Question about dystonia

Good Day everyone, I hope you all are doing well!

Pardon my ignorance however I have a question about dystonia, particularly can it come and go? The reason I am asking is that I get this agonizing (to the point its difficult to walk) pain and swelling in my left calf/ankle/foot every month or so and it lasts for about 3-4 days. Other times its in my shoulder, then chest/neck muscles, etc.

Before I was diagnosed with PD I went to a podiatrist and reuhmatologist for this pain and after xrays and MRI's they found nothing and were left scratching their heads. also my other pains were just chalked up to "pulled muscles" and I always thought that odd because although not impossible but how can I pull the same muscles every month (not like im an athlete are anything).

I spoke to by MDS yesterday and she said that it could be from the PD and during my next appointment in a few weeks we will talk about maybe starting some small doses of PD meds.

Have a great day all!!

15 Replies

  • I notice that my dystonia is bad when I eat grains. For me, at least, diet is everything.

  • Interesting correlation... I think many grains support "bad bugs" in the digestive tract in susceptible people... and that "feeds into" the gut dysbiosis and the gut/brain connection for PD. Diet is really critical, but most MDs don't even know how to address that... and it's not a cookie-cutter answer for all either...

  • That's interesting. I was diagnosed with PD 3 years ago.

    About 7 years ago, I had Diverticulitis which burst. That resulted in wearing a bag for 3 months and then re connection.

    About a year later, I started to get pains in variuos parts of my body. I went to Orthopods, and Rhumitologists, was tested for various Myalgias. Nothing was found.

    Now that I'm certain I have PD, I'm wondering if my colon being torn open could have contributed to developing PD?

  • More and more, PD is being linked (in some ppl) to gut dysbiosis (fancy name for "a messed up balance of the gut bacteria population.) I would wonder if the connection to the gut bursting was the antibiotics I'm sure you got when that happened (to prevent infection, etc.) All of those random pains could have also had the same underlying "starting place" too... So much of our immune system seems to be tied to the health of the gut flora population, and I think that has been underestimated in the past (with the advent of antibiotics both taken as meds AND used in food production) and we are seeing some of the effects of it being out of sorts... Just my two cents, from what I read.

  • Yes ir can . Any time anywhere . Often feet first , neck shoulders head back chest

  • Yes, for some of us pain is the number one or two symptom of our PD. If I haven't already noticed a general weakness when my meds are wearing off I will certainly notice the pain in my back. I hope the meds help you! Before I was diagnosed I had a plethora of pain in different parts of my body. Thank goodness for the sinemet!

  • Yes, pain comes and goes at seemingly random times. Sinemet has helped my one sided rigidity enormously (as has Pilates) and greatly reduced my various pains also in left calf, right shoulder and back. Back pain often returns as meds wear off. I don't medicate overnight and can barely move first thing in the morning. Before dx was misdiagnosed with rotator cuff tear, and tested for everything from blood clots to cancer. I kept a food diary for a while but couldn't find any links between diet and pain. Similarly no link (positive or negative) between exercise and pain.

  • Sounds like gout ?

  • If I had to show what dystonia looks like here is my best example:

    Yep, that's me in the morning. He said Sinemet.... oh yes balance issues.

  • Very funny. Can relate to this.

  • I feel you. Have had dystonia since I was 26ish. Now I'm 43 and steadily declining. Doctor started me on Artane. In which constipation among mood changed. Called doctor today for help. It certainly helps very much with mobility and pain, just don't want to be mentally crazy and toxin built up because constipation. Let you know how it goes. For now split my already low dose in half after abruptly stopping it and feel so bad as well. Any solutions about other medications greatly appreciated. Thank you.

  • I have oatmeal for breakfast every morning with a couple of table spoons of coconut oil and it helps to keep things moving.

  • I played the tin man in our ninth grade play. Dx'ed 30 years later. Coincidence?

  • I saw Mohammed Ali light the torch for the Olympics and thought, that poor dude. I am glad that is not my future.

  • Hello Count. I am still sore - I think most people with Parkinson's are to varying degrees (my neck is always a bit sore) feels like I slept on it wrong but it's not debilitating and I did have swelling and problems with my ankle prior to diagnosis however, that went away with my medication. My left ankle is still stiff and doesn't quite bend as far as the other but the pain subsided. My left foot was getting all twisty and painful (I think from too much ldopa) as that symptom almost all but went away when my meds were adjusted down. Now it just feels a little over worked and anxious if that makes sense. Before I was diagnosed I had bouts of bursitis in my shoulder and hip. I realize now this was all related to Parkinson's. You get very in tune with yourself with PD. I think you are going to feel a world of difference when you settle on some medication. For me it really gave me hope and changed everything as I (sounds like you) felt very lousy prior. I chalk some of the aches and pains upto being 46 not 25 however, there are different challenges I think PD people face. You will see, once you are able to and settled on some meds make a few small changes to your diet, do some form of physical activity every day and try if you can to do something like circuit weight training even once a week to start. Something weight bearing even if you I can't join a gym. You ARE going to feel better. It just seems like it's never going to happen while you wait for the meds.

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