Dystonia: Get the Facts on the Syndrome and Treatment

We get most of our information about Dystonia from the Dystonia Medical Research Foundation but this article explains it well. “Syndrome” is correct but I refer to it as a disorder. It is rare and this is general information. I have Myoclonic Dystonia or Myoclunus which is the sudden jerking like movements you see in my videos on YouTube. The link to my channel is in the menu. https://www.medicinenet.com/dystonia/article.htm#


This swelling issue has been going on for too long and my ankles, feet and legs hurt. Since it was my first time seeing the new doctor, when I showed her my ankle, she didn’t really act like it was a big deal. My eye she said it would be easier to figure out what is going on with it, if she could have seen it first hand. Like I said in a previous post, she thinks it is my allergies even though I take allergy medicine everyday. She also said that I could have built up a tolerance for the kind that I take and said to rotate this one with the other kind. When my eyes are puffy or almost swollen closed, I am supposed to take the Zyrtec and it should bring the swelling down. No more hot towels according to her.

The pictures didn’t really show how bad the eye swelling was. Since this past Friday when I saw the doctor, my right eye was swollen instead of my left and now both of my feet. Part of my leg too. I haven’t filled the prescription yet or I need to go pick it up from the pharmacy. Both of my feet are swollen as well as my ankles. The swelling had gotten so bad that it had spread up into my right leg just below the knee and all the way to the foot. Everything felt tight when I woke up, I knew something was wrong since I had the same feeling with my eyes. I have limited my activities but still have to go up and down the stairs and that hurts. It is like I am on bed rest but making progress. I can’t do my hair yet because I would have to take a break from that standing with every braid.

I didn’t really elevate them. I didn’t try soaking. My other doctor which is Pain Management doc told me to limit my standing and or walking when they swell and I should be fine. He said it wasn’t a big deal in most people but in someone with my illness it is. I would rather go through the Internal Medicine doctor for this because it is more in line with the type of care she can provide. I also have two doctors that come out to the house at least once a month. One can take a look at my ankles and feet today. His office called yesterday to set up a home visit. I can show them to him and get a second opinion. The other doctor doesn’t want me to have these doctors who come to my house if I am going to be a patient of hers. She says that is like too many cooks in the kitchen but for me it is like a second opinion and a fresh set of eyes. Especially since it is limiting my daily activities at home with my child. She always needs something.

I have two appointments today and one I have to go out the house for. That will be a challenge. I can walk but it is really harder with my feet like this. I picked out all my so called outfits before the pain got this bad and hung them up in the closet. That way I can just grab one and be done. It hurts to even sit here and type this but I am not standing on my feet for sure. My ankles hurt when I try to move them and I can barely move the right one. I would feel a lot better if they were just swollen without the pain. The pain makes it hard for me to concentrate and nobody should have to lay and suffer in pain. I just don’t want to take a pain pill for it. It could get worse with me going to the doctor and coming back and that is when I would need a pill maybe. We all know about the opioid crisis and I don’t want to end up like that.

Everything is weird now with him being at home more. We have had one disagreement or two in the past few days. And they are still calling him to come in. He didn’t give them any notice. He told his boss how he needs things to be again and she ignored him again. Now he is really fed up and a bit cranky. I am lucky I can even use the laptop right now. Hopefully he got us some medicine. It may not be for pain necessarily, but it will help with the stiffness. It’s almost the weekend and I can really get some rest. Staying off my feet makes me feel lazy because it means I can’t exercise like I normally do. Going up and down the stairs all day is part of my daily routine. I do those stairs with pleasure. My Pain Management doctor was trying to put me in a wheel chair and I was not going to except that. I can’t walk normal like everyone else already. I am walking even worse right now. I am going down the stairs just to get water which someone can bring me but I don’t want to be a bother. I am glad that I do have some kind of help. Some people with Dystonia don’t and these Home Health Care Providers need to be getting paid more money for the work they do.

Using fore arm crutches

Doing your blog from your phone is easy but it’s too small for me. I need to update the tablet with these pictures so I can write from it. The website we used the lap top for. I haven’t been able to read any blogs yet. I just got back on WordPress. Thank you for reading and for the likes and follows. I am sharing this on Twitter and Facebook.

I am learning how to use these and carry a purse at the same time. For the doctors appointments. I just woke up because I forgot to take my medicine. Technically I have 3 hours to kill. The water is helping with the dry mouth from the pills so I keep some by the bed.

I told my doctor instead of being in a wheelchair, I wanna use these. These are covered by Medicare but cheaper than the standard. Standard are 8lbs. I can’t lift 8lbs so I could barely use them. These were special ordered. I picked them out on line. Now I am get ready to start my on physical therapy. I just got to look the exercises up for my legs. I need to do them every day now to get ready for spring. I wanna get out the house more this summer.

I can use these but do need more training. The more I go out, the better I get at using them but when I have paperwork, where do I put it. In my purse which holds everything I may need when I am out except a flashlight for a key ring so I can unlock the doors easier. Need to order one.

The purse has all the medical stuff in it. Not too heavy to carry. The more stuff I have to carry, the more challenging it is. I am free for two days before my next appointment and might go out tomorrow. My daughter is going to the Dentist. More practice for me. I have to check the weather. Friday I am finally going to meet my new PCP from my new hospital. Hopefully my blood pressure is better so I can stop taking these pills. They have to keep it monitored now. My hair needs washing but I can wait. It still looks okay with the braid out. Just trying a new product out and waiting to see if I am getting it dyed or not.

These crutches work great for balance. With a Zanaflex, you could train yourself how to use them. It’s not that hard because they are like having two canes and way better than a wheelchair. The blue ones I couldn’t find so these are rather plain. They suggested decorative tape which I did find online. You just wrap it around neatly. I can’t get another cane until it warms up. I am more comfortable using these which I don’t see many people with. If you need some fore arm crutches, go to Drive website. That’s who makes them and I recommend these. 👍🤗