Old 02-27-2017, 04:48 PM #1
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Unhappy Do you experience a reset in activity tolerance??

Hi folks,

I've been sick for about a year now, and my doc has finally given me a "tentative" diagnosis of fibro. I really wanted the opportunity to speak with folks who have the condition and find out if what I'm experiencing falls in the realm of fibro possibility I guess.

Last February, I was diagnosed with a stress fracture in my foot that required me to stay completely off my feet for two months. When I resumed activity, I noticed that I was getting dizzy very quickly with even mild activity, very tired and such. Previously, I'd been a runner, Crossfit nut, burn the candle at both ends sort.

It's taken almost a year of tracking my symptoms, but I can safely say now that I get a big flare up in dizziness, pain, and extremity burning/tingling when I experience a change in my activity levels.

The very frustrating thing is that in November I started a new retail job, and over the course of the past three months, I've had to fight through the dizziness, pain, etc, to get reconditioned to activity, which I did. I made a vast improvement. However, I got sick with a bad flu three weeks ago, and had to spend a week in bed recovering.

When I got back to work, it was like my dizziness, pain tolerance, activity tolerance had all set back to zero! I couldn't believe it, it was like I'd done no work at all and made no progress! It's incredibly demoralizing.

I spoke with my doctor about it and she said it sounded like fibro. She said that this sort of "reset" can happen and that it's very important for folks with fibro to maintain at least some amount of activity every day. She also said that a good sleep schedule is important, as well as slow, self-directed activity. She said consistency is key to staying healthy, and that if you push yourself too hard OR take too much time resting, it can cause a flare up.

So here are my questions for you:

1) Is dizziness with activity a known fibro "thing"? It's been the one consistent thing for like this whole year. When I increase my activity, the dizziness flares up.

2) Has anyone experienced this "hard reset" when having to take a week of rest? Have you lost months of progress? If this is a known phenomenon, how the actual frick do you DEAL with it? I feel so depressed at the thought of not being able to take a vacation from the constant go go go if I want to keep what little progress I've made.

Thank you so much for your thoughts and input, much love to you all and good wishes as you work with this illness.
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Old 02-28-2017, 05:06 AM #2
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Default Re: Do you experience a "reset" in activity tolerance??

Hi,

First of all, welcome to the forum. It is a safe place and a place of understanding - you will, I am sure, find out for yourself as well.

To answer your questions; I personally experience dizziness from time to time, but it is different from the one you experience, I think. Mine is probably vertigo. It happens whenever I lay down, turn around in bed, get up from bed etc. It comes on for 2 weeks and is gone for a month, then back again. I know whenever I have it, I have to take it slowly, especially getting out of bed/from a chair.

It is best to see a doctor about your dizziness, especially if it can cause dangerous situations. And before you go to a doctor, I would record exactly when this dizziness happens, how it feels etc. A google search might give you an idea as well. But a doctor is of course the best.

I think almost everyone experiences a reset whenever they take it slowly. Say you run 3 times a week for years and then you go on a 'lazy' holiday for 2 weeks and when you get back, you'd have a hard time picking up your pace again. But of course what most people experience can be seen as 'subtle' compared to what a fibro patient goes through.

So yes, I have also experienced huge setbacks when I thought I was doing the right thing - resting during a cold/flu, or after a week on a busy city trip (something I have completely given up on). I found out that total rest is simply not the answer to my complaints. I need to stay active, somehow. So no matter how bad/exhausted I feel, I always try to go for a walk. 10 minutes, 15 minutes, whatever I can get in, I try real hard. I also try to do many stretches, some basic yoga moves, or simple tasks around the house.

Your diagnosis is pretty recent, so as time goes by you will get to know your new 'self/body' better. I will be honest, it will come with lots of set-backs and hopelessness, so it is very important to focus on what you can do instead of what you cant.

I wish you all the best....lots of positivity
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Old 03-01-2017, 04:12 AM #3
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Default Re: Do you experience a reset in activity tolerance??

I get pretty bad vertigo at times, but it's difficult to predict. It's often when I stand up after being horizontal, which I think is normal. Though, for me, I think it's related to poor blood flow (cold feet, cold hands, vertigo). I never remember to stand up slowly, which should help. Vicky is right though, it can be very dangerous in the wrong situations. Specifically if it comes without notice.
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Old 03-01-2017, 02:53 PM #4
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Default Re: Do you experience a reset in activity tolerance??

Hiya. Sorry to hear you've had such a setback, it's so demoralising. I can't comment on the dizziness as this isn't something I experience but I can relate to a flare following a period of inactivity. My pain is at its worst when I'm inactive but then it's so hard to build up your fitness again when struggling with daily chronic pain. It's very difficult to find the right balance. In September I did a 50 mile charity cycle, right now I'd be lucky to manage just 10 miles, it's so frustrating and I'm struggling to get my head around it too. Just build up any exercise really slowly, be patient (something I'm not lol) and try to listen to your body.
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Old 03-17-2017, 04:20 PM #5
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Default Re: Do you experience a reset in activity tolerance??

I was exercising, trying to get in shape months ago and had gradually built up a bit of strength, then I injured both my knees. I started physical therapy on them yesterday and did about a one hour workout and was pretty wiped out with headache, dizziness, fatigue, incoherence afterward. So yeah reset back to zero was how I felt too. Hoping it gets better.
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