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Sep 15, 2015 2:55 PM

Most of last week I kept feeling like I was going in to a flare of fibro. I don't think that was it, but I also don't know what it was, unless it's the sjogrens flaring: general all over aches in multiple tender points, joints, & muscles all over; swelling and pain of various fingers and thumbs; very dry eyes, nose, mouth, & throat; raspy voice & headaches on & off. I also woke up with dizziness, worse than normal Saturday, the throw me off balance kind. If I stand still I start falling backwards or back and right. That only use to happen if I closed my eyes. After sitting in hard chairs 2 hours Saturday I hurt all over, where it hurt to walk, but it eased up by Sunday night. I noticed my tremors came back with a vengeance on last Wednesday, and the least activity worsens them, like driving yesterday to an appointment.

We went to the grocery store last night. Because it was a smaller store, and I hadn't walked on the treadmill, I decided to push a small buggy. About three rows in I told my husband my legs felt like I was walking on jello or in a blow up funhouse. He watched me walk and said my gait was totally off. We finished shopping and while paying my right hand had jerky tremors. When I got in the car I tried to relax my legs with my knees bent, and every 1-3 minutes my legs jerked quickly. I put my feet out in front, straightening my knees, and I could feel the muscles in the front of my thighs jerk like a spam, then relax. One hour later it was all gone but the tremors, dizziness, and imbalance.

Anyone else ever experienced this? It's happened with some symptom variations, 6-7 times since February, minus the legs jerking when I got still. 🙏🌼

Sep 15, 2015 4:27 PM

I know it has nothing to do wiith this but I had that exact same feeling when I had a panic attack. I have had hundreds of panic attacks in my life but that feeling has only happened once in my life. I would say that happened during my first panic attack. It was the weirdest and scariest feeling I have ever had. I almost felt like I couldn't move very fast. I don't know if you felt that fast. But I felt like I could only go very very slow like you were in one of those bubble rooms. I hope you don't have one of those attacks again. I hope you find out what is causing them soon. Best wishes to you Flappy.

Sep 15, 2015 5:02 PM

Hia im sorry ur having a horrid time :( :( i too am feeling very uncomfy & knee joints are AWFUL!!! & puffy feet, my hands get little tremors but i could b led in bed or sat down & without any warning my legs jerk & i have zero control over it & when right leg does it crikey OUCH as had recent knee op but i get what u mean tho & at times i have to find somewhere to sit down or perch my butt on something & also cocksic sorry cant spell it lol is tender too sending hugs to all xx

Sep 15, 2015 6:02 PM

I know it's not an anxiety or panic attack. My heart rate and breathing is calm. When I have anxiety or panic attacks it feels like my heart is in my throat, and I can feel my heart palpitating. I wish it was because then I could just take my meds. Lol.

When it started in February it was the hand tremors, dizziness and imbalance only. The legs and walking funny didn't start until April or May. It seems like when each episode occurs, there are more symptoms leading up to it. It actually crossed my mind, wondering if it's some type of seizure disorder?

And I don't think it's restless legs, at least not like I have at night sometimes. Then it's usually cramping and constant changing positions due to pain. I sure hope they can give me answers next week at Mayo! 🙏

Sep 15, 2015 7:45 PM

Sounds like a flare for me, especially the swelling and jerking/spasms. My brain goes to CRPS, but that's likely inaccurate. I get dizzy, fall over, feel nauseous, and everything tenses and releases. I usually end up on the four in a fetal position, waiting for my dad to figure out what's up. I can't talk. Can't breathe. That's just what it sounds like to me. Sometimes the hot and cool menthol/aspirin Sunburn stuff helps, but more often I need kava and Magnolia root.
Flappy, keep track of your symptoms carefully. A lot of what you've been describing lately has been the same as me when I was getting taken over by the pain (whether CRPS, lupus, Parkinson's, hypothyroidism, MTHFR issues, POTS, or something else entirely) and losing the ability to do. ... .really anything. Just be careful.
I hope you can find something to help as soon as possible!

Sep 15, 2015 10:27 PM

Have you started a new medication? Are you on any meds that. Have toxic buildup in your system? My friend had symptoms like that from being on a certain med for too long.. Something called acidosis.. I would get to the hospital the next time it happens. That doesn't sound like normal fibro to me. Good luck.

Sep 16, 2015 12:52 AM

My legs get something similar though maybe not as severe. I put it down to muscle fatigue. Mainly my thighs but I get a hot almost burning feeling and the muscles sort of tick. Goes away with rest.

Sep 16, 2015 7:42 AM

Sound like a flair I on occasion go through the same thing it. It's trigger for me is if I am loosing 2-3 p-ounds. I'm on muscles relaxers which help and during that time I put on a body shaper not a tight one just one that feels like I got a shirt on that one size to small or if I put on a diving suite. This helps my body a just eased up on the dizziness so that I didn't fell like I was going to hit the floor when I got dizzy.

Sep 16, 2015 8:49 AM

These are all good suggestions. I started to go to the ER but decided against it since I go back to Mayo next week. I didn't want lots of tests here because the Mayo doc has a lot of tests planned there.

I'm not on any new meds and I had a full list if bloodwork last week. My deficiencies are D, B's, & Iron. I just wondered if anyone had these symptoms too.

Thank-you all! Hope you have a good day! 🙏🌼

Sep 17, 2015 2:34 AM

I get similar it seems like when the pain spikes I get a weird headache, light headed, weak legs, jerking, nausea, ringing in my ears gets lounder and so forth. Sometimes not very long others go on longer. Due to multiple back issues i always wonder if it a nerve thing it is hard to explain. Before I started gabapentin I would get it and fall, other times the extreme pain would sneak up and I looked like I was having a seizure. I told my husband it is like driving along at 40 the hitting the gas hard takes awhile to realize the pain spikes when you always hurt. I am sure you have or will talk to the dr. When I talked to mine I was referred to a neurologist who tested me for Parkinson then told me I didn't have it so I am fine....right. I hope you figure it out I know for me it is a scary feeling.

Sep 17, 2015 9:17 AM

Shammagren, I'm definitely talking to the doctor about it. I'm under a neurologist at Mayo, and here ordered lots of scale and tests by other doctors next week. He is their Parkinson's & MS specialist. He told me and my hubby he didn't want to form an opinion until he gets all the results, but he does feel it may be a brain issue. I'm getting nervous about my visit next week. One physician may have me 6-8 hours for all their tests. I just want answers. I'll deal with whatever it is like I have everything else, with my faith in God for strength.

Thanks for sharing your experience. It's definitely enlightening to hear of others experiences. I oppose you all have a good day! 🙏🌼

Sep 17, 2015 9:36 AM

Flappsy, I have heard that vitamin D deficiency can cause muscle spasms and jerking but from what I understood, it had to be really low. My first thought was potassium. Mine is almost always low and I tend to have jerky motions of my arms and legs from time to time. As I'm drifting off to sleep (when I can sleep) my legs will jerk, an arm or sometimes it feels like my entire body jerks at once. I forgot what the doctor called that (foggy today) but that when you're falling asleep and/or waking. I hope they are able to give you the answers you need at Mayo. They seem to be very willing to go the extra mile so I'm sure they'll sort it out. You're in my prayers my friend, as always.🌻🙏🏻

Sep 17, 2015 9:56 AM

Flappy I hope you get some answers. In today's day and age things should not be this difficult. I feel like everything is a fight, social security, retirement, doctors, strangers right at a time we all don't have the fight and energy in us. I forgot to mention that I told the doctor about my body jerks and she told me I have restless leg syndrome. I thought it was just a leg thing but the medicine seems to help that.

Sep 17, 2015 10:59 AM

AlwayZ, I've never tested low on potassium. My doc checked all those Chen levels, at least every 2 months. I know the word you're talking about but can't find it through the fog...i need a foghorn! Lol

Shammagren, my doc mentioned and dx RLS, but it's different from what I'm experiencing in the daytime, way different. It's scary because I'm not sure my legs weren't going to collapse of throw me off balance sideways.

Thank you both! I'll keep y'all posted on Mayo. 🙏🌼

Sep 17, 2015 11:07 AM

LOL... Foghorn!! Now that's pricess..😊 I can always count on you for a chuckle. I love your sense of humor and how you deal with things as they come. I'll be waiting to hear what Mayo tells you I pray they have an answer for you. Hugs and prayers to you my friend.. Always!! 💕🙏🏻🌻

Sep 17, 2015 12:06 PM

I've had it happen to me, not exactly the same but very close. It happened when I pushed myself way too far, I knew I should stop but I just needed to do a few more things. Then my body told me it was the boss and the shakes, pain, weakness, and more started. I really try to listen to my body but sometimes I just can't.

Sep 17, 2015 5:21 PM

I'm wondering now if it was warning signs, like auras before a migraine. I got my shower and as soon as I finished dressing it felt like I had on a lead bodysuit. Omg! It was all I could do to pick up my feet and walk. I turned cold, grabbed a throw blanket, reclined with the dog and slept 2+ hours. Do I feel better? No, not really. And I'm pale in my face. I'm wearing my Isotoner fingertips less gloves. Great timing with Mayo & all I need to do beforehand. Oh well. Life goes on regardless of pain and fatigue. Hope everyone else has a blessed remainder of the week! 🙏🌼

Sep 17, 2015 5:29 PM

It sounds like warning signs to me, I hope you have an uneventful weekend.

Sep 17, 2015 5:52 PM

Flappys, definetly sounds like a warning sign to me as well. Hugs and thank you.

Sep 17, 2015 6:10 PM

You must have heard it before. Walk walk walk. I find sitting more than half an hour jams my knees, makes me feel out of sorts. I am also doing stretching in the privacy of my own home. Its helping. Yes i Have muncle pain but i know it will subside. With the walking and stretching i have lost five pounds. It does help.
sitting and being sedentary for anyone is not good better fir your heart and lungs.
Good luck. Take it slowly. One day at a time hugs to all

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