Hello from Montreal

[MariaC]

I may be new to the forum but certainly not new to the pain of fibromyalgia. I was diagnosed with this in 2009. It originated as a pain in my chest when I tried to run. I had joined a gym several months prior with a personal trainer and was doing great...until I wasn't anymore. My trainer was the one to push me to go see a doctor as she thought I may have asthma or heart problems. I did see a doctor and spent the next 4 months going for all kinds of tests, ECG, MRI, SCAN, Ultrasound. I am also on synthroid for hypothyroidism so I thought this may be contributing to my health issues. Anyway all tests were perfectly normal yet I couldn't do more than 15 min at 4km/hr on treadmill. I used to do an 1 hour at 6km/hr. I refused to believe the diagnosis of fibromyalgia because it seemed so vague? Anyone else feel like this? It isn't physical or concrete and I personally thought this was a psychological problem, so it couldn't be because I had not issues. I was in denial for the longest time...I actually still am most of the time So, long story short...my doctor started me on lyrica and as most people may agree it causes weight gain and foggy brain! I have been trying to stay fit all my life but after pregnancies have been struggling to lose the extra 20 lbs+- so i didn't need the extra weight gain. I stopped taking it after a few years. I've been able to cope most of the year but February seems to be the hardest month. My symptoms flared up a couple of weeks ago and it hasn't gotten better yet. The cold air on my arms feels like ice burning my skin. I know that sounds weird but it's the only way I can explain it. I practically have to put the covers over my head when I go to bed so my arms can warm up quickly but the pain doesn't go away it just tones down a little.
GOSH, it feels good to vent!!! I don't like complaining about it to my family anymore because I only make things sad and uncomfortable They are very supportive but I know they don't have the slightest clue as to how it feels and I've given up trying to explain. Honestly, I don't think I would understand it either. I sometimes get the feeling that people unaffected by this "disease?" think that we can switch the pain off if we tried hard enough.
Don't I wish

 

[Lou38]

Hi Maria. Welcome to the forum. You're right, people really don't understand and when there's nothing obvious to see, a lot of people probably think we're faking it! Fibro is very real & if only we could turn off our symptoms when we wanted to �� I have that burning skin feeling too but in my hands & feet, they feel cold to touch but feel as if they're really hot, very weird! Anyways there's loads of people who can relate and understand what you're going through.
Lou

 

[Dooi]

It's such a common thing you're experiencing. I don't think the weather changes help either; I know here in Ontario we're having the warmest day on record, but welcoming warm weather from such cold weeks isn't always as pleasant for people with Fibromyalgia as it is for others.

As for family and friends not understanding; that's most often the case. I think you're wise to try to limit complaining to those that don't understand. They hear it so different than it's tended. I sometimes think they hear "lazy", "complainer", and "wants attention".

Lastly, welcome to the forum Maria!

 

[diamond]

Welcome Maria...i too identify with your symptoms.....its true our families do hear complainer...i made the mistake of thinking i was just sharing my feelings which helped me only to realize later even those closest to me thought if i stopped worrying so much about the pain it would more or less go away and couldnt be that bad.

I dont consider i complained a lot bearing in mind the pain is 24/7....but i now see we live in a different world and mind set in our heads and dont even notice how much pain dominates our thoughts...as either reducing managing and trying to find ways to still do things despite our pain becomes part of how we are wired..whereas normal folk just jump out of bed with freedom to do whatever they want.

I cant even remember now what that feels like and sometimes say silly protective things to the people i love....as in 'be careful' or ' gosh wont that hurt' when of course it wont hurt them i just see the activity as something different now..like my son carrying a huge suitcase up the stairs..im think ouch his poor back when its all perfectly normal to lug a suitcase no problem.

WE are a separate breed after a few years of fibro..i even once asked my BF who is 20 years older then me who knits for hours...'doesn't it hurt your hands after a while?'

haha i have to laugh at myself at how i see the world..but no this condition is not psychological and i think the public view it is makes us even more disadvantaged..stigma on top of a genuine health condition makes it much harder to bear and for me has caused many problems as i am very sensitive.

Please stay within your new limits and take care of yourself..nothing wrong with doing more as and when you can..take pleasure in your 15 minutes on the treadmill and dont chastise yourself because an hour is not possible.

!5 minutes will still help keep your muscles stronger and better that than do an hour then be collapsed for a week or month.

Vent here any time... gentle hugs

 

[Janette Holzer]

Welcome Maria. I have not had fibro as long as you but I can relate to having pain everyday. I don't know what it is like to wake without pain in my hands and feet and an overwhelming tiredness that lasts all day. Somedays are better than others. I too had a personal trainer before I went down. I was exercising like I had never before and feeling fit then bang. I got a gastro- flu and the rest is history. I do 15mins on a bike and can"t get past it. Walking is better 30 minutes but it's at a slow pace no power walking. Yesterday I walked with my son and he commented " what's wrong with you, your so unfit." I told him " it's not fitness it's fibromyaglia and CFS. "Blah,blah" was his reply. That sounds insensitive I know but his 15yrs old it's hard for him to understand any pain.I do have support but feel the same as most on this forum no one can understand who doesn't have it. It's not something easy to explain you have to feel it to truly understand. Best wishes looking forward to reading more from you.