PD and have to take my meds an hour before I can attempt to get out of bed. I am 65, diagnosed x5 yrs. I have to use a walker to get around, but have a scooter to use for being on the go for longer times. It helps with the fatigue of being up. I'm feeling you pokoono. Hang in there.
Davey, This may sound overly simplistic but, when I wake up feeling as you describe, it is often dehydration. Are you getting plenty of water?
I agree. I often skip drinking enough water because I'm afraid I won't make it to the toilet. But def less pain when hydrated.
I think dehydration may help on some level. I am always reminding spouse to drink water. He was diagnosed in 2007. Has had both sides done DBS. Is still working. The best we can tell he started having symptoms as early as 2000. Prayers to all PD's
Can you fill me in on the DBS. My doctors want me to have it done . I am 52 and diagnosed 5 years ago. I am only afflicted with PD on my left side. I am seeing my PD specialist in September. I just want to be as well informed as possible.
i am a 52 year old hairdresser diagnosed 7 years ago. sometimes i wake up and dont know if i will get through a shower let alone commuting and working but i go and use all available energy to work . i somehow manage but hurt so bad i cry all the way home thinking i will feel better tomorrow.my husband cooks dinner does dishes and we both pretend im only tiredand i do it again next day.all of us feel as you do.i wish there were some relief for us all.
Hi how long have you been a hairdresser? And you're still able to work?
I have been a hairdresser for 30 years,diagnosed over 2 years ago,but I've had symptoms for 4-5 before being diagnosed.I have tremors and I am in pain most of the time,couldnt imagine working in a shop.My doctor kept telling me the symptoms were from years in the business.After 6 months went by of not working and still having symptoms I finally convinced the dr. to send me to the neurologist who diagnosed me.
i have been a hairdresser for15 years.still working .just closed my shop in feb . rent space in a shop where i have my own clientele.ii had symptoms since 2000 but only diagnosed in 2006 was told i was trying to get atttention when i saw a dr.after 4 drs. was told in 2 minutes with last dr. it is pd i am still trying to keep up at normal pace.bless you. am relieved to know people understand.
Dear Salon...my story so similar to yours. I cannot imagine how you manage to do what you do !
I have exactly the same feelings each day and every day. From getting up and tryng to get off to work to driving home hurting every mile.
When people give me a rash of b***s*** for not being to work by 8a.m.,I get so angry. I wonder how many of my them would be able to survive a single day if they walked in my shoes, our shoes.
You are not alone. Doesn't really make it any better does it? God Bless and prayers for a better tomorrow for us all....sincerely.
it is amazing to find people who do not seem like i am odd for being tired and in pain because i look normal till i walk . we are in this to help each other.thank you.
I am amazed to find so many people who sound exactly like me. I am so tired of people who don't know what they're talking about telling me that I'm lucky I'm not really sick. Yes, I am really sick. I may not have tremors but I can't hold a pen to write, I am bent over completely at the waist, I look like a slob at the very best when I eat, and I am in cohstant pain which never ends but which gets so bad when I am in bed that I dread the night. The pain doesn't allow me to sleep and I am at my wit's end. It feels so good to hear my complaints ecfhoed and know that I am not crazy, but I am sick. Of course no one wants to be sick, but because I try not to whine all day they make me feel like a liar. The indignity of it all is so hard to take. What do people want us to do, crawl along to make them believe we're in pain? I hope it never comes to that, but I need someone to help me with this pain. I'm 73 and was diagnosed at age 53 but have been told by neurologist that my history indicates that my PD actually began at age 48. I, too, look normal till I walk.
i am sorry that you are so advanced but i do understand because i to am there i fight it so hard to appear ok . i just lost my train of thought.that is happening so much lately.when i can think i will talk to you again.
You are amazing! I was dx in 2010 but a year or so before found it very difficult to walk, stand, use computer properly, or simply get thru the day at work - i quit a few months after dx .. I admire your tenacity! Blessings for your strength to continue to grow!
very familiar
most of these comments were a year ago. I wonder how everyone is doing now. New drugs or treatments help anyone? I echo most of the feelings/comments from everyone.
• in reply tollwwd
I was dx just under two years ago. I appear to have tremor dominant form of PD.
I take Coconut Oil and MCT Oil throughout the day. I am nervous. I am only inside the five year honeymoon stage of PD. Wondering what my symptoms will be in year five or six.
If or when I must do more than oil, (i'm on NO meds) I believe I will have the Ultrasound Surgery. This treatment is in the last stages of trials and hopefully the FDA will speedily approve this procedure.
For now I count my blessings that I am not suffering like so many of my PD friends in HU~ Parkinsons Movement
rsacdoolittle• in reply to
Roy, what is MCT oil? How do you take your oils?
• in reply torsacdoolittle
Medium-chain triglycerides
I gave up on CO and MCT long ago.
rsacdoolittle• in reply to
Thanks much Roy!
I don't. Know about most but I know about me, I hurt all the ttime.
That getting out of bed in a morning is often the most difficult part of the day fortunately I have a dog who can get me up whether I want to or not.
Once I am downstairs, taken the medication and had coffee I start to feel human again.
Dr did suggest taking the medication in bed and waiting an hour but once awake I really need to be up and about.
As my old Gran said, ''Folks dee i' bed, sithere git up!''
When others ask me to describe,how Parkinson's affects me that is exactly the way I try to
Explain some of its effects .Having also said this to my new neurologist he added to my script, a slow release Sinemet,know as "Half Sinemet CR 25/100". To be taken at bedtime .I already am on one and a half Sinemet Plus 25/100' three timed a day.
I definitely have experienced some improvement in my sleep pattern and the way I feel in the mornings.
I am in exactly the same state in the morning. I take 300mg of Sinemet Slow Release before bed and then 175mg Madopar Rapid plus a comtan tab at 6am when I wake up - then hopefully go back to sleep for 1/2 - 1hr then I can get up and actually move somewhat like a normal human being. The pain,which is constant,due to Parkinsons is releaved somewhat which is a blessing -If your Docs aren't listening to you then if I were you I would change Docs. Not easy I know but pain is very common with PWPD and the Docs should listen to you. I find that my pain comes and goes in different parts of my body. Back and Neck pain is always but leg, foot,arm and Glutis Maximus pain goes and comes when it feels like it!
I do not know if it is most or just many of us PWPs that have lots of pain, but it is very common...
We who do would do well to keep eachother apprised of successful pain coping techniques... I, for example have had some success with DBS and medical marijuana, as well as chi gong and massage therapy...
Best wishes,
Steve
Bisbee, AZ
Hi Steve,
i use the medical maraijuana in lolly pops. I have to be careful on how much of the lolly pop I use each night. one lolly should last atleast 3 to 4 nights. it helps me get to sleep. i have poor circulation in my lower legs and numbness in all toes. getting more difficult to keep my balance, but so far so good. horrible stanosis in lower back and neck.
does anyone get like a stabbing pain for just a few seconds and then boom, gone. in my legs, arms back etc. not all the time but just sometimes.
i find the bike riding the best exercise for me. I have a 3 wheeler, with a battery. so if i do cramp up, i flip a switch and off I go. I don't look so cool, with the helmet and flag but at this point I don't really care how I look..........
i get my lolly's from california. my two olders sons take turns in sending it. can we get it in arizona yet????
Jaynie
Green Valley AZ
medical marijuana...... my neurologist suggested this but I did not follow-through. if I thought it would work I would try it. ~~Dennis
I use medical marijuana nightly for my PD. It has been the only thing that will relax me enough to sleep. Although for me it makes my tremors worse. It does help with stiffness and getting comfortable in bed. I am somewhat of a PD newbie. Diagnosed in June of 2017 at 26. I remember having my first symptoms back in 2007 but was misdiagnosed as something else.
Im afraid a lot of us are in the same boat. Living alone if I didnt have my dog, dont think Id break thru the pain barrier in the morning. He licks me till I have to get up and let him out.
Sometimes I cant even get something on my feet! While he is doing his thing in the garden i make strong coffee (caffeine helps the meds go down) a glass of water, and then I attempt the stairs and back to bed. I then take slow release Mirapex, Stalevo, Azilect, Thyroxin and Paroxetine; and fiddle around on my computer in bed until Im ready to start the day. Ive found that if I hurt durin the day a slow easy walk will often work. Not old age.....Im 56, diagnosed aat 48.
froggatt55• in reply to
Hi Threads
I take Azilect, Sinemet Plus, Amantadine, Requip and Paroxetine. I don't know if you are aware that Azilect and Paroxetine are contra-indicated - together they could cause what is known as The Serotonin Syndrome. However IO researched tis and spoke to a number of neurologists who all said the risk was low so I started Azilect 4 years ago and it changed my life - it made every other drug work!
To minimise the risk - I honestly don't know how effective this is but psychologically it works - I take the Azilect with Drugs 1 (Azilect, Amantadine, 2xSinemet Plus) - Drugs 2 is Amantadine and 2zSinemet Plus - and take the Paroxetine with Drugs 3 or 4 (I sometimes take my Requip as Drugs 3 with the third dose of Sinemet Plus and Paroxetine as Drugs 4 or combine the Requip with the Sinemet and Paroxetine to make a combined Drugs 3
See below for my response to Pain
• in reply tofroggatt55
Yes I am aware. Right from the beginning the doc that prescribed them told me!!!!!!! I am trying to persuade my specialist to take me off Azilect as not only do i think its not doing anything, the pharmacy has a hard time getting it.
JAYNIE• in reply to
you could NEVER, EVER get me to stop my Azilect. I think it is a wonder drug.........and it has kept me going for the past 15 years!!!! I was diagnosed in 1998. was going down hill fast.....and I heard about Azilect, and my doctor told me if I could get it ...go for it. it was not available yet in the USA. I got it from Israel, right from Teva pharmacy.........it brought me back ...won't cure me but definetly has slowed it down..................
I will never stop taking it.....................
Jaynie
Green Valley, AZ
JAYNIE• in reply to
my dog for sure keeps me going...........he is sooooo patient with me. I LOVE living alone with him.....
you are young, and I am old....(sounds like an old song)
"I'm so young and your'e so old, oh my darling I've been told" la la la la
a positive mental attitude is for sure the best medicine...........and a sense of humor !!!
I'm 74, and diagnosed in 1998.........60 years young. doing pretty well for 15 years.
starting to slow up a little ......
• in reply toJAYNIE
When we are cured we will start a double act, comedy and singing!
JAYNIE• in reply to
LOL..........and we can be called the "The Parkies"
maybe if we just practiced i would be the exercise we need.
I will write a song for us...........
by the way, I sing Alto........
• in reply toJAYNIE
I sing when Im happy!!! Rock and roll to opera! (not necessarily in the right key)
rory3028• in reply to
I sing also, although you would all probably run for rhe hills if you heard me. I used to have a nice voice, not solo quality but great in a chorus because I could carry a tune, but now I think I'm going to clear out the whole church one of these days. I used to sing alto, but I have no group I could fit into. It doesn't matter, though, because I belt it out when alone, which makes me happy.
My daughter and I have found that when I am having a particularly hard time walking due to "freezing" in place and shuffling along, if we sing together I can take much bigger steps in time with the music and we laugh and have fun with it. We usually sing "I could have danced all night" from "The King and I", don't ask me why, but it works. We usually start out in the right key (sort of), but we end up laughing and silly. We both seem to love it and if the rest of the family is there we can hear them in the background teasing us with comments like "oh, no, there they go again," or " quick, make a break for it, they're getting louder,." Just a thought, a little giggle never hurts and sometimes even PD can bring a smile tro your face.
Yes Yes Yes. You are not alone. When I was diagnosed with PD noone told me about the pain that I would ultimately be experiencing. I was luck y somewhat in that I was diagnosed in2004 and did fairly well until this last year and now, well now all I can say is that the pain tests my tolerance threshhold every day. Because my walking gait has changed so dramatically, I have developed chronic/acute sciatica (almost dibilitating in the morning) I have shoulder pain much like bursitis and because I have already fallen twice and broken both wrists, I have arthritic pain as well. I also experience the foot/toe cramping occasionally that is so painful. ;This all keeps me from sleeping the night through so I am up most of the time from 1 am til 4 am. I then crash from exhaustion and wake at 7 take my meds and about an hour later I am motivating sufficiently to get ready for work. Mostly, I feel as if I am very weak and fragile. I have to be cautious with every step. No movement is automatic - it has to be all thought out - otherwise I will lose my balance and fall. During the day the pain subsides somewhat - but I dread going to bed.It seems the lack of movement makes the pain surface with a vengeance. I am 66, live alone in Mexico and am determined to keep the nursing homes at bay. There is no one to help or assist, to cook or to clean. I have always been strong and determined and I suspect this trait will be the one that keeps me sane the longest. I am fed up with the lack of real concern the doctors have and the medication changes for this or that, with food without, with protein without, long term release/short term, etc. etc. I just take carbidopa-levodpa 25/250 and comtan 200 and mirapex 1 mg each every 8 hours and wait for those wonderful "on" periods where I can really be me and accomplish physical tasks.
Good luck to you and all of us who have PD. It is the most frustrating "non-illness" anyone could have to love with.
Cathi,
Your story made me cry....you are so amazingly courageous! You said it best when you said PD is the most frustrating "non-illness" anyone could have to live with!
It truly is an awful feeling when going to bed is THE worst thing you can imagine.
I will think of you when I become weak and want to give up, your strength and determination is an example to us all.
Thankyou so much for sharing with us.
God Bless
Sheila
The pain I have is that of stiff muscles, just like a non-PD person will get after an unusually large amount of exercise. So the pain is not extreme but does make it more difficult to to get going.
If, having just got up I force my self to move and ignore the pain then after some effort I become more loose and the pain lessens.
So for example if I drop something I probably feel very reluctant to bend down to pick it up. But if I force myself slowly to bend down then that stiffness eases a little and I feel very glad hat I did force myself to move. As the day continues,with the help of (mostly) Levodpa If I am able to keep busy then I can almost believe that I am normal.
I often find I have a better day if I take a couple of paracetomol.
This all seems to be due to PD rather than old age as i am 54, was diagnosed in 2007 and looking back I think ikt al started in about 1998.
I too wake up every morning with pain - mostly in my legs (like a very bad cramp). I do stretching in bed and then get up as movement relieves (to a certain - but significant - extent) the pain
Pete-1's description of his experience with pain and slowness most mirrors mine.
I am 68 and have been diagnosed 10 years but still can cope without medication for the first 2 or 3 hours (I can only assume my dopamine levels increase a bit during the night?). I normally start the drugs at 10.00 and then every 4 hours - but I have started at 11.00 but lost my nerve at 12.00. Having said all that, it assumes that there is only my partner Josephine and I here. Anyone else around increases my stress levels shoot up and it's "just get me my drugs"!
I'm afraid that pain is a part of PD. I am learning to organise my pills better - when I wake,I take a fast acting Madopar, Gabapentin and paracetamol and they help to get me going.
By the way, I am in my 77th year and have had PD for nearly 12 years.
Regarding pain control, something else to think about. A week ago, I underwent six hour surgery on my spine to try and "reset" a vertebra which had gone out of place. Prior to the operation, we explained very clearly that I had a very very low tolerance to morphine to the extent that it was wiser not to use it. Whilst the surgery went as it should, and the administration of my meds was successful, sadly, someone messed up with regard to the morphine and my husband turned up at the hospital next morning to find me thrashing around wildly with extreme dyskinesia, gurning furiously and hallucinating. I was also unable to answer any questions sensibly. Apart from some dyskinesia, I had never experienced anything like this and hope never to do so again..
After some time and discussion, my husband managed to get the morphine stopped and in 24 hours I started to return to normal. Apart from the fact that I shouldn't have been given the morphine in the first place, the reasons given for the reaction were, (1.) It was a combination of pain and PD and (2)it was a combination of Parkinson's medications and morphine.
Has anyone with PD had a similar experience?
Wow! It's very interesting that all of us have different experiences with pain. Mine is only in bed. During the day, no pain. In bed, after 3 or 4 hrs sleep, I wake with needle-like pain in one of my buttocks. The feeling is so hard to describe, but it feels like a pinch of many needles. For me, this disease is really a pain in the a__! lol (sorry, couldn't resist)
I am 68 and have had pd for over 25 yrs.
Yes. I describe my condition as feeling as though I ran a marathon the day before. I wake up stiff but then do some qigong before breakfast which helps tp loosen me up. I am 51 and was diagnosed 18 months ago. I don't take any meds as my symptoms are mild. I also do yoga which also helps a lot.
The pain factor seems to be a bit of a "no go" area with the medical establishement. I had a lot of lower half aching at the time of dx especially at night.and the PD nurse looked doubtful and said that is usually much later, I also had hip bursitis and sciatica which is linked to stiffness but that's probably not the whole story. I ended up in tears over the phone trying to get an appointment with my GP after literally dreading going to bed for months on end. I said to the receptionist I've just been dx withh PD and I don't know whether this is normal or something else." I got an appointment that day instead of weeks ahead,and when I saw the doctor he said "You are are a bit of a scaredy cat aren't you". All my friends jaws droppped. Luckily after a few weeks the Sinemet plus (with later addition of Azilect and a year ago and several steroid injections at the time into the hip knocked all this on the head for three years until about 18 months ago.
When I mentioned the vague aching coming back 18 months ago the neuro said this usually meant you were short of dopamine and actually talked about stiffness which I did not have in the GP letter Hearing what they want to hear is another can of worms! Six months later when I conceded that I was perhaps slightly under-medicated he couldn't tell by looking at me because he didn't see me often enough to note a change!! I've resisted raising my meds as much as possible.or adding to the variety because and I know too much meds can have the same effect as too little. I've added Half-Sinemet CR at night but can't make up my mind whether it makes any difference or whether I would be better of adding to the Sinemet plus I take during the day.. Half an ordinary Sinemet plus at 4 am seemed to work better. Also I think the Half-Sinemet does not last the night . However, I'm sleeping better anyway so I don't wake up at 4 like I did.when I took the half tablet of Sinemet plus.
However, I did go from 3 sinemet plus to 4 and a half a day after the same pattern started up again at the same time of the year - Autumn - of hip stiffness followed by soreness/bursitis with no increase in the amount of walking with the Ramblers This was because I was determined to go on a holiday which included short trek of 6 days which I had planned when I was fine - possibly to be my rambling swan song at 72 with PD I I didn''t really feel the increase it made much difference to the stiffness - that was solved by taking a course of steroid tablets I had squirrelled away and took just before going on holiday.. It did give me more stamina.. Following Nepal in Feb.last year I was sort of OK and rambling in the summer but less and less until one week-end when I could hardly move. I resumed exercises the NHS physio had given me and after reminding the PD nurse twice got a referral to a NHS physio. who said "keep up the good work" but did not address the continued soreness/pain in my hip at all. I've been privately to a chartered physio specialising in neuro conditions and she said you don''t need my specialised input - just ordinary physio but the local NHS service won't see me because I've got Parkinsons - I have to go to the rehab unit where I don't fit the profile of their usual clients as I am generally in much better shape than many my age with or without PD. Actually next week I am due to have the first planned review with a newly apppinted PD nurse (as opposed to a couple of requested ones) four years on from dx. so I'm trying to be positive at the moment.
After all that I'm getting round to the actual question (!!) of do I feel ill? Well yes and what a relief to find this subject being discussed more and more on the forums. . At
the moment more days than not I wake up feeling as if I've got flu', (thermometer does not bear me out) mostly in the lower half but sometimes all over which is exhausting and if I didn't keep so busy it would be intolerable. I have to sleep on my back because of the sore hips which are better now but could do with more attention. Five years ago before PD dx. a friend spontaneously informed me that I stopped breathing quite often at night but the GP dismissed this. Are the headaches and flu' symptoms the PD.itself or Is it the Azilect? The sleep apnoeia?./rapid shallow breathing at night? Did I catch something from the mysterious bloodsucking flies (not mossies) which attacked some of us whilst walking in Peru?. Have I got Vit.D which would explain and accelerated decline in my bones in the last two years or B12 deficiency - both deficiencies quite common in PWP's. WHO IS IN CHARGE OF ME? I'm a well-informed patient but I AM NOT A DOCTOR And all the time, as a recent visit to the NHS podiatrist conrirmed for me, PD is the elephant in the room. . Perhaps the elephant should be the symbol of Parkinsons.? Or perhaps the camel, the animal reputed to have been put together by a committee could represent the "designer " disease? (sorry) condition). According to the apparently personal opinion of the particular medic you speak to, PD either can or cannot be the cause of your symptoms/will or will not be considered as part of the picture..
It seems Its only now that they are undertaking longitudinal studies to establish the facts about progress of the disease. Is it the voice of the baby-boomers that has woken the establishment up. and/or the internet allowing us PWP's to speak to each other?
I suppose I shouldn't really say so but its a relief to know that others have the same aches and pains. From the above you can imagine what my imagination has been dreaming up in the wee smalll hours, as it did in the days before I was dx.
although i have psp i too have the pain decribed by the people here in my legs in the morning - very stiff and painful which does ease a lot after taking some modopar and then doing some bed ecersises then i can get up with the help of my husband and walk a little
oh and i can onky manage a 2 hiur slot on the comp - as my back gives out if i do any longer
not to mention the typing !!!
I'm 72 and was diagnosed at 64, symptoms appeared at 62. Pain is in knees, tendonitis on inner left thigh and lower left ab. Sometimes both knees hurt. Sometimes I can't leave the house, but I try every day.
Ask for a medication review. GPs are not he best people to do this, they really are general practitioners. Get thee to a specialist. PD nurse or consultant and keep a diary of your fluctuating symptoms. They could just provide the clues the clinicians need.
Take your morning meds to bed with you and make sure you put an alarm or pill timer on so that you get the pills before you have to get up and face the day. I know that when you are tired the last thing you want is to wake up and take tablets, but try it if you are not already doing so.
Some things that you might consider is the timing of your medication. You don't mention what you are taking but if it's Sinemet a couple of thoughts. Are you taking your last dose around mealtime ? Sinemet absorption can be blocked by a meal containing proteins like meat or chicken you may want to look into scheduling your last dose before bedtime. The other consideration if you are fine during the day it may be you need something like Azilet before bedtime with your last dose to help during the night to sustain it.
Talk to your neurologist about MAOb inhibitors along with Azilet ( azilet can take up to 6 months before a noticable results) there is another called Comp. It could also be you need to adjust the number of doses not neccessarly the dosage itself. I use to take Sinemet 6X every 3 hours a day. With Azilect, a little streching before bed and taking my last dose around 8:30P I not only am down to 4 Sinemet a day but I sleep through the night with none of the side effects like the vivd deams ect.
Like my neurologist say's everyone is different and they can only give us the tools we need to manage PD. It takes two way communication and feedback from doctor and patient to come up with a stragedy and the right tool to controll it !! For me personally it took some experimenting with the timing of my doses to find what would work. For you it may be some form of teaking to the stragedy . Things like vitamen D help with adsorption of things in the gut are you taking CA and magnesium for bones
Hope you find a solution that works for you. This is why this page is so good lots of good feedback of things to think about and options discuss with your neuro.
I find the timing of food and Sinemet very important, sometimes it's a decision between 'shall I eat and have difficulty moving for the next hour, or shall I be hungry but able to move' Usuallyit's the last one. When I was diagnosed 11 years ago, at 61, the only symptoms I was aware of were a painful shoulder and difficulty with writing. Pain killers and the computer helped with those and I resisted medication for a couple of years. I was still working, as an occupational therapist, (how ironic) Some of the patients had Pd and I didn't want anyone there to know. Someone told me about Aloe Vera juice, which I take every morning. I can't say for certain that it is beneficial, but I do feel worse if I stop, and my general health is good, no colds, flu or other bugs for a long time, in spite of being in conact with a lot of people. I retired at 63, and have gradually increased and added drugs, now on 4 Sinemet plus, 2 Amantadine, 1 Mirapexin, with Half Sinemet CR at night. I also have a small dose of Amitriptyline at night, which was the first drug my GP prescribed for pain very early on. I now have to take blood pressure tablets, I'm now on the 3rd as the first 2 gave me nauseous side effects. The one I take now lists as a possible but unconfirmed side effect, muscle or joint pain.
When I started it on one tablet, I noticed the muscles at the back of my thighs became painful, which improved in 2 weeks, but when I increased to 2 the pain came back in the muscles, and also my knees. My blood pressure is still high!! I'm sure the doctor will put the pain down to Pd
and want me to increase the dose.
But going back to the original question, I do wake with a lot of pain, also since the BP tablets a full bladder, so i have get up and go, with a lot of difficulty, but when I go back to bed, I begin to feel wide awake and move quite well, due to the CR sinemet I think. So then I'm tidying drawers or typing letters and emails at 3.00am! Ideally I wake at 7.30, stretch and move gently in bed to loosen up, then I can sit up and take my first tablets, with a full glass of water.at 8.00. I stay in bed, but sitting up to make sure the tablets go right down. After about half an hour to an hour, I can get up, and be 'normal' for about an hour. There's always pain and I know a lot of it is not Pd.
Doctors and reference books always used to say that Parkinson's doesn't cause pain. In recent years they have acknowledged that it does, and also recognised many other 'non-motor' symptoms, like sleep problems, mood variation, digestive problems. The people who devise treatment and those who prescribe them don't actually have the condition, and I realise from my work that no-one can imagine how it feels, you only know when you have it. . At last they are beginning to take note of what the 'service users' say (in UK) and there are going to be more opportunities to 'have our say' The new Clinical Commissioning Groups (CCGs) should be involving the people who uset the services in their meetings. Parkinson's is certainly a trial, we are stuck with it and just can't shake it off 
I feel so alone with this disease. I use a walker at home, but cannot walk far so need a wheelchair when out. I have a "transport" chair to go out with that weighs less than 20 pounds, which makes it a little easier than moving a heavier wheelchair into and out of the car. I don't drive, so can go nowhere without help. My familiy (4 adult children with spouses and adult grandchildren) say they understand but just about NEVER can find the time to take me to the store or to a movie or out to dinner, etc., and I feel like a prisoner in my lovely home which I used to love but have learned to hate.) I feel depressed all the time, and don't know why God lets us continue to live this way. Do any of you have these feelings of rejection by a family which says they love you but avoid you like the plague? It's really sad because when I was more independent they wanted me to stop driving (which I did) and working (which I did), and now they make me feel unwanted even though they keep saying they love me.
• in reply torory3028
I guess I am lucky because I still drive, however, I am mainly a parent taxi, taking them to their appointments. in a year i will have a review. my fear is that once my car is gone I will rarely see anyone from my family. It certainly sorts out who really cares. Can you get to a group? They will fetch you.
There are some very uplifting sites. Try Edge of the Forest.
rory3028• in reply to
I'm not sure I undersand what you mean by "can you get to a group? They will fetch you." Do you mean a Parkinson's support group? I could try to find one i my area if that is what you are referring to, but I don't know of anyone who would pick me up to take me to a meeting. I would love to get out of the house but don't think just getting a ride would help because I would still have no one to push my wheelchair, etc. This is the problem. I cannot do a whole lot for myself and I could never allow myself to ask strangers for help. Ir's not the way I was raised. Was always told to take care of myself and not to depend on others to take care of me. Until the last two or three years I was doing pretry well, but I have had PD for many years and it has pretty much taken over my life. I know I am feeling sorry for myself but I feel that I have no life. I was diagnosed in January of 1994 but was told by 3 differenf neurologists that my history ihdicates it actually started in 1988 when I was only 48 years old. I am now 73, and trying desperately to hang on, but more and more I am wondeirng what I am trying to hang onto. I would never consider suicide so I know I just have to play the hand I;ve dealt, but it's tough trying to smile when you want to scream in anger and pain. Thanks for listening to my whining. It really helps to blow off steam.
• in reply torory3028
Its ok we all feel like this sometimes. I was diagnosed at 48 and am now 56 and live alone. Fiercely independent i just can't think about the future.
I am in the Uk and although I wouldn't join a support group at first, I have come to realise how important they are, even if only to talk to on the internet or phone. Citizens Advice Bureau, Age concern, and other agencies have volunteers that will take you out and push your chair.I used to do this before I was diagnosed. Im also a member of a local art club. Many are disabled and a couple in wheel chairs. I like this club because it has nothing to do with PD but my friends there would do anything for me.
The only other advice is to go from one milestone to the next. In Sept I will be a Granny for the first time, and I will be getting on a plane alone so I can be there. Be strong. x
rory3028• in reply to
Thanks for your interest. I'll try to give some thought to a support group. You will love being a Granny. I have five grandchilren and they are the light of my life. They range in age from 2-1/2 years to 29 years. Quite an age difference, wouldn't you say? There are two girls and three boys. The oldest, a girl, is to be married in September and I am beside myself. Can't wait. Going dress shopping with my daughter, soon I hope, because this could be a long, difficult process.. I have clorhing issues, though. My body is totally bent in half at the waist, so it will be hard to find something that will look decent on me. I always feel so sloppy-looking. Then, there is the problem of shoes. My feet swell, so I never know from one day to the next if my shoes will fit ne, I have nightmares about wearing a beautiful dress and bare feet. Guess I could have a lot worse problems than those to worry abour At least it will get me out of the house. I am in the USA, East coast, so I will have access to many stores. Do you know, typing this is already making me feel better.
You are so brave, getting on a plane alone. I have a very close cousin who winters in Florida and who regularly invites me to come down and she & her husband will meet me at the airport, bur I am afraid to get on that plane.alone. I never used to be such a chicken. Wish I could get my feistiness back.
Well, thank you again. I wish you all the best with your new grandchild. You're so very lucky. This is such a wonderful time. Enjoy it
My pain seems to come and go, depending on the week or day. I just never know when it will hit and seems like it wants to stick around longer. First thing in the morning is time for sore bottoms of feet and difficulty walking barefoot. Decided to stop doing that. My whole body is stiff and slow moving until the Mirapex, Sinemet, and Amantadine start to work. I take lots of tylenol and aleve during the day to get through the day. I just keep moving because I stiffen up when I sit for long periods of time. At night it is an aching shoulder and hips. After a few trazodone, I sleep for about 3-4 hours and its sporadic after that. But at least, after almost 6 years, I can still do things like yardwork and housework. I just do it very slowly and little bits at a time. Lots of breaks! Going to take the advice about water, I don't have much water due to bladder muscle issues(I pp a little in my pants and don't always make it to the toilet). But I know I need more so I'm going right now to get a bottle to sip on. Take care everyone
Pain is pretty much a fact of life but until recently I always blamed family history--3 siblings diagnosed with arthritis--2 with rheumatoid and 1 brother had psoratic. Late 80's I suffered from sciatica and a ruptured disc. 2006 it was shoulder pain that sent me to an ortho for a consult, who in turn sent me to a neurologist where I was diagnosed with PD. My maternal grandfather and 1 of his sons had PD and though my mother was never officially diagnosed she had a severe tremor, history of falling-a lot and in her last years was diagnosed with Lewy-bodies dementia. I was able to work as a nurse for 5 yrs after diagnosis, fulltime, but it was fatigue and increasing pain in legs that led me to retire 2 yrs ago. Mornings are my best---sleeping better since getting a new memory foam mattress, On arising bothered with shoulder, elbow and leg stiffessand arthritis foot pain. take 2 sinemet 25-100 every 4 hrs while awake at least 3X and recently my neuro added a 4th dose, bedtime I take sinemet CR 50/200--1 tablet and Requip 8 mg. Depending on day activity the pain in legs, feet and back can be almost unbearable at times. Through trial & error I found that if I take any pain-reliever containing tylenol--I will wake the household with my screams from dreams I can't remember. Get better results with an aspirin based product called 'Back & Body' 2 tablets and if pain really severe can take 1 tramadol with fewer screaming episodes. Honestly exercise makes everything worse--increases fatigue & pain and almost doesn't seem worth it. Suffer from foot cramps in left foot that occur mainly at night----a few weeks ago had an episode of just toes cramping & curling lasting much longer than usual-----and pain is just awful and prevents walking until it passes. i waste more time in shoe departments looking for that 'non-existent' COMFORTABLE shoe that I can wear longer than an hour. I am in a relationship where my sigificant other towers over me by a foot has, size 13 feet, balance issues, takes insulin for diabetes resultig in loss of vision in left eye last year and recently lost vision in right eye----my role changed to fulltime housekeeper, cook, laundress and now fulltime chauffer-------stress does not have a good affect on PD---in process of re-thinking this relationship and where I need to go from here..
Sounds like you're suffering from TMB. Better known as Too Many Birthdays.
What I think is that us PD's are amazingly brave - but in this day & age you would think we could have found a cure . I have such excruciating pain day in day out, & I cann't cope - but if I had to go out to work ( I am retired) I don't know what I would do. I'm glad your husband helps as much as he can, my husband is marvelous too. But it is hard on him seeing me in pain most of the time.
You would thik at least there would at least be a decent pain relief that works.
There are some very interesting posts on here, I love the way we all share our ups & downs.
I've just rung our 111 line, I feel simply that I can't spend another night with the pain I am in. They said that they will get someone out to see me in 6 hrs time. But they have told me if I become dizzy to ring 999.
Last week I was admitted to hospital for 2 days & 3 nights, and initially was on a morphine plus drip for painrelief, which hardly worked on the ppain. But during the 2 days there I felt marvelous, had energy and a feeling of love for everyone, fantastic. But at home the pain is back with a vengence.
The reason I'm still online - is that the thought of going to bed, feeling like I do, doesn't seem like a good idea.
I was interested in one of the posts regarding bad effects of morphine on PD's, but I'm not sufficiently with it, to go back & look at it now.
Love & best wishes to you all.
I am 63 years old and I feel the same way. I think it is the Parkinson's. I have pain in my neck, lower back and legs. Sinemet helps a bit. I feel like I am getting the flu when the meds wear off.
Hi I'm 55 and have been diagnosed with pd for about 15 yrs and yes like your self I think Tyson or some other big bugger has been going at me all night, I struggle to get 4 to 5 hours sleep a night and I don't no when I last had a proper sleep. But you have to just keep on working through it other wise the pd is the winner and I'm not ready to let that happen .
Yes, I feel the same. You mention your GPS is that General Practioner? Do you have a neurologist?
I keep asking if my husband got the licence plate of the bus that just hit me. That is how I feel every morning till I exercise again and stretch all out.
Hi so sorry u feel like this .
Yes I went through feeling this way , recently I was puton stalevo although the pain. Is stil there before my meds r due and after the medication I was shaking .
It must get better keep busy and goodluck
Hi so sorry u feel like this .
Yes I went through feeling this way , recently I was puton stalevo although the pain. Is stil there before my meds r due and after the medication I was shaking .
It must get better keep busy and goodluck
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