for the benefit of my husband - COULD EVE... - Cure Parkinson's
for the benefit of my husband - COULD EVERYONE WHO SUFFERS PAIN RELATED TO PD JUST ANSWER THIS PLEASE ? -
Yes, I get pain which I think is Parkinsons related. I get cramps and pain in my right leg, pain in both hips and back pain. I also get pain and cramps in my right hand. Isn't life wonderful!
My husband does not understand why I get pain, he thinks Parkinsons only relates to a tremor, or at least that is what he says. Actually, he is very good when I ask him, but the rest of the time he leaves me to my own devices. This is the way I like things.
my hubby is just so great but i find it hard to explain to him just how awful it is -- but i guess they kind of want us not to feel anty worse than we already do?
I am sure you are right. Neither my husband or my children, especially my son, really want to discuss my Parkinsons. Rather like an ostrich burying its head in the sand. Having said that, they are always there if I need them.
Sue 
Yes I have pain in my hips and back and right leg. Especially first thing in morning. Hard to find a good position in bed. My husband will also not talk about it. Wants to ignore symptoms but again is there if I need him.
Tremor is just the tip of the iceberg. I have pain everyday, most of the time its all day.
I have extreme pain. The muscle tightness, cramps, neck paiin - it's a whole
package of pain. Before I was diagnosed the pain was so severe, I was taking vicodin.Many people don't understand all that goes on in our bodies. I think your husband and my husband might be brothers!! Good luck
My husband is great. He will rub my legs anytime I want him to or whenever he thinks I need the rubbed.
My husband does the same - we learned several stretching exercises for the neck & shoulders, arms & legs during a physical therapy stint - the stretching of those stiff & aching muscles is heaven ... not a cure but definitely a release from the stiff and aching legs, arms, neck & shoulders ...
how lovely my hubby does not offer to rub anything but will do a bit of a job if i ask him too ...
Cramp in my feet, pain, stiffening and tightening in my arm, shoulder.and leg, like elastic bands pulling tight. not nice
Try standing holding on to something secure and going up on your toes. Boy, it really hurts at first but has seemed to help me. Then reverse the procedure to going back on your heels. My physiotherapist recommended this for leg pain and cramps.Hope it helps you.
Thank you, I have found this helpful.
As a retired male PT with PD I can attest to the pain reality that we experience.
I have extreme pain throughout my whole body. I try not to complain too much, but some days it just wears me down. I think my husband tries to understand, but it's hard for him to relate. I told him that it feels like every muscle in my body is screaming.
PLEASE TELL YOUR HUSBAND TO TAKE 3 HRS AND TRY THIS.PUT YOUR FOOT SOLID ON THE FLOOR.RAISE THE HEEL AND BOUNCE UP AND DOWN FOR 3 HRS STRAIGHT AND SEE IF HE CAN WALK STRAIGHT.PAIN AND STIFFNESS IN THE LEGS AND ARMS JUST COME WITH US......MY WIFE AND DAUGHTER TRIED THIS AND THEY NOW HAVE AN APPREIATION OF THE PAIN I HAVE
Sharon, My pain is so visible strangers come & ask if they can help in any way. I can't keep still (which makes others feel uncomfortable), I go white, I get dizzy etc etc. I think the advice about creating or generating pain in the person one is trying to influence is probably a good idea. The main problem with my PD pain is that the worst is ideopathic ie it is all-over & hard to describe because the cause isn't known. I get this + muscle pain (cramp & lactic burn), joints (arthritic, frozen shoulder, tennis elbow, housemaid's knee etc), Sometimes they all come together but they can come individually or in any combination. The problem for our friends & carers is that they feel helpess - they love us & they want to help......... but they can't. This causes them pain. It's a vicious circle from which I see no way out. Sorry, Angela
Hi Angela, Yes, pain seems to be a bigger part of Parkinson's than most people realise. I also have continual pain which isn't helped by having lumbar disc problems. As my husband puts it - not fair to be hit by a double "whammy". What is so good to read in these replies is how many of us are blessed with loving partners who may not understand how bad the pain can be, but who care.
People sometimes ask me what PD feels like. I ask them if they ever had a Charlie Horse. When they say yes, I say imagine having a Charlie Horse in your hamstrings, and at the same time having another Charlie Horse in your thigh. Before Azilect was FDA approved, I told that to my brother, and he started paying the $800/month to obtain Azilect.
thanks to all my 'parkie pals ' as my husband calls you for being so up front and honest and like esrob says its so good to know that we have such loving and caring partners
xx
If I sit, stand or stay in any position for more than a couple of minutes - e.g. preparing food, sitting at the computer I get a pain like a knife between my shoulder blades which then lock solid. If I use any muscle group more than a few times repeatedly - even something as simple as.spraying kichen cleaner - the muscles seize up. Excercise makes it worse not better. One tip is warmth - I can swim a length (just) and then stagger into the jacuzzi which soothes the pain enough to do another length. I'm always the youngest person at the pool and get odd looks from the octogenarians belting up and down for hours on end but who cares . . .
Yes, severe pain in ab and left thigh. Pain in knees. At night it turns into red ants running around inside legs until I fall asleep.
Any injury, unless addressed, becomes dystonic and refuses to stop hurting.
shasha, he's lucky to have you. Take care of yourself, too.
poor pat it just sounds too awful for words - you are very brave
you must take care of yourself too
xxxx
my old man is suitably chastened by reading all the comments and says he is sorry for not understanding more of what it is like ti have PD
but how can anyone know what it is really like who does not have the wretched disease
and i am so lucky - having read some of yuor accounts- you all suuffer so much more than i do -
God bless you all and love to you xxxx
Yes, I have neck, shoulder, & hip pain. Also have toe, foot and leg cramps.
God bless us all and give us the strength to carry on. We get the support we need from this wonderful website and the people who visit and post.
Thanks everyone.
For leg and feet pain and cramps...I sit with legs up on foot stool and flex my feet forward and back pointing my toes as far as I can each time...for as many times as I am able to...it is something that I learned in rehab when I took a bad fall several years ago....ice paks on my ankles also help when my feet cramp.....Casey in NH
Court...everyday something different hurts....from the bottom of my feet to my hair....no joking!!!! My husband goes with me to all my dr appointments and I discuss all these things with my doctor. Pain, depression, panic, sleepless nights....every day there is something new. I will be praying for you and that your husband can wrap his arms around everything that goes with PD.
No pain yet (three months on Mirapex) and I'm not looking forward to it -- I don;t do pain very well.
Yes, I suffer severe pain and have for many years, but no tremors or drooling! I count myself lucky just to have obstructed walking and speech and pain. It could be so much worse. The pain on my left side is unrelenting and sometimes I am really a grouch!
My husband was diagnosed this year with PD. He was in a bad car accident in 1987 and broke his back. The back/neck area is where he gets the worst pain/cramping. He tries to do normal household chores and has to stop ALOT because of the pain/cramping. Pain so severe he has to lay flat for several minutes to relax the muscles.The future is a scary with PD. He is only 53.
Pain? Yes. Legs, feet. And the side-effects of Rx. Yes, pain came along with PD, although many books and MDs say that pain is not necessarily a part of PD, they are not the ones who have trouble dressing for the terrible cramping when they bend, the dystonia when they bend their legs just the wrong way, etc. Yes. Pain. It's here. And there.
Shasha, your husband needs to talk to my husband. My mule will NOT take pain pill as he feels his PD drugs do not work the same. I am enrolled in a 500 hr massage class and after just 80 hrs have learned enough techniques to relax his feet at night so the cramps let up.
Shoes are his biggest problem. He wears a 13 (now E) and they are hard to find. But the right shoe makes his spinal stenosis better.
His DBS has controlled the shaking, but 3 falls down the stairs gave a whole new set of pains with two shoulder separations and a knee hyperextension. Massage has helped all these thinks.
Court, did we all answer your question? All kidding aside, if I maintain any position for more than a few minutes,.. pain. Since I have a # of other Dxes which include pain, I have tried to identify which causes what ( murky sentence but cannot be clearer.) I take a carload of narcotics in order to look "normal" and I have a medical cannabis card. The question often comes down to do I want to function today or is this a day to try to make myself as comfortable as possible kick back and wait it out. By the way my pain management MD has my narc. compounded with ginger to protect my organs from too much tylenol as in Vicodin. Here a demo: I need to get up right! now! too long in one posture.
Sasha,
Magic max.gave an excellent example of PD pain. I would say it is an awful charlie horse that turns my toes in so hard I can't move them. IT works its way up my leg and creates a ball in my calf and then stiffens my thigh muscles all at the same time. I can only drop to the floor and take my meds and wait for it to go away. My husband trys to rub it out but even though he usesall of hisd strength it isn't enough. I often wonder what the people with PD did long ago before we had medicaton.This pain is so severe that i would have asked someone to shoot me if there was no way of ending it. Standing and going up and down on your tip toes helps. Also try leaning at a counter with the front leg bent while the other stretches straight back with bent toes and lung forwawrd. Another good one is a push-up position and let the toes stretch as you hold yourself up. Stand on a step with your heels off the step just using the balls of your feet to stand there. Keep moving!
I have painful knees , elbows,wristes and neck 24/7 sometimes while alseep at night the pain wakes me, It takes a while to get moving in the morning My general practioner thought I may have fibromialga. My neurologist tried cymbalta,it didn't work Neurologist now saays its just the nature of the beast.
Yes! imagine wearing a 8-10 inch wide belt around your waist with arrow sticking in you at varying degrees of intensity, early on it would feel so strong like my appendix were bursting, and actually went to emergency a couple times. No one has ever been able to tell me exactly what it could be except for just nerves gone haywire. One "renowned" neurologist told me it had nothing to do with Parkinsons or medication side effects, but I never had it before being diagnosed with PD or before taking Azilect, Sinemet, Requip or Mirapex. Does anyone else have these type of pain?
My neurologist does not think the pain is from PD. The rheumatologist does not think it is fibromyalgia or arthritis even though my rheumatoid factor and sed rate is high. But I know the pain and discomfort you are all feeling. This disease continues to provide new symptoms around every corner.
no thankfully i dont, but i do have pain - mostly in my neck , back and stomach - thanks for resonding to this question
I went to the emergency room twice for severe lower abdominal pain. Doctors could find nothing wrong including primary care, gastroenterologist & gynecologist. Now It appears to be just one of a few focal points for pain going down my left side. I had it checked out because it felt like a deeper pain.
And some people say there's no pain with PD! My pain is on my left side from my jaw to just a couple inches into my thighs. The pain in the back is not so bad; but in the front it's quite painful.The focal points are in my jaw, neck, lower stomach & groin. The other areas don't hurt as much. When at its worst, the pain is sharp stabbing & burning as well. There is also burning inside my mouth near the jaw. My pain is resistant to all medications I've tried - with the exception of oxycodone when I was taking it for something else. Doctors don't want to prescribe it anymore. I recently got a prescription for tramodol to use when I'm at my very worst. Glad haven't had to use it yet, though I almost took one on two very painful occasions.
Sorry I'm so long in responding. Just started using this forum recently.
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