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Return of wierd symptom


Evie
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Hi everyone,

I have been improving quite well over the past few months so much so that i decided to go to the gym (5 mins on treadmill one day, 10 mins next, swim on third day). On the forth day (christmas day) my old most hated symptom returned ... exghasution and burning muscles.

It was a main symptom when i was diagnosed with CFS. The best way to describe this feeling is it feels similar to when you quickly rub sand between your hands and it gets that hot/burning feeling ... but not hot like a oven burn .. more like a friction burn. The worst part about the pain is it makes me extremely irritated and not pleasent to be around. My head tends to throb and i just want to escape it.

My bp seems to be fine at the time. I think its more CFS than OI. I want to get fit but i dont know how to get around this feeling. I cant push through it and keep exerciseing.

Has anyone experienced this feeling or knows any tips how to handle it?

the main way i can battle it is massage and eno's .... but they only help for a few hours

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Thanks Morgan :) Most people dont understand what i mean when i explain and think its just the pain you normally get when you go to the gym but its so much more extreme and interfereing.

I use to have it every day for a few years ... then it has slowly become less freqent... Its return just freaked me out a little. When i was diagnosed with OI i was hoping the treatment would take away those symptoms too but it does seem that CFS and OI can work seperately. Ive been told to exercise (not excessively) to help get rid of OI yet i dont seem to be able to exercise or i get CFS back.

oh i forgot to add that my mother tends to know when its happening as my lips go blue so maybe there is something with the lack of oxygen? do you know how that works or what would cause it? Its not like i can stop feeling sick by taking deep breaths yet intuitively thats what i try to do.

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wow. Not sure about the blue lips. Something to check out. I do know many people that have been in hospital complain of burning and tingling when they need 02. So I know we are not the only ones, and mine tends to happen when I overdo...like walking to the bathroom, lol. Just kidding, but it really hardly takes anything and my muscles will burn like I've just done a marathon.

It would be helpful if you could get 02 saturation levels when your lips are blue. That's just a little thingy they put over your finger. I'd make sure your doc sees this, whether it's cfs or not...morgan

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Thanks for the advice Morgan B)

The annoying thing is that it never seems to happen when i have a specialist appointment and by the time i get an appointment with my GP its gone. Are we able to test the levels at home? my mum is a nurse so she may be able to do it if eqiptment is available.

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Well here they do have small hand sized 02 saturation monitors. You can ask your doc if there's some way you can get one to monitor it. It would be like having a heart monitor, except you wouldn't wear it.

They are about the size of holter monitor, with a small plugged in cord with a dillywopper on the end that just slides over your finger. Dilly wopper, of course, being the technical term, B) .

Anyway, it usually takes your pulse too, but you need to have a fairly warm finger for it to work. It's just a quick assessment of what your 02 saturation levels are. I'm sure if you've been in the hospital, this will sound familiar to you.

In the states you can get just about anything like this from outpatient or a cardiac office to monitor, but i believe you are in Australia, correct. Oh that Russell Crowe, but I digress. I guess I would just ask my doctor if that was possible. You wouldn't even need your mom to do it, it's so easy...morgan

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I also have had periods where my muscles feel like they are burning. When my POTS first began, it lasted for four months or so. I worked through it by basically ignoring it and being determined to get physically in shape. I also have massage therapy and on occasion will take ibuprofen for muscle pain, but it's very rare when I do. I don't know about the blue lips -- mine seems to be CFS-like and not related to anything acute with oxygen levels.

Amy

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ibuprofen does wonders. I use to take it alot but my neurologist said that painkillers are addictive and he tells his paitients to not take them unless its only rare occasions (same with sleeping tablets ... they made me SOOOO much better). Massage is such a life saver isnt it amy :)

Yes i am in Australia Morgan :) I will certainly look into it and see if i can get the device. I think i know what you are talking about but not 100% sure.

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