Does this sound familiar?

First thing in the morning and sometimes when it is almost time to take my next pill I have a shaky feeling even though there are no visible tremors. The feeling of being panicked yet there is no fear. The feeling of shivering from the cold yet being very warm and in fact sweating. My muscles are achy and tight. It feels like there is a giant rubber band around my torso squeezing me. About an hour after I take my pill my muscles start to relax and I get comfortable.

This is how I felt all the time for a long time before I was diagnosed. My doctor was very sure it was because of my depression. It wasn't until I actually started hand and jaw tremors that my doctor would consider anything other than depression. All the while my balance is getting worse, my fatigue is greatly limiting what I can do, and I have signs of dementia.

Many people think that Parkinson's is just a shaking disease. They just don't understand that it is a debilitating disease.

29 Replies

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  • the unseen tremor is called internal tremor.

  • Good to know. Thanks

  • The unseen tremor is what my husband has. I notice when his meds are wearing off and it is getting time for next dose. He has this occur worse during that time. He usually begins pacing and feels the need to walk until next dose takes effect. We have recently adjusted his meds in hopes of keeping from that terrible inner tremor. I have been calling it anxiety for some time. When my husband first starting exhibiting symptoms this was the major tormenting symptom , a terrible inner tremor, restlessness that he dealt with by pacing the floors, he could not even sit initially.

  • It is a horrible feeling and yes it feels very much like anxiety but there is nothing that you are anxious about. Often a person will look for something to worry about just to justify the feeling. I believe that in that article by Robin Willams' wife, when Robin Williams talked about his terrible anxiety it was really the inner tremors that Robin Williams was having.

  • The word which, I believe, will catch the attention of most pwps is "pill". If the effects of the last pill fail before the next one is due, you may need to adjust your prescription. Parkinson's is not much fun, and constant fatigue is part of it, but many of the symptoms, with proper medication, exercise and a positive attitude can be controlled or lessened. This forum is an excellent source of information and it helps to know that you have others in similar situations who are "in your corner". Wishing you well/Stay hydrated.

  • I have that too. Someone called it inner tremulousness which is a great description. It makes me anxious which then makes it worse!

    I have started taking my azilect the second I wake up in the morning while still in bed. I think it would be even better to take it at 3am but I'm not sure if it is worth disturbing my sleep.

    Alternatively you could take it in 2 doses if you can cut it in half.

    Signs of dementia are terrifying but it may just be mental confusion which is common from what I am reading. I hope so.

    I hope you get back your normal optimism soon.

  • There are many aspects of anxiety and depression that can mirror dementia, and not be dementia at all

  • That broad brush depression diagnosis drives me crazy. I know I've said this before but we women get that much more than the men. I've had many times in my life where I really had a serious medical problem and the doctor would only tell me I was depressed. Yes, well, medical problems will do that to you.

    I am sitting here right now waiting for my pill to kick in and since I ate that could take a while and have several of the symptoms you mentioned. Sometimes I will find myself just feeling like life sucks and then I will realize I just need sinemet. This is one crazy disease. It throws a plethora of symptoms at all of us. I always tell people, I'm not bored.

  • Exactly Enidah. This disease has a plethora of symptoms and if you try to tell a doctor all of them they just get frustrated with you. They want to focus on one problem -- one issue. My main complaint before I was diagnosed was fatigue and body pain, when I tried to tell of the other symptoms I would get comments like "But that is not why you are here", "Let's concentrate on one thing at a time". I always felt rushed by the doctors and still do but at least I finally have the right diagnosis. For a while I went to my GP every week and I was labeled as a hypochondriac and he even suggested I see a psychiatrist. It was so demeaning, not that seeing a psychiatrist is demeaning, but being shrugged off was demeaning.

  • They don't know how to listen and their minds get overloaded. "Let's concentrate on one thing at a time" is the way they need to work. You only want to try one new intervention at a time anyway, so if the doctors says that be content to name your worst symptom.

    If you don't know the doc you could start by asking if they want to hear everything or just the worst thing(s).

  • We have the same nonsense here in the UK, i.e. only discuss one thing at one appointment. What price holistic medicine or even gathering enough evidence to make an informed diagnosis.. Talk about not seeing the wood for the trees!!

  • I really feel for you. When you mention dementia have you had it before you started azilect. I did mention it before that when I was taking azilect I felt like my mind was going. I'm not advising to do anything you have to talk to your doctor first.

    I also have this feeling like I have something around my neck on my right side heat seems to help a little bit.

    Mary

  • Actually my dementia has improved a lot since I've been on the PD meds. Before that I was having real problems. Constantly starting things and forgetting what I was doing. Trouble searching for words. Terrible, terrible short term memory. When I first went to the Neuro I had trouble filling out the new patient paper work.

  • Hey Theresa No one knows what it's like having PD .

    They see you going about your daily routine.

    See you interact with other people and assume you are "normal".

    It's only when they see you shaking or look exhausted that they believe there's anything wrong with you.

    At my Church some people thought I was swinging the leg . As they say in Yorkshire. I found myself taking my consultant's letter with my diagnosis on it.

    But my good friends there said I didn't need to justify myself.

    Ah well that's human nature.

    Martin .

  • I can relate to that, Theresa. I have all sorts of strange sensations between meds and some of it I can't even describe but some of it seems close to what you a describing. If it happens when I'm at work during the day, it is especially difficult because no one can notice what I'm experiencing and they don't know that, although I try to act normally, I really just want to be left alone until it is over. Even to carry on a conversation is a real effort. What a relief it is to feel the meds start kick in. We also have to keep trying to adjust our meds to reduce the off periods and there is hope now that new meds may soon be available to see us through these transitions.

  • It's so good to know that what I'm going through is what others with PD go through. It helps to talk about it.

  • Hi Theresa, I hope your Dr. or pharmacist told you about eating protein within a half hour before and after taking your meds. Watch what you eat and when you eat and you might find certain foods need even longer periods of time before and after. Beef is a killer for me. It's hard to tell the difference between symptoms from PD or menopause. I know I feel like you described when a hot flash is coming on. Double Whammy!!

  • Hot flushes can also be related to PD. Men get them too. Our temperature control area is affected. Some people get drenching sweats

  • Yes sounds very familiar.!

    Theresa those are not NOT dementia symptoms they are well recognised cognitive problems of PD. Word find, short term memory and forgetting what you ere saying mid sentence - classic PD .

  • Word find, eh? I've had trouble with that from time to time. Did not realize it was PD.

  • scary, you've just convinced me you undoubtedly have pd and nothing else.....how long ago did these more significant symptoms kick in?

    I've been pushing myself like crazy had to hire for heavier liftin jobs around here. i'm slowed down last couple of days and after taking my multi vit/min pill I had that stiffness with curling toes, little pulsating muscles in affected side but i think they're remedial, maybe they're progressive pd? all i can say is i'm fine today?!?

    i over did it and it was good for me or .....not?

    tell you frankly, I've been reading about recent innovations by russian neuro scientists where they can control robots with their minds and that's what it felt like, me being the robot.

    my dopamine is hijacked and the robber has a joy stick like?!?!

  • Like you I have good and bad days. If I push myself any my symptoms act up. If I get nervous or upset my symptoms act up. Some days I think I should be going to 4 Sinemet a day instead of 3, other's I'm just fine.

    One thing that has happened to me that I'm very grateful for is that my depression has left. Most all the time I'm actually happy. It's such a wonderful feeling after being so depressed for so very long.

  • You asked how long ago these symptoms kicked in. I can't honestly say. I believe I've had them on and off for many years but they started to be constant the beginning of this year. I remember having real problems during my vacation in March. I was diagnosed in August.

  • feel ok today but balance seriously off, could hardly stay standing......I'll see if exertion was beneficial or neurotoxic in next few days.

    should try glutathione, or NAC. like silverstrov said, it's a no brainer. how come neuros are silent on this?!?

  • Hi I havnt been on here lately I get the same to when I'm not having my tremers on the out side I'm having them on the inside as my dr say to one day at a time your body will go though the mill and it doesn't have to be the tremers I had a bad fall with my suffly feet as I call them and broke my hip so pd is just one tuff road with trying to cope with Meds sides affects pluses all what comes with it . I guess I'm lucky cause my dr is good and truly takes time for me and just my pd .. keep strong 👍

  • I too believe I have a very good doctor only he is not able to take the time most of the time. I blame the medical system for it not the doctor. If they were able to schedule a visit every half hour instead of every 15 minutes the doctors could do a more thorough evaluation and there would be less misdiagnosis.

  • I defo agree with you there .. you can see why people go private sometimes

  • When my husband feels like that he has a small glass of wine and it helps a lot. Mostly he feels like that in the morning. It hasn't turned him into a heavy drinker.

  • Alcohol does not help me at all with inner tremors, I have tried it, but everyone is different.

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