Working Fibro Warriors!: Hello my... - Fibromyalgia Acti...

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Working Fibro Warriors!

Tired-Mama profile image
8 Replies

Hello my fellow sufferers,

I hope the cold weather isn't causing too many flare ups. I am new to this, I have had fibromyalgia for 7 odd years. All started after the birth of my daughter at 21 years old, now at 28 and still battling against the many symptoms I am sick of feeling sick.

I am lucky enough to work in a hospital as an admin member of staff so during my bad times I am able to take on lighter duties, however the fatigue has me often falling asleep at my desk. A colleague has even suggested getting a water pistol to wake me up with when I look sleepy. Does anyone else struggle with this at work? Any tips on keeping yourself less like an exhausted pigeon?

I take Lyrica Pregablin, I find this causes more fatigue and the dreaded weight gain. Has anyone found other medicines or herbal remedies that have working for you?

Any ideas would be greatly appreciated

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Tired-Mama
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8 Replies
YASMINTINA profile image
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., hello there, I think it must be quite hard to get the balance of work , running a house, family, on a daily basis, how many hours do you work and is it every day ? Yes weight gain for me taking duloxtene, but I have been so much better in myself, I know some meds’ can make you even more tired , have you ever tried anything else ?? . Xx

Tired-Mama profile image
Tired-Mama in reply to YASMINTINA

I manage 3 days a week 8-4 just about. Been getting very difficult in the cold though as flare ups are more regular. I haven't tried many other tablets to be honest. I managed to ween myself off as before was on 900mg a day of pregabalin. Now just 100mg.

I live on my own with my daughter so juggling everything is a nightmare at times. Xx

YASMINTINA profile image
YASMINTINAFMA UK Volunteer in reply to Tired-Mama

Gosh you do have a lot to get through, any family help at all with your daughter ?? Yes not looking forward to the cold as will want to hibernate. Your doing brilliantly 3 full days, can you chill out and pace a little more on your days off (i know there’s the school runs) sometimes even having a soak in the bath, or coffee/cake hour or so with a friend, would be good for you just having a little switch off time. My little grandson just been picked up ,2 days Ive had him this week, easy dinner, soak with the Epsom salts in the bath, good film and anything else can wait till tomorrow, little tinker full of it today bless 2yrs 8 months. Xx

Tired-Mama profile image
Tired-Mama in reply to YASMINTINA

I am very lucky my mum is brilliant and helps with melody when im at work and will do her dinner so its a job done for me.

Just spoke to my GP regarding any other help available. Interesting that she says there is little evidence that pregablin even works for fibro and they are reluctant to prescribe it for fibro.

Just me or is just there is no help for it? How many years of suffering to be told there's no help for it.

Hot baths always help, heat in general i find eases pain. Xx

YASMINTINA profile image
YASMINTINAFMA UK Volunteer in reply to Tired-Mama

Yes me too not a shower girl,I have a tv in my bedroom so normally after bath sneak under the duvet at night . Ohh that’s brill having her on board, yes why prescribe it then say it’s not doing any good, I don’t always think they know sometimes, I do pop on here to have a chat and read members experiences, think I have picked up so much more useful info that way. I do have codeine if need be but not every day that will take the edge off . Yesterday I managed to do a bit of weeding outside as Hubbie not a gardener, boy do I know about it today, used to do a few hours a week as a gardener but had to pack it up which was a shame as loved it. I use a bio freeze gel to put on really achy bits, and yes always stack up on some Epsom salts when it’s on offer, the magnesium I think if you can have a soak helps muscle/aches, boots have some on offer at moment. Xx

Tired-Mama profile image
Tired-Mama in reply to YASMINTINA

My doctor is lovely and has known me since i was little so i trust her judgement. She has referred me for an exercise therapy so we will see how that goes.

I have used codiene in the past but had to ween myself off it so much cos they told me it was safe during pregnancy and then had to ween my daughter off it when she was born :( lost faith in it then.

I will keep an eye out for freeze gel. I have used salts before so will need to get some more!!! Thank you x

Reykua profile image
Reykua

Oh my goodness. Just reading your post made me feel exhausted in sympathy.

Fibro is so hard to diagnose that most of us have had to continue working - often for many years, before getting a final diagnosis, trying to push through, fighting on as best as possible with help from workplace adaptations, occupational health, flexi-working, using up all your leave and even taking unpaid days off just to continue working and feel useful.

Most of us have had to just give up in the end but greatly admire Fibro Warriors - those of you who keep going despite the strain, pain and sheer exhaustion.

My workplace Occupational Therapist finally suggested I put myself forward for medical redundancy - I have other health issues as well.

Do whatever you can to keep going until you can't. It's brilliant for your mental health and when you do have to stop, you'll find you'll feel less regret or guilt - which many of us do when we're forcibly consigned to the 'scrap heap' of life as I termed it for the first two years!

Tbh, while working, I lived on coffee, caffeine, cola, coffee and oh yes, more coffee - can anyone spell Red Bull!!!

Very dangerous and unhealthy but I was so desperate at the time and like you, the nature of my work meant I had to be alert, show attention to detail and have good memory recall.

So sorry I've not been of much help. I know others will give you some wise words and excellent suggestions, herbal and otherwise. I was just so triggered by your post!

All the best going forward and stay strong, your daughter needs you.

Loveroses profile image
Loveroses

Hiya. I have to say I am so glad that I finally have lyrica out of my system for good. Yes it dulled the pain but I had no life. I went to work, came home and went to bed. I was distancing myself from my family and my friends. After having surgery on my foot the anaesthetist came to my bedside after surgery and told me to try my best to get off it as every day was like a 2 year hangover. I'm off it now 4 months and I feel so much better in myself. I'm socialising with my friends and my family mean everything to me. As it stands now I have not been put on anything else. I take maxitram 50mg in the morning and 100 at night and co codamol if I really need it. Hope you are feeling better x

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