During the first appointment I had with a Neurologist, I remember the nurse saying, “At least there isn’t any pain with Parkinson’s.” I need to find the pain book of rules. I have picked up on the fact that being stoic and hiding pain is good. Talking about it is not so good. And, I have to admit, I don’t always listen to others when they mention pain. So, I won’t mention it. I wonder if wearing a little sign when my muscles are rigid and curling saying “One hour of rough road and switchback curves ahead - please pass on the left.” would be acceptable. Maybe the rule is “don’t complain, don’t explain.”
Depends on who I'm talking to. I love to complain to my PD friends and support groups. We all end up feeling much less alone and also it's a great way to get good information on what helps other people. People without PD or a significant health problem I don't tend to regale with my tedious list of what's bothering me now. It's an ever moving target.
How refreshing! The idea of loving to complain makes it sound acceptable, like the emotional equivalent of tensing a muscle to relax it. I can see focusing on creative ways to complain as a great distraction. My grandmother used to say her “dogs were barking” when her feet hurt. We knew not to rush her when she said this. I have not thought of this in years. Thank you so much.
Yes, it is important to be able to talk about what ails us, be it pain or anything else. You can do that here, and that is what friends are for if they are real friends.
Seeing each reply, suggestion, experience gives me hope. Each response sparks a coping idea. I’m creating a little “Coping” map to remind me of these paths. Thanks for the flashlight.
After reading your reply, I realized how important it is to think of ‘friends’. Acupuncture sounds interesting. Just imagining acupuncture is helping. I imagine a piece of bubble wrap around my leg and one by one, the bubbles are popped and the wrapping falls off and I go for a walk. Thank you for the lift.
That is a good point. If they have their own pain they don’t need yours and if they don’t have pain, why ruin it for them. Do people ever ask you if you are in a bad mood when you are feeling pain? I am trying to think of a light hearted response, but the idea of extreme complaining amuses me. Thank you for your observation. It is so true.
My problem is latent anxiety. Kind of an insipient slow simmer, which sometimes makes it difficult to fall asleep.
Days of rigorous exercise -- fast walking, rowing and resistance training -- seem to be the best preventative, along with bedtime Tylenol, Melatonin and mild anxiety pill.
It happens sometimes when I first lie down, and when it does I might as well just get up for another couple of hours. Once I go to sleep, I usually stay asleep for 8 hrs or so, with a pee break along the way.
The anxiety that I experience is subtle in my chest. I begin to sense unease about my contact with the mattress; a bit of tactile defensiveness as well with the single sheet that I cover myself with. I find myself fidgeting for the most comfortable position.
Whenever I put my teeth together they chatter; the tremor deep within...7/24 ... so I know that deep down inside a PD "shade" (after Dante) resides. Some thing that prevents me from having total control of myself. Fortunately, the morphology of my mouth sets my jaws apart. So I have to clench them to check if the beast is still within! It's kinda like tinnitus. I don't notice it until I have this mild, deep, unpredictable sensation when attempting to fall asleep. That's when I do the clench test.
To respond to the other part of your reply, I definitely drink too much caffeine. Will try cutting back to see if that quiets the beast when I try to fall asleep.
But as a reported earlier, I usually avoid this sensation when attempting to fall asleep on days I which I have had a full exercise and a mild bedside anxiety pill (non-opiod) along with a couple of Advil. Also helps a lot if I wait to retire when I feel really sleepy.
My initial reply looks like high speed meandering. I should have just thanked you for mentioning tinnitus. When I Read your post, it described much of my own experience and something in it rang a bell. I was trying to identify it and realized it was the tinnitus. Have you heard of central pain and abdominal tremors? They have been tormenting me. The past few nights I have been waking up and the first thing I notice is my ears are ringing so loudly that it scares me. Then I notice my leg is so rigid, I can’t move. My stomach is clenched. I am up the rest of the night. Last night I woke up and realized it was the tinnitus that I had not been paying attention to. I have had low blood pressure my whole life and it has dropped even lower. I checked it last night as soon as I could move and it was in the 150’s when lately, it is rarely over 80. I think when my meds are wearing off, my blood pressure shoots up and starts a spiral. Tonight I am going to set an alarm so I don’t sleep through the time where I always took a dose of CL. For what it is worth, when I hurt my abs rowing, an athletic trainer suggested taking Advil. I thought that would make it worse, but within 40 minutes, I felt relief. You mentioned taking Advil.
My own nighttime unease feels like my rowing injuries felt. I read a study where people complaining of abdominal pain had mris and GI tract and a bunch of other tests done where they found nothing. I went to my PCP and asked if there was anything she could do to rule out some causes and help me control my panic. Blood work results were the best I have ever had. No infection. Abdominal ultrasound results were good. I started using relaxation techniques and stretches to relax my abs. This was working great until I started sleeping through my 1 am dose. Thank you for the meander. I was going to remove my earlier reply, but think it explains some of my logic.
I find that very difficult to think that a nurse would say there is no pain with Parkinson's! The muscle pain that I have felt from the rigidity/stiffness of PD, has been some of the worst pain I've ever had. I have had broken bones, severe arthritis, pancreatitis, migraines, and dislocations.
My husband has PD and deals with back pain. We have found a great PD support group that we go to . The caregivers & their PD partner separate into 2 groups where the PD client can feel comfortable talking about pain , depression, etc. Thèy don't have to worry about being criticized for anything they may be struggling with. The caregivers are also able to discuss their concerns & share ideas òf how to care for themselves as well as their partner. It has been such a positive experience for both of us. Hope you can find one near you.
Are there any women with PD in your group? Please tell me if this is too strange. I am really struggling to find good dosing and it is messing with my emotions. I took care of my mom for six years. She did not have PD but she had severe dementia. My parents did not live together but remained friends. The day of her memorial service, I was cutting my dad’s hair and he asked me how my mom was doing. We had spent the whole weekend together planning my moms service. I had been so involved in taking care of my mom I didn’t notice his confusion until then. It stunned me. For the next four years, I took care of him. I have received notices of meetings, but I still think of myself as one providing care, not needing it. It has just been the last few weeks that I have realized I need and may be needing help. I feel like the kid on the playground hoping that one team will pick me. I just can’t see how I could be in either group. Is there anyone in your group like that? I guess the group I would sit with would be the one with the PD? It freezes me thinking about it. Does this make any sense at all?
Ìt really does make sense & I understand totally. I also have health problems from multiple abdominal surgeries & so adhesions causing health issues. My husband has had to deal with my many hospitalizations as well as his PD . Being a retired nurse I do alot of looking for the best treatments for his PD. I have him on extra vitamins etc .that I know wòrk for the nervous system and seem to be keeping him from needing much of the Levadopa medications. I know doctors don't want a person to experiment but I question the medical system when it comes to PD. I feel like you in that being a caregiver as well as dealing with your own health issues is very difficult & so often the caregiver ends up being in worse shape. It is especially difficult caring for loved ones with dementia of any kind or Alzheimers and I give you so much credit. Joining a support group for PD I feel would help you know you are not alone and you can talk about your struggles with your meds. It would also give you a chance to talk to any caregivers as you get to know the ones in the group. I encourage you to look for a group real soon before your health & the stress of being caregiver causes you more problems. PD is so different for everyone but the stress of daily life can also make it worse so please find a support group
Since being diagnosed with PD I have had severe low back pain. I have met and read about many people who have developed back pain with PD. I think there must be a link somewhere.
Everyone is different, Pain seems to move around with PD. If you think it is pain from the muscle, Using a dvd of stretching exercises, taking cool baths or cool compresses, or using other relaxation techniques works for me. Getting dehydrated aggravates it. When it was really bad, rocking in a rocking chair helped. Trying to follow an anti-inflammatory diet helps. Some people have recommended heat or alternating heat and cold. Some people don’t tolerate heat. Good luck. Hope you find something that helps you.
I always wonder if everyone nearing 60 really “feels” this way: stiff rigid - is it pain or discomfort? Even my Healthy friends bemoan “it sucks getting old”- as if they , too, have the same aches and pains...
so, whose to say we ache anymore than the next guy? Or do we ache more?
Hello. Was just talking to a 70+ person who had a healthy perspective. She is quite limber. She attributes it to stretching eveyday and keeping her spine in alignment by leaning her back and head against a wall for a few minutes each morning. She said squats and pelvic tilts that she has been doing for the past five years have all but eliminated her stiffness. If she sleeps funny and wakes up with a strained muscle, she very slowly stretches and, so far, this has worked beautifully for her. I am a fan of stretching and yoga and found that it even helps with the abdominal rigidity that so many experience when meds wear off. I’m going to try to program myself to think, “It’s luck, getting old!” Good luck to you.
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