Other people experience...advice please

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diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Many of you who have been on here a while will know from my posts that my fibro has deteriorated dramatically in the last 18 months and that i have been housebound and inactive much of that time,due to severe pain and fatigue making walking and all but bare minimum tasks impossible

Today its bright and sunny in the UK and i have risked a short walk as i am going stir crazy.

I mean short...like ten/15 minutes.

Honestly nothing feels like my old fibro! My legs/knees/hips/feet kill before i start and rather than easing out it just gets more and more tight and pain builds in all the joints and muscles my pelvis and girls bits feel like i have been kicked by a horse from the movement.

I've had fibro since 2007 and until 2015 i could sometimes walk around shops, a garden centre or in the country side for about an hour and even then i wasn't in severe pain all the time....sometimes just achy.

No days are like that...it feels so hopeless!

Anyone else like me or been this bad long term.
 
Oh Willow, my heart breaks for you right now.
To answer your question yes and no. From November - February I had only about a week when my meds finally kicked in that I felt any relief, then I started going backwards. I was so bad I considered adult diapers because even if I could make it to the bathroom I wasn't always able to get back up. I ended up giving my son my debit card and pin # because I couldn't go buy groceries. I truely thought life was over and I was begging God every day to just come get me (I thought I was dying. Really)!
I'm curious how long have you resided in your home? When in 2015 did you c a big turn?
ny prayer has already gone out for you, I know how rough it must be. I truely wish there was something I could do to help you right now.
A big gentle hug to you. Get those heating pads out!
 
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I have lived here for 24 years.and only got fibro in 2007.Before that i was as fit as a fiddle drove miles ...walked miles....cut down hedges in my large garden ....very independent...no pain anywhere.

Now I have all my shopping delivered and sometimes have to have someone here as i can't always get up to put it away.

Thanks for replying Eyesup. It was severe stress caused the change...but i can't go into it on here it's too personal.

Your statement i thought i was dying i can relate to not because i have something that's going to kill me but because on top of the pain and fatigue I actually feel so ill at times it feels like you are dying ...so ill you wouldn't even care.

Does that even make sense??
 
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That's something very important, we should not lose or joy to live. No matter how hard our situation is, living is still a blessing and we should look for ways to enjoy it.
 
Stress is a b****, I don't think we were ever meant to endure what long term endorphins and adrenal serge's do to the body. Like a bullet to the brain and heart all at once. I get the too personal, I too have stories I wouldn't share with anyone but my Bff, and that's only because she was beside me through a lot of it.
I was hoping it could have been something in your environment (that could be fixed). I was exsposed to toxic mold while going through some of the worst stress I've ever been through, so now I'm looking into if I had the gene that doesn't chelate mold. (My son has developed many of the same symptoms, but he was alot off the cause of my stress). I have started some natural treatments to clean it out and am feeling better, could just be a fluke and I could be reaching but I'm hopeful.
OP. I know you mean well but I don't think you've had days/months on end of what We are talking about. There is no joy in being in severe pain around the clock for months (you can see no light at the end of the tunnel), a burden to your family, dust and bills piling up around you and no solution to get better. Throw in some personal heartbreaking and/or abuse and what joy? It is a very negative place. Faith and fear of God is the only thing that pulled me through. And I don't know what tomorrow will bring. I'm not trying to be harsh, only to shed some light. I do try to stay Possative.
So yes Willow it makes perfect sense to me.
I admire your strength and your ability to keep going. I hate that even a short walk is becoming so difficult for you. Lounging in the fresh air can be nice too.

OOO
 
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Thanks for the understanding Eyesup...yes i have my hot water bottles with me all the time...three at the moment with fluffy covers....my new best friends when i feel deserted. Wish i could say more but here is not the place for life stories.
 
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I'm curious, where do you used to live before? I ask because my pain seems to be waaaay worse in colder places, like really bad. When I am in the Netherlands everything hurts, but back home I feel better. I think the UK is quite similar to the Netherlands because of all those cloudy and rainy days, but the Netherlands is a bit worse for me because of all those canals. I dread winter for the same reason, funny, as a kid I used to love winter...
 
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